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.

 

 

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Why Am I Exceptional?

Yesterday I woke up crying. I couldn’t remember what I’d been dreaming but it’s not hard to guess.

The last few days will be familiar to anyone that’s ever been given horrible news. I forget, briefly, what’s about to happen to my body. Then I remember. Then I get upset and burst into tears. I cry for a while. It helps. I calm myself down with an internal dialogue about my life being more important than my breasts.

But my breasts!

It’s three days since I got the news I need a mastectomy. Here’s what’s happened since then.

On Thursday I had a CT scan of my brain to see if I had any metastatic tumours.  On Thursday night my surgeon rang to tell me the scan was clear (see my previous blog on this).

On Friday I kept the appointment I’d made with my inscrutable GP just to bring him up to speed with everything that’s been going on. I’d initially booked this appointment to get the results of my scan. If there’s one thing I’d change about the current system it would be the provision of report results directly to patients that request them. I appreciate that many people need to have things explained by a doctor, or would prefer to have that opportunity when they get results, but I’m twelve months into all of this and I’ve read more than a few reports by now. I’ve also got a policing background and enough medical knowledge to at least know the difference between good news and bad news. Getting my results ahead of a medical appointment would give me time to process the information and to make sure I had all of my questions ready for my doctor. It’s my body, damn it! They are my results!

My GP didn’t know about the mastectomy. He told me about his sister who decided to have both breasts removed for similar reasons. I was hoping to line him up to drain any seromas that develop after my surgery. You can get a build up of fluid under the skin and this is much more likely following radiation. I’ve got one now in my surgical wound from last week and my surgeon took 20mls of fluid out of it on Wednesday. My surgeon is an hour and a half away so having someone local would be useful. My GP looked cautious, told me that he’d done it once before under direction of a surgeon so he might be able to help but would probably refer me to radiology to have it done under ultrasound. Hmm.

We talked about my general health. My appetite continues to be poor. The ‘metal mouth’ caused by chemotherapy has made a lot of food unpalatable. Things need to be either very bland or very salty to taste any good at all. I’ve dropped about seven kilos since my treatment began. I’m now a size 12 so it’s not a threat to my health. It’s a hell of diet though. I don’t recommend it. I’m countering it by making sure that when I do eat, it’s good quality, nutritional food. For some reason, I have no trouble with anything cooked by my favourite chef and Reef, Terrigal’s top gourmet restaurant. Silver linings.

After the GP we headed in to Gosford to see my radiation oncologist for a ‘what-the-fuck’ conversation. Combining his advice with Kylie’s, here’s what seems to have happened:

Just to recap, triple negative is not one type of cancer so much as a ‘miscellaneous’ category for cancers that are not HER2 positive and that don’t have estrogen receptors or progesterone receptors. So they’re called ‘triple negative’ because they don’t have three things that most other breast cancers have either singly or in combination. Because they make up only 15-20% of breast cancers they are less studied and less understood. They also have a higher mortality rate and tend to be more aggressive than other types of breast cancer. There’s more than one type of triple negative breast cancer and researchers are still working on defining them. What works for one might not work for another.

I had neo-adjuvant chemotherapy (before surgery). It works well with aggressive cancers like triple negative breast cancer. It treats the whole body systemically and doctors can monitor your tumours to see if the chemo is working. Post surgically, chemotherapy is guesswork.

The other advantage of neo-adjuvant chemotherapy is that triple negative breast cancer seems to like scar tissue, and scar tissue seems to make this type of cancer resistant to treatment. If you have triple negative surgically removed and then have chemotherapy the poor blood supply to scar tissue may effectively diminish the efficacy of treatment.

The earliest form of breast cancer is called ‘ductal carcinoma in situ'(DCIS). This means it’s confined to the ducts within the breast and hasn’t yet become invasive. DCIS is now the subject of debate, with some calling for it to be reclassified as ‘pre-cancerous’ rather than cancer, and with researchers finding that some DCIS goes away on its own. Doctors would not normally treat DCIS with neo-adjuvant chemotherapy because it is not aggressive and does not respond to it.

My chemotherapy protocol killed off three of my four tumours. The fourth tumour was surgically removed. It still had pockets of active cancer but came away with clear margins of non-cancerous cells, which usually means you can be reasonable relaxed about a good prognosis. Added to that, I was ‘node negative’ which means there was no invasion into my lymph nodes. Also good. But there was DCIS under the tumour.

It seems that what’s happened is that some of that DCIS has been dormant during treatment, or rendered dormant (but not dead) by the chemotherapy. It’s then remained dormant during radiation. My radiation oncologist tells me that this would prevent the radiation treatment from ‘mopping up’ those cells. Over time they’ve become active again and that’s why I’ve had recurrence.

It’s also possible that my tissue was ‘resistant’ to the radiation. I’ve been doing some thinking about this and I believe there’s a flag here for further research. One of the reasons for doing neo-adjuvant chemotherapy is to preserve as much breast tissue as possible. When I had my first surgery, my surgeon removed the active tumour but left behind the marker clip that had been placed in the middle of the original four tumours (deliberately) along with some of the tissue that previously held the three expired tumours. It’s possible that this particular tissue, having been effectively scarred by the chemotherapy, was more resistant to the radiation.

