One Year Post Mastectomy

Fanfare please!

It’s been one year since my bilateral mastectomy.

It seems like an appropriate time to post an update on my recovery and to reflect on what’s helped, what’s hindered and what needs to happen during the next year.

There will be photos, so if you’re squeamish about scars then best skip this one.

The short version; I feel great. Lately I’ve actually been feeling well, really well, for the first time since my surgery. I’m amazed by the body’s ability to heal and surprised at how long it’s taking.

If you’d asked me just after surgery how long I thought my recovery would take I would have guessed three months or so. Even one whole year later there’s still a little way to go before my body is done.

This is important.

There have been times during the last year when I’ve thought, ‘Is this as good as it gets?’ It seems to me that healing will happen for a while and then there will be a plateau where nothing much changes. I’ve come to think of these plateaus as the body taking a rest from the hard work of healing.

The whole experience has been an opportunity for me to take a hard look at my life and my habits. I suspect there are people whose recovery is passive. They wait and hope, trusting that whatever medical treatment they received will do all the work for them.

It’s been my long experience that recovery from anything needs to be active. We can support or hinder our recovery with some very simple choices, like what we put in our bodies, how much sleep we get and how much stress we’re prepared to tolerate.

I’ve been actively participating in my recovery.

I’ve cared for my skin, particularly the site of my surgery, by using a body oil after my shower. I’ve also taken care of lymphatic drainage from my left side by using gentle massage throughout the day. This area has had a lot of damage following three surgeries and radiation. While I haven’t had any signs of lymphodema, I see regular lymph drainage as an important preventative measure. I’ll be doing this for the rest of my life.

I’ve lost weight using The Fast Diet. My doctor recommended this because there are statistics showing that excess weight can contribute to breast cancer risk. Fasting also triggers autophagy, the body’s natural mechanism for cleaning up dead and damaged cells. Anyone whose experienced triple negative breast cancer knows that we don’t have any of the new ‘wonder drugs’ available to us. Fasting seems like the best thing I can do to prevent recurrence. I’ll be doing this for the rest of my life.

Yoga has probably made the single greatest contribution to my recovery. I do at least one class a week (two when my husband joins me) and I practice at home every day. When I wake up in the morning I get dressed in my yoga gear. I have coffee and check my messages and daily schedule and then it’s straight into yoga before breakfast. I’m able to do things with my body that I couldn’t do before I was diagnosed. Of course the point of yoga is not to twist your body into increasingly difficult poses. Yoga is about integrating the mind, the body, the spirit and the breath. Yoga has helped me to love my post-cancer body and to feel strong and flexible, mentally and physically. I’ll be doing this for the rest of my life.

Massage has also been a big part of my recovery. I found a local massage therapist with specialist oncology training. As well as regularly helping me to move back into my own body she’s gently massaged my surgery site and this has greatly assisted in settling all of the nerve pain and helping me to regain sensation in that part of my body. It’s also deeply relaxing.

I was eating fairly well before diagnosis and treatment has been an opportunity to review what goes on my plate. We’re shifting towards more and more vegetarian meals. I rarely eat gluten any more and I feel better for it. I’m naturally eating less food thanks to The Fast Diet and the impact on my appetite. We’ve adopted the SLOW principles as much as possible; Seasonal, Local, Organic, Wholefoods.

I’m eating much less sugar and finding that I can’t eat anything really sweet anymore. I suspect this is because fasting has killed off the gut bacteria that trick my brain into wanting more sugar. The recent discoveries in relation to the gut biome continue to fascinate me. I’m sure we’re only just beginning to understand how important this work is for our future health. It’s certainly a strong motivator to avoid processed foods with all their additives and preservatives that prevent bacterial growth.

Thanks to a couple of visits with a psychologist with ACT (Acceptance Commitment Therapy) training and Russ Harris’s books on the subject, I’m now very clear about what’s important to me, what I value and what I want my life to stand for. To celebrate my one year anniversary I’ve enrolled in a permaculture course. There are those that would argue I don’t need this training because I’ve been practicing permaculture all of my adult life.

My friend Cecilia challenged me to ‘become a world famous permaculture teacher’ which is what motivated me to finally enrol. She’s clever. I don’t really need to become famous (nor do I want to) but I really do want to teach the skills I’ve been practicing for so many years. Permaculture is simply the best way to be human and the map for the survival of our species.

One of my favourite quotes has always been ‘Be the change you want in the world’. When I was a teenager I looked at a photograph of the planet from space showing all of the lights of civilisation and spontaneously thought ‘human cancer’. I was distressed by the damage we were doing to the planet and a sense of helplessness. For me, permaculture holds the key to healing humanity’s cancerous impact on the planet. It’s probably going to keep me well too.

So here’s my latest photos.

As you can see, I’ve come a long way since surgery.

