anyone in similar situation

Have had bi latteral mastectomy with immediate reconstruction 4 weeks ago using implant and expander. I had High risk of cancer LCIS am finding the boobs very tender and seem to be getting no extra support as my surgery was elective.
Have had 1st top up today and would like to chat to people in similar situation for reassurance.

Hi Houston4,

My situation is similar, I think. I had bilateral mastectomy with immediate reconstruction using implant and expander in May this year. This was to treat invasive ductal tumour and DCIS in one breast and DCIS in the other. I had to have mx on the right side, and elected to have the left done as well to minimise future risk and to hopefully get a reasonable match in the recon.

My surgeon fully inflated the implants (400mls) during the operation so I have not had any top ups. I don’t think many surgeons do this and to be honest I wish mine hadn’t as my chest was so tight I couldn’t take a deep breath until 5 weeks post op. Things have eased up now, but there is still some tightness - not pain as much as discomfort really. Some areas e.g. under my arm are numb. Now my periods have restarted I’ve noticed some tenderness in the week before - I thought that would have stopped!

Re your comment on extra support for elective surgery. There does seem to be a gap there. I’m assuming you’re not having further treatment (rads or chemo). I also don’t need these though should be starting tamoxifen soon. I felt a bit abandoned when the surgeon said to come back in 6 months to talk about the next operation - I’d been going to the clinic almost weekly for the last 3 months and then was left to my own devices - that’s where this site has been so important for support. I’m finding physically I’m fairly stable now but haven’t worked through all the emotional stuff. I had 8 weeks off work and am now doing short hours to get back into the routine. But 8 weeks seems a very short time to have to come to terms with the changes to my life that bc has dumped on me. Does that make sense?

I’m in Norwich - how about you? Do you have a breast care nurse, any local support groups? Are you taking pain killers?

Sorry - that’s a lot of questions.

Best Wishes
Misha

Hi,

I was diagnosed with breast cancer in March and had a mastectomy and then six months of chemo which I have just finished. I believe I am to start on tamoxifen soon. My grandmother had breast cancer and my sister has also had breast cancer twice and although no specific gene has been found to exist in our family, I believe I am still in the high risk category. My sister who was treated in the US had two mastectomies (at different times and for different types of cancer to me) and also had a hysterectomy on advice from her oncologist. I now have to consider whether or not to have re-construction. The other morning I woke up and my left breast was a bit sore. I immediately started to think the worst and I don’t want to live my life like that, thinking that the breast that is left is a timebomb. I am therefore considering having an elective mastectomy on my remaining breast. When I have talked to the doctors, they just tell me about statistics but nobody seems to address the psycological concerns that come about as a result of having this disease. I may never get cancer in my other breast but losing one has completely changed my relationship to my body. It seems to make sense to me to have an elected mastectomy and double re-construction at the same time, giving me piece of mind and hopefully getting a matching and smaller pair. The other thing that concerns me if going on to tamoxifen. I read in a paper recently that one of the rare but scary side effect of the drug is that it can cause ovarian cancer. I am 47 years old and unable to have children so the loss of my ovaries is no big deal to me. My sister had her ovaries removed as part of her treatment. When I have asked about this I have been told that I would then stand the risk of heart problems and osteoperosis but there are no real facts to weigh up between them. How am I supposed to make a decision on my future treatment when I am still trying to understand what has happened to me so far? It would be so helpful if anyone can direct me to some information that will help me.

Thank you!

Kate

Dear Kate,

I am sure you will soon get a lot of response from other forum users. In the meantime I thought I would just remind you about our Helpline which is there to offer information and support. They will be open at 9.00am. The number is 0808 800 6000.

I have also attached the links to a couple of BCC publications which may be helpful for you. “Ovarian ablation and suppression” and “Breast Cancer in Families”

breastcancercare.org.uk/upload/pdf/bc_in_families__final_12_june_08_layout_1_0.pdf

breastcancercare.org.uk/upload/pdf/ovarian_ablation_june_2007_0.pdf

Very best wishes

Janet
BCC Facilitator