I’m going to suggest to my surgeon that this could be the subject of data collection. It might also be prudent to remove all previously effected tissue following neo-adjuvant treatment, even where there’s been tumour death. This would mean accepting a poorer cosmetic result, but possibly a better chance of avoiding recurrence. This is just speculation. Both my surgeon and radiation oncologist are shocked by what’s happened and neither have seen it before. I might just be exceptional.

Neo-adjuvant treatment is relatively new. Monitoring those of us that have had it is worthwhile. I’m not sorry I had it. If I’d seen a different surgeon I probably would have been advised to have a mastectomy followed by chemotherapy and radiation. I’d be no worse off and it’s possible that the time taken to commence chemotherapy could have resulted in metastatic cancer. It’s easy to look back and say that I could have avoided a lot of pain and distress by having the breast off at the beginning, but my outcome has been atypical. There was every reason to attempt to save the breast and I’m not sorry that we tried.

Neo-adjuvant chemotherapy can also substantially improve survival odds, particularly if you can achieve a full pathological response (all cancer dead). It was worth trying to achieve that, even though I didn’t.

My biggest regret is that if I’m right, and the tissue damaged from chemotherapy turns out to be the reason for the recurrence, then that tissue has now been removed and it’s possible that I could keep my breast without further risk. Only time and research will tell, and I can’t wait. This is one of the frustrating things about cancer treatment. It’s dynamic. There’s so much research and ‘best practice’ is changing from year to year. There was a time when all breast cancer patients were routinely given a double mastectomy. Now they know that for most women this does not improve their chances of survival when compared to breast conserving surgery but it took several years and many brave women to prove that. Sadly, I’m the exception.

The good news from my radiation oncologist is that he doesn’t think this recurrence has affected my survival chances (although with such an unusual outcome, nobody can be sure). For triple negative breast cancer there’s a 75% five year survival rate. One in four of us will die within five years. Three in four of us won’t. Okay, not cheery statistics, but remember that as we age  our chances of dying from anything at all increase. We are all going to die of something. At 50, the average life expectancy is 32 years. By 60 that’s dropped to 24 years and by 70 you’ve got an average of 16 years to live. For a 45 year old Australian the risk of having a stroke by age 85 is one in four for men, and one in five for women. Each year more than 10,000 Australians die of heart attack. It helps to keep things in perspective.

My mitotic rate (the speed at which my cancer reproduces) is 20. This is high but it’s unchanged from my original pathology which is good news. My cancer hasn’t mutated in response to treatment. I had no nodal invasion so my radiation oncologist is hopeful that the cancer hasn’t figured out how to migrate to other parts of my body. It looks like it will only grow in breast tissue. No breast tissue, no cancer. Let’s hope so.

I asked my radiation oncologist if he or the nursing staff attached to the practice can drain seromas. He tells me he can but prefers not to unless they become really uncomfortable, as drainage often results in infection. Better to leave them and allow the body to reabsorb the fluid as I heal. This is good to know.

As back up,I left a message for the breast care nurse at Gosford hospital. They’re experienced at draining seromas along with all of the other great support they offer. I was shocked to discover that this large public hospital covering a population of over 300,000 people in an area with a high rate of breast cancer has one part-time breast care nurse. One! The Mater at North Sydney has two working full time, with trained staff to back them up when they take leave. Worse, I’m told that the hospital is considering abolishing the position due to funding restraints. I might need to start a campaign when I’m finished with surgery.

I also saw a cosmetic surgeon yesterday about reconstruction and I’ll probably write about that tomorrow. Short version; not having it, but I was, surprisingly, tempted to consider it.

Finally, here’s my husband’s Facebook status from yesterday:

‘My wife has no hesitation in having her breast removed to remain alive. The next time I hear the phrase “fights like a girl” I will assume it’s a huge compliment. I wish I was that strong.’

How I love him. Not so sure about strong. It’s not like I have a choice.

 

 

My Surgeon Rocks

It’s 8.00pm on a Thursday night and my phone rings. It’s my surgeon letting me know that today’s CT scan of my brain was clear. I now officially have no signs of metastatic cancer. Woohooo!

She then spends half an hour talking about my prognosis, my surgery and my decisions.

She has confirmed that this type of local recurrence is very rare. She’s only seen it once before and that was with someone that had significant lymph node invasion (and I had none). She’s shocked.

We talked about the multidisciplinary team that she is a part of and how they all agreed that mastectomy was the best option. I don’t know if multidisciplinary teams are in operation everywhere else but what an excellent way to support difficult decision making by caring professionals. Apart from giving me greater confidence in my surgeon’s recommendations, it must be so much better for them to be able to discuss cases with each other. Kylie tells me they don’t always agree. That’s a healthy sign.

I am overjoyed to report that my mitotic rate is the same; 20 over 10 fields. This matters because it means that the cancer hasn’t mutated into something more aggressive. It’s likely I have ‘radiotherapy resistant tissue’ which just gives me one more reason to have it removed.

