“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.

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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:

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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:

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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.