Six Months Post Mastectomy

WARNING: This post contains photos of my mastectomy scars. Skip this one if you’re likely to find that upsetting.

It’s the eighth of February today. That’s six months since my mastectomy.

Anniversaries take on a new significance when you’ve had triple negative breast cancer because our highest risk of recurrence is within the first three years. By the end of five years our risk has dropped to the same as everyone that’s never had breast cancer. It’s one of the few consolations for having a form of breast cancer that’s typically described as ‘more aggressive and with a worse prognosis than other breast cancers’.

I thought you might like to know how I’m travelling.

In a word, brilliantly!

My wounds are almost (but not quite) fully healed. I’ve been surprised by how long it takes. There’s a period of rapid healing immediately after surgery, as I expected, but then there is also a long, slow healing where the scar tissue gradually loosens up and improves in both appearance and sensitivity.

I still get strange electrical pings from time to time, but nowhere near as often as I used to. The tightness around my chest had greatly improved, particularly across my back. Following surgery I had a strange stabbing pain in the centre of my back when my bra fastening used to be. If I rolled my shoulders forward it was worse. That’s completely gone now. So is the mysterious stabbing pain on the outside of my upper arm near the shoulder. My surgeon, Kylie, described both as ‘referred pain’ and I’m happy to be over it.

How to describe the sensation across my chest? I think if you took something like a clay mask,  spread it over your chest and let it dry you’d be approximating the sensation. It’s a little tight, but not painful. Kylie warned me that my chest would get tighter over time and then it would ease. I’m at the happy end of the easing process with hopefully a little way to go.

As the skin has loosened away from the muscle it’s become more comfortable. You can see from the photos that there’s now a little bit of a droopy bit, particularly on the right hand side. I joke with my husband that my breasts are growing back. Actually, it’s a good thing because I now look less like a mastectomy patient and more like a naturally flat chested woman. I’m doing some hand weights to build up my pectoral muscles and to give me a bit more of a natural shape.

Having said that, I’m now completely comfortable with my flat chest. I’ve had a lot of fun replacing most of my old wardrobe. My two favourite ‘looks’ are a beautifully patterned cotton shirt over a singlet with long pants, or one of those box shaped dresses that sits just above the knee. I didn’t feel comfortable wearing shorter skirts before my surgery but now I enjoy putting my ‘yoga legs’ (as Graham calls them) on display. I’m accessorising with beautiful scarves and long necklaces which now sit beautifully thanks to my dolphin chest.

The only pain I have is from arthritis in my hips and shoulders (which I would have had anyway) and the peripheral neuropathy in my hands. They are very sore when I first wake up but improve quickly with my morning yoga.

My recent followup appointment was with my radiation oncologist, Andrew. He reminded me that I shouldn’t give up on the peripheral neuropathy and that sometimes nerves take a very long time to regrow. He suggests waiting a decade before calling it quits. This is great news because Rachel, my oncologist, has warned me that whatever I had twelve months after chemotherapy I would probably be stuck with for the rest of my life. It’s not really a big deal either way. I can still type, obviously, and last week I finally returned to playing my cello.

It’s made me very happy to discover that in spite of the numbness in my fingers, the need to completely reposition my instrument and the poor playing that results from two years without practice, I can still read music and make a beautiful sound. The challenge now is to return to daily practice. Like so many things, the cello requires a regular small investment in order to reap returns.

Andrew and Rachel are in agreement about what we thought was recurrence. It’s likely that this was actually DCIS left behind after the first surgery rather than new cancer. Why does this matter? Well, there’s a huge difference between a bit of old cancer still growing away and a whole new outbreak of the disease, particularly in terms of my long term survival odds. Although I was initially shocked at the possibility that my surgeon had made a mistake I now consider it to be serendipity, a happy accident.

You see, what we know, thanks to Kylie’s ‘mistake’, is that the cancer I used to have was resistant to chemotherapy and radiation therapy. It is almost certain that I would have needed a mastectomy at some point. Having it when I did meant the tissue removed was free of cancer and that greatly contributes to my future survival. You don’t get better margins than ‘no sign of cancer in this tissue’. If Kylie had removed a bit more tissue in the first surgery I would still have potentially lethal breasts with no guarantee that we would have caught the recurrence before it had spread to vital organs. Everything has turned out for the best.

I know Kylie still beats herself up over leaving the clip and some of the tumour bed behind. I’m glad I’m not a doctor. They are human like the rest of us and that means that, sooner or later, they will make a mistake. It’s unavoidable. A world where it’s safe for them to acknowledge that and talk about it is a safer one for all of us. It’s not a metaphor when people say that doctors often bury their mistakes!

It’s an interesting thing to come face to face with your own mortality. Last night I lay in bed thinking about a new blog called ‘We are all dying’ or ‘live like you’re dying’ because I now believe that when you really understand this, all the way to your temporary bones, life becomes richer, more precious, more meaningful………if you let it!

It still sneaks up on me at odd moments. My husband and I will be watching something on the television and laughing or joking about it. I’ll suddenly feel overwhelmed by my love for him and all he’s done and been since I was diagnosed. One day we will both be gone. That makes being here so much more beautiful.

When we’re intimate I sometimes weep with the wave of emotion that floods me. He touches these scars as if they were precious. You’ll notice that the photos are the right way around for this post because I finally felt okay about asking him to photograph them rather than using a mirror and taking them myself. The photos still shock me. From this side of the scars it’s easy to forget. Graham has just adapted to incorporate this new version of my body. He’s so grateful that I survived. He loves me.

My daughter returned from Europe and we have two precious weeks before she returns to university. I want to follow her around and embrace her randomly. I am so proud of her. She could have walked away from her studies without anyone criticising her because, after all, her mother had cancer. But she stuck it out. Her marks dropped but she still managed to pass two of the hardest subjects of her degree. Because the last eighteen months for me have been about surviving I haven’t been able to support her as I would like to have done. Now I can.

Her physical and emotional health have suffered. She’s working on being well. It’s been a shock to her to contemplate a world without me in it and it shows. I wonder if she’s realised that, like me, she is also temporary. Maybe that’s not a concept you need to come to terms with in your twenties although I know from the many young breast cancer survivors I have met that there are plenty who do. I pray for a cure. I pray for a future where she doesn’t have to fear my genetic inheritance.

My six month anniversary present was news from the Mayo clinic in the USA. They think they might have a vaccine that prevents the recurrence of triple negative breast cancer. I want to put fifteen exclamation marks on that. I still cry with joy when I watch this:

http://www.usatoday.com/story/news/nation/2015/02/03/mayo-clinic-triple-negative-breast-cancer-drug-trial/22785941/

It’s too soon to call this a cure. They’re just starting trials and the trials may yet prove that the treatment doesn’t work, but hope is like rain in the dessert when you’ve had cancer.

So, as always, here’s the photos. This is what my body looks like after six months of healing and taking very good care of myself.

P1070195 P1070196
P1070194As you can see, the puckering to the left hand side is much better and I’m reasonably confident that this is going to keep improving. I’m seeing a massage therapist that specialises in oncology at least once a fortnight and sometimes more often than that. I highly recommend it. I’m also brushing my torso with my hands each night to help promote lymphatic drainage. The lymph system sits just under the skin so you really just pat yourself like you would a cat, with long strokes down the body. I can feel the lymph moving when I do this. It’s a mild tingling sensation. I’m hoping this helps me to avoid lymphedema, a common complication of cancer treatment.

The skin on the left hand side is also much better. This skin was damaged by radiation therapy and that’s why you can see such a marked difference between the two sides. You can also see the arc of a scar from my original breast conserving surgery above my mastectomy scar. I’ve been using macadamia or hemp oil, perfumed with essential oils, after my shower and that’s helped.

The question I get asked most often is “Will you be having reconstruction?”.  My answer is still “No”. I am very happy with my decision to do the best thing for my health and have the least amount of surgery possible. Even with all of the weight I’ve lost I still have a little bit of a belly. I’m very happy to have it sitting where it has always sat rather than having it surgically relocated to my chest, with all of the risks, pain and recovery time that would have involved. Just the thought of more than ten hours under anaesthetic was reason enough to avoid it but I’m also happy about not having any more scaring than was medically necessary.

