I want a double mastectomy instead of mastectomy only on the affected breast, how can I convince the doctors?

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Long story short, in a range of three weeks I went from going to the GP with a cancer leaflet in my hand and GP saying I shouldn't worry about it at all from a diagnosis of Inflammatory breast cancer stage 3 grade 3 on my right side. No DNA markers found.

I have a toddler who's not even 2 years old yet.

So with regards of doing whatever I possibly can to reduce my chances of this cancer to come back, I am willing to.

Given I'm on my 40s I'll probably be menopausal by the end of treatment (I think I already am but gynecology team says "just because" it's been 3 months already with no period it doesn't mean I'm on menopause already). Anyway, is unlikely I will be able to have more biological children, so breastfeeding is not something I'm concerned about. Therefore even though I'm very grateful my breasts allowed to feed my little one until 1.5 years I would like now to have both breasts removed. It's the best for my mental health (I will know I am reducing my chances of BC coming back) and for my family (best to have mommy with no breast instead of no mommy).

Every time I've brought the subject to breast care team or oncologist they ignore and say "we'll see when you get to the surgery phase". How can I convince them that the best for me is to simply remove everything possible?

I know already that when treatment ends is really when all anxiety will pile up every check-up to see if I'm still cancer free or not. Given in 3 weeks my cancer progressed so fast, I'm afraid intervals between follow-up sessions won't give me any peace of mind.

Anyone here managed to "convince" doctors to perform double mastectomy?

Thanks!

  • FormerMember
    FormerMember

    Hey! I have different diagnos, but have asked for same

    The answer is - no any abnormality in right breast, but left one has cancer. Despite the fact I have fibroadenoma in my right breast, which can turn to cancer...

    Because I also would like to remove both and get implants instead of left side mastectomy and DIEP reconstruction with further risk in right breast as well

  • FormerMember
    FormerMember

    Hi,

    sorry to hear you have breast cancer. 

    I have BC in my right boob, but two masses (grade 3 triple negative and grade 2 ER positive HER negative), diagnosed in July and it was my first though I wanted double mastectomy, as I was very adamant, instead of surgery they done chemo first, I have 4 weeks left and then surgery in March.

    As NHS doesn’t do anything unnecessary, I was offered genetic test, which came negative and then lady done risk of cancer coming back according to her calculation at 20%, which is quite high so I should be be granted double mastectomy, but you can also be referred to counselling  I think but you have to fight for what you want, I am 37 and having one boob fake and the other mine, my brain wouldn’t take it, which I explained to them. 

    Good luck 

    Fight for what’s best for you

    Lucy

  • Hi , I had an elected bilateral mastectomy September 2021.

    My lovely surgeon agreed to do this when I requested but my situation a little different as they also had to remove my ruptured silicone implants at the same time . Cancer in left breast but also removed right as I have always suffered with cysts in my breasts and told her I would be forever paranoid and returning to the breast clinic thinking there was cancer in the other breast.As they we’re already operating to remove the implant she agreed to also remove the right breast. I know they don’t usually remove a healthy breast but I do think it also depends on individual surgeons.

    good luck .  

  • FormerMember
    FormerMember

    Hi 

    Sorry to hear about your diagnosis .

    There is another thread running about should I have a double mastectomy which I have just posted on.I asked the same and they wouldn't do it but you have to keep fighting and say its for backache rather than risk of recurrence.

    Have a look at the other thread.

    xxx 

  • I didn't knew I could ask them to calculate and tell me chances of my cancer coming back. Will definitely ask the oncologist on the next appointment!

    I also think is for my mental health this, as I will be in constant fear of having to go through cancer again on the left breast. I already feel it stinging during chemo even though I don't "officially" have anything there. Oncologist said for the moment "ignore" the stinging Disappointed

    Hoping I can convince them to remove everything possible.

  • FormerMember
    FormerMember in reply to FormerMember

    Hi lapa, same as. Cancer in my right breast and a fibroadenoma in left breast, and I had to have tests again for left as well as the right. So if they were worried about cancer in the left breast why not remove it. I asked for them to remove both but wouldn't. Said they will not take a " a good breast" but it leaves you with that worry. Thought I had cancer two years ago but was the fibroadenoma. So good, only had a check year after by mammogram , left and right. Then last year cancer in right. Just had a masectomy, so why leave the one with problem? To go through it all again. 

  • FormerMember
    FormerMember in reply to IBCTN Fighter

    I don't think they will, I asked different people and definite NO. I know how you feel.

  • FormerMember
    FormerMember in reply to FormerMember

    Good luck.  X

  • FormerMember
    FormerMember

    I also asked this because I'm elderly (70s)don't need them any more and have large breasts. I already walk with a limp from a hip op 7 years ago thought I'd be more lopsided but the answer was no, we don't remove healthy tissue! Keep fighting for what you think is best, maybe they will realise it's a better option for some of us. All the best.