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My chest has gone from being almost completely numb to almost completely recovering sensation. I still have numbness along the scar lines and there’s an area of nerve damage above my original surgery scar (that’s the little arc high on my left side). Nerve damage feels like electricity under the skin. It’s continued to improve with massage and I’m hopeful that it will eventually disappear.

My chest still feels a little tight, as if I’ve got a large sticking plaster on it, but this has improved and I believe it will also vanish in time. For most of last year I felt like I was wearing an undersized bra (how ironic) and the tightness extended all the way across my back. That’s resolved now and I only have my chest to deal with. Yoga and massage both help with this.

I still need to remember to keep my shoulders back and to hold my body up. My doctor tells me it’s common for mastectomy patients to develop a stooped back and rounded shoulders. I suspect this is a combination of relieving that sensation of tightness and, perhaps, embarrassment at having no breasts. I regularly roll my shoulders up and back, particularly when I’m at the computer.

My neck has taken a while to adjust to the absence of two F cup breasts. Removing close to two kilos of weight left my neck and shoulders in a state of shock and once again, yoga and massage have helped. A friend showed me this neat trick; point your index finger at the sky; now bring your finger so it touches your chin and the tip of your nose; push back until you feel your neck is back in alignment. You can also push your head back firmly into a pillow when you’re in bed, or the head rest when you’re in a car. This simple exercise has had more impact on my neck pain than anything else.

As for the other side effects from treatment, I’ve also seen big improvement. I rarely experience any peripheral neuropathy in my feet. I still wake with sore hands but they warm up quickly. I need to be careful with any activity where I hold my hand in the same position for any length of time, such as drawing or sewing. My hands tends to cramp up and become painful. I haven’t given up on my body’s ability to regrow nerves. While one doctor told me I’d probably be stuck with whatever I had at twelve months post chemo, another said it can take six years for nerves to regrow. I’ve already had improvement since my twelve month mark so I’m going with option B.

I have a mild hum in my ears. This is probably also chemo related nerve damage but it could just be age. My Mum has age related hearing loss. It’s important to remember that not everything going on with our bodies is related to treatment. I don’t have that awful metallic taste in my mouth any more and I think this is also a form of peripheral neuropathy. Food tastes wonderful again, particularly straight after fasting.

I wonder to what extent the fasting has promoted healing. The science indicates that it should make a difference. In early days, I certainly noticed more rapid healing following a fast. I’ve observed that if I have any kind of skin blemish it’s usually completely healed after fast day.

As you can see from the photos, the radiation damage to my skin has greatly improved. As well as the circulatory benefits of massage, I think the regular application of rose hip oil has made a huge difference.

As you’ve probably already guessed, my mental state is great. People recovering from mastectomy are, not surprisingly, at high risk of depression. I’m very grateful that the care I’ve received and the work that I’ve done have helped me to avoid that particular complication. In many ways, depression is a worse disease than cancer and certainly at least as deadly. I think avoiding depression has involved a combination of things but particularly the information about ACT, practicing ACT and the benefits of yoga.

The most significant contribution to my state of mind has been the love and support I’ve received from so many people. Special mention must go to my beautiful husband who has continued to love and cherish me through all of this. I’m still beautiful to him. It’s an enormous advantage to have someone like that in my life and I grieve for those women that go through this on their own, or whose partners leave them during treatment.

I no longer experience ‘chemo brain’. I feel as mentally alert as I ever did. I’m also calmer, happier and less stressed than at any other time in my life.

I’m now taking stock and asking ‘What else can I do to continue with my recovery and to improve my health?’ I’ll also be doing this for the rest of my life. I believe that there is no upper limit to how well I can be. To put it another way, no matter how well recovered our bodies seems to be, there is always more we can do to improve our health.

Thanks to everyone that’s been following the blog and the accompanying Facebook page. Special thanks to those that have taken the time to let me know that something they’ve read has helped them with their own recovery. You’re the reason I keep writing.

Go well. Live well. My best wishes for your continuing recovery.

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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.

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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.

The Day After Surgery

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It’s over.

I booked into hospital yesterday morning and headed straight to nuclear medicine for some radioactive dye. This is injected to help my surgeon identify the closest lymph nodes so they can be removed for pathology. Not having any cancer in the lymph nodes is a very good indicator that the cancer hasn’t, and probably won’t, spread.

Then it was the long wait for surgery. Around about three (or was it four) I was wheeled down to the operating theatre. I was having so much fun chatting to my surgeon that the anaesthetist said, “I don’t mean to be rude, but do you think we might be doing any surgery today?”

I woke up today feeling great. I’m sure the yoga helps me bounce. I also think the liver I had for lunch yesterday helped. I’m not a huge fan but it sure does get that red blood cell count up. I used it the same way during chemotherapy and consistently had a higher than expected red blood cell count. Fortunately we’ve got an organic shop near us that sells organic lambs fry.

