i am due to have a mastectomy and axillary clearance on 20th march, and am wanting a double mast, but surgeaon says no for at least 12 months, they think it is too soon for me to make that kind of decision. i have seen pschycologist for relaxation techniques to help me cope with only 1 breast, but i feel that they are condemning me to 12 months of mental anguish, and i feel it is unfair for them to make me go through that as well as everything else, and i know that this is the surgery i want. i know it is kind of 11th hourish, but i feel that this is MY body, MY mind, and MY life, and i dont want to be bullied into anything i dont want. i would be glad of anyones thoughts on this. thanks for all the support thus far.
Hi jaki, I had a mastectomy in December and also asked for the other breast to be removed, the surgeon would not let me, he was horrified. I have to say I have mixed feelings about it now, but I’m glad I kept the other one as I feel more like the old me. Yes it is very lobsided, being a 34DD, but I have a couple of lovely bras and I feel fine. I don’t think I will ask for the other one to be removed now. Is your cancer lobular or ductal? I ask as mine is ductal and has no more chance of reccuring in the other breast as anyone else, but I believe that lobular has a slightly increased risk. Good luck with your decision, it’s not easy.
I’m sorry for the torment you’re experiencing. I was in a kind of similar situation last month. You didn’t mention whether they’re offering immediate reconstruction, or whether you’d like that. It’s so difficult to know what to do when we haven’t been through this before and we don’t know what to expect or how we’re going to cope. I posted for advice myself in the DCIS section (see Newbie with surgical dilemma thread, or this’ll be an even longer post) and the responses gave me a different perspective from women who’d been through it already. Ultimately each person’s situation is different and everybody’s emotional needs are unique, so nobody can dictate what is best for your own emotional well-being.
But talking about the physical and surgical side though, I thought I’d share some of the insights gained from my second meeting with the plastic surgeon. The final decision lay with me, so I can’t imagine what it’s like to feel bullied (well, apart from being told I needed a mastectomy full stop). However, he gave me food for thought by describing possible scenarios which I’d never considered (cos I’m not a plastic surgeon!). I don’t know if this will help you or not, but I thought it was interesting to hear his views which are as follows:
Once you have a double mx there’s no turning back. Some women don’t get on with implants or want them out. So if that were to happen & I decided to try & use my own tissue (which I haven’t got much of so would need to put on weight) then I’d need a lot more tissue to do two breasts (I am rather busty), unless I went for very small cups. If I were only doing one breast then it would be easier to harvest the tissue.
Should the pathology report show that I needed radiotherapy then they wouldn’t be able to start inflating the affected breast whilst undergoing treatment. So I would still be lopsided or flat with a double for months. But, if I didn’t need rads & had no complications, then they could start pumping it up pretty quickly (and on a weekly basis if I preferred) and get it up to full size within 4-6 weeks, let it settle, achieve desired shape & then do reduction on the other to match. He also said that the “theory” is that you get better results with plastic surgery when it’s a series of smaller ops over a period of time, instead of trying to accomplish a major feat in one hit.
He also said that one needs to have realistic expectations of this surgery and understand that first of all they need to treat the cancer. The reconstructive surgery is a process they can tweak until we’re happy. Apparently, if you can manage your expectations you will be much happier with the final result than someone who expects a wonderful result straight off. I decided that regardless of which surgery I went for, this summer wasn’t going to be peachy and I probably wasn’t going to be prancing around in skimpy tops (the vision I had of myself rehabilitated!). I accepted that I couldn’t rush the process and decided not to burn all my bridges and to keep some options up my sleeve.
Jaki, good luck with your decision. It IS your body & your mind and I think it’s good to challenge the medical profession so that further down the line you know that you left no stone unturned. And don’t feel guilty about taking lots of their time (despite the waiting room outside) to get the answers you need to help you with this. You need to be satisfied that you took the correct route.
I had a mastectomy a year ago this month. I was diagnosed with invasive lobular cancer (left) and extensive LCIS (in both breasts). My Consultant said it would be a good idea to remove both breasts (because of high risk) but did not want to do both at the same time in case I needed chemo, since it would take a lot longer to be fit enough to have chemo. Turns out I didn’t have lymph nodes affected so didn’t need chemo after all.
It took about 4-5 months to fully get over my mastectomy.(I still don’t have complete feeling or strength back on that side). My Consultant made me wait another six months after that just so he could make sure it was what I really wanted and was the best thing for me. I never wavered in my decision. I did not want a reconstruction but felt quite lop-sided with only one breast. I am a C-cup, so not huge, but have never liked my breasts. Unfortunately I have a large keloid scar on my mastectomy site which is uncomfortable and itchy so makes it hard to wear my prosthesis.
Just before Christmas my Consultant finally said yes to another mastectomy. He had said from the outset that I would need to wait about a year. Because of the LCIS, I would need a mammogram every 6 months (I HATE having them done - so painful for me). While I’m relatively young (47) I’d rather have the other breast removed now than possibly when I am a lot older and less able to bounce back from a major op.
Anyway, there were a lot of factors involved and my Consultant did put me through the wringer to make sure I made the right decision. I go into hospital on April 10th.
Having just one breast removed takes everything out of you as far as recovery goes, having two done at the same time would be much harder. It’s amazing how much every movement is affected by your chest muscles!
You could always get a second opinion if you wanted to. I can understand why your consultant is making you wait (even though it was hard for me to hear myself). I’m glad I did wait though.
It’s a big decision. Your consultant/surgeon has probably treated many, many women and has good reasons for saying ‘not yet’. Did you ask him why?