Everyone makes their own decisions on reconstruction and, if you’ve decided to have it, then I sincerely hope you are as happy with your choice as I am with mine.

I’m still not inclined to wear ‘foobs’ (fake boobs). I don’t think there’s anything about my appearance that need ‘enhancing’. Of course, I’m also the kind of person whose happy with my prematurely grey hair, my glasses over contact lenses and my habit of saving makeup for very special occasions. There are some clothes that I know would look better with a bit of a mound. Perhaps, in time, I might have a look at something to go under evening wear but so far, so good.

Emotionally I’m feeling great. Thanks to Russ Harris and the ACT skills I’ve been practicing I now have an effective method for dealing with fear of recurrence. Losing 14 kilos since surgery (and only two of that was actually cut off me) has made me very happy but it’s really The Fast Diet that’s been a major contributor to my emotional well being. I am now in a healthy weight range because of a method that’s sustainable for the rest of my life. I can still enjoy great restaurants and the occasional take away without fear or guilt. The evidence on the benefits of this way of eating and the implications for those of us seeking to avoid cancer continue to mount. I am certain that I am doing the right thing for myself, my body and my family.

I know it’s still possible that the cancer could come back. Cancer is like that. But I don’t dwell on it. I enjoy my life. No, it’s more than that. I CHERISH my life, because I finally understand how precious it is.

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Is There a Fast Way to Reduce Cancer Risk?

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Here’s a quick quiz. How many of the following statements do you think are true?
1. Fasting is bad for you.
2. If you don’t eat regularly you’ll get low blood sugar and feel tired
3. You can’t exercise if you’re fasting.
4. You must eat breakfast to ‘kick start’ your metabolism.
5. Losing weight is simple a case of energy in, energy out; reduce the amount of food you eat and increase the amount of exercise you do and you are guaranteed to lose weight.
6. Fasting will promote binge eating.
7. Fasting will promote eating disorders.
8. Going hungry will make it difficult for you to concentrate.
9. You can’t sleep if you’re hungry.
10. Weight gain is unavoidable with age.
11. Losing weight means giving up food you love.
12. Over weight people are just making excuses because they are greedy.

For me, cancer has been a lesson in holding my opinions lightly. So many things that I was sure of have been flipped. The most recent example is fasting.

I can remember a friend trying to convince me of the benefits of fasting over ten years ago. I dismissed her arguments and ‘new age nonsense’ and put fasting in the same basket as alkaline and ketogenic diets. I’m a skeptic. I need evidence.

Then a couple of months ago when we were channel surfing I found a story on the Sunday Night program about intermittent fasting. It included an interview with Dr Michael Mosely who made a documentary for the BBC a couple of years back following his investigation of fasting. With Mimi Spencer, he wrote a book about what he discovered. Here’s a link with a pretty good description:

http://www.booktopia.com.au/the-fast-diet-mimi-spencer/prod9781780721675.html?source=pla&gclid=CjwKEAjwtIShBRD08fKD1OWSik4SJAAuKLovgENgBkfcr5B9jRV2vQjPVCEN_BsMJA6t1GlDkSfwohoCn1vw_wcB

I gained about ten kilos during chemotherapy and at the time it was a source of distress. My beautiful daughter reminded me that my body was fighting cancer and that I shouldn’t worry about extra weight. She was right. I stopped obsessing about it.

I also got back into my daily yoga habit. You can’t downward dog on a full stomach so postponing breakfast became normal. I usually eat what I call my ‘super porridge’ around 10.30am. I’ve also been tired so I’ve been eating dinner around 6.30pm and going to bed early. Without planning to I’ve been creating a much longer gap between my last meal and my first meal. Two things have happened. The weight that I gained during chemotherapy has gradually disappeared  (not counting the two kilos they removed from my chest!), and my appetite has reduced to the point where I rarely feel particularly hungry and I never feel ravenous.

Without intending to, I’ve been adopting one of the behaviours that research now tells us can permanently reduce weight and improve health. I’ve created a ‘fasting window’.

It occurred to me that I was naturally thin when I was younger. My weight problems came during pregnancy when I was told I MUST eat breakfast. Up until then it was my habit to have coffee in the morning and not to eat until lunch. While I was breastfeeding there was also the breakfast mantra. Now it seems the experts were wrong. Or perhaps more accurately, the advice was incomplete.

If you’re a ‘breakfast person’ then you should eat it. If you’re not then you shouldn’t feel guilty about skipping it. And regardless of your age or your weight, it seems that fasting is good for most people.

What’s most appealing to me about this way of eating is the rigorous science behind it. Most diets work for some people for some of the time until, almost inevitably, they regain the weight they lost (and then some). This diet involves a permanent change in eating behaviour that most people find relatively easy and sustainable. You won’t just lose your saddle bags and your muffin top. You’ll also drop the fat that’s around your major organs and this weight loss has all kinds of health benefits, including a reduction in your risk of developing diabetes.

Eating this way gives my body time to repair itself. When we eat our body manufactures new cells. When we fast for long enough it triggers our ‘repair mode’ and the body not only draws on our fat stores for fuel, it also cleans up damaged and unwanted cells. You can imagine what exciting news this is for anyone prone to cancer. My damaged cells can kill me.

We now know that most of us have cells with the potential to become cancer circulating our bodies all of the time. Yes, when I say ‘most of us’ I mean potentially any human on the planet and not just those of us with a history of this disease. In order for these damaged cells to become tumours they need to trick the body into providing them with a blood supply.

Of course, most of these cells get killed off by the body as part of our normal process of cell rejuvenation. Now it seems that intermittent fasting boosts this process. That means that changing the way we eat could have huge benefits for cancer patients.

Fasting also increases our white blood cell count and boosts our immune system. It helps to reduce insulin type growth factor, which is important because high levels have been shown to correlate with a higher risk of cancer. Here’s an article summarising some recent research:

http://news.nationalpost.com/2014/06/05/fasting-for-three-days-renews-entire-immune-system-protects-cancer-patients-remarkable-new-study-finds/

After checking the research I am convinced that intermittent fasting has the potential to reduce my risk of recurrence. My husband was also keen to try a 5:2 diet to lose the extra kilos that he’s put on during the last year so about six weeks ago we both started limiting our calories for two days a week.

We chose Tuesdays and Thursdays as our ‘fast days’. You can choose two consecutive days but most people find this harder than breaking them up. On fast days, Graham likes to have breakfast which is usually some kind of vegetarian omelette. I prefer to save my 500 calories for one meal at dinner time. I’ve found that it’s easier to not eat at all during the day. I love that this way of eating is so flexible and that you can adjust it to suit your preferences.

Dinner on fast days is a big pile of low starch vegetables (leave out the potatoes and corn) topped with a small serve of protein. We often have fish because it’s low in calories and I don’t eat enough of it. We’ve also had eggs, tofu, organic chicken and grass fed organic lamb or beef.

Graham gets 600 calories by virtue of his gender which means that once he’s had breakfast I’ve got plenty of room to make us both a delicious dinner.

So how are we going?

Well, a girlfriend came to visit me this weekend to take me out to my favourite restaurant as a late birthday treat. I sat enjoying the view out the window of the ocean and tucked into my goats cheese tart with duck breast followed by a giant pork chop with heaps of vegetables and thought “This has got to be the best diet EVER!”

When my daughter turned 21 I finally admitted to myself that the in spite of all the dieting and exercising I was just going to have to live with ten extra kilos for the rest of my life. I did, once, manage to get back within my BMI by attending weekly Weight Watchers meetings and obsessively measuring and counting everything but I was so miserable that it was unsustainable. What a great business model they have; any loss is their credit and any gain is your fault!

My daughter has a similar metabolism. I’ve seen her eat like a bird and train like an athlete only to be distressed by the lack of any movement on the scales.

The thing I love the most about The Fast Diet is that it has finally exploded the whole ‘energy in-energy out’ myth of dieting. Ask anyone whose battled their weight long term or any honest personal trainer and they will tell you that it’s just not that simple. Traditional dieting ultimately makes people fatter.

What’s worse than the lack of results on the scale are the thin people that spout “You just need to eat less and exercise more!” as if you weren’t already doing that. The implication that you are just being untruthful about your vigilance is offensive and demoralising. You give up. You eat a bar of chocolate. You may as well, because people assume you are anyway.