It’s a curious thing, looking down at my new, breast-less body. I’ve been mildly annoyed over the last couple of weeks about comments implying that my decision not to have a reconstruction has anything to do with how fond I am (was) of my breasts. I thought of a good analogy:

We used to have the most amazing cat. Toby was my gardening buddy for fourteen years. He’d follow me around the garden and supervise all planting and mulching. If I’d been away from home he’d greet me with a meow that sounded just like ‘Hello’. His favourite trick was to get down the far end of the house and call ‘Mum’ in exactly the same voice as my daughter. I’d call back, call again and then go to see what she wanted, only to find she wasn’t at home at all. Toby seemed to find this funny.

One day I heard him making the most dreadful noise. I found him collapsed in amongst the Jerusalem artichokes. We rushed him to the vet and he died on the table as they tried to resuscitate him. We wept for days. We had no idea what had killed him and we didn’t want an autopsy to find out. The vet suspected the feline equivalent of a stroke. We suddenly realised what a special cat he’d been.

A friend suggested a trip to the RSPCA to get another cat. Her own cat had died a few months before and she’d replaced him within a month. I explained that Toby couldn’t be replaced. I had loved him. He was gone. My grief was an appropriate reflection of that love. Another cat just wouldn’t be the same.

I have loved my breasts. They have nurtured my baby girl. They have been an important part of my sexuality. They have attracted plenty of admiration (sometimes unwanted but often desired). I am grateful to have had them. Sadly, the dense tissue that made them still reasonably shaped for fifty two year old breasts is the same dense tissue that makes cancer hard to detect and easy to grow. They stopped being my beautiful breasts and became two potential tumour sites. I will miss them but I am not sorry to have lost them.

I can completely understand why many women want reconstruction. I have a friend with the most beautiful implants (sadly not for me due to radiation) and I’ve read the stories of many other women that are happy with their cosmetic surgery. I’ve also seen some horror stories.

Reconstruction is a very personal decision and while I really do understand the appeal, it’s not for me. Ultimately my breasts are like Toby. I will grieve the loss of them, but having something else attached to my chest (like the skin and tissue from my tummy) would not replace my breasts. I would not regain my sensitive nipples (which I will grieve most of all) and anything transplanted will have less sensation than my neatly scarred chest.

I don’t have less regard for my breasts than someone having a reconstruction. I don’t feel less female without them. It’s been a wonderful coincidence that all of the nurses caring for me have been very small breasted, and two of them quite flat chested. They are beautiful, feminine women with naturally small breasts. I will be proud to look like them.

My surgeon called in while my husband was here and we all had a look at my chest without the binder on. I’m told a lot of women don’t want to look at their scars and avoid it for a long time. I really wanted to see them. I gave Graham the choice and he decided he wanted to see them too. Afterwards he said, “You’re going to look gorgeous when you’re healed.” Then he took this glamour shot of me.

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How I love him.

Also, not bad for one day after surgery, I’d say. I’m calling this my new svelte look.

I’m not in any pain. I’m on panadol, something to prevent nerve pain and intravenous antibiotics. I feel great, and greatly relieved. I am finally, absolutely cancer free. I’ve also greatly reduced my risk of recurrence and metastasising cancer. I’ve been warned that the blues kick in around day three (just like baby blues) so Graham has planned to be back here in case I need a shoulder to cry on. My beautiful daughter and her partner are calling in tomorrow, along with a couple of very close friends.

Meanwhile I’m enjoying the excellent quality of care at the Mater, North Sydney. There’s a reason this place keeps winning awards. The nursing staff are just outstanding. Even the food is great. Seriously.

Counting Down to Mastectomy

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Two days until surgery.

I’m due to see the surgeon today to plan it all. I keep having the thought that I’ll walk into her office and she’ll say “I’m so sorry, Meg. We got your pathology mixed up with someone else’s. You don’t need a mastectomy after all!”

It’s been two weeks since I got the bad news. Invasive aggressive cancer has come back in my left breast in spite of the best that modern medicine has to offer. Hypothesise include radiation resistant breast tissue and dormant DCIS. The treatment should have worked (and please be reassured that it works for the overwhelming majority of people) but in my case something went wrong. Or the cancer is just one of those rare, nasty ones that’s resistant to treatment. Cancer can be like that.

I spent the first week following the news just recovering from the shock. My mind set up camp in the land of denial and disbelief and stayed there, living on hope and grief, until it was ready to return to reality.

I spent last week moving towards acceptance.

Friends and family have lovingly organised visits and distractions. It’s helped, but I feel hollow. Bereft.

I walked around the house with my arms folded, cradling a breast in each hand and trying to imagine what it will feel like to not have them. I pulled the bottom of my jacket straight to simulate a flat chest and looked at my reflection. It will be okay.

I contemplated the irony. Only a few short weeks ago I was worrying about the impact of a second minor surgery on my left breast and whether or not the cosmetic result would be good. That doesn’t matter now.

