Part 20. #thisisntforeveryone
This probably really isn’t for everyone and I get that. It’s the boobs surgery chat I feel I have to write about for my own mental well-being first and foremost. I hope it may be useful for other people too. I can’t sugar coat this shit!
I have to have surgery to remove all the tissue from my right breast. I have TNBC and the BRCA2 gene. So a lumpectomy is out and, for me, one tit is not enough. My left boob tissue must also go to keep me safe. That’s my choice so I don’t spend the rest of my life in fear of another tumour. Basically my boobs need amputating. Harsh but fact.
I’m writing at a time that requires me to read all about breast surgery and reconstruction for cancer patients. It’s not the same as a boob job and you don’t get to say “yay I get new fabulous boobs” once you get to know the facts. Maybe I get to say that a year or two from now. Here’s hoping. Instead what you’re faced with are options, options that include having no breasts at all either permanently or for a year; having parts of your stomach, back or thigh removed and placed as breast tissue; or having part surgery ahead of radiotherapy and living in limbo until it can be safely completed.
I’ll explain each of those options. The thing that is making the surgical team steer me away from going ahead with what is my absolutely preferred option, an immediate reconstruction, is the fact that I need radiotherapy after surgery. Radio will interact with the new implant and I risk the implant contracting and binding with scar tissue around it – this is called capsular contracture. My surgeon says there is a 60% risk of this happening. Other evidence-based reports say the risk is lower. If it happened it would mean requiring more surgery, involving having to be ‘flat’ on the right for weeks or months again and my boobs potentially not matching. Matching boobs are a fairly rare thing aren’t they women folk, although mine pretty much do when righty isn’t all angry and cancery. That said, I like symmetry.
So that’s option one. I’d like to wake up with boobs, my own skin and my own nipple. Fair enough right? But I understand that they don’t want to do something that could become complicated. However I also now understand, having been told on the phone by a nurse, that this decision making is also informed by the financial implications. Mmmmmm. Right then. I fed this back to my surgeon during our most recent discussion. He looked highly displeased and assured me that my decision is what we will be doing.
The ‘ideal’ clinical option is delayed reconstruction – to take both breasts with an incision straight across, removing the nipple, and me to be ‘flat’ for a year. This allows radio to do it’s job uninterrupted which it carries on doing for 6 months or so, then a year after radio they rebuild some tits. So I’d be looking at September 2019 and would wear a prosthetic bra in the meantime. The ‘ideal’ reconstruction surgery is then autologous, meaning creating boobs with your own fat either from your gut (DIEP flap), back, thigh or arse. The skin on your chest at this point having contracted and been flat for a year so needing to be stretched. This, to me, sounds like butchery. I don’t mean that in a dramatic sense, I refer to the pictures of cuts of meat on a pig. That’s pretty much what the illustrations look like in the books sent to me. Having your own tissue avoids inserting a foreign body and mainly avoids any other future surgery – if it works. It’s a bigger operation and obviously a longer recovery time as they’ve cut you in several places. The alternative is to have implants at this stage. They definitely prefer the autologous route. It’s obvious.
I don’t want that and here’s why. I get it, clinically it makes sense. Physically and, more importantly, psychologically it doesn’t make sense for me. It means a year longer in this cancer place; it means a body that is going to be, for me, very hard to come to terms with; it means my daughter’s having to come to terms with my very changed body; it means waiting; it means undergoing another major surgery in 2019 and the recovery that requires. I have had a lot of surgery in my life. More is not my favourite.
The thought of delayed reconstruction reduces me to tears. It did straight after my consultation at which I told the surgeon I got it but needed to think. An hour later I was sobbing. As I type I’m crying. My gut and my tear ducts are telling me I can’t do it. If it was the one option, you know, to ensure I’m cancer free and safe, I’d do it and I’d deal with it. But it makes me hugely sad and it’s not the only option.
My most recent discussion with my surgeon, who, again, is bloody lovely, involved a compromise surgery which I will now consider ahead of meeting the plastic surgeon in the first week of July. The compromise is to have only the tissue from righty removed, saving my skin and nipple and an expander to be placed inside. This will be less of an obstruction for radio. Following radio, at least 6 months down the line, I can then have lefty removed and full reconstruction. I asked about lefty’s safety and he reassured me that a new tumour within a year is very unlikely. So is TNBC and having the BRCA2 gene and I got those. So is winning the lottery and I haven’t done that, ffs. I don’t like percentages and odds any more. This route does make sense. I don’t particularly like it but I’m now thinking hard about it.
Whichever surgery I choose, the tissue from behind my nipple and behind my breast will be analysed and will inform whether it’s safe to keep the nipple and where radio needs to target.
This is so personal. I know there are thousands of women going through this process and each is making the decision that’s right for her, the decision she can live with, the one that’ll allow her to live. As I said in Part 19, this impacts on so many things. If you have a partner he or she needs to get used to this drastic change in your form. If you don’t, you have thoughts about whether you’ll ever be confident enough to be intimate with someone and, indeed when you bloody well drop the whole thing in to conversation. Yeah, nice to meet you too, mine’s a gin, sure I’d like to see you again, oh I had breast cancer and these aren’t real/they look weird/are scarred. I know I’m being flippant and the right person etc etc but this shit is real. Then there’s the small thing of femininity, the relationship you have with your boobs, a total loss of sensation, which is also fact. Seeing yourself in the mirror looking very different to the person you’ve seen since adulthood kicked in, some 30 years worth of body for me. A body I have liked, something that’s always made me happy given the struggles so many women have with body image. A body that’s bought lots of joy and allowed me to have lots of fun.
The first time I met him my surgeon asked what I want. I want as much of my own breasts as possible. If he’d said “here’s what we must do to save your life” I’d get my head round it and do it without question. But he didn’t, he gave me choices. That’s a head fuck but the bottom line is, until a member of the medical team says something along the lines of “all that needs to go to make you safe”, why would I opt for a full amputation of my beloved breasts? No one has told me that’s necessary so why would I want to have them completely removed then rebuilt over a year from now? No. Step by step with the very best end result possible please, all the while knowing being cancer free is the ultimate priority.
Next week I’ll meet the plastic surgeon and discuss immediate reconstruction and the single/expander option further. Then I’ll have surgery potentially the following week.
There’s a moral to this story. If you have breast cancer, or indeed anything that requires surgery, research your options asap. I have been immersed in chemo and just pushing through, but I wish we’d started this conversation earlier. Making a decision of this gravity in a 3 week period is stupid. I get why – the team needed to assess the state of the tumour and plan the most appropriate action post chemo, but I wish I’d had my head around all the possible options to avoid some of this agonising!
All hail the tits. You’ve been good to me until you let a giant tumour in, stupid. We’ve had fun and you’ve worked hard – particularly for G who spent the best part of 7 months attached to you. N doesn’t want the soft spots she uses as pillows to be hard or gone. Everybody needs a bosom for a pillow. I have and am grieving for you boobs. I love you but righty has been taken over and you’ve both got to go to keep me alive. Thank you and goodnight.