So you can imagine my excitement when (drum roll please) the scales showed my pre-pregnancy weight! I’m so happy I’ve become evangelical. We are not ‘big boned’. We do not have ‘a slow metabolism’. We are not weak, lazy, self delusional or greedy.

The first couple of weeks of fasting required some commitment and a bit of effort but it was much easier than I expected it to be. Yes, I was hungry. So what. Every diet I’ve ever tried required me to feel hungry but I was required to feel it every bloody day! Two days a week? No problem!

What makes it really easy to get through fast days is this phrase: “I’ll eat that tomorrow.”

You see, the wonderful thing about The Fast Diet is that you don’t count or restrict anything on your other days. Yes, you read that correctly. No calorie counting. No portion control. No using matchboxes or your palm to measure serving sizes of the food you love. The authors recommend that you eat a healthy diet most of the time which is high in vegetables, includes some fruit and good quality protein but you can also include occasional serves of the foods that are usually forbidden.

I’m thinner than I’ve been in twenty two years and I did it while eating pizza, French cheeses, gourmet dinners, decadent desserts and the occasional hand full of potato chips. On the recommendation of the authors via their Facebook page we suspended fasting over Christmas, both gained a couple of kilos and then lost them when we fasted the following week. You can see why they call this ‘The Foodies Diet’.

I have other reasons for eating well most of the time. I know that good quality whole foods can contribute to my health and reduce my risk of occurrence. I also know that eating well affects my mood, my energy and my appearance. But The Fast Diet means that I can finally enjoy food again without any guilt. I can have an evening out at a beautiful restaurant and not use kilojoules or fat content as a criteria for menu choices. For someone like me who loves fine dining this is close to miraculous.

Apart from the weight loss I think this way of eating helps to educate your subconscious; hunger is not going to kill me.  Like other people on this diet, I find that hunger does not increase throughout my fast days. It comes in waves. It peaks and subsides and it’s no worse at the end of the day than it was in the morning. It’s about as uncomfortable as a small stone stuck in the bottom of your shoe. Mildly annoying. Not more than that.

This is not a starve and binge strategy. Although I expected to be hungry the day after a fast day I actually stuck to my usual routine of a late breakfast. I have found that I am just not as hungry as I used to be and that I naturally eat less. Although I had no hesitation in ordering a pork chop for lunch I chose not to eat all of it and I passed on dessert. On purpose. My choice.

I’ve also lost my sweet tooth, perhaps because fasting has starved the sugar-eating bacteria in my gut. (Another recent Catalyst program explained that this bacteria can signal our brain to crave more sugar.) The research confirms that people don’t overeat after a fast day. That’s part of why this strategy works so well.

For the first few weeks, fast days were a challenge. I avoided anywhere that sold or stored food (including my kitchen) and kept myself busy doing things I enjoyed. I slept late and went to bed early in order to shorten the day. I felt occasionally ravenous but then I would distract myself with something, have a nice big drink of water and the feeling would pass. It reminded me of giving up smoking.

Now to my surprise I actually enjoy fast days. Apart from being seriously impressed with the results (12 kilos gone and counting) I find I have plenty of energy, I think clearly and I don’t ever suffer from ‘low blood sugar’ fatigue, which, it turns out, is just one more dieting myth that this research has exploded. Think about it. You go to bed every night and go without food for seven or eight or nine hours. You can usually add in the couple of hours you didn’t eat before you went to bed. Do you wake up feeling light headed because of low blood sugar? Ironic that this diet might be the way to avoid diabetes.

Some of the recent research is showing that athletes actually perform better if they fast before competition. The guy that wrote the book on ‘carb loading’ is now apologising and advocating a different approach. It makes sense that as an animal reliant upon hunting to provide our food, fasting would trigger improved athletic performance.

I’ve only got another two or three kilos to go and then I’ll cut down to one fast day a week for the rest of my life. It’s clear that this is one way I can actively help my body to avoid cancer in the future.

If you’re interested, here’s a great article by Michael Mosely:

http://www.independent.ie/life/health-wellbeing/the-fast-way-to-lose-weight-live-healthily-and-fight-ageing-30600623.html

5:2 is not the only way to fast. Some people find it easier to limit their eating to an eight hour window each day. This is usually referred to as the 8:16 diet. You might, for example, have your first meal of the day at 11.00am and your last meal at 7.00pm. Eating this way gives your body a fasting window where it can switch to repair mode. The biggest difference with 8:16 is that you need to eat this way every day (some people take one day off a week) for the rest of your life. It’s a personal choice whether you prefer 5:2.

There’s also the option of doing a three day continuous fast every month. If you prefer this, you need to be aware that this is a serious fast and not just the calorie restriction you get on the 5:2 diet. Most people doing a three day fast have only water or herbal tea. Some have clear soup or broth. I know people that combine a monthly fast with some kind of spiritual practice such as a retreat, meditation, yoga or prayer. It’s about a lot more than diet for them, but a spiritual aspect is not a requirement. I think the most difficult thing about three day fasting is fitting it into your life. Few of us can walk away from our lives for three days every month and trying to maintain an extreme fast while friends, family and co-workers are enjoying meals would be difficult.

I’ll probably do a three day fast a couple of times a year for the health benefits.

Regardless of which model you choose, fasting is good for you.

I’ll add my usual caution here. If you’re currently having treatment then discuss any diet changes with your doctor and please, do your own research. If you’re having chemotherapy then it’s worth googling ‘chemotherapy and fasting’. There is evidence that fasting might help to make chemotherapy less toxic to the body and more effective. Ironically, the chronic nausea and loss of appetite could be part of the reason chemotherapy works at all.

If you sent me a message saying you had just been diagnosed and asking my advice then part of my response would include a recommendation that you fast for three days. If I could go back in time that’s what I would do. It’s possible that fasting might just help our bodies to fight active cancer.

This is a fascinating area of research and one I’ll be keeping an eye on.

So here’s a short list of the ideas I’ve now consigned to the rubbish bin:

1. Fasting is bad for you.
2. If you don’t eat regularly you’ll get low blood sugar and feel tired
3. You can’t exercise if you’re fasting.
4. You must eat breakfast to ‘kick start’ your metabolism.
5. Losing weight is simple a case of energy in, energy out; reduce the amount of food you eat and increase the amount of exercise you do and you are guaranteed to lose weight.
6. Fasting will promote binge eating.
7. Fasting will promote eating disorders.
8. Going hungry will make it difficult for you to concentrate.
9. You can’t sleep if you’re hungry.
10. Weight gain is unavoidable with age.
11. Losing weight means giving up food you love.
12. Over weight people are just making excuses because they are greedy.

All of these are WRONG. Imagine my delighted surprise!

 

My Last Post, Gabapentin and the Bleeding Edge

A few things have happened since my last post.

Firstly, my friend, Shelly, contacted me to make sure I was okay. Something about the post worried her. She thought it sounded like I’d given up while at the same time being sure that I never would.

Then a couple of days ago I made this comment to my husband:

“You know, I can understand why people with cancer decide to suicide, even when they haven’t reached the point where they are terminal. I used to see cases like this when I was a cop and it always confused me. Why give up when there was still hope? Now I understand. It’s about control. It’s a way to avoid this endless uncertainty and the potential cycle into a long, slow death. It’s a way of beating the cancer because you can decide when you’re going to die rather than letting cancer do that……..not that I’m thinking about suicide. Not yet. But I might in the future. I never understood all of this before now.”

Wait. Did I just say ‘suicide’?

When I was a police officer working in child protection I sometimes used to speak to groups of parents about their teenagers. One of the pieces of advice I gave them was to always treat any conversation about suicide as a flag, even if that conversation was hypothetical or third person. Conversations that seemed to accept suicide as reasonable should ring alarm bells. Further investigation, probably with the help of a psychologist, was the best course of action.

So some part of my brain raised a tiny flag. Shelly’s comment prompted me to take a moment for self analysis. I knew I hadn’t given up but something was definitely going on. I had burst into tears when I went for a massage. I had left there and gone over to my Mum’s place and had another good cry. I wanted to put this down to some kind of natural grief process. It would be reasonable after everything I’ve been through. I’ve been practicing ‘Acceptance Commitment Therapy’ techniques and making room for the sadness rather than fighting against it, which would have been my habit previously.