I went back over my decision. The left breast has got to go but there’s a sense of betraying the right one which, after all, has sat quietly and beautifully on the sidelines through all of this. Should I keep it? It would mean having one nipple. Then I remember that the dense breast tissue is in both breasts. I imagine my body with one large breast and decide I’ll be more comfortable with neither. I’m sure I want a bilateral mastectomy. And then I’m not.

I wanted to make love because next week I won’t have breasts. I didn’t want to make love because next week I won’t have breasts. Too sad.

I thought of my friend with a seriously disabled son and what she deals with every day, and the children in Gaza, and the children in detention camps, and the adults in both of those places and recognised that there are millions of people in the world in worse circumstances than a middle class Australian woman in her 50’s facing a mastectomy. Perspective. It helped a bit.

I looked at my face in the mirror and noticed how one piece of news can transform me from vibrant and healthy to drawn and ageing. I danced with the rising panic and avoided thoughts of staph infections and people dying under anaesthetic.

I made lists.

I have a list of questions to ask the surgeon and a list of things to pack for hospital. I’ve let people know that I’d prefer if they wait until I’m home to visit me. I might be in hospital for anything from three to seven days and I know I’ll be feeling upset and tired. I’ll also have bandages and drainage tubes and all that goes with this type of surgery. When I get home I’m going to be confined to the couch for a few weeks and that’s when I’ll need visitors.

I’ve also asked people not to send me flowers. Flowers are lovely when you’re at home and you can easily change the water and keep them looking nice, but vases of slowly dying flowers in stagnant water are not a cheery sight in a hospital. I’ve asked people to donate money to one of the cancer charities and to send me a card with a copy of the receipt. I’d much rather the money that would have been spent on flowers goes to helping people with cancer.

I worked hard to find a bit of humour, a trace of a smile, a hint of a giggle. I posted this to my Positive3negative Facebook page:

Eleven fun things to do with a size 14F bra:

1. Double barrelled sling shot
2. Make rather disturbing looking puppets
3. Cut the cups out and use them as baby bonnets
4. Hanging planters for strawberries
5. Puppy beds for actual puppies
6. Sew the cups together and turn them into very comfortable possum houses
7. Mushrooming (because mushrooms will eat anything)
8. Tie them together and use as colourful windsocks on boats
9. Use the black ones to make suspicious looking evening bags
10. Join them all together for jaunty, humorous bunting
And finally
11. Become an internet sensation by dressing cats in them and posting photos

The best thing about this post was discovering that there are charities that pass bras on to women that can’t afford them. Today I boxed up most of my bras to mail off to them. I cried. I also felt anxious. Looking at the cups of a 14F bra made me realise that I’m about to have a significant portion of my body cut away. My breast tissue extends all the way under my arms. This is not going to be anything like the last two surgeries.

I loved my husband for telling me I would look ‘svelte’ and for saying that he was glad I wasn’t having a reconstruction because my life and my health are the most important things and he wants me to feel well as soon as possible.

I had moments of profound gratitude for the wonderful people in my life and all of the things they’ve done over the last couple of weeks. I had great advice and support from fellow breast cancer survivors. I was grateful for the friends that manufactured opportunities to laugh and forget all about it. I was grateful for the friends that cried and helped me grieve.

I remembered why my husband had told me to stay out of chat rooms and forums. My post about reconstruction was reblogged to the Breast Cancer Network Australia site. Someone commented that she thought having reconstruction was Frankenstein-ish ( with an accompanying apology if she offended anyone) and explained she’d had a double mastectomy following a DCIS diagnosis because she had nursed her mother following breast cancer and her mother never stopped thinking of herself as freakish following a single mastectomy (with an accompanying apology if she offended anyone).

People were offended.

They were probably also offended by my response to her; that while I had avoided words like ‘Frankenstein’ and ‘freak’ for fear of offending anyone that had chosen reconstruction I could certainly relate to having those feeling myself, about my own body, in my darkest times.

While both comments were clearly self referential, some people chose to take them personally and expressed their offence. The woman making the original comment contacted me and admitted that she’d received several nasty private messages, including some that were abusive and threatening.

I spent about an hour apologising to anyone that had taken offence. I tried to explain that nobody had been calling anyone else anything. In my experience, many of us have thoughts about ourselves that use language we would never use to refer to someone else. This woman had been commenting on her own opinion about her own body, and the feelings of her dying mother. I knew there were comments on the reconstruction section of the this site that were far more disparaging regarding reconstruction, but because we were part of the group choosing not to have it we were judged for our negative attitudes.

I resolved to stay away from the site until after surgery. I may not go back there.

For me, part of having a happier life involved recognising my propensity for self bullying. In times past I would have responded to my grief about having my breasts removed by telling myself not to be such a baby; not to be so stupid; to toughen up; to build a bridge and get over it…….

