This is a post to mark one year since my second reconstructive breast surgery in June last year. I wasn’t going to post anything at all, since there is not much change to report with my body, other than the continuing VERY slow progress of healing. I’m determined that it’s not finished yet, but we will see!
However, today I was reading a great series of articles in the June 2015 USA edition of Elle magazine about women and their breasts and how they feel about them – whether healthy, not healthy, big, small, happy, unhappy or an assortment of other feelings. If you are reading my blog because of your interest in my breast surgery, or someone close to you, then it is worth tracking down the issue.
One of the articles, “A Radical Idea”, is about the potential over treatment of DCIS – ductal carcinoma in situ – and the current trend of removing and reconstructing breasts in order to avoid the potential development of full blown breast cancer. DCIS is not an invasive breast cancer (and neither is LCIS, which is what I was diagnosed with) and will not become invasive in an estimated 70 per cent of cases. So there is now a small but growing school of thought that active surveillance in some cases may remove the need for radical surgery. However, if there is a strong history of family breast cancer and /or other precancerous cells present, then the risks of developing invasive breast cancer become much higher, as was the case for me.
All interesting reading, but the paragraph that I thought I’d share here was this one, tucked away at the back of the magazine:
“It’s a theory that has been widely accepted for prostate cancer, where active surveillance has become much more common. One obvious reason for this is that prostate surgery often causes impotence (and incontinence) – and the magnitude of that loss is something most men and, not incidentally, male surgeons instantly grasp. Women may not respond as viscerally to what Susan Love, MD, the dean of breast surgeons in the country, calls the “collateral damage” of mastectomy: the loss of sexual feeling, pain, disfigurement, and emotional consequences. And their doctors, the vast majority of them men – because the vast majority of all surgeons, in all specialties, are men – may not express the damage particularly poignantly. Here’s how Love describes plastic surgeon’s patter with potential mastectomy patients: “We’ll take them off; we’ll make you new ones. They’ll look normal, they’ll feel normal”. What they mean is normal to them, because you’re not going to have any sexual feeling at all.”
I thought this was worth repeating again here because it’s the first time I have read about this in mainstream media and it’s something that is not widely known. Because you LOOK reasonably normal after your reconstructive surgery, and you don’t have cancer, everyone thinks it’s all hunky dory. But it’s not. It’s still damned uncomfortable, one year after the second surgery, and almost two years since the first surgery. I am fortunate that my surgeon looked me in the eye and told me that I would never have erogenous sensation in my breasts again. But I didn’t understand how much I would miss that sensation of feeling (ANY feeling at all!) in my breasts and a big part of my stomach, let alone the ongoing discomfort of being in a skin that feels like it’s a couple of sizes too small on my torso, and the stiffness brought about by the very slowly healing scar tissue underneath. I accept it, it seems to be slowly improving in some ways and yes, I know it could all be worse, much worse. I don’t have pain, I don’t have cancer and my body looks okay. I am grateful for all of that, and the skills of my wonderful surgeon.
I also want to be honest and say that it still does not feel great at all. So I’m sharing this for other women contemplating this surgery because I always think that it’s best to know in advance what you may be facing. Then you will have more realistic expectations. I don’t have any regrets that I had my surgery, and would do it again, if I had to decide the same thing now. I also want people to be aware in case they are in contact with other women who have this same type of surgery. No, it’s not a reason to celebrate. No, it’s not a “boob job” and “now you will look so great in your bikini”. It is a serious preventative cancer surgery and it is hard and it will have a long lasting impact on your body and your emotional state. Sometimes I wonder is it just me having this experience, which is why I felt glad to read that article. I think that is one of the things I have found hardest in the recovery of my surgery, that feeling of not being understood in the experience. Not having the downsides of it acknowledged because everyone wants you to feel happy and grateful. And I do. But I think it is important that the longer term negative implications are understood and acknowledged too.
That is all! I was glad to have the situation validated in the magazine and perhaps other women will relate to it too.
I am okay. I am getting on with things, keeping at it with my art. I am adjusting to a new way of being and working out a new way forward for myself.