My brother came to visit with his wife and adorable son. I found myself hoping that he wouldn’t say, “How are you?” because I would have burst into tears. He didn’t. The minute they’d left I wanted him to come back and ask me. I put it down to just feeling blue but when I ran my own personal audit I realised that something was off.

You might recall that my surgeon recently prescribed gabapentin for my nerve pain and peripheral neuropathy. This seemed to be effective when I was in hospital. She prescribed a lower dose and it really didn’t seem to be making any difference. I googled it. This is part of what I found:

In 2009 the U.S. Food and Drug Administration issued a warning of an increased risk of depression and suicidal thoughts and behaviors in patients taking gabapentin, along with other anticonvulsant drugs modifying the packaging insert to reflect this. A 2010 meta analysis confirmed the increased risk of suicide associated with gabapentin use.

So first of all, what packet insert? The packet I have says “Take as directed by a physician” and the pharmacist issuing it said, “Do you have any questions?”  That’s the sum total of the information I received. I wasn’t worried because I’d already had the drug while I was in hospital without any adverse reaction. Of course I was simultaneously off my dial on pain medication.

When I saw my surgeon today and told her about his side effect she replied that I’m the first patient she’s ever had with that kind of reaction. I wonder. Maybe I’m just the first relentlessly optimistic patient for whom any hint of suicidal thoughts raises an alarm.

I stopped taking it yesterday. The sun came up this morning. My black mood lifted. I am myself again.

I wanted to write this post as a warning to anyone else on gabapentin, or anyone caring for someone taking it. Monitor your mood carefully. ANY thoughts about suicide, even hypothetical or third person thoughts about suicide, should be taken VERY seriously. Talk to your doctor.

The other thing that’s happened in the last few days is that a number of people have brought this story to my attention:

http://medicalxpress.com/news/2014-09-breast-cancer-specialist-advance-treatment.html

In summary, it’s about the success of stage three trials in the USA where they’ve added new medications to the chemotherapy for women with triple negative breast cancer and greatly increased the number of women achieving a full pathological response. A full pathological response means complete tumour death prior to surgery and it means that your survival odds improve dramatically, your risk of recurrence decreases and so does your risk of metastatic disease.

I didn’t get a full pathological response.

It looked like I might, but I didn’t.

If you read my last post you’ll probably recall that I spoke about the ‘bleeding edge’ of cancer research. It’s possible that if I was diagnosed this year instead of last year I would have been offered this treatment. That makes me sad.

It gets worse.

Because I’m the kind of person that researches everything I was aware of this research when I started chemotherapy. I took a copy of a report on it to my oncologist the second time I saw her. I wanted to know if it would be possible for me to have these drugs added to my chemotherapy because the early trials had been so promising. It wasn’t.

This is what it’s like to have cancer, to survive cancer and to face the future risk of cancer coming back. Timing can be everything. Location matters too. Most of the research into triple negative breast cancer is happening in the USA and the UK. That makes me sad too.

But what it doesn’t make me is suicidal!

 

Why I’m Not Having Breast Reconstruction

TRIGGER WARNING: If you’ve had reconstruction you might not like this one. Please know that this is a post about my personal decision regarding my own body and it is not intended to cause offence or distress to anyone that has decided to go ahead with reconstructive surgery. I love lobster. My daughter can’t stand it. If you ask her she’ll describe it as revolting. That’s her experience and a legitimate expression of her opinion. I don’t take it personally or as an attack on my lobster eating. So it is with my views on reconstruction and any conflict with those that have been very happy with the results.

 

It’s one week since I found out I need a mastectomy. It feels like a month!

Last Wednesday when my surgeon explained that the pathology on the surgery I’d had the week before revealed invasive cancer, she followed with:

YOU WILL NEED A MASTECTOMY

(What? Did she just say mastectomy? That wasn’t even an option last week. What happened to “I’m almost certain it’s fat necrosis” which is what she said just before they put me under. Mastectomy? What? How is this even happening?)

While my brain was doing that, my surgeon was explaining that the multidisciplinary team were all in complete agreement. She then started explaining reconstruction options. It turns out that radiation makes it unlikely that implants will be successful. Given that my radiation was not successful in mopping up my cancer and that having it has also put me at risk of all of the complications associated with radiation, I’m not happy. She also told me that radiation means the mastectomy will possibly have some complications, including seromas (fluid building up under the skin) and slow healing.

It’s official; I would have been better off having the entire breast removed after chemotherapy.

Of course, we only know that with hindsight. This is one of the most frustrating things about cancer treatment. Every stage of treatment carries risks and complications. This particular course of treatment has been very successful for the majority of women that have had it. It was worth trying to save the breast. I’m not sorry to have tried.

My surgeon, Kylie, then went on to explain suitable reconstruction techniques. They involve taking skin and tissue from one part of my body and moving it to my chest. Kylie told me that she often works with a brilliant cosmetic surgeon that favours a DIEP flap method. Tissue is taken from my tummy and moved up to make two mounds on my chest. She’s happy to call in a favour and get me in to see this surgeon.

I was still in shock. I wondered if reconstruction at the same time as the mastectomy would help me cope. Kylie told me that if I was to have reconstruction I would probably spend the first week thinking it was a mistake “because everyone does at first” and that it would involve ten or eleven hours in surgery. I wondered if this would help me overcome the body issues associated with mastectomy and she replied that even those with reconstruction continue to have body issues. At the time I said this: “I think having something there would help me to avoid that shock people will feel when they see me without breasts.”

It occurs to me know that my mind went straight to worrying about the reaction of other people. Hmm.

I left her office close to tears, with an appointment to see the cosmetic surgeon two days later. I had to use the receptionist’s phone to call my daughter with the bad news. The first of what would be a week of tears leaked out while I made that call. The serious crying was shared with my husband when we left the practice.

I spent the next couple of days researching and thinking about reconstruction, but mostly just grieving. News like this deserves a lot of tears. There’s also the distress of friends and family to deal with. How could this happen? I’ve been looking so well. Treatment seemed to have gone so well. What went wrong? For a brief time I felt I’d failed them. They had all loved me so much and wanted me well so badly and now I had let everyone down. I felt guilty about the sadness and distress my condition was inflicting on those around me. Poor Mum went through three months of ultimately terminal cancer with Dad. My daughter arrived from Sydney and sobbed while I held her. I had no comforting, motherly things to say. All I could do was to cry along with her.

Graham held me while I cried. He told me that I had his complete support, whatever I decided. He told me, over and over again, that he loved me and that he would always love me. “We will both be very sad. It will be hard for a while. Then it will get better and it will become our new normal.” He didn’t cry with me, preferring to be my rock, but sometimes he’d walk into the room with his eyes red and wet and I knew he’d been grieving in his own way.

I was fairly sure I didn’t want a reconstruction. When I told Graham he said, “I think there’s an argument for having the least possible surgery, but I still think it’s worth keeping the appointment with the cosmetic surgeon. You can’t have too much information in this sort of situation.” Wise.

So two days later we drove for an hour and a half to see the cosmetic surgeon. Kylie had warned me that some patients found her manner hard to take, but that she was one of the finest surgeons in the country. I was forewarned, so what happened next didn’t shock me nearly as much as it might have done.

The cosmetic surgeon was another brilliant, petite woman with tiny hands. She and Kylie could be sisters. I noticed her bird-like manner and her tiny breasts. She asked me about my medical history. Was pleased that I’d given up smoking eight years ago. Pleased that I had a good level of fitness and that I was not a heavy drinker. She asked to physically examine me.

With my top off, she pointed to my healthy right breast and said, “So, how do you feel about this one?” I told her I was fond of it. It’s my breast. It’s part of my body. (Truth be told, I’m fond of the other one too, but she didn’t ask about that). “Well,” she said, “It wouldn’t pass the pencil test but you couldn’t hold a pencil case under it.”

Kylie had told me that you get one shot at a reconstruction and for that reason many people opt to do both breasts. I told the surgeon that if I went ahead with reconstruction I’d be having both done. She then took a look at my tummy. She seemed delighted. “Almost no stretch marks. Your skin is in good condition. Yes. I we could do a lovely job with this.”

