HI
Has anybody had a mastectomy on one breast and after surgery wished they had asked for double mastectomy?
I had a mastectomy in April 08 had 4 treatments chemo and now started 20 treatments of radiotherapy and then another 4 treatments chemo. I will then be seeing PS for either tram or diep reconstruction.
I am now wishing i had spoken to my surgeon on getting a double mastectomy as i am always worrying i may get it on the other breast and it is a constant worry. However i dont know if they could or would be willing to do it at same time as the reconstruction. There was no family history of bc on my side so i dont know if they would be willing to do it but my biggest fear if it does return to other breast and having to go through all the treatment again. I am 43 and have 5 children aged 23,19,15 and 6 year old twins.
Has anybody had any similar experiences or worries?
Thanks for taking the time to read this and hope everybody well.
Lorraine
I haven’t had any experience of this but I would say that it’s worth asking about it. Perhaps if you speak to your breast care nurse she may be able to give you an indication of how likely they will be to consider it.
Hiya
I had a bi-lat mastectomy with the right side being preventative. I certainly didn’t have to fight my corner and they were happy to do it. I had no family history either but I think my age (35), triple neg and tumour size (5cm) all meant I didn’t have to beg…and not something you want to beg for really is it? I had tissue expanders but now waiting for DIEP.
I actually spoke to someone the other day who is having a second mast on her ‘good side’ at the same time as her recon - so yes you should definitely ask.
I hope you get what you want ultimately. I did it as a risk reducing and a cosmetic result reason also - but it never takes away the risk completely - I still worry about recurrance or spread elsewhere. But prob a damn sight less than I would have!!!
Thankyou for your comments they are much appreciated. I will speak to my BCN but she is on holiday at the moment.
I am still a bit unsure on all the terminology on everything so please dont think i am ignorant by asking this, but what do you mean by triple neg as my lymph nodes and my bone scan were all clear but i had 2 lumps on right side and 1 of them was 5cm the other 2cm i think and it was the surgeon who said i would need a mastectomy but it was never suggested to me to have a bi-lateral and it is only now that i keep wishing i did although i am scared to death even thinking about the op but i will be getting reconstruction and will be in pain anyway.
I had my 1st radiotherapy today just another 19 to go.
triple negative means your tumour doesn’t have any oestrogen receptors or progesterone receptors and isn’t HER2 plus, i.e. it doesn’t respond to any hormone treatments or to herceptin
Have they told you whether you can have hormone therapies or not?
No ive still not been told yet but i see my OC tomorrow so hopefully i will get the results back then. Thankyou for info atleast i know what it means now.
As well as the support you are receiving from this thread you may find BCC’s resource pack helpful, it has been designed for those newly diagnosed and includes information about treatments and terminology. If you would like a copy just follow the link below: breastcancercare.org.uk//content.php?page_id=7514
If you feel it may help to talk to someone in confidence about your fears and concerns then please give the helpline a call, the staff here are all either breast care nurses or people who have personal experience of breast care issues. The number to call is 0808 800 6000 the lines open Monday to Friday 9am - 5pm and
Saturdays 9am - 2pm.
I had my mastectomy in December - and about a week after that I wished I had the other side done preventatively. I had to get radiation so they wouldnt do immediate reconstruction. I will be getting reconstruction early next year and I am going to have the other breast off then and have bilateral reconstruction. I too have no family history but want to reduce the chance of every getting this back. My plastic surgeon is more than happy to do this for me and I too did not have to push at all. It is your body and your decision - one which any centre should support if you are clear what you want.
Hi Lorraine,
I had my initial mastectomy last July and a preventetive one on the good side this May. I had said from the start that I wanted both off and my surgeon refused to do it until 6 months after the cancer one had gone- this was becaase he said, in his opinion, a lot of ladies say that they want both off initially because of the shock of all the treatment and diagnosis etc- well, I never changed my mind and I have never regretted it either. (I was 34 @ dx, grade 3 triple neg)
Hope this helps
I had a bilateral in the same op - i did have a bit of a struggle but was determined that i wanted rid of the good side too (i have family history though so that helped - am the 5th member of my family to get bc) also I didnt want to end up lop sided!!! like my mum who had bc 25years ago! (who is fit and well) and good job i did as i had precancerous cells in the good side!
I appreciate this is different from your situation - but i would not hesitate in getting both removed especially if it makes you feel better in your mind… the chances are it would be fine but you never know.
hi Lorraine
I had a modified radical mastectomy in early July. Only one breast affected. I am in the USA; so treatment varies. However, my surgeon would not remove the healthy breast. She wanted me to me to first get rid of the tumor, then heal. She also said that the stats do not back up that cancer jumps from one breast to another. More than anything else, it would have been done to make me feel better.
I am now three weeks post surgery, am getting used to my new body and am healing very well. I went into surgery with the idea that in February 2009 I would have reconstruction. Now, my mind is changing. I went for a fitting for a mastecomy bra and prothesis and was very encouraged by both. Instead of feeling awkward, the insert was very realistic and at this stage I do not want to go into surgery again. The MS was not bad at all; it is the removal of the lymph nodes that is more uncomfortable.
