Breast cancer for the under-50s

Breast cancer is far less common in the under-50s, but this can leave younger people with a diagnosis feeling isolated. This group is a place for them to come together, share experiences and support each other.

Advice needed

Katrin
Posted by

Today I had a meeting with the plastic surgeons to discuss my mastectomy and breast reconstruction as I am about to finish chemotherapy.

So since I found out I had breast cancer in July I have always told my surgeon and oncologist that I would like to have a bi-lateral mastectomy. There answer was that we needed to wait until the gene testing was back before we make any decisions. Well, the gene testing came back and it turns out I don't carry the gene (which is fantastic news) but now it means they won't do the bi-lateral mastectomy. There plan is to do a single mastectomy and rebuild the breast using the skin and fat from my stomach, essentially giving me a tummy tuck! 

I asked the plastic surgeon today if I could have a bi-lateral mastectomy as I am paranoid I will get breast cancer again in the remaining breast later on in life. I am only 31 so all being well I should have a good few years left! I feel I will spend the rest of my life worrying. The plastic surgeon told me "they don't like doing unnecessary surgery" which is understandable but I'd rather them just do the bi-lateral mastectomy and not do the reconstruction! She also said "it's unlikely that I will get cancer in the remaining breast"! Well it's unlikely you get cancer at 30 but I still bloody got it!!!!!

Basically I just need some advice, am I crazy for pursuing the double mastectomy? Should I just accept the single mastectomy and reconstruction? Is there anyone who can help me?

Thanks

lily0403
Posted by

Hi there. I had a mastectomy with delayed reconstruction two years ago. I too dont carry the gene even though im 3rd generation breast cancer sufferer. I opted for having the second mastectomy and reconstruction using implant. They did a mammogram on the left side and said it was clear. So we went ahead in september and they sent it off for analysis and they found a 3mm primary in that one aswell. It was probably there from the beginning and its very rare for that to happen. It was also lobular and they are hard to see on mammogram.  Im sure they will keep a close eye on you especially as your so young.  I didnt have chemo as it had already spread to my bones. So we keep it stable with medicine.  I hope this has helped and not made you anxious. Its a 1 in 4000 chance of getting it in the other one. But the decision should be yours. Xx

Kar44
Posted by

I also wanted a double mastectomy due to the reasons you stated, I was 39 at diagnosis. I was also told because I didn't have a gene mutation I couldn't have one. When I had my original mastectomy they found another tumour than hadn't shown up on any scans so although I've recently had a clear mammogram I don't trust it.

lily0403
Posted by

I wonder why they wont give you a double mastectomy . I just asked and they agreed. I would suggest maybe getting a second opinion.  You would think it would be the patients choice as to which surgery option to go for. X

ronstar
Posted by

Hi

I've just seen this and thought I'd drop by and give you my experience. I think it depends very much on the hospital and the consultant. I have no family history and was 47 at diagnosis. I asked for a bilateral and had to jump through some hoops to be approved but was eventually. I didn't have it in the end - I had a single mastectomy with no recon. There are a couple of things that I think helped me - one is that I had been adamant from day one that I didn't want reconstruction. The other is that I wasn't asking for it due to fear of recurrence - I mainly wanted it for symmetry, though obviously I do also have a fear of recurrence (I think we all do)

I had to have a couple of long discussions (heated discussions) with my surgeon and BCN and I had to agree to a psychological assessment. The psychologist discussed my reasoning with me - we spoke about my lifestyle, job etc. I used to do a lot of running and exercise before I had cancer and it was a real worry for me how I would feel about that afterwards. He concluded that I was pedantic, a perfectionist and was very concerned about the way things look (lol - not in a vain way, I'm very visual and notice a lot of detail) his recommendation was that it was a very reasonable thing for me personally to want. It is still on the table if I want to have more surgery, but I don't.

My surgeon said a few pertinent things to me during our discussions. One was that the chance of cancer in the other breast is only slightly more than in someone who has never had cancer (not a lot of help when, as you say, we got unlucky already) but also that a mastectomy doesn't remove that risk, it only reduces it - there is always a small amount of breast tissue left behind and so there is always the chance it could develop a tumour. After a bi-lateral mastectomy there is little or no follow up - no yearly mammograms!

He also told me that he had seen women take that route and then regret it later and the one thing he couldn't give me was my own breast tissue back - he said "I don't want you to sit there in a couple of months time and ask me why I let you do that" Although it didn't change my mind at the time, it did help me to see it from his point of view. He wanted me to have the single mastectomy and see how I felt after a while. I knew I would never go back for a surgery once I was recovered but I did eventually decide to have the "just one for now" option - it was the right thing for me at the time.

There have been other people on the site who have had bilaterals - some people seem to have them agreed with no problem, some people seem to fight and fight and still get refused. I took the view that it was my body so should be my choice and I was lucky enough to have a surgeon who was quite caring and understanding. In all honesty, a mastectomy when there is no tumour is a fairly straightforward operation, especially compared to the DIEP flap so their argument about unnecessary surgery makes no sense to me.

Only you really know what is the best thing for you - and that may change in time. With all the cuts to the NHS etc it's getting harder for people to get revision surgery when they change their mind or don't like the result, but actually, I think you can only do what seems like the right thing at the time. None of us knows how we will feel 6 months after treatment, let alone a few years.

Trust your instincts - why not think through all the pros and cons then ask for another conversation about it and see if you can convince them.

I will keep my fingers crossed for you!

R

SarahSS123
Posted by

Hi

just wondered how you are getting on? Did they agree to a mastectomy? Did the chemo shrink your lump well?

Im similar age to you, 37. I was diagnosed with triple negative a  year after having my first baby. Coming towards the end of chemo and waiting for my BRCA results and MRI to see if the chemo has done the job. Hope all is going well for you