One Month After Mastectomy

It’s one month today since my bilateral mastectomy. The phrase ‘bilateral mastectomy’ seems far too mild for what’s happened. I’ve had my breasts cut off.

Physically I’m healing well. The scar on my right side is neat and clean. This is my ‘healthy’ side but I decided to have this breast removed at the same time as the other one, partly because I thought I would feel better being symmetrical. I do. I also had it removed because I don’t think I would have stopped worrying about my remaining breast being a source of cancer.

I am happy with the decisions I’ve made. I’m not happy about having to make them.

My left side is puckered and the pores of my skin are noticeable. This side was treated with radiation in the earlier months of this year. The skin was never going to cope as well with surgery. I’ve been fortunate to have a well healed mastectomy scar because complications can include the wound re-opening or the tissue dying. The wound from the breast conserving surgery in July (when we discovered the invasive cancer that led to the mastectomy) is not healing well. There’s a small hole in the wound and a small amount of discharge from it. I’m seeing my surgeon on Thursday to have it ‘re-excised’, which means cut open again and rejoined.

There are two veins running down my body, starting from the ridge under the place where my breasts used to be. There’s one on each side although they are in different places. They feel like indentations under the skin, as if the vein has collapsed. There’s a name for this. Something disease. My surgeon did tell me but I’ve forgotten. It seems that both veins get pinched off during surgery to prevent bleeding. In some people they collapse. They are uncomfortable and feel a lot like the drains felt when they were under my skin post-operatively. Sometimes they are painful, as if someone has cut two lines down my torso.

(Note: This condition is called ‘Mondor’s disease’. I’m back here in February of 2016 because it’s just recurred on my left side.)

There’s still a strange intermittent sensation in my left shoulder, as if someone is jabbing me with a needle. My doctor says this is nerve pain and she’s prescribed more gabapentin. I’m only taking it at night and so far it doesn’t seem to be making much of a difference. I could take it in the morning as well but it makes me feel like I’ve had half a bottle of wine, which sounds like it might be a nice thing but it isn’t when you need to drive somewhere.

The gabapentin is also for the nerve pain in my back and chest. How ironic that one of the great benefits of a mastectomy is not having to wear a bra and yet one of the consequences is felling like I’m wearing a very tight bra! This is also a common complication of a mastectomy and it should improve with medication and time.

There’s a fluid build up on both sides. Yes, this is another common side effect. Interestingly my healthy side seems to collect more fluid than the side where I had the cancer. My doctor drained about 60mls out of the right side when I saw her last week. It feels as if it’s just filled right back up again. You can leave seromas alone and they will gradually be absorbed over a few months. There’s something about them that makes me squeamish. I’m hoping when I see the surgeon on Thursday she can drain them again and that this time they will stay drained. I suspect it’s just one of those things, like so many things, that needs time and patience.

Mentally I suppose my status is about the same as my body. Healing slowly. Not quite there yet. I still get a shock when I catch sight of myself in the mirror. I don’t look terrible. My beautiful daughter says I look slim and ‘like a fashion model’. My wonderful husband tells me I’m gorgeous. I’m just waiting for my brain to integrate this new version of my body. When I close my eyes and think of myself, I still have breasts. When I wake up in the morning I forget I don’t have them. I still feel them. They are my phantom breasts. There’s no question that I look much thinner. This is odd because, apart from the weight of my breasts, I’m no thinner than I was before the operation. A flat chest reads as ‘athletic’. I also think that looking down and seeing my tummy makes me much more likely to hold it in.

One of my friends asked me last week how I was feeling. “A bit flat.” I replied, before I realised what I was saying. Puns aside, I have felt flat. I really only had two weeks to process the news that my cancer was back and invasive. Then there was surgery and two or three weeks of just healing, recovering from the anaesthetic, letting my wounds stabilise before I lifted anything heavy and eating well to get my energy back up. It’s really only now that I’ve had the opportunity to reflect on it all.

I am now a statistical outlier.

Before all of this I knew there was one chance in four of the cancer coming back in the first five years. I knew that if I made it to five years the chances of the cancer coming back would be significantly reduced and I was looking forward to throwing a big five year anniversary party. Not only did the cancer come back, it came back just inside the first year and was already invasive when it was discovered. This is so unusual that there’s no data for it. The treatment I had should have worked. It has worked for the majority of women that have had it. The radiation oncologist speculated that I had ‘dormant DCIS’ which I found interesting because I thought the whole point of radiation was to kill off anything that wasn’t quite a cancerous cell, along with any stray cancerous cells.

