Return of BC Advice on mastectomy please

Posted on behalf of new member Alex

Hi all you wonderful ladies I have just found out on 28.2.13 that my Breast Cancer has returned. I was diagnosed in June 2010 with Grade 3 Her2+ and had a lumpectomy,chemotherapy,radio and herceptin and only finished my treatment January 2012.I have now been told that I have to have the breast removed and I am certainly not complaining. My dilema now is should I have my left breast removed too. I had been awaiting a reduction (I must have gone around the queue a few times when they were handing the breasts out as I have generous boobs) and was told they would reduce the left breast at the same time as my surgery ,so my prosthesis would be smaller and not show. I now find myself torn between this or asking for the left breast to be removed totally. I just don’t know what to do. Somebody please help me I am so confused. To top it off I have a bone scan on Monday and a CT scan on Tuesday before returning for some results on 14.3.13 with my surgeon. Thanks Alex

Hi Alex
Sorry you’re having to come to this site but there is lots of support here & the helplines are excellent.
2005 I had BC left side - WLE ,
2009 multi-focal BC right side - mastectomy,
now recurrence right 2012
I didn’t find my mastectomy too dreadful but with hindsight wish I’d had mastectomy 2005 (there was talk of it but after good response to chemo, had WLE)
I’m not that big 36C, I’m 61 & not had any reconstruction, as simply don’t want extra surgery & from some of the girls I know it’s never quite as expected…however sure there are ladies here that can tell you positive stories.
I manage with prosthesis & wearing layers/scarves etc but would be easier if my chest was balanced! (and me too!) so I personally would have double mastectomy.
I worry more about not having lymph nodes!
Good luck with scans & decisions, I know the waiting & the ‘what if’s’ can be so hard
Best wishes k x

Hi Alex
I am sorry to hear that you are having to go through this again. My experience is not the same as yours, but I did find that I had a similar decision to make as I was diagnosed with bilateral breast cancer and I thought it might be helpful to you to hear how I made my decision. Whilst it was a foregone conclusion that I had to have a mastectomy on the left side, I was offered breast conserving surgery on the right side. I then had to decide whether this was what I wanted, or whether I would prefer a bilateral mastectomy.
I found this decision really agonising, and one of the things that really helped was the referral to a psychologist at the hospital at which I was being treated. Is this something you could ask your breast cancer nurse about and see whether it is available to you? For my part, there were a lot of variables to consider, including the fact that I wanted immediate reconstruction with implants, even though there was a risk of having to have radiotherapy, which can affect them negatively.
In the end I chose to have a mastectomy with immediate reconstruction on the left and WLE and lift and reduction on the right. Even though in retrospect I would probably make a different decision and have a bilateral mastectomy just for the sake of basic symmetry, I don’t regret my decision, because I made it based on what I knew at the time, and because I was so well counselled by the psychologist and my breast cancer nurse. One of the things my psychologist recommended was that once I had made the decision, I write a letter to myself to read in the future, to remind myself on what basis i had made it. This was invaluable, and reminded me that at the time of my surgery there were quite a lot of unknowns - including a second op to get clear margins and to remove the lymph nodes on the right hand side, and yes whole breast radiotherapy on both sides.
Good luck with your CT and bone scans. I’ll be thinking of you. If I can help any further at all, please feel free to PM me.

Thank you Louis and Kath
You have both given me sound advice . I will talk to my breast nurse too. It really has been a nightmare over the past week and a half but I feel ready for everything to just begin now.
I have just had my bone scan today and now need to get through the CT scan tomorrow at 6.00pm. The mammagram I had in January did not pick the cancer up and it was just by sheer “good luck” I got cellulitis in my breast because of my lymphoedema ended up in hospital and had the cancer picked up by an ultrasound scan. Still cannot complain too much as they have made sure the scans have been prompt.
I will keep you updated and wish you both well. Again thank you so much for replying

Hi Alex, hope all scans are now done, and you get good results quickly.
My situation is a little different. I was Dx January 2012 with HER2+ IDC in my right breast. I chose to have a prophylactic mx alongside my bc mx, and had an immediate DIEP reconstruction back on June 2012.
My team fully supported my decision, but I did have to meet with a Psycologist to ensure I was of sound mind.
I am confident I made the right decision, i’ve reduced my future risk as much as possible, and my new boobs are pretty amazing - I’ve just had stage2 of the recon so I now have nipples:)

Hi Louis Kath and Sue
I decided to have the right MX with left side reduction. I am doing fine. My CT and Bone Scan’s both showed no further spread.
The cancer was a whoping 52mm and is again Her2+ Grade 3 as suspected. The Oncologist (my own is on maternity leave and I trust her implicitly so how dare she) said she is honestly worried about it as I had very strong chemo last time . Will find out what type of chemo I am to have tomorrow and I start on Friday.
Thanks again for the input from all of you.
Good luck with the Journey Alex xx

Hi Alex, good news about the scans!! Thinking of you and hoe you have your chemo plan now!
Sue xx