I felt a wave of nausea. She was talking about cutting off my tummy and moving it to my chest. “They’ll be soft. They’ll be warm. We reconnect the blood supply but we can’t reconnect the nerves so you don’t have the same sensation, but they’ll feel natural.” She looks across at my husband. The colour has drained from his face. Even so, I’m flattered that I’m such a ‘good’ candidate. I imagine myself being one of the finest examples of her work.

With my clothes back on, she shows me some photos of other patients. They are impressive, but this procedure comes with a lot of scars. I try to imagine myself looking like one of these women. Would I feel like a patchwork quilt? Would the additional risks and pain be worth it?

She starts talking about a date for surgery, possibly next week. I tell her that I’m still making up my mind about reconstruction and then we have this conversation:

Surgeon: “Well why WOULDN’T you want a reconstruction?”

(Wow. Did she just say that? As if reconstruction is my only reasonable option? Okay. Stay calm. Resist the temptation to tell her to mind her own business. From her perspective this is a reasonable question.)

Me: “Um. I only found out I need a mastectomy two days ago. I think I’m still dealing with a measure of shock. There’s a bit of an ick factor with reconstruction, moving tissue from my tummy to my chest. I’m not sure I wouldn’t rather just be flat chested.”

Surgeon: “So you’d rather be a martyr?”

(What the….did she just say martyr! Is she trying to bully me into surgery? Does she realise that a martyr DIES? Could there be a more inappropriate thing to say to someone facing mastectomy? Okay….settle down. You might still want this woman to cut into you so don’t go pissing her off.)

Me: “Err, no. I don’t want to be a martyr. If you mean do I want to make a point of the fact that I’ve had a mastectomy then, no. I’d dress appropriately. This is major surgery and I need to think about it. Kylie tells me it will be six months before I’m fully recovered.”

Surgeon: “Well that’s an overstatement. The alphas that have this are back abseiling and kayaking and rock climbing in about six weeks.”

Graham: “Is the abseiling compulsory?” (How I love him.)

She’s visibly annoyed. I expect her to say “Why have you been wasting my time?” but she holds back. She tells me that she’ll need to know by Monday morning because if I don’t want the spot on the list there are other people waiting for it. Pressure, pressure, pressure. Then she says “We like patients like you. You’re fit and you’re positive.”

As I leave the surgery, her receptionist restates the need for me to let them know as soon as possible, talking to me as if I’m a naughty girl who won’t eat her broccoli. It’s the same tone you’d use to say, “There are children in poor countries with nothing to eat.”

In spite of the surgeon’s manner I’m less averse to reconstruction that I was before I saw her. In the car home I put my hands on my breasts and think about the difference between having nothing and having something. Graham and I talk about it and I ask him if, sexually, having something there is likely to make a difference to him. I know this is my decision but this is our relationship and I’d really like to know what he thinks. He tells me again that he’ll love me whatever I decide. He also says that he doesn’t think the reconstruction will make a difference, particularly as I’ll have less sensation in the transplanted tissue. And if I want it I should have it.

By the time we’re halfway along the expressway I’ve recognised that my interest in reconstruction has more to do with wanting to be a star patient than with what I want to have happen to my body. This is the over-achiever in me. Given the opportunity to do something I will always try to do it well. I congratulate myself on recognising this propensity for what it is. I do not want to be part of this doctor’s photo album, even if I’m the best work she’s ever done.

As a final part of the process I read through the information she’s given me and ask to join the reconstruction group on the Breast Cancer Network Australia site. This group posts comments and photos. It’s probably one of the best places to research reconstruction. I am eternally grateful to the brave and amazing women that have shared their experiences. I cringe at the pain they’ve been through to rebuild their bodies and their lives. I respect, without reservation, the decisions they have made for themselves. It’s very clear that many of them have found reconstruction beneficial in helping them to deal with the trauma of mastectomy. The rest of this blog is about why I won’t be joining them. Please know that if you’ve decided on reconstruction, I mean no offence to you. As everyone says, this decision is extremely personal (could anything be more personal?) and we all walk our own path.

For those facing a similar decision to mine, here are the reasons I’m not having reconstruction:

1. The least possible surgery
Graham makes a good point. The best thing I can do for my health is to have the least possible surgery. Ten or eleven hours on an operating table along with the increased risk of infection, anaesthetic complication and death can be avoided. Cosmetic surgery is, by definition, not medically required.

For this reason I’m also opting to have a bilateral mastectomy (both breasts) which sounds like more surgery but actually avoids the need to have future surgery to remove the right breast. My surgeon tells me the risk of cancer in that breast is low. So was the risk of recurrence. Not chancing it. I’m also large breasted and having one large breast will be harder for me to cope with than having none at all.

It’s also clear from my research that reconstruction usually involves more than one operation. Some women have been back three, four or more times for revision. Each surgery carries risks and each needs more recovery time. In some cases, complications include tissue death and serious infection. There’s also a possibility (small) of the transplant not taking. All of these possibilities horrify me. I can’t think of any good reason to take these risks with my health.

2. The least possible recovery time
Kylie tells me I’ll be back doing modified yoga within three weeks of my mastectomy. Recovery from reconstruction takes much longer and she says (although the cosmetic surgeon disputes this) that I wouldn’t really achieve full recovery for six months. I want to be well as soon as possible. I want to get back to my life.

One in four people with triple negative breast cancer (and one in six for the other types) won’t be here in five years time. I’m doing everything I can not to be one of them but if it turns out I’m the one in four I don’t want to have spent a big chunk of that time having and recovering from surgery.

Radiation means I’m at higher risk of seromas, infection and poor healing no matter what I decide. Those risks are compounded if I have the more extensive surgical option. I don’t even want to think about golden staph!

Removing my tummy also means cutting into the area where I had my appendix out as a child. I’ve already got adhesions from that surgery and further surgery to that area is not desirable.

3. No more bras
Large-breasted women will get this. Also, no more neck pain, back pain or trying on beautiful dresses where the waistline is up under my breasts. It’s not all bad news.

Both a reconstruction and a single mastectomy would require me to wear a bra. I’ll probably follow the example of my good friend, Jo, who sometimes wears prosthetic breasts when she’s out (and sometimes not). It will be nice to take them off an put them in a drawer when I get home.

4. Much less pain
Pain following reconstruction is acute. People that come through it will tell you it’s the worst pain they have ever experienced. It’s the reason Kylie says that everyone spends the first week regretting reconstruction. Women experiencing bilateral mastectomy tell me that it was painful, but less than they were expecting.

5. Less scarring and I keep my tummy
Reconstruction would require a scar running across my tummy from one hip to the other. I’d also have a scar around my belly button and scars around each of the reconstructed breast mounds. Mastectomy will give me two scars, one on either side and will leave my tummy intact.

A few people have commented that I could score a free tummy tuck out of this (whoopee!) and it’s made me realise how much I love my tummy exactly as it is. Yes, it’s soft and a little rounded. That’s because I’m a 52 year old woman whose had a baby. When I think of my daughter my hand instinctively goes to my tummy. This is where she grew. I like being a little bit rounded. This is what most women my age look like. I had a flat tummy when it was age appropriate. I don’t want one now.

I’m also a bit prone to keloid scars, where the scar rises up in a ridge. This didn’t happen with my breast surgery (Kylie is brilliant) but every other incision has resulted in ugly scarring. Best to keep the cutting to a minimum.

Triple negative is also known to have a propensity to recur in scar tissue. I don’t know how thoroughly breast tissue can be removed and you only need one cell to germinate another cancer. Of course, I can’t avoid any scaring but having the least possible scarring seems to be my best choice.

6. Psychological benefits
For me, there are numerous psychological benefits in having a bilateral mastectomy. I will no longer have any breast tissue and this will significantly reduce my fears of recurrence. My smooth chest will more readily show symptoms of recurrence. I will avoid ongoing mammograms and the inevitable stress while I wait for results. I would still need to go through all of this with reconstructed breasts.

The symmetry will mean that, with clothes on, I will look just like all those women that are naturally small breasted. Nothing about my appearance will say ‘cancer survivor’.