My surgeon initially speculated that I might have ‘radiation resistant tissue’. This would fit with the way my skin held up so well during treatment. A couple of months ago I noticed the hair in my left armpit growing back. It’s one of the only benefits of radiation, not having to shave under that arm any more, so I was surprised. I remember thinking at the time, “I hope this doesn’t mean my radiation failed.”

At my last visit to the surgeon I asked her what she thought went wrong. I wondered about the marker clip that had been left behind during my first surgery. The calcification that showed up on the most recent mammogram appeared to be associated with the marker clip. It was trailing in a line away from the clip, and was thicker where it joined the clip, a bit like the tail of a comet. I wondered if the movement of the clip through my breast tissue might have caused scarring that increased the risk of recurrence. My surgeon replied that the clip shouldn’t move and that it wasn’t the cause of the recurrence. She had intended to remove it during the first surgery and missed the reference in the initial pathology report stating that there was no sign of the clip in the tissue sample. I missed it too. I was too anxious about the discovery of DCIS under the tumour.

The doctor that inserted the clip did say at the time that they can move. She also told me when I went back for the second surgery that it’s common practice to leave them in so that the correct area can be scanned in followup testing.

I had neo-adjuvant chemotherapy (before surgery) with the intention of treating any cancer anywhere in my body and, simultaneously, hitting the four tumours in my breast. This treatment killed three of them. When the remaining tumour was removed my surgeon did so with clear margins but obviously left behind an area of tissue that previously contained the three dead tumours. This is standard practice because it minimised the loss of breast tissue. I wonder with triple negative cancers if it might not be good practice to remove all of the effected tissue for biopsy.

I am not a doctor.

None of my speculation is meant to constitute any criticism of my medical team. I honestly believe that I’ve had the best possible treatment available. It’s my investigative background that causes me to speculate. I’m curious. I also think that my unusual circumstances are an opportunity for discoveries that might benefit other people with triple negative breast cancer. I want to know what went wrong. I want to know why this happened.

My surgeon gave me this answer: “We don’t know.”

This is the bottom line when it comes to cancer. The best available treatments work for most of the people most of the time. Inherent in that statement is the implication that some of the time they don’t work, or don’t work as well.

I am not unreasonably anxious about what this means to my survival odds. It can’t be good. You would think that having no breast tissue would mean you can’t get breast cancer but it doesn’t. Triple negative cancer notoriously recurs in scar tissue and I now have a whole lot more of that. Who knows if keeping my healthy breast would have been a better option? Who knows if keeping my high risk breast would have been less of a risk than all this scarring? The honest answer is “Nobody.”

One of the greatest complications of cancer research is the difficultly in establishing what the best choices are for any individual patient. Even something that’s been highly successful for most people might not work for me, or for you. We all bring our own genetics, histories, habits and pathologies to the treatment room.

There’s also a ‘bleeding edge’ to cancer treatment. I read the other day that they are predicting an end to chemotherapy inside ten years. It looks like the future of cancer treatment will include re-engineering your own T cells and putting them back in your body to fight the cancer. This is not science fiction. There’s a doctor in Seattle in the USA already using this technique to treat childhood leukaemia. The treatment we have available to us today is just the best available, not the best. In time there will be a cure. Every single person with cancer hopes to live long enough to receive it.

It’s possible that I could still get local recurrence. My surgeon has told me to watch for lumps under my scars, under my arms and in the ridge above my collarbone. It’s also possible that I could get metastatic disease. If I get this cancer anywhere else in my body it’s still called ‘breast cancer’ even though I don’t have breasts and that’s not where the cancer would be. Picking up metastatic disease is more difficult than spotting local recurrence. It’s most likely to happen in my bones or my brain or perhaps one of my major organs. Symptoms might be vague or non-existent. My surgeon’s advice regarding anything suspicious is to wait a couple of weeks and see if it changes or goes away.

My greatest fear is that my life is now a cycle of recurrence followed by treatment followed by recovery followed by another small island of time where I’m relatively well and able to enjoy life. Ultimately that’s followed by recurrence that can’t be treated. I am frightened.

I’m dealing with the fear by making room for it, by describing it here and by accepting that for anyone in my situation it’s a completely normal response. I’m also practicing yoga and meditation. Most importantly I’m taking time to really enjoy the things that matter to me. I’m closing my computer. I’m spending time in the garden. I’m cherishing time with my husband, my daughter and my friends and extended family. Life goes on.

It could be all my fears are for nothing. It could be that the cancer is gone forever.

We don’t know.

 

Advertisements

“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.