I don’t talk to myself that way anymore. The last two weeks have been and exercise in acceptance. I have let my negative emotions rise to the surface like dead fish. I have recognised the unhelpful thoughts and I have let them float away. I was due to see the wonderful psychologist that recommended this technique and I missed the appointment. I’m very distracted at the moment. This isn’t like me. I’m really sorry I didn’t get to see her before surgery because I know that would have helped.

Yesterday I had a massage with a woman that specialises in treating cancer patients. She helped me to settle back into my own body. To relax. To exhale.

I’ve managed two yoga classes and some meditation, along with a little bit of home yoga. It’s grounding.

I also fretted over the wound from the surgery three weeks ago. The wound looks weepy and infected. I’m seeing the surgeon today. I’m having the whole breast removed on Friday. I don’t suppose it matters all that much.

Worry is not helpful. Let it go.

Today I’ll go and find another front opening nightie, because I don’t think one will be enough. The surgeon is an hour and a half away so Graham and I will get to have another drive down the freeway together. My daughter and her partner are coming home with us and we’re all heading out to dinner. Distraction.

I’m hoping my surgeon clears me to do one last yoga class tomorrow. Then I’ll be heading out for lunch and a walk with a good friend.

Tomorrow night I’ll have liver for dinner to get my iron up and I’ll drink two litres of water before bed so I’m not dehydrated when I have to fast on Friday.

I hold on to this thought. No matter how difficult, horrific, frightening or painful this is, it will pass. The research on happiness shows that around three months after a traumatic even (or having something really great happen) we are just as happy as we were before the event. It’s okay that I’m not feeling very happy at the moment. I am still grateful and hopeful.

This too shall pass.

 

 

 

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.

 

 

“Why don’t you just have the breast off?”

P1060672

A few days ago I posted this photo and the following paragraph on my Facebook page at https://www.facebook.com/pages/Positve3negative/548288675239161?ref_type=bookmark.

“Farewell my beautiful scar. Surgery tomorrow which will involve standing in a mammogram machine while they insert a wire to mark out the relevant section to be removed. This will be under local anaesthetic and I am not looking forward to it. Then, some time tomorrow afternoon my surgeon will open me up again along my beautiful scar, take out another slice and stitch me up again. It’s unlikely that my new scar will look this good because this one was improved by radiation treatment (which does wonders for your skin!) and I won’t be having any more of that. We won’t know for a week whether the removed tissue contains active cancer or dead cells.”

Now I’m home and recovering from surgery I thought I’d address the elephant in the room. Why didn’t I just have the breast removed in the first place?

Just to recap, although my doctor told me after my surgery in January that they no longer routinely do scans, I asked to have them done at my twelve month anniversary. I understand all of the concerns about unnecessary scanning but this is triple negative breast cancer, notorious for metastasising and my previous tumours were undetectable without scanning. It never was possible to feel them under the skin, even when the largest one was about 2cm across. I was otherwise well and apparently healthy when Breastscreen picked up my potentially deadly tumours. I don’t want to wait for symptoms.

Lucky I asked because my one year anniversary scans showed some calcification. These look like little white dots on the mammogram. It’s one, or a combination of, three things: fat necrosis (benign), dead cancer cells (benign), or ductal carcinoma in situ (new active cancer). The only way to know which is to microscopically examine the cells. Initially I was going to have a biopsy but when they couldn’t locate the correct site under ultrasound my doctor decided to just remove the entire piece of tissue with surgery. I was happy with this decision. I would not have trusted a negative biopsy given the scattered nature of the cells. A little to the left or right might have been active cancer cells. Better to have the whole lot out.

I also found out that the marker clip that was placed between my four tumours right back at the start of treatment was still inside my breast. This was initially a worry but I’ve since discovered that when you have chemotherapy first the clip is often left in so that doctors know which bit of tissue to check. Seems to have been a very good idea in my case because that’s precisely where the suspect cells have turned up.

There are three main reasons for having chemotherapy first with triple negative breast cancer. Firstly, your medical team can watch the tumours to see if they’re responding to the treatment. Not all triple negative cancers respond in the same way and once the tumours are removed the chemotherapy becomes guess work. Secondly, if you have metastatic cancer anywhere the chemotherapy is right on it, even if it’s microscopic and thirdly, if the tumours shrink you lose less breast tissue and have a better chance of avoiding a mastectomy.

I still get asked “Why didn’t you just have your breast/s removed?” And that’s by the people brave enough to ask the question. I’m sure there’s lots of discussion out of my presence along the same lines. “Now she needs another surgery. She should have just had it off in the first place!”

Let’s clear this one up. There is a world of difference between breast conserving surgery and mastectomy. The first involves either day surgery or a one night stay followed by a couple of weeks rest and healing. The second is major surgery. For one breast you can expect to spend four to six days in hospital and to experience some pretty horrendous pain. The wounds from a mastectomy can involve a range of complications and if you’re unfortunate enough to need a double mastectomy then your time in hospital and your risk of complications increase exponentially.