My husbands hands will still be able to touch the skin on my chest and I will still be able to feel that touch. There is no compensating for the loss of my nipples and I will miss them more than my breasts. They’ve always been a favourite part of our intimacy and I am struggling to imagine how I will feel without them. Reconstruction would not alter this. Reconstructed nipples don’t have sensation.

When I try to imagine how I will feel standing naked in front of a mirror, the look of a bilateral mastectomy appeals to me more than the scars of reconstruction. Both come with ongoing body issues and for me, mastectomy will be much easier to deal with. I’ve looked at several photos of bilateral mastectomies and most of them look good. I can be okay with this.

Conversely my personal reaction to the results of reconstruction are not pleasant. So many scars. So much pain. I recoil from the idea that I would put my poor, long suffering body through that for cosmetic reasons. Something about reconstruction makes me nauseous. Me, who never suffered nausea through chemotherapy. It’s a visceral reaction and I can’t fully explain it, but I know it would be wise not to ignore it.

I know that the psychological benefits of reconstruction are possibly the single greatest reason that other women decide to have it, but it’s not for me.

When I spent time during treatment with a psychologist she helped me to identify what my values are. ‘Health’ came up number one. This is a decision consistent with my values. I have come to understand that nothing is more important to me than my health and that avoiding anything with the potential to undermine or compromise my health is very important to me. Reconstruction is unnecessary surgery. It’s about how I look rather than what’s best for my health.

I’m booked in for a bilateral mastectomy on the 8th of August. I’m thinking of it as my new dolphin chest. I’m considering that, at my age, my breasts were not going to get better looking with age.

But how I will miss them.

 

 

The Downside of Positive

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As the name of this blog would strongly suggest, I’m a big fan of the benefits of positive thinking. A lot of people misunderstand this. They tell me it’s not at all natural to be happy all the time. I completely agree. That’s not what ‘positive thinking’ means.

Rather than ‘being happy all the time’ positive thinking is about having optimism as a kind of default setting. I’ll give you an example.

Two people get out of bed. They both trip over the cat. They both bruise their right hip. They both drop their coffee cup and make a mess of their kitchen while discovering that they forgot to pay their phone bill. The first person says, “Well this is just going to be a terrible day. Why does this kind of thing always happen to me?” The second person says, “Well that was an unusually unhappy sequence of events. I’m sure the rest of my day will be better.”

Two people. Exactly the same circumstances but they frame them in different ways.

Staying positive includes being grateful for what I already have rather than longing after what I don’t. It includes finding activities that play to my strengths and match my values. It includes association with people that really appreciate me for who I am.

I wasn’t always this way. I had to learn it.

Recently though, with the need for a second surgery and the wait for my next lot of pathology results I’ve realised that there is a downside to being so sunny side up. Sometimes I set myself up for a fall.

Before my first lot of surgery I managed to convince myself that the chemotherapy I had prior to surgery had killed off all four of my tumours. Three of them were clearly gone. The remaining tumour looked unstable. My surgeon told me she was confident of a full pathological response. My oncologist told me she was almost certain that’s what we were looking at. I suspect my optimism was contagious. Both doctors are brilliant professionals with a long track record of great outcomes for their patients. It’s likely that they’re usually more taciturn when it comes to predicting surgical outcomes.

When my pathology came back there were pockets of active cancer throughout the tumour. I did not have a full pathological response. Even more shocking was the discovery of ductal carcinoma in situ underneath the tumour. This was the first time it had been discovered.

I was shocked. I was sad. How could this have happened. I’d been doing everything my medical team had told me to do and then some. Surely my daily yoga, my new healthy diet and my refusal of alcohol could only have helped? What had gone wrong?

Well…nothing. This is cancer. Dangerous. Unpredictable. Not inclined to meet anyone’s expectations just because they had their positive thinking sorted.

I spent the next three weeks feeling sad and disappointed and, well, just a bit ripped off. That’s the downside of positive thinking. It can easily tip over into magical thinking where you come to believe that you can make things happen with your imagination. It’s a fine line. On the one hand, there’s no doubt that you can mentally control all kinds of bodily functions with time and practice. The easiest one is your salivary glands. Think of lemons. Think really hard.

With patience and practice you can also learn to lower your heart rate and your blood pressure. Many people use meditation to relieve chronic pain and Buddhist monks actually overcome their ‘startle response’, long thought to be uncontrollable.

My point is that our mind and our body are not separate and we can exert some influence over it. But we can’t kill tumours.

The research will tell you that having a positive attitude (or ‘being optimistic’) will give you a longer life and a stronger immune system, so there’s certainly an advantage to this kind of philosophy when you’re facing a serious illness, or when you’re not, but there are no cases that I’ve been able to find of anyone ‘thinking cancer to death’.

I was a model patient. I coped well with chemotherapy and got an early and impressive result when three tumours died. I really did start to believe that my attitude had something to do with my outcome. Perhaps it did. Or perhaps I would have had exactly the same result being a bag of misery. How would we test for that?

I have pathology results due tomorrow. I had another slice of tissue removed last week and there are a scattering of suspect cells through it. By now it’s probably been sectioned and dyed and examined under a microscope to determine exactly what those cells are. Tomorrow afternoon I get the results. I’ve had a good week of resting and healing and taking it very easy. What I haven’t done is to imagine that these cells are nothing to worry about.

My new mantra when waiting on pathology: It is what it is.

It might be fat necrosis which would be great. It might be remnant dead cells which would also be great. It might be active DCIS which would be less great, but it would also be out of my body with no reason to believe I have cancer any where else.

You see the real pity of getting my hopes up last time was that I missed the good news. The tumour was out and with clear margins. There was no intrusion into my lymph nodes which is VERY rare for triple negative breast cancer and has a BIG impact on my survival odds. My surgeon said, “I know it’s not what you wanted but it’s still good news.” All I could hear was “pockets of active cancer throughout the tumour”. It’s not that this didn’t matter. It also affects my chances of survival, as does the high mitotic rate of the remaining cancer. It’s still a good outcome.

Here’s the most important thing to remember about having a positive attitude. It won’t cure you.

The reason this is important is that the other downside of being positive is the risk that a bad mood or a bad day makes people with cancer fearful that they’re damaging their own health. You would not be human if you went through this treatment without experiencing shock, horror, grief, pain, sadness, humiliation and a fear so raw it’s like ice through your heart. Cancer can kill you. It doesn’t get much more terrifying than that. Twist the ‘positive thinking’ the wrong way and you wind up with people receiving the diagnosis that their cancer is terminal and blaming themselves. Worse, you open yourself up to being blamed for your own illness. “She’s gone terminal. Clearly not positive enough.”

People seem the think that “stay positive” is a good thing to say. I don’t find it helpful. I particularly dislike, “I’m sure everything is going to be fine. I can just feel it!” Really? You have some kind of psychic ability for predicting health outcomes? I also dislike anything that starts with the phrase “at least”. “At least you don’t have it anywhere else in your body.” “At least they’ve taken it out, whatever it is.” The irony here is that this is exactly the kind of thing I say to myself when I feel the panic rise. In recent times I’ve discovered that it’s a lot more useful to just acknowledge the rising panic, decide if it’s useful and then let it drift away. I know about all of my “at leasts” and I’m grateful for them but now is not the time to remind me. Please.

I am blessed to have wonderful friends. Here’s some of the things they’ve said this week that I’ve found really helpful:

1. I’ve made you some lasagne and some sticky date pudding so you don’t have to cook. When can I drop it over?
2. I have no idea what you’re going through but I’m here for you.
3. I understand why doing nothing is so frustrating for someone like you. Does it help to remember it’s temporary?
4. Would you like a hug?
5. You look amazing and really healthy.
6. Breathe. Be mindful. Be present. Don’t waste a minute of your life on worry.
7. I love you.
8. I’m here to do some weeding.

Positive thinking won’t cure your cancer.

It will make your life more pleasant. It will make you feel better on a day-to-day basis. You’ll probably keep more of your friends because you’re more fun to be around. You’ll probably get less colds and recover faster from the ones you get. You’ll also sleep better. You probably won’t cure your cancer with your brain (but if you figure out how to do this then please let me know).

My pathology results tomorrow will either be cause for celebration, or cause for an even bigger celebration. If the verdict is DCIS then it’s likely I will have an entirely appropriate cry about that.

