Hi Everyone,
I saw my Onco-plastic Breast Surgeon on Friday about explant. It took me the whole weekend to get over that appointment. And this was not to do with breasts or no breasts or surgery itself. I’m fine with taking the surgical risk (as I was going to have to remove these implants at some point); and I’m a-ok with a flat and scarred chest. I’m sure I’ll have my moments ahead, but if there’s any way we can try to reverse the Connective Tissue Disease action and my own special variety of photosensitivity, I would cut off more than my breasts!
After being told, with regards to implants and autoimmune diseases by a nurse when I first enquired 2 weeks ago: “If we knew then what we know now”, I was not expecting to run into resistance with my much loved surgeon. Of course I can see, in retrospect, that to present my plan-of-hope was in fact questioning her very identity as a plastic surgeon; and/or going against the plan-of-action the health board have in place for patients enquiring about explant right now. So I know now this was behind the energy between us that I would rather not have had.
The first shocking thing was to find out that I do in fact have the textured implants, which are implicated in causing the Breast Implant-Associated Anaplastic Large Cell Lymphoma (BIA-ALCL). These tend to show up 8-10 years on. My implants have been in for 6.5 years. These are the ones France, among other countries, have banned and my homeland country of Canada banned about two weeks ago. In the US, the FDA decided just on Friday not to ban based on the fact that only 10% of implants there were these textured types. They are phasing out instead.
Ummm…does anyone else see that I am a sitting duck, being that I already have an immune system disease? Weirdly, I (an ex-cancer patient) was told, first that this was a very rare cancer, then, that this is an easy cancer that can just be cut out and be completely contained. (Alarmed, I thought — unless it isn’t, no?? And an easy cancer??)
So as you can surmise, I was already convinced of explant without even the CTD issue by now, but we were meeting on that basis, so I was then told the studies they knew of did not implicate CTDS. So I said that they didn’t back in the 2000s, but we know, from recent articles, that there were less than ethical measures practised in getting those statistics and that some women are getting better after explant. Also they are definitely encouraging further studies, which implies something, let alone the 80,000 (!)women in the US who are in the Facebook Breast Implant Illness group…
I was told I had a very rare disease — UCTD. We all know it’s not THAT rare. But I noted the same terminology with regards to the BIA-ALCL cancer. She knows I have a rare genetic condition too - BRCA1. So rare things don't feel that rare to me and besides, people who get rare bad things often get rare good things too, like I had complete death of the tumour in reaction to my chemotherapy. Very rare! And I feel I could also have a rare positive reaction and have my UCTD retreat after explant. I asked if she had any patients coming in with auto-immune diseases and wondering about their implants. She paused a long time before saying, “a few”.
I sense there is a quieting from overhead going on — possibly not a bad idea as this situation could explode in a panic and certainly a measure of calm needs to be present. The UK apparently has a lot of textured implants out there. All I could find on the Government Health Safety website was an alert issued April 4, 2019 (but first published in 2017, so it’s behind what is going on now). It is only regarding BIA-ALCL cancer and Significantly they are working with an advisory committee:
“The group are consulted on clinical matters, and based on an analysis of the latest scientific evidence, our advice is there has been no new evidence of an increased risk to patients above what is already known and there is no need for people with breast implants to have them removed.”
I personally think that what is already known is enough information for me! And had I known this at the time of decision-making, I would not have made the implant decision. End of.
Despite all that, the appointment wasn’t all shocking and difficult. She started to hear me and climbed up on the bed next to me and though she kept suggesting different kinds of implants made by different companies and with smooth textures, she finally drew a picture of what she would do for explant. The biggest risk, because I want enbloc (capsule removed as well as the implants) so there is no silicone left in my body, is the fact that without breast tissue, the implants are lying directly on my lungs. She said that after a number of years the capsules can mesh with the tissue of the lungs and I could end up with a hole in the lungs. So she would leave in a portion if that happened. Okay.
Next, I was told I had to see a psychologist in the nx 6 weeks. To cover them, I suppose, or to be sure I’m not thinking my implants are communing with Mars! : ) She will write to my Rheumatologist and then I should have an appointment with my surgeon again in 8 weeks when I presume we plan a date.
We wrapped up warmly enough with this awkward energy between us. She said she knew I was an intuitive based on all that we went through when I had cancer and so she would trust that. She ultimately wanted the best for my health and I have decided, after an emotionally topsy-turvy weekend, to believe her.
Phew... Thanks for reading all that, guys.
Panda x
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