I was concerned that there may be some argument for retaining the healthy breast. Perhaps having some breast tissue to catch or attract any travelling cancer cells would help to avoid it metastasising in another part of my body. Kylie assures me this is not the case. It’s likely given my lack of node involvement that this cancer hasn’t figured out how to grow in anything other than breast tissue. No breast tissue should, therefore, equal no more cancer.

There’s an option to keep the healthy breast. It turns out that it’s rare for cancer to spread to the second breast and it usually occurs where there’s been clearance of lymph nodes and the remaining lymphatic system is draining to the healthy breast. That’s not my situation. Even so, I’d like it removed. Psychologically, I will always be worried about recurrence. I’d have to keep having mammograms and ultrasounds. I’d also have one very large breast. Aesthetically and physiologically I think I’d rather just have a smooth chest.

I’d also like to avoid the possibility of having to have the second breast removed at a later time, remote though that possibility may be.

Kylie has arranged an appointment for me tomorrow with a breast reconstruction surgeon. Another brilliant doctor. I’m reasonably sure that I don’t want reconstruction. There are lots of reasons. I’m an active person. I love my yoga and my gardening, and my kayaking. The thought of not being able to do these for several months is distressing. Kylie tells me that I can probably be back to gentle yoga in three weeks if I don’t have reconstruction. Full recovery from reconstruction takes about six months.

I’m also squeamish about the idea of cutting away a flap of skin, fat and muscle from my tummy and moving it up to my chest. Eeew. This is clever stuff and has given many women a very happy result. I’m not knocking it. I just don’t think it’s for me. I like my tummy. Yes, it’s a little bit rounded and soft but I like it that way. I can’t have silicone implants after having radiotherapy so using another part of my body to make ‘breast mounds’ would be my only option. The procedure can be done at the same time as a mastectomy and the whole of this takes ten or eleven hours.

I can honestly say that not having breasts isn’t going to be devastating for me. I will be sad. I have lovely breasts and I will miss them. But one of them is trying to kill me.

I talked it over with my amazing husband, Graham.  Of course he’s all for saving my life and going ahead with a mastectomy. No question. He’s not keen on reconstruction either. I think he put it well. “Have the least surgery you can.” I’m still going to see the specialist because I don’t think you can have too much information in a situation like this (also Graham’s thinking). I’m allowing for the possibility that I might change my mind in the future. A mastectomy now doesn’t close the door on reconstruction later. Also, from Kylie’s description, this doctor is the kind of woman I like to spend time with. She’s blunt, down to earth and plain speaking.

I’m tentatively booked in for a bilateral mastectomy on the 8th of August. I don’t think I’ll change my mind about reconstruction tomorrow but we’ll see.

Meanwhile I’m overwhelmed with gratitude for my beautiful surgeon who takes time out from her husband and her three little children to spend half an hour talking on the phone to me.

And no charge for that service by the way.

Who does that?

Now if only I could type her name without thinking of hot pants and mirror balls.

Unhappy News

The pathology from my surgery last week shows active cancer.

DCIS but it had started to become invasive. This is not an option we were expecting.

 

I’ve asked my surgeon to find out the mitotic rate. I want to know if this is the same cancer or if I’m one of those rare, unlucky people for whom radiation and/or chemotherapy have caused an aggressive mutation.

My doctor is recommending a mastectomy. It’s survived chemotherapy and radiation. It’s too aggressive to risk it. Leaving the breast will almost certainly result in recurrence. Sad.

I’m still happy with all of the choices I’ve made because I know I’ve done everything I reasonably could have done to save my breast. It might have gone differently.

I’m definitely having the mastectomy.

My only decisions are one breast or two and reconstruction or not. I’ll take some time, do some research and do some thinking.

The worst part of this news is that it does not bode well for my long term survival chances.

Of course I’ll keep fighting.

Of course I’ll keep enjoying life and all the wonderful people in it.

I might beat the odds, and I might not.

When you ask your surgeon for a prognosis and she tells you that one of her patients with a cancer like yours is still with us after four years (wow….a whole four years!) it starts to sink in.

Triple negative, basal, high mitotic rate, grade 3, aggressive, invasive and with a high chance of metastasising.

It is what it is.

 

 

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.

I Do Not Have Cancer Any More!

Surgery went well.

The strange little calcifications that turned up on my one year scans have now been cut out of my left breast.

I am very happy with my surgeon’s decision to take all of the suspect tissue out and send it off to pathology.

I’ve got another couple of weeks of wearing a bra 24/7 and hoping I heal well.

I’m waiting for pathology results next Wednesday to find out if the suspect cells are active cancer or dead refuse. Either way they’re out of my body.

It occurred to me, in the last few days, that for the first time since I was diagnosed I can say this:

I DO NOT HAVE CANCER ANY MORE!

I’ve had my bone scan, my CT scan, my ultrasound and my mammogram. The only suspect cells were in my breast and they have now been surgically removed.

This is big.

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

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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.