It is what it is.

Back Burning

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The last few weeks have been all about bush fires on the east coast of Australia. My husband is a volunteer fire fighter and he’s spent some of that time back burning in the Blue Mountains. This is where the phrase ‘fighting fire with fire’ comes from. Fire fighters move to areas ahead of the fire front and deliberately  burn out the undergrowth in the path of the fire, or in areas where it may spread. There is still damage to the bush and to wild life, but the hope is to stop the fire by depriving it of fast-burning fuel. The large trees survive.

The process reminds me of chemotherapy. You do something deliberately destructive in the hope of preventing something worse.

For those that don’t already know, chemotherapy involves filling your body with something toxic that kills off fast replicating cells. It’s almost certain that in the future they’ll develop better ways to specifically target cancer cells but, for now, the best option for some cancers is to knock out anything that reproduces quickly, including healthy cells. That’s why your hair falls out. Hair cells grow quickly. So do skin cells and the cells that line your digestive tract.

If the strategy goes to plan, the healthy cells are replaced by my body and the cancer cells are wiped out.

Sometimes back burning goes horribly wrong and actually causes serious fires. The same thing can happen with chemotherapy. There are risks of serious side effects. A head cold can kill you because white blood cells, the ones that protect you from infection, are fast replicating. Chemotherapy also carries the risk of permanent heart damage and there’s a risk of leukaemia ‘months or years after treatment’.

There’s also a risk that you don’t wipe out all of the cancer cells and the remaining ones are now resistant to the chemotherapy and therefore more aggressive than the ones you started with. Triple negative cancer metastasises all through the body. A more aggressive form of an already highly aggressive cancer is not a happy thought.

The trouble for people with this cancer is that doing nothing is not really an option. My tumours doubled in size inside four weeks. It’s reasonable to assume that without any treatment I would be dead inside a year (probably six months). Having chemotherapy to target those tumours prior to surgery is now considered to be the best strategy for triple negative breast cancer. If I can achieve a full pathological response (no tumours) before I go in for surgery then my five year survival rate improves by about 10%. That puts me in the same category as other breast cancer patients.

So I accept the risks and the collateral damage in the hope of extending my life. Back burning.

There is one phrase that helps me more than any other:

I WILL CROSS THAT BRIDGE WHEN I COME TO IT

You wouldn’t be human if your mind didn’t drift down the dark alleys of frightening possibilities, but this phrase pulls me back to the present. There is no merit in dwelling in that darkness. It will not make me wiser or better prepared.

There are times when not building a comprehensive picture of all the possible outcomes in my mind is a good thing. What I need now is distraction and avoidance. It’s against my nature. I’m usually the kind of person that likes to think things through. One of my greatest challenges has been to just let go of the things I can’t control. I can cross those bridges when and if I come to them. For now I need to focus on what I can control.

I can control what I eat, what I think, and how well I take care of myself. I can control the extent to which I follow the instructions I’ve been given and the amount of exercise I get. I can make decisions about meditation, relaxation and sleep. I can decide to prioritise my health over everything else.

I’m much better at taking care of myself now that I have a solid appreciation of the stakes. I am temporary. We are all temporary. Some of the things that make us temporary are beyond our control but many of them aren’t.

I’m not doing anything extreme. My body is going through enough with chemotherapy. My approach is to do what I can to reduce any other toxins from entering my system and to nourish my body with good food and good habits. There is, of course, the lingering questions about why it took cancer for me to realise how important it was to do this.

I am feeling well. I’m about a third of the way through my twelve weekly doses of paclitaxel and I’m looking and feeling healthy. I’ve now got a fine fuzz of what looks to be white hair. The rose hip oil I’m using on my skin has done a better job of reducing fine lines, wrinkles and age spots that any expensive chemical concoction. Of course any concern I ever had about looking my age has evaporated but it’s a small bonus.

I’ve already had the wonderful news that three of my tumours are gone. Last week the tumour site kept pulsing and aching. A good sign according to my oncologist. This week it’s a dull ache and I’m hoping that means the primary tumour has taken a big hit.

Over the next few months we’ll see what we always see after a bush fire. Large trees will sprout fresh, new growth along their trunks and branches. For a while they’ll look like they’re covered in green fur. The surviving animals will return and rebuild. The blackened trunks will remain as evidence that fire came through here but the bush will come back.

I hope my body echoes that regenerating ability.

I hope my cancer doesn’t.

And if it does?

You know which phrase goes in here.

Lies, Damn Lies and Statistics

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A national chain of restaurants used to issue discount vouchers on the back of supermarket receipts. Over time, they found they had more success offering ‘one free main meal’ than offering ‘15% off the total bill’, even though the total bill reduction usually amounted to a much larger saving for the customer. Their conclusion was that most people couldn’t easily calculate 15% of a potential bill, but they had no trouble understanding ‘free meal.’

If you like a bargain you’ve probably got a quick method for calculating percentages, and it’s made easier by retailers sticking to simple numbers. We know that 50% of something is half, 33% is roughly one third, 25% is a quarter and 10% is a tenth. Anything else and we look at the price, move the decimal point one place to the left to give us 10% and then double it for 20% or triple it for 30%. Or we just go with the notion that any discount is better than no discount and the higher the percentage the better the deal.

It turns out I was wrong, as I sat in my high school maths class and audibly rolled my eyes wondering how percentages were going to be the least bit useful to me in the real world. Percentages matter. Particularly when you get cancer.

Cancer involves a lot of difficult choices about treatment. Everything comes with side effects and risks. It’s easy to get terrified. If you can’t get your head around percentages that terror can be paralysing.

Some people take the ‘ignorance is bliss’ approach. They place themselves in the hands of their doctors and hope for the best. I have an enormous respect and admiration for the majority of people in the medical profession but I also recognise their human limitations. People make mistakes. They get tired. They can’t always keep up with all of the current research. If you think about the number of patients most of these people see in the course of a day, a week, a month, it gives you an appreciation of their wonderful memories and their obsessive note taking. I’m more of a ‘knowledge is power’ kind of person. I want to be actively involved in my treatment. To ask intelligent questions and to make informed choices. I know that ‘what happens next?’ and ‘can we book that in today?’ are both good questions.

But oh those statistics! Let’s see if I can hose them down.

The first thing you learn about triple negative breast cancer is this phrase: “A poorer prognosis than other types of breast cancer.” Pause for a crying break. Contemplate mortality. Settle down and find out what that actually means. It turns out that ‘poor prognosis’ means you’re looking at a 75% five year survival rate.

To start with, you get your head around the five year survival rate. Figures for cancer are expressed this way because your chances of having a relapse are much higher in the first five years. The longer you stay cancer-free, the better your prognosis. If you make it to 10 years without a relapse your life expectancy is about the same as anyone else. You can start worrying about heart attacks and strokes like the rest of the population! The point about the five year figures is that it helps to remember that these are your worst numbers, and they improve over time.

The other thing to remember about five and ten year figures is that a relapse isn’t a death sentence. A relapse means a new set of statistics that will, understandably, be more frightening than your original numbers, but there is still a survival rate.

75% means I have one chance in four of being dead inside five years. It also means I have three chances in four of being alive. That’s the raw statistic. Initially frightening but from my perspective, worth knowing. When I’m feeling a bit slack about looking after myself, ‘three chances in four’ is a serious motivator.

But I think we can immediately improve on 75%. In order to give you a five year survival rate, doctors need to use data from people that have already survived five years. Makes sense. What this means is that you’re looking at numbers from people that received treatment five or more years ago. All over the world, and in Australia in particular, there have been impressive improvements in cancer treatment in the last five years. It’s fair to expect that when triple negative patients get their statistics in five years time our survival rates will have been better. I think it’s conservative to say at least 5% better. That moves us up to 80% without even trying. Eight out of ten or four out of five. So already we’ve improved on the original statistic.

Remember whenever you hear medical statistics that they are always historical. In an environment where technology and medicine are advancing at a cracking pace that’s important information.

