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.