I’m due to have a single mastectomy in a few weeks. The MRI I had to plan this showed an indeterminate area in my other breast. Today, after an ultrasound, they said it looked like a benign area. My concern is that I was also told this, 18 months ago, about the breast that is about to removed. It has since grown to 88mm and is cancerous.
I’m so concerned about having a single mastectomy and risking leaving the other breast, in case it follows a same path, but I don’t know how to persuade medical staff to remove it, without sounding like a ball of anxiety (which I am!). I’m thinking of writing a letter to my medical team to lay out my thoughts, but I don’t know what to include. Any ideas?
Dear @joy_ofbooks , your plan to write a letter setting out your thoughts sounds a very good idea as it will clarify things for both you and your medical team. Regarding what to write how about talking this through with one of the nurses on the breast cancer now helpline, and/ or talking it through with a nurse on the Macmillan helpline, or maybe someone at a Maggies centre if there is one nearby. You could also write down the negatives of not having a double mastectomy as you see it (physically, practically, mentally) and the do the same with the positives as a way to get started. Love Tulip x
I think you set out your case very well in your post. That is also very good advice from Tulip, as talking to someone on the issue would help you clarify your thoughts verbally for when you have to discuss it with the surgeons.
I was in your position 17 years ago. Lumpectomy for a lobular tumour in my ‘small, dense breast’ turned into a mastectomy, as the histology was awful. That breast had multiple satellite lesions on second histology. My brain screamed at me that why wouldn’t it be the same sort of tissue in the other breast also, so I asked for a second mastectomy which was refused at the time.
So after 10 years with 7 mammograms plus 4 MRI scans for follow up I was discharged. 5 months later I found a lump in my other breast and it was a ductal, her+ tumour. So not getting that second mastectomy cost me (and the NHS), not only the previous 10years of follow-up procedures, but also another mammogram, 2 U/S’s with biopsies, 4 rounds of chemo, a fractured humerus (when I fainted after the 4th chemo), the second mastectomy, a year of herceptin, and three years of zolendronic acid infusions. In fairness the second histology was completely unrelated to what I had in the first breast, but my feeling that I had “risky” breast tissue was spot on.
So I wish you luck with your request, and with whatever treatment you are facing. Please let us know how you get on.
I had similar in my ‘healthy’ breast. After two vacuum stereo biopsies under mamogram they said it was LCIS. Basically an undefined area that was not cancerous or even pre cancerous but could possibly become something dodgy, but equally they said it may never come to anything and if I was diagnosed with that alone I would not be offered any treatment apart from monitoring. I was also told it was fine to leave that breast alone and keep a close eye on it. BUT, I was offered the option to have a double mastectomy if I wanted to, and were supportive of my decision to have a double. I cannot fathom why they wouldn’t support your request for a double. Especially in light of the argument of reducing as much future risk as possible. I also said that my body had proved it can make cancer, so I wanted the other one gone on that alone, regardless of the LCIS! My final justification in my mind was also symmetry. Which is no small thing to me!!
I’m due to have my mastectomy on Thursday and heard yesterday that the MDT has approved a double (though they may do the second ‘healthy’ breast later). I’d heard surgeons were very reluctant to remove one where there’s no current sign of cancer but mine was very supportive. I’d written out my rationale for wanting a double to show that I’d thought it through and so I could refer to it in the consultation. In my case it was primarily that both breasts have always been very dense, lumpy and painful so the healthy one feels very similar to the bad one and I know I couldn’t cope with the constant anxiety of the other one going bad. I understand that I have to speak to a clinical psychologist before the op to assure them that I’m confident in my decision-one of the lovely BCN nurses said that’s in the national guidelines. I hope your team are similarly supportive of your wishes.
Thank you for your comments @Tulip29, @Eily, @rfg and @jenny4. I wrote a three page letter for my MDT, which was discussed today, and I have just had a phone call to let me know that my request for a double mastectomy was approved! I’m delighted. I didn’t think having a bilateral mastectomy was the sort of thing I would get excited about this year, but it feels like absolutely the right decision for me.
Yes, I’m so pleased they support your decision. Your message resonates so much with me as I didn’t think I’d be lobbying for a double mastectomy either-it’s bizarre how getting a diagnosis changes everything, isn’t it? I hope your surgery and recovery goes smoothly and that you get positive news afterwards.
I’m so pleased for you. Yes agree it is a weird new world we live in now in terms of what we celebrate! You advocated for what you wanted and you got it. You should feel proud of yourself! It’s so hard not to be passive when we are on this treadmill of treatment. For me I have to say I’ve been shocked by how little I feel in terms of ‘losing’ my breasts. I’ve gone straight to temp expanders with the hope that radiation doesn’t mean I have to go flat. This - for me personally - I suspect I would feel much grief about. But right now I have an approximation of breasts, with no nipples, but it strangely doesn’t bother me at all! I’m just so happy to be the other side of all the decisions and agonising over it, and fearing how I will feel! I also feel elated to be the other side of chemo and surgery. Just radiotherapy to go. I can see some light at the end of the tunnel.
So pleased to hear that your wishes have been heard and respected and that you now have peace of mind. Wishing you all the very best for Thursday and for a speedy recovery. Love Tulip x
I had a single mastectomy at the end of last year. I asked at the time about removing both but they said only one was necessary.
I should have been more forceful at the time, i should have begged if necessary, as i cry about this every single day.
Have just bought yet another mastectomy bra with pouch to carry this heavy awful fake boob that looks nothing at all in shape like the one i have.
Winter was ok while i hid in jumpers but summer is just awful.
Im at the point where i only leave the house for work and have no idea how i can face a fancy wedding in July, as frankly i look like a freak.
I would be fine with no breasts at all but carrying around a big lump of fake silicone in an ugly vest top has ruined my life.
Many would say i should be thankful as this operation may have saved my life but the way that i feel every single day, is no life at all.
Dear @flo4 , I am so sorry to hear how low and distressed you are feeling. Do please talk to someone on the BCN or Macmillan helpline about this to get some support. If this is affecting your mental health in this way and making you so unhappy then do speak with your treatment team and maybe your gp as well about your very understandable wishes… Losing a breast is no small thing and for many is a very traumatic experience. A lot of care seems to be given to individuals who have lumpectomies and are offered cosmetic surgery to even up their remaining breast so it is just as important for people in your situation to be listened to and offered the same opportunities to even up in a different way. I’m sure you could still ask for what you need so maybe write your wishes down as clearly as you can and send your written request to your team for proper consideration. Sending you love and hugs from Tulip x