So, my advice is not to judge too quickly and give yourself time to adjust first and think about what you really need.
Hi Lorraine
I echo what Emily Jane writes above. I had mastectomy and recon in March this year. My breast surgeon assurred me that my risk of getting it in the other breast is only marginally raised (1 in 8 as opposed to the current stats of 1 in 9 for the general population and he said that was because once you have a cancer diagnosis you are at slightly higher risk of any cancers going forward). My recon looks great when I’m wearing clothes you would never know I had a mast. However I don’t have any sensation there at all and I’m assuming that if i had a bilateral it would be the same. At least with one unaffected side I get reassurance of feeling normal on that side and it’s still nice to have sensation during those intimate moments with OH ( too much info - sorry!!!). I guess you have to do what feels right for you but I agree not to jump in too quickly as once it’s done it’s done. Also there may be people out there who have had recon and their senasation might be unaffected and I do know that you can only have a DIEP done once so you need to decide for one side or both with the PS before the op.
Good luck with whatever you decide xxxx
Hi Lorraine,
I was diagnoised with BC in August 2004. I never felt a lump but had discharge, after 18 months of attending appointments at age 34 they decided to do a mamogram and the rest is history. Had a mastectomy a week later and one node removed (no reconstruction surgery). Three weeks later went for my results to find the node was affected so went back in hospital for full node clearance. I was diagnoised HER+ grade 3. Over the last few months I have had really bad problems with both my periods and discharge out of the other breast. Saw a lovely Professor last week at local womens hospital and the has suggested an hysterectomy with my ovaries also being removed. Due to the discharge starting in my other breast I have decided to opt for a mastectomy with double reconstruction which is going to be done at the same time as my hysterectomy by two different surgeons.
My advice is there is only you who can make such a decision but if it will ease the stress then go for it.
Hi nikclara
just read your tread hope everything goes well for you cant believe they left you for 18 months before doing a mammogram these should be done at first sign of a problem, thats why i think they should be offered to younger women aswell. I had a mastectomy and a recon down immediatley but when they went to test my nodes they had gone missing, they had to go and find them and the joke of it i went private, but thank God none was effected what type of recon are you having.
Hi Everyone,
Thankyou everybody for all your comments they are much appreciated and i wish you all luck.
I got my results on Tuesday and i am Her2+ so i will be getting Herceptin for a year when my chemo finishes.
I spoke to my OC and my BCN and they both said to think hard about it as the risks would be minimal esp with all the treatment i am getting now but if i was adamant i wanted it done then they would do it but i have to speak to my surgeon on my next visit which isnt until October so i have plenty of time to think about it. At the moment i keep thinking if its not there then i cant worry about the cancer coming back as it is a constant worry.
I requested a bilateral mastectomy and my surgeon, a lady, was only too happy to oblige me. I gave my reasons as not wanting the cancer cropping up in the future in my unaffected breast but mainly that I did not want to be lopsided, she really sympathised and said a lot of her ladies requested a bilateral for the same reason. I wanted to have the choice of wearing falsies or going flat chested. Besides which it can’t be that easy matching a prosthesis to the remaining breast. Ask your surgeon, surely it is your choice, I was worried whether I would have a fight on my hands before I actually spoke to her but she was most supportive.
Good Luck
Nonny
HI
I opted for a second mastectomy on my “good” side 18 months after the first. The bonus was that the histology proved to be negative and although I knew that statistically my chances of recurrence were low I had just survived an 8+ cm tumour that went undetected for about three years. As a Big Girl it was all too hot and heavy with the one, especially when i had to wear a prosthesis (weight 1 kilo)… Although I could have reconstruction both sides in future if desired I’m not bothering with it as a I live in a place where A it’s very hot in summer and B the doctors are more focused on treatment than image. Oh also C why have a load of ops and risk back trouble etc.? Three weeks on I’m healing up nicely and enjoying the freedom and comfort of my new flat chest, to be honest I feel absolutely liberated. As I explained to my surgeon, Supermodels don’t have boobs!
I was diagnosed late in May with inflammatory and its a primary. I had another primary in the other side 18months ago and as it was a different type treatment was very different. I am on chemo at present and when they (onc and surgeon)have decied they have got the best reduction they can, I will have a masectomy. I am adamant that I want a bi-lateral I am very big busted and even looking on web sites cant find many double HH. I would prefer to go for balance and with clothes on and suitable small prosthesis would feel normal. I can’t think they will even talk about reconstruction which would feel a bit self indulgent as I am requesting both sides. But I will wait and see, for now its on with Chemo and Herceptin which starts on next round with chemo.
I have lobular which is more likely to come on the other side but when I expressed the wish they had just taken both sides at once my bcn said well you can still get cancer even if the breast is removed.
Still wish I had got rid of both - such a pain with prostheses - it would be easier to be the same both sides. And I know I would feel safer.
Sarcath
I’ve just posted on a thread in local recurrence/new primary called My Visit to the London Marsden re this - I went to see them because I had a area of thickening and tenderness on the “good” side - I was lobular.
x