I’d really appreciate some advice. I had a mastectomy last November and I’m due to finish chemo at the end of the month. The oncologist suggested I should consider having the other breast removed as it was a lobular cancer and apparently there is some increased risk of my good breast being affected. This is no problem at all to me as I asked right from the start if the surgeon could remove both but was told to wait until after I’d finished radiotherapy and then would need to speak to a psychologist to make sure I understood the implications of removing healthy tissue. What I’m really worrying about is when I should ask for reconstructive surgery or if I really want to have it at all. I would rather be flat both sides than lop-sided as I am. Unfortunately, though, the scar from my surgery isn’t nice and neat like some ladies’ - I’ve got to have a haematoma removed before I have radiotherapy and there’s also a big fatty bulge near my armpit. My husband obviously says he wants what’s best for me but I think he’s be more comfortable if I had a recon. I don’t know enough about this at all - will I have the other mastectomy and then go on a waiting list for reconstructive surgery or what? Sorry if this is garbled, I’ve got up in the middle of the night and my thoughts aren’t too coherent.
Hello Likeslilac,
Sorry you are going through a tough time and wanted to offer support. I had bilateral mastectomies and reconstruction in Feb 2012- this was following a breast cancer diagnosis in 2009, followed by brca1 mutation diagnosis in 2011. When they did biopsy from removed tissue, a new breast cancer was discovered which wasnt visible on scans. Although, I didn’t have lobular breast cancer like you, what I did have in common with you was a very high risk of a new cancer in what appears a currently healthy breast (when I made decisions re. surgery didnt know about new cancer).
Anyway, what I wanted to say, in case it helps, is that you should not feel rushed into any decision and to highly reccommend talking to a psychologist/counsellor. I dont know if it will help, but it took me about 6 months to decide what I wanted to do. You could also contact breast cancer care’s one to one service and ask to be put in touch with someone who has a similar experience to talk your feelings through if you thought this might help you.
Like you, I considered not having reconstruction at all. This is a very personal decision only you can make, but in the end I opted to have reconstruction (and choice was limited based on my weight and build).
As far as I know, (and I might be wrong) there is a time delay between finishing rads and having reconstruction to allow tissue to heal and recover. You can use this time to consider options and your feelings. It sounds like you want to know whether the surgeon would want to do surgery on your ‘healthy’ breast at the same time as reconstruction, or at different times? There is a good booklet on breast reconstruction which breast cancer care do- am sure if you ring them they can send it to you.
Feel free to ask more questions if you think I can help at all.
Good luck, Rattlles
Hi there likeslilac
I thought it might be helpful for you to read our publication on Reconstruction so I have given the link here to the page where it can be either downloaded or ordered:
www2.breastcancercare.org.uk/publications/treatment-side-effects/breast-reconstruction-bcc7
Hope you find this helpful
Best wishes
Louise
Facilitator
Thank you for your very helpful advice; it’s good there is so much help and guidance available. I think I was just geting overwhelmed with all the possibilities and options. I still don’t know what’s happening regarding BRCA1/2. The blood sample I gave didn’t yield enough genetic material so I’ve got to wait under I’ve finished chemo and then submit another one. The genetic counsellor said if I was positive for BRCA1 then it would add weight to my request to have the other breast removed.
I was chatting to a lady on the chemo unit last time I went for treatment. She was diagnosed with lymphoma 3 years ago and this was her first chemo session as her eye was affected. We both had a bit of a laugh when she said ‘It’s all right for you breast ladies, it’s just have the op, then chemo and rads, it’s not complicated like mine.’ I wonder if I’ll ever have an uncomplicated life.
Hello likeslilac
I had a bilateral mastectomy without reconstruction between chemo and rads (finished yesterday - hooray!). Only one breast was affected but like you, I didn’t want to be lopsided. I made my decision because I couldn’t face any further surgery but if that didn’t bother me I would probably have gone for reconstruction after rads instead. However, I don’t regret being flat chested and breast free - it is liberating, and I’m very glad that I don’t have to worry about further surgery; like you, my choices of reconstruction types were limited. The surgeon supported my decision but insisted I saw the onco-psych first to confirm that I was really doing the right thing for the right reasons. It is a very tough decision to make and I only had about a week to think about it once the idea was in my head - that was too short, really - but for me it’s better than either being lopsided for the rest of my life or having reconstructive surgery.
I was worried about how I would look but there are many clothes out there cut to flatter and I think I look OK.
I’m certain I made the right choice but if in the future I feel the need to have breasts again, then I can have a double reconstruction. Unlikely, I feel, but possible.
Hello tired1: it was nice to hear from you. I’m sure that’s how I want to be - flat chested and breast free. I wish they’d given me the chance to discuss this before I had surgery then it could all have been over and done with.