Just wanted to add that if you are having your lymph nodes removed, you are at risk from lymphodema. Having lymph nodes removed as well as your breast is a huge op. You may well be quite incapacitated if you had both sides done at the same time. I know a year seems like a long time to wait, but it went quite fast for me.
Not trying to put you off, just sharing what I went through
thanks to u all for the comments…am off to hospital now…should be having single mast 2morro, but if they decide to do double it may be 2morro, or next week…will let u know
Hi Jaki,
I had a mastectomy with immediate reconstruction last July and had been requesting double mastectomy since I was diagnosed in the january. I was told they had to deal with the cancer first. I was also told that the reaction of most women was to ask for them both to come off initially. I have never waivered from my decision and found out today that my surgeon will take my “good” side off in the next 16 weeks. I am over the moon and cannot wait for this to happen as I feel only then can I start to get on with my life. He did a truly amazing job on my cancer ridden boob and I have no doubts that the other side will be just as good. I was 34 at diagnosive and had a 3cm ductal- no lymphs involved and had chemo fist followed by mastectomy, reconstruction and rads- hope this helps
Katyx
well, went to see my surgeon yesterday…surgery has been cancelled for today, but they are going to give me bilateral mast in the next 3 weeks…i am absolutely over the moon, and am feeling the happiest i have felt since the dx. i now feel that i have got my choices back…if i want recon later, it will be my choice now, rather than something to ‘balance me up’. similarly, i can choose to wear prosthesis or not, i wont have to wear one because i will be lopsided without. i feel like i am back in control, as much as u can be with this desease. thanks for all your input on this one, and wish u all well on your journies. i daresay u will be hearing from me again, lol
I am waiting for test results and have looked at before and after reconstruction pics and I must say that my breasts are my biggest assets and I cannot imagine having them lopsided or different. I am a 34E cup so I will look really funny and the chances of having a reconstruction on one side matching the other is not likely. I will if it gets to that ask for double mastectomy with the option of reconstruction later. Having the reconstruction done all at once with the mastectomy looks like too big a op to me but then only all you brave ladies on here that have already been through it would know.
Hi Katy
you said (had chemo fist followed by mastectomy, reconstruction and rads) what type of recon did you have?
didnt the rads damage the implant?
I was told I could have an immediate recon then later they said they cannot do it because the rads if needed wil kill the flap. really interested to know what you had.
thanks
chris
hi all
i had chemo before my op due to size of tumours in breast. at the time i was positive i wanted them both off as i felt i would never look the same.after lots of discussions(sometimes quite heated )with ps,bcn and family i chose just to have the one with cancer done. i had immediate reconstruction done (latissimus dorsi) were the ps used the muscle and tissue from my back. i didnt need an implant but i do have a larger scar due to more tissue being needed but that will fade in time and my new boob is all me.i am now just about to start 5 weeks of radiotherapy so dont have the worry that an implant would have been damaged. i am really pleased with the results and the only difference between my breasts are that i have no nipple on operated side. ps has arranged for me to go back once everything has settled and he will either make me a new nipple using the one i have or i can have tattoo done to match the other one.
take care all and take yr time making up yr mind about what surgery u want and i wish u the best results.
mariaxx
Hi everyone
These posts have been quite an education. I was diagnosed with DCIS in my left boob in 2004, had a wide ecision biopsy and did not need chemo or radiotherapy, given the all clear. Then in Feb this year I was diagnosed with Grade 3 Invasive ductal in my right boob, 3cm tumour, still do not know if any nodes involved. I opted for chemo first mainly to give me thinking time. I am positive I want a double mastectomy, I feel that both my breasts have now let me down and I don’t want to spend the rest of of life (I am 61) worrying about a recurrence. I have been here twice I don’t want to be here again. I still have three more chemos to go (TAC) which are quite heavy going so have until early June to really make up my mind. I was all for recon at the same time on both sides, but it sounds as if it is quite an operation! Every woman I have spoken to says the same thing, get rid of them both! Only my husband keeps saying wait and see what happens and what is said at the time, but I think he has an ulterior motive, he is a ‘boob man’. Now I have been given food for thought and may have to rethink my approach. Thanks again everyone, this has really been an eye opener.
i am still waiting 4 a date for my surgery, which seems 2 be taking 4 ever!! they have put me on letrozole in the meantime which stops me producing oestogen, so, hopefully, the tumours will shrink! my OH says he doesnt care whether i have 0 boobs, 1 boob, 2 boobs or 3…altho he would prefer 3!!! (hes a boob man 2, lol)
i am so glad 2 be having the double mast…i have already got names for my 2 prostheses…ruby and pearl, lol
most ppl i have spoken 2, initially think its a strange decision to have both breasts removed, but when i explain the reasons, they think its quite sensible, which is a novelty 4 me, bcos i have NEVER been sensible, lol
wishing u well on yr journey…i will be thinking of u
This thread has been a revelation to me. I had my right breast removed two weeks ago, and after initially feeling ok about being asymmetircal, it has started to trouble me more and more. It had never even entered my head to have the other one removed, but I now feel quite resentful of my remaining breast (I am large, a 34G) and much prefer the side that is flat.
I have been offered a recon after 12 months, which would include a reduction on the left had side so I guess I will wait for that, but now I am sort of wishing someone had at least mentioned the possibility of remiving both breasts.
i have now got my date for surgery, which is 17th april, and they have agreed to do the bilateral. thanks for everyones input on this subject, i will let u know how i get on
