Hi Lone, my surgeon has agreed to do the bilateral mx for me. He said he would usually refuse to do it as in terms of risks it’s not often justified. I think because I’d researched it and thought about it, he felt I was making a rational decision. Also because my mother is currently having chemo for a stage 3 recurrence in the other breast, he felt that was an extra worry. I’m surprised as I was told by my bcn that the surgeon was against prophylactic mx in general, but he is a very nice man and listens to what you say which is not always the case with doctors. I’ve agreed to have a last think before booking the surgery, so I’m trying to be calm (not that easy!) and think it all through again. I hope you manage to sort your problems out soon - let us know how you get on. xx
I am pleased that you will get what you wanted bubbletrouble, but also jealous too. At least there are some surgeons out there who will listen.
I have started to write some letters, but time has probably run out for me to get my double mastectomy and at the moment, I still haven’t even got a date or surgeon for a single!
Keep your fingers crossed?
Lotsa love
Lone xxx
Well everyone, I failed in my efforts to get a double mastectomy next week, but I gave it my best shot. Thank you for all of your wonderful advice. The second surgeon I saw on friday said that I needed to live with the assymetry for 12 months before he would reconsider giving me surgery to the other side.
I am not happy, but tired of fighting and have to get used to the fact that I will only be having a single mastectomy or go nuts!
You have all been so brilliant and I am incredibly grateful for your advice and support.
Lots of love, hugs and much grattitude,
Lone xxx
Hi again Lone, I’d lost this thread somewhere… shame, but I am happy that you were offered the other one in a year if you want it. Not ideal, but the option is there. Will stay in touch on the other thread, Lynne xx
Please can anybody point me in the right direction for the helpline please. I had a single mastectomy in January 2011 but i want the other one done and the surgeon wont do it because the other breast is health. I am eligible for the gene test because of the family history but it can take up to a year for the results to come back but regardless of the test i still want the other breast removing. Any help would be appreciated and i forgot to mention that my cancer was stage 3 and Triple Negative and i have also had 6 months of Chemotherapy so i am not going into this blind and i dont need any councelling like my consultant suggests. Thanks in advance everybody.
Hi there cartony
Welcome to the BCC forums, I am sure your fellow users will be along soon with further support.
The helpline number is 0808 800 6000 and the lines are open 9-5 weekdays and 9-2 Sat.
Take care
Lucy
Thank you so much. I am so shocked after reading the comments on this forum that so many women are going through the same as me, I thought I was the only one until i found this forum.
Hi Cartoony, there are so many different experiences and different approaches to this, I was lucky enough to have a surgeon who was prepared to listen to me unlike poor Lone, although she was told she could have the other mx in a year if she still wants it.
As you can see from reading this thread, you will have a chance if you formulate a good argument and try not to be emotional about it (!) - mine encompassed risk and lifestyle including my feelings about being lopsided. I had the bilateral mx 5 weeks ago, and my results were that I had no more cancer on the right side with clear nodes, and in my healthy breast I had lobular hyperplasia, which is not cancer but is a risk factor. So with my family hx I felt there was a fair chance of me developing lobular bc at some point. I’d decided not to worry about the results anyway, but this did make me feel vindicated. I do hope you get what you want, let us know how you get on, or if you get any more problems. Hugs, Lynne xx
Sorry Cartoony, forgot to mention that I saw a counsellor because of a bereavement at the time I was being diagnosed, and I discussed my bilateral mx with her. She was helpful and supportive, and this added another factor in favour of having the bilateral. I only had 4 sessions, three of which had nothing to do with the mx issue, so maybe if you do go to a counsellor it’ll be generally helpful for you and also add weight to your argument. xx
Hi Bubbletrouble thanks for the response. I have actually had the Gene test and am awaiting the results. I forgot to mention in my last post that the professor at the Gene clinic has suggested in a letter that i have a copy of and sent to my consultant that she should do risk reducing surgery on my other breast regardless of the Gene results and yet she still refuses. I am really trying to keep my emotions in check which has been hard this week. The other day i felt like a child that had been told by Santa Claus that he would definately be getting his favourite toy for christmas and when christmas day come it wasnt there because when I was going to that hospital the other day, I clearly was under the impression I was going to be told when the surgery would take place not that it wasnt going to. Its just a waiting game now, I just dont know which way to turn.
I had a MX just a year ago and at the time I asked to have the healthy breast removed too. They just said it was out of the question as it wasn’t a genetic form and that I’d feel different in 2 years time. I don’t feel any different and doubt very much that I will. I hate having one boob and would be much happier without any and wish I had pushed more for what I wanted as now I don’t feel like going through it all again.
hi i had my original diagnosis 10 years ago left breast, i had a lumpectomy, chemo and rads,
in november 2010 i had another tumour in my right breast i had a mx this time chemo, and rads to follow shortly,
i have been gene tested braca 1 and 2 negative, so that was good news,
i am going to have a mx on the left side, just as soon as i have recovered from everything else,
i am 44 years old with 3 children, i am not prepared to live worrying whether or not the breast cancer will strike again, there fore i have made my decision and intend to stick by it.
i dont think i could go through chemo again, it has been an horrendous experience for me on tax, it could have been worse but i have really struggled.
love liz xxx
Hi Guys! I have had my mastectomy after chemotherapy. I was turned down for the double mastectomy but have been told I can have it in a year if I still want it (so far I still do).
I was quite unlucky post op because I rebled twice. They said it was because I had chemo first and my skin tissues were affected by the chemo so much they didn’t cope with the operation. So I suppose if I had of had the bilateral, I could have been in even more trouble.? I have also ended up with lymphodema and several seromas post surgery.
I now realise that waiting the 12 months for the other side to be done will allow my skin tissue to heal from the chemo. So maybe, I was meant to wait…?
I do still find it hard coping with being lopsided. I do not want to have a reconstruction (ever!!) But I am still undergoing treatment (about to start the rads soon) and so my mind is kept occupied with all of that. I am really not looking forward to the thought of another operation, but I really do feel that going breast free is the best option for me.
Good luck to anyone trying to get a double mastectomy with a healthy breast. I hope it all works out for you?
Take care
Lone x
Hi Lone.
Glad to hear you have had your op soz it was not all plain sailing for you. Do hope the rads was not to unpleasant for you either.
Im due to see my surgeon this thurs about reconstruction, he keeps making excuses for delaying it. I Hate being lopsided and wearing this awful prosthesis. All my tests are ok , so there should be no excuse for putting it off any longer !!! BUT we will see. As the QA Hosp is in so much debt Im sure that has a bearing on what gets done.
I do hope you are getting on ok and finding life getting back to normal, I often think of you and wish you all the good health you can pos have.
Take care
Love Maria x
I requested a bilateral mastectomy and was told to wait a year in case there were any complications which might delay chemo. I discussed my feelings re this with the BCN and had a further consultation with the surgeon. I jotted down all the pros and cons and took them with me. Although not totally seeing my point of view reluctantly I was allowed to have it. Following the surgery I was thrilled because I had very large breasts. However - although I don’t regret the loss of both breasts I now have a very tight band around my chest and odema around the ribcage on the non cancerous side. The discomfort is quite severe and was something I did not expect. Any surgery carries risk and healthy tissue is not usually removed without reason. Psychological reasons are valid and you could ask for a second opinion but that would delay things for you. I would have waited a year if I had to but I do have lung problems and two anaesthetics was a risk I did not want to take.
I do hope all goes well with you.