If you decide on reconstruction there is more surgery and more risk. Some people have skin, fat and muscle moved from their stomach and/or their back for reconstruction. Others have expanders for several weeks followed by silicone implants. There are pros and cons for both types of surgery but all forms of reconstruction involve risk, compromise, pain and the potential for ongoing problems.

Our breasts cover a large area of our bodies. Removing them is not a simple procedure.

When I first met my surgeon I told her I was happy to have a mastectomy if I needed one. This was true. My husband and I had already discussed it. “You are not your breasts,” he said to me on the day we got the diagnosis, “and I want you to know that if you need to have them removed to save your life then that’s not going to change the way I feel about you.” I’ll always love him for that.

It turns out that with this type of cancer, mastectomy does not improve my survival rate.

That’s so important that I need to say it another way.

Mastectomy will not improve my chances of survival compared to beast conserving surgery.

So given a choice between minor surgery and major surgery with essentially the same outcome, which would you choose?

Some people have a mastectomy to avoid radiation and I considered that. Radiation is not without small but serious risks. Then my surgeon told me that regardless of which option I chose I would still need to have radiation therapy. So why lose the breast?

Perhaps the greatest misconception is that having my breasts removed would improve my chances of avoiding recurrence. Okay, it’s pretty obvious that if you don’t have any breast tissue you can’t get breast cancer in your breasts, but with triple negative breast cancer that doesn’t stop you from getting it somewhere else in your body.

Research into how cancer behaves in the body has revealed that most people have cancer cells in their bodies most of the time. They are ‘junk’ cells that don’t behave properly and in the normal course of events your body kills them off or the cells die of their own accord. Tumours happen when the cells develop the ability to ‘trick’ the body into treating them like healthy cells and they recruit other cells to give them a blood supply. That’s when tumours start to form.

Triple negative cancer cells like breast tissue. They also like to spread around the body. Given a choice between getting a tumour in my breast or any other part of my body (like my bones or my brain or my liver) which do you think I would choose? Yes. The breast. Give me the breast every time.

Here’s the best reason for keeping some breast tissue. Because if this very aggressive form of breast cancer returns I would much rather have it in breast tissue!

There are different scenarios for different types of breast cancer. Most people’s opinions on this issue seem to have been influenced by the publicity surrounding Angelina Jolie’s discovery that she carried a gene known to predispose her to breast cancer and underwent a double mastectomy and reconstruction. What nobody saw was the pain and distress she went through. It was announced after the event. I think her decision to go public was very brave and it has helped many, many women with these deadly genes to make this very difficult choice.

But to the best of my knowledge, I don’t have either of those genes.

In the forums where women discuss their breast cancer there’s a recurring theme of “I wish I’d just gone straight to a mastectomy”, usually from women who started off having breast conserving surgery and then had local recurrence (more cancer in the breast) and so needed to progress to a mastectomy. I can completely understand how, with the wisdom of hindsight, these women feel they could have spared themselves at least one surgery by going with the more extreme option first up. But here’s the sting in the tail; Many more women that chose breast conserving surgery didn’t get local recurrence and there’s no way of knowing which side of that field you’re going to land.

It’s also a possibility, depending upon the type of cancer, that some of these women would still have experienced recurrence even though they had endured a mastectomy, but the cancer would have come back somewhere else in their body. Cancer is a bitch that way. Although it may seem like the breast conserving surgery was ‘unnecessary’ once you’ve progressed to a mastectomy the reality could be that not having it in the first instance has prevented the formation of tumours in some other part of the body.

And if there’s a chance of saving my breast, without increasing the risk that the cancer will kill me, why wouldn’t I keep it?

So I haven’t had a mastectomy. I will if I need one. No problem. But this cancer really likes breast tissue so I’m going to hang on to as much breast tissue as I can for as long as I can. That’s enough of a reason.

If I needed more, there’s also the psychological impact that comes with a mastectomy. With or without reconstruction this is a huge amount of damage to your body. When I first got my diagnosis all I cared about was staying alive. It’s still my number one priority and I’m not compromising my health out of vanity. I’ve kept my breasts because that’s what gives me the best medical outcome and the psychological benefits are secondary.

I have two close friends that have both had bilateral mastectomies (both breasts). The difference between what I’ve been through and what they’ve been through is significant. Today another friend related the story of someone that had a reconstruction that went well, but the wound across her back where they took the material for the reconstruction took months and months to heal.

Choosing between breast conserving surgery and mastectomy is not like choosing between apples and oranges.

So this week I went back in to have another operation on my breast. Once again, I’ve opted for breast conserving surgery and for all of the reasons I’ve explained, mastectomy wasn’t even on the table. So can we please stop asking that question.

