I have triple negative breast cancer and have been offered a single full mastectomy.
I’m 40 and believe my tumour is quite aggressive. I just want to rule out any possibility of the blinking thing coming back. From the beginning of my diagnosis I have been very keen on having a double mastectomy but I feel my surgeon wasn’t that keen, however my appointment was about 7 minutes with him, so no real discussion at all.
All my genetic testing was negative and there is no family history that I know of.
just wondering if anyone has been in a similar position to me? Any fors or againsts are welcome.
also would love to hear from ladies that had triple negative breast cancer and are now some way down the line to ‘normal’ life. I feel quite scared about having triple negative as I know it’s probably the worst of the Brest cancer bunch!
I’m TN too. There’s a tendency to panic once you hear Triple Negative and, yes, it is the most aggressive and the hardest to treat because it’s not hormone receptive. However there are lots of treatments available, with new drugs arriving relatively speedily. Trodelvy is the latest, awaiting NICE’s endorsement but already in use by individual arrangements between hospitals and the manufacturer. However it’s a third line treatment so you won’t get that soon! But it shows things are changing for us.
Regarding the double mastectomy, there are no medical reasons to justify it. TN cells, if they do escape the treatments, can crop up anywhere. It may be breast cancer but it could be in the liver, the bones, eyelid… so I can understand your surgeon’s reluctance. However, if I’d know all the hassle, I’d have asked for a double mastectomy. I’ve never felt comfortable in a fortress bra with a prosthetic that slowly glides to the centre, pulled by the weight of my natural boob. Knitted knockers can be great but again, nothing counters the pull of the other breast. I’d rather be flat on aesthetic or comfort grounds. As it is, the bras and boobs have been discarded and I’ve embraced what I call monoboobery, Not the best of looks so bang goes my Jigsaw addiction but comfortable and I forget about it.
I don’t think there’s any point in being scared. We can’t change things and just have to cooperate with treatment. Do avoid Google as it can be terrifying. There is a well-moderated FB group - Triple Negative Breast Cancer (UK and Ireland only) - where you will find many in the same boat as you. But just remember, people don’t think to post when things are ok, so there is a tendency to find worries and problems rather that success stories. Nevertheless, I’ve found it very helpful being among others facing the same challenges.
I was diagnosed with TNBC originally in 2011. Had a lumpectomy, chemo and rads. It came back at the end of 2018. The tumour was another primary in the same breast and again was TN, that was when they told me it had spread to my lungs (lots of cavetating nodules throughout all 4 chambers). They said that because I was now Stage 4 they don’t do invasive surgery but instead treat it holistically with more chemo, which I had from Feb to May of 2019. However it didn’t work so they had to do a mastectomy.
I wanted a double mastectomy and also wanted to remain flat and asked for a flat closure. Sadly, I couldn’t have the double mastectomy because I was having a hysterectomy at the same time, but they agreed to talk to me about it afterwards, but did say that it’s against their policy to remove healthy tissue.
I discussed having the 2nd mastectomy with my surgeon twice, explaining my reasons. I was told that I’d need a psych assessment if I wasn’t having reconstruction!!! Another policy!
I had been advised by a moderator of another group “Flat Friends UK (FFUK)”, not to talk about risk of the cancer coming back when justifying my request for 2nd mastectomy, but to focus on wanting to be symmetrical for mental health and wellbeing. I was a 42 GG so my remainer was huge and I was very lopsided and was having back issues. For me I knew that being totally flat was where I wanted to be.
I would highly recommend joining Flat Friends UK. They have a Facebook page you can have a look at. I joined before my op to ask what it was like to live flat, to make absolutely sure I was making the right choice… I’m so glad I did, the ladies in the group are amazing, so knowledgeable and so supportive.
In the end my 2 discussions with my surgeon justifying all my reasons did the job. She was brilliant and was satisfied I knew my own mind and had good arguments and therefore bypassed the psychological assessment. Sadly my op was delayed due to Covid but I went fully flat in June 2021, almost 2 years after the SMX (it was originally scheduled for Jan 2020).
I’ve only recently been diagnosed with TNBC - I’m a couple of months behind you. I do know I’m going to have surgery but I’m guessing I’ll have to get the chemo knocked on the head before I’ll know what kind. Hoping you’ve moved forwards since you last posted? xx