Forum Discussion

Jailbirdstreet's avatar
8 years ago

Advice please re surgery options

I had a lumpectomy + lymphectomy in Feb and they found multiple foci of DCIS in the margins but zero cancer in 23 lymph nodes
I was rushed into chemo due to a 'worrisome lesion' on my spine which they thought was probably not metastatic disease but treated me as though it was just in case. My post chemo scan found that lesion unchanged and the report says 'no sogn of metastatic disease.

They want me to have my right breast removed in  a couple of weeks. 
I said I wanted a bilateral mastectomy due to the risk of recurrence, but the surgeon is saying he will do my left breast when he does the first surgery for the implant reconstruction on my right, in about 6 months time.

Even though the team that reviews the cases said I was a candidate for immediate reconstruction because they don't think I will need radiotherapy, he does not want to do that, as he says doing the two ops together can cause complications etc.

I said yes to his plan (right breast mastectomy in a few weeks, no reconstruction til next year) but I came to work and sat down to tell my boss and started crying...I really am not happy with this plan, it seems like the worst option.

Am I being irrational? I really want immediate reconstruction and I feel the surgeon isn't giving enough weight to my concerns. When I said I don't want to be lop-sided, he said "your breasts aren't that big, it won't be too bad" - I am a 16DD! I appreciate the single mastectomy will be less traumatic now, but then I have an extra traumatic surgery to anticipate in 6 months.

A big part of my resistance is feeling like I have already been over-treated. They took my lymph nodes but there was no cancer and I've had intense chemo because of a lesion they never really thought was cancer. I know this is not helpful thinking but it is what I am thinking. 

I would love it if members could help me feel better about this plan / let me know if they think I should push harder for options. 
  • Hi jailbird..great you are having second opinion
    Perhaps reason for delay is the chemo treatment youhave had
    Another reason could be pathology post mastectomy could indicate need for more treatment..
    More info requIred from surgeon as to reason would be beneficial ..you are entitled to ask as mmany questions as you like
    All the best B
  • Hi @Jailbirdstreet you poor thing, it really sounds like you're not being heard. I have recently had bilateral mastectomy with immediate reconstruction as I didn't need rads, and I'm so happy I had both done together. Please please speak up and insist on what you want. If there's one thing I've learned since my diagnosis 
    in June, is to do lots of research, ask lots of questions, then do what YOU want, of course your surgeon has your best interests (one would hope!). You know your body and your mind - if you're not happy, you are entitled to a second opinion. Best of luck on your, and I mean YOUR decision.   Xxxxx
  • Hi there @Jailbirdstreet I was diagnosed in early February and surgeon wanted me to focus on removing the breast with cancer first and worry about the other one later, as did my husband. Like you that made me really upset and didn't feel right for me. I decided to trust my gut and insisted on a bilateral mastectomy and am so glad I did. Have had 6mths chemo since then and radiation will start in a few weeks and am so happy I did it my way. Surgery was stage 1 then treatment then recon when the time is right. Good luck but don't be afraid to be strong and get what you want. It's your body at the end of the day and you need to do what feels right for you xx
  • Thanks, your comment re the 6 months is very well made. I guess I struggle because I have to accept so much on faith. I want to believe immediate reconstruction is possible, so I am doubting his assertion that it isn't! I appreciate the support x

  • It's hard when you feel unhappy with the treatment offered, but it doesn't seem that your team is letting anything slide. You are certainly entitled to a serious discussion on options and the pros and cons of each. If you are satisfied that there is a really good reason to delay reconstruction, then be assured that many women are mono- boobed, some for the rest of their lives, and manage fine. 6 months is a bit telescopic - for ever when you look through one end and not so very long at all when you get to the other end. But it's your body, your breasts and your concerns so don't be fobbed off, get the information you need. Best wishes.
  • Thanks Pamela, I think he's not planning to put the expander in until next year but tbh some of the meeting is a bit vague now, I will ask. 
  • My daughter in law had the 2 surgeries they have planned for you. First the breast with the cancer & then the clear breast later on but she did have an expander implant after the first mastectomy which meant her breast size was gradually increased as the skin allowed.
    Perhaps you could ask about this option