The surgery I had two days ago involved taking another mammogram and then inserting a wire into the breast while I was in the mammogram machine to mark the suspicious cells. The cells weren’t visible under ultrasound so this was the only option. It wasn’t  as bad as it sounds. The doctor performing the procedure injected my breast with local anaesthetic and that was less painful than having a line put in for chemotherapy (maybe I’m just getting used to being a human pin cushion).

Once the breast was numb I felt only some mild pressure as the wire went in. I closed my eyes. Always best with a creepy procedure. Yes, I was sitting in a chair with my breast in the mammography machine but it wasn’t on full squish, so not horrible. The wire was about as thick as the thinest string on a guitar. They taped a plastic cup over the top of it to protect it and then put me back in my hospital gown.

When I went to the bathroom I looked at the strange protrusion on the middle of my chest and thought “I could be Ironman!”. I then spent a few hours waiting for my turn in the surgery queue and basking in the love of my husband and daughter. I woke up from surgery with less pain that my first one. The wound is about the same size but I haven’t had to undergo any kind of procedure involving lymph nodes, so no radioactive dye or node removal.

As a side note, I still don’t know how my surgeon removed a sentinel node from my armpit during the first operation using the incision at the middle of my chest, but she did. Brilliant woman. I’ve avoided drains and bags of body fluid. Just one neat scar on the inner, upper quadrant of my left breast.

The news that I needed more surgery was initially disappointing, but it’s balanced against the wonderful news that there’s no sign of metastatic cancer anywhere in my body, and with triple negative breast cancer there was a high chance of that. Even the worst case scenario, active DCIS, is the least form of cancer I can have. And it’s in my breast. Not my brain!

I’m home now and under strict instructions to do nothing. How is that even possible? While doing nothing I also have to take a gentle walk on level ground for about 20 minutes each day and do my physiotherapy exercises which, thanks once again to my daily yoga, I’m already able to manage easily. My husband is hovering and tutting at any lifting. One of my dearest friends arrived today with lasagne for lunch so I didn’t need to cook. I will heal.

My breast looks like a balloon with half the air let out of it. There’s some fluid build up under the wound which should dissipate over the next couple of days. If it doesn’t I’ll need to get it syringed. Yuck! But whatever.

I’m back to wearing a bra 24/7 for the next couple of weeks. Thanks to past experience I know that wearing a singlet under the bra stops it rubbing, and this works even better if I turn the singlet inside out so the seams are on the outside. With a bra on, my breasts appear to match. I have no idea how I’ll look naked until the healing is finished. The cosmetic result probably won’t be as good as the first time around but it will still be my breast.

Perhaps there’s still a mastectomy in my future and if that happens I will march towards it with my trademark stoicism. Not yet. Hopefully not ever. So please, everyone that has an opinion on this, understand why this is the very best option for me. Not because I’m vain or cowardly or ignorant but because I am doing the every thing I can to stay alive.

My Post-surgical Breast

There’s no shortage of information about breast cancer. You can spend many confronting hours trawling web sites or wading through books on the subject. There are excellent ‘official’ web sites, books and brochures as well as what used to be called ‘chat rooms’ (but now they seem to be ‘communities’) where people share information with each other (not all of it helpful or accurate), but there seems to be a lack of information about what to expect after breast conserving surgery.

Most of what I’ve found looks something like this:

‘Expect some bruising and swelling which should settle within the first few weeks. You may also experience odd sensations.’

I didn’t find this useful. Here’s what’s actually happened:

I woke from surgery with an arced wound on my chest about 7cm long. It looked like it had been drawn on with blue marking pen and it was covered by a large, transparent, waterproof dressing. I did not have any drains under my arm as my surgeon performed a sentinel node biopsy and took the relevant nodes out through the same incision as the one she used to remove my remaining tumour.

Here’s a photo taken the day after surgery:

P1060215

When I woke from surgery I said ‘pain’ and they topped me up and put me back to sleep. By the time I woke up I was not in any significant pain, more the sort of discomfort you get with a badly pulled chest muscle; move the wrong way and you know it but take it easy and it’s just uncomfortable. I was told to take two panadol every four hours and I did. I learnt a long time ago that it’s stupid to be a martyr to pain. After four days I gradually reduced the pain medication.

The surface of my breast felt numb in some places and tender around the site of the wound. The blue colouring you can see is from the dye they inject as part of the sentinel node process. I didn’t have any noticeable bruising.

I was given physiotherapy exercises to do straight after surgery.  I was able to do without any difficulty but there was mild discomfort and a pulling sensation in the breast when I moved. This was exactly what I expected. I was told not to do any yoga for the first week after surgery. 