It’s possible to massage the 75% by adding in your own circumstances. This number reflects all cases of triple negative breast cancers. It doesn’t usually get detected early and, in many cases, people already have a tumour in another part of their body at the time of diagnosis. It’s very aggressive and spreads quickly. If you’re fortunate enough to have it contained to the breast, as I do, then your odds improve. The sooner you catch it the better. You can also figure into survival rates your general level of health, your lifestyle and the other things you do to improve your odds. The 75% figure includes people that were smokers, drinkers, over eaters and drug users. It includes people with underlying conditions that impacted upon their treatment and people that opted not to have any medical treatment, or chose alternative over mainstream. All of these are factors.

The strong message from these statistics is that everything I can do to support my treatment and improve my health will help to improve my odds.

One of the biggest changes to the treatment of triple negative breast cancer has been neo-adjuvant chemotherapy, which I’ve been having. It involves having chemotherapy first, before surgery. The advantages include immediately treating the whole body for any cancer cells. It turns out that we all have cancer cells wandering our body all the time. Even people that haven’t been diagnosed with cancer and never will be. Everyone. The reason those cells don’t develop into cancer is that our body recognises them as deformed and kills them. At some point a cancer cell manages to evolve in a way that turns off the flag that marks it as foreign, and our body gives it a blood supply to help it grow. A tumour is born.

Having something in your system that targets not only your tumours but any other highly aggressive, notoriously metastasising cancer cells is a good thing. If I’d had surgery I would have had to wait at least four weeks for chemotherapy and there’s a chance the cancer could have already laid down another tumour in that time.

It’s also reasonably common for triple negative patients to develop another tumour in their scar tissue if they have surgery first. There’s a view that because surgery disrupts the blood flow to the tumour site it may make it more difficult for chemotherapy drugs to target any remaining cancer cells. The other advantage of neo-adjuvant treatment is that doctors can see if the cancer responds to chemotherapy and whether or not the tumours are shrinking. Triple negative isn’t one cancer. It describes a group of cancers that share a common characteristic. Once the tumours are gone, chemotherapy becomes ‘best guess’. With neo-adjuvant treatment you can see the impact, and hopefully completely melt the tumours prior to surgery. Fingers crossed.

This treatment improves the odds of triple negative patients. Research from the UK is finding that around 40% of patients receiving this treatment achieve full pathological response. That means their tumours are dead and surgeons remove the surrounding tissue just to check. For these patients, their survival rates are the same as patients with other forms of breast cancer (currently close to 90%). Fingers and toes crossed.

I think it’s also important to view your statistics in the context of overall life expectancy. As a 51 year old Australian woman the average life expectancy is around 30 years. I know that some people find staring death in the face an odd way to stay positive but this number puts everything in context for me. I was never going to live forever.

Hopefully that’s given you a better understanding of how the survival rate statistics work, but the real quagmire comes when you start looking at the treatment statistics. Depending on who you ask, or what your read, mainstream cancer treatment is either leading edge medicine or brutal experimentation with lousy outcomes. It reminds me of being pregnant; you will hear horror stories. I find statistics very useful when sorting through this barrage of information, misinformation and conspiracy theory. First some basics:

Cancer is not one disease but a whole group of diseases that have some things in common. They all occur at a cellular level and they all involve a deformed cell attracting a blood supply so that it can grow and possibly spread. Statistics that apply to one kind of cancer do not apply to every kind of cancer.

Chemotherapy is not one kind of treatment but a broad description for a type of treatment that involves using drugs to target all of the cells in your body that reproduce quickly, including your healthy cells. Cancer cells reproduce quickly but don’t recover easily from chemotherapy. Healthy cells do. Statistics that apply to one type of chemotherapy to do not apply the every type of chemotherapy. Statistics that apply to the treatment of one type of cancer with chemotherapy do not apply to any other type of cancer. As a simple example, the aggressive nature of triple negative breast cancer means it responds better to chemotherapy than other, less aggressive forms of breast cancer.

Radiotherapy statistics are also complicated. This is an area of medicine that has benefited enormously from advances in computer sciences. What used to be a therapeutic ‘blunt object’ now uses three dimensional targeting and computer imaging. Statistics for radiotherapy need to be considered in this light.

Finally, there is not one kind of surgery and the skill of a surgeon is a major factor in these statistics. I think the best recommendation for a cancer surgeon is that they have a reputation for only needing to operate once. I’m not talking about relapse here, but people having to go back into surgery within weeks because it’s clear from the biopsy that something was left behind. I want a surgeon that’s going to get it right the first time. Not all do and this influences the overall statistics.

Your doctor has access to data bases that help to calculate the possible impact on your survival rate of various types of treatment. I like these numbers. All of these treatments have side effects and risks. In some cases those risks are life threatening. Without some data you can be left feeling as if you’re jumping out of the frying pan and into a volcano. So, keeping all of the above qualifiers in mind, here’s my numbers and what I get from them:

What happens if I do nothing? This is always my first question regarding any medical treatment. It turns out that for triple negative breast cancer the five year survival rate with no treatment at all is around 46%. That’s better than I thought it would be. A good way to think of anything close to 50% is that it’s a coin toss. For me, that’s not a great survival rate.

How does chemotherapy improve that? Based on the historical data, by 16%. That’s lower than I thought it was and hopefully that number will get much higher as the neo-adjuvant data kicks in, but even without that, 16% is a significant improvement. I think of it as a lottery with 100 tickets in it and first prize is my life. I’ve already got 46 tickets (survival rate if I do nothing). Would I like another 16 tickets? Before I make that decision I want to know what’s attached to those 16 tickets. One of them comes with a possible long term risk of leukaemia or heart trouble but when I look at my age and my overall life expectancy I’m still prepared to take that chance, given that all 16 tickets improve on my coin toss of a cancer. Chemotherapy isn’t for everyone. For some people the risks outweigh the benefits. Information helps you to be comfortable with whatever decision you make.

I apply the same kind of thinking to radiotherapy and the risks associated with that. The difficulty with assessing radiotherapy is that until I know how the chemotherapy and surgery went, I won’t have enough information to apply specific statistics. The more invasive the cancer, the stronger the argument for radiotherapy. At the moment I’m assuming best case scenario and even on those statistics it’s looking like a good idea. The other complicating factor with radiotherapy statistics is that some people’s odds have already been affected by chemotherapy and some haven’t and your age also affects your chances. Younger women have a higher chance of cancer coming back than older women. You can see why I call it a quagmire.

It’s useful to look at general figures for radiation. The chances of cancer coming back for a woman that has a lumpectomy without radiotherapy are 36%, but with radiotherapy that reduces to 17%. If the cancer had spread to lymph nodes then the chances of the cancer coming back rises to 44% and the chances are reduced by radiotherapy to 9%.

Like chemotherapy, radiotherapy includes some serious long term risks. There’s a 1% risk (one chance in 100) of getting another kind of cancer within 10 years. There’s also a risk of heart attack that peaks at around 25 years. I’ll run my lottery ticket analogy again. If I add radiotherapy into the mix I can now have around 90 of the tickets in a lottery of 100 tickets where the first prize is my life. One of those tickets might mean fighting another cancer battle and I’m okay with that. One of them might mean a heart attack at 75. I told the radiation oncologist that if I have a heart attack at 75 I’ll send him a thank you card! He’s promised me flowers in return.

I hope all of this helps people make informed decisions about treatment. My strong recommendation is to ask all of your treating doctors for data and take a pen with you to write it all down. Some of the information might seem terrifying but once you get your head around it there’s some positive stuff in there. Importantly, it helps you make decisions about your treatment that you’re at peace with. Perhaps the greatest hell for anyone with cancer is second guessing your choices. What if…..Should I have……..If only I’d known……….  When doubt sets in it really helps to know that you took the time to take everything into consideration; the general statistics, your personal statistics, your own attitude to risk and complications and your comfort level with any form of treatment.

I’ve opted for everything mainstream medicine can offer me, supported by complimentary treatments. Some people choose to have only some forms of treatment or none at all. I respect everyone’s right to make their own choices while encouraging them to do the research to ensure that those choices are informed. ‘Trust your instincts’ is lousy advice. My instincts have often led me down dark alleyways to be beaten up by circumstances that a little critical thinking could have avoided.

Finally, the statistics remind us that we are much more likely to survive breast cancer, even triple negative breast cancer, than to die from it. And that’s a really good thing to keep in mind.