I also wore a bra all the time unless I was showering. After lots of experimentation I found a cotton singlet under an ‘Ah Bra’ (a sort of seamless, nylon crop top style of bra) was my best option for night time, and, to my surprise, my ‘going out’ underwire bra was my best day time option. The underwire bra didn’t rub across my wound the way my usual bras did. When I wasn’t wearing a bra I felt the need to support my breast with my hand to prevent a very uncomfortable dragging feeling. Having bra straps constantly rubbing my shoulders proved to be a problem and I found that tucking some padding under them helped. I used the wrist bands I wear to catch sweat at the gym.

Finding a comfortable position to sleep was difficult and I found propping my breast up with pillows helped. There’s a market for a kind of high necked cotton singlet with the sort of support they put into that underwear that straps your fat down. It needs to be absorbent and to have really wide shoulder straps. It needs to be high enough at the neckline to cover wounds like mine. Most bras cut right through the middle of this type of wound. It needs to be as long as a singlet because anything else digs in under the breasts.

A week later the waterproof plaster was removed by my surgeon. I was advised to use ‘micropore tape’ on my wound to help reduce scarring and to start massaging the scar with oil after another week. I was cleared to return to yoga but advised to take it easy.

At this point the site of my surgery still felt hard, similar to the feeling of a tightly clenched bicep muscle. I started to notice that sometimes I would get strange sensations in my breast and underarm, like a small electric current zipping about inside me. Sometimes I’d get a sudden, sharp pain like someone poking me with a finger (most often to the side of my breast, under my arm) and sometimes I would get a dull ache. These sensations have continued even though it’s now six weeks since my surgery. The surface of my skin around the scar is still numb. This may be permanent.

The hardening at the surgery site is disturbing because it feels exactly the same as the cancer felt after it had been biopsied. While I was having chemotherapy, that site became softer and smaller. Having a hardened area in the breast again is very reminiscent of the cancer. After six weeks it seems a little smaller but it’s still there. The breast care nurse tells me it’s completely normal and that it’s also the most common question they get asked. “You need to become familiar with your new breast,” was an excellent piece of advice. It’s a bit like having dental work. The new tooth feels strange for a while until you become accustomed to it. My breast is not going to return to normal. It’s going to be different.

I also noticed a ridge running down the side of my breast, from the underarm to the nipple. On massaging it I found something beneath the skin that felt like a cord about as thick as a computer cable. If I lifted the breast the indentation became more obvious. With exercise and massage this has relaxed. I can still feel it under the skin but it’s no longer having and effect on the appearance of my breast.

I found the micropore tape comfortable. Even though I knew the wound was stitched up I could feel the pull on it caused by the weight of my breast and the tape helped me to feel more securely held together. On the advice of the breast care nurse I changed it every second day and massaged with rose hip oil in between. The official advice is to use ‘Bio oil’ but that’s a petrochemical product and it’s a credit to their marketing department that doctors and nurses alike mention them by name. I’m on a mission to educate!

An important tip for the micropore tape; fold a small corner over on one end before you apply it. This makes it much easier to remove. Picking at the numb skin on my breast with my numb fingers was not a good combination.

Here’s my breast after six weeks:

P1060307

 

Pretty impressive work by my surgeon, I’d say, and I’m not done healing. For anyone worried about the tattoos you get for radiation, this photo shows my breast after I’ve had them and two of them are in this shot. Good luck spotting them. I was relieved to discover that they are very tiny.

Perhaps my biggest post-surgical shock was the continuing impact of chemotherapy. I thought that when chemotherapy ended back in December that I’d coped well and would now be moving on. Instead I’ve had increasing peripheral neuropathy that has progressed from some numbness and tingling in my hands and feet to very painful sensations running up to my knees and elbows. When I wake up in the morning my hands are stiff with pain. I’ve been advised to take paracetamol with codeine and that’s helping.

It terms of my breast, I’m very happy with the outcome of the surgery. Without a bra you can see a bit of puckering around the cancer site but compared to losing the breast (which other surgeons would have recommended) this is a much better outcome. I continue to have strange sensations in the breast, including the electrical zipping and the finger poking sensations. Recently I’ve developed an uncomfortable pain at the site where I know one of the lymph nodes was removed from under my arm. This is new. I think it’s useful to know that the patterns of pain can change, and that you can suddenly develop a new sensation as your breast heals.

I’m able to feel a little more comfortable without a bra which is a good thing going into radiation therapy. Anything that rubs the skin, including a bra, is likely to cause problems. I think I’ll just wear singlets for the next six weeks.

If you’ve had breast surgery I hope you find all of this useful. My number one tip post-surgically is to talk to your local breast care nurse. If you don’t have these wonderful professionals where you live then talk to your doctor. So often we worry ourselves because we don’t want to bother people. It’s not bother. It’s their job. I know I’m now much better at making a phone call when I’m pretty sure the answer to my question will be ‘that’s completely normal.’

There’s a world of difference between being pretty sure and knowing. Knowing gives you peace of mind.