so some of you may have already read my previous thread but im still really really confused as to whether to have a bi lat mastectomy or not.
had grade 3 cancer in one side and my surgeon has asked if i wanna do both at the same time as a preventative measure (no fam history but am very young, 24). help help help.
has anyone been a similar position? - ie not influenecd by having the brca gene(s) or having lobular cancer or having a family history or having bc in the other breast.
what did you do?
has anyone had a bi-lat mast and regretted it? - or anyone who didnt do it but now wishes they did?
If you would like to give the helpline a ring the staff here will be able to talk to you about BCC’s Peer Support service, there may be someone registered with Peer Support who has been in a similar position as yourself who you can talk one to one to. The helpline number is 0808 800 6000 (free phone) open Mon to Fri 9am - 5pm and Sat 9am - 2pm.
Hi Cesca,
Probably be no help to you at all abut just thought i would share my story with you. I was dx in may with lobular cancer,was told because of the size would have to have a mastectomy, as i am 48 and do have a history in the family ,i decided to have a double.my consultant agreed. i had 13 nodes removed 3 which had cancer.you are very young to have to make this deciscion but it must be right for you and nobody else . I am not having recon but no doubt you will have that option,I just wanted to make sure there was a lesser chance of bc going in my other breast.we are all individuaand i hope you can make a choice for you. lots of love and big hugs xxxl
Hi ,
I was diagnosed at 34, had mastectomy with reconstruction last July and have had preventetive mastectomy with reconstruction this April on my healthy side. I DO have a dodgy gene, but regardless of this and prior to the knowledge of my genetics, I wanted both off due to my age.
Asthetically, having both of them off look a lot better than when I only had one side done, as one side was all perky and the other hung lower- although they DID look exactly the same in a bra or a bikini (Yes- you can still get away with one with no visible signs)
I have two scars going from under my armpit straight down about 5 cm.
I am REALLY PLEASED with the cosmetic outcome of these ops and for me, it alleviates the worries and I have the knowledge that I have done all that is phsically possible for me to do to stop the cancer returning.
I wish you well in your decision and oif you have any questions- please ask
Best Wishes
Katyx
ps- Had the expander implants and they used the muscle from my back
thankyou ladies for sharing your stories, v positive to hear you are so happy with your result katy, i feel exactly the same about wanting to know i did everything possably, its just taking the leap!! i well try the peer support services…
thankyou again, xxx
Just to add to what’s already been said, I had a bc diagnosis on one side in July 2007 at the age of 35. I was offered lumpectomy or mastectomy on that one side. Because I was so afraid of a recurrence, I asked for double mx and they offered me a tissue expander/silicone implant reconstruction. I did have a lousy family history but have tested negative for BRCA 1 and 2 genes. The testing was done after the surgery. Anyway, I have never once regretted my decision in the slightest. Quite to the contrary, I have been very glad that I took this step. I also think it’s worth bearing in mind that a lumpectomy or one-sided reconstruction is never going to match the other side as well as if you have the bilateral mx and reconstruction.
It might be worth asking them to tell you what the % chance is of it being genetic - I was told that mine was 80% likely to be genetic but I only knew that after the surgery had already been done. I was seen at the genetic family history clinic - there should be one for most areas that you can be referred to.
Good luck with reaching the right decision for you.
x
Also, I am now just over a year since my dx and my fears about secondary spread etc are just beginning to kick in big time! I would say that now more than ever I needed to know that I’d done everything possible to protect myself from this disease in the future.
I had a mastectomy on my left side in June and decided pretty soon afterwards that I wanted to have the other side done also, they are more than happy to do this for me. I agree with Nicola having never thought I would ever choose to have a healthy breast removed, I want to do as much as I can to make sure that I keep myself safe for the future especially for my two young children. Hopefully once it’s done I will have a lot less of the worry of recurrence hanging over me. Also as already mentioned although my recon is a very good match to my natural breast they are still different, had I been given the option of a bilateral initially I would have much preferred them to have been done at the same time.
It’s a big decision, unfortunately we tend to have to make them quickly at this stage so it’s hard to be completely sure of the decisions that you make.
I had a mx aged 35 at the start of this year - i have already asked if I can remove my other healthy breast. I’m still keen, as I have noticed that i am getting anxious at the thought of touching my breast and finding something. I do not know if I have a genetic issue - not sure I want to find out either, as I already know that i have/had bc.
Body image is tough at this age and it is even tougher at your age, due to pregnanacy etc my breasts were not in peak condition anyway. But the real issue is not image but survival, and you must what is best for you.
Still keen to meet up and we can chat about this and everything else. Either way, goodluck sweetie,
K
thankyou all so much for posting your thoughts, sorry ive taking a few days to reply, have been in spain for a much needed long wkened!
you are all confirming what i am increasingly thinking - to have them both done and be done with it. part of me is scared ill wake up and regret it/hate the recon but i think i bigger part of me is scared of not doing the other one and waking up and wishing i had - and then having to go through the op all over again and drag the whole affair out longer than it had to be.
*nicola71 - the fear of secondaries is pretty constant for me aswell, i cant imagine how its ever going to subside! thankyou so much for sharing your story, definately helpd to read you dont regret it at all. how have you found the expander recon? i keep reading horror stories of it going wrong and am getting increasingly scared! also, have you had any return of sensation or is the entire area sitll very numb?
*anndi - thats interesting what you say about them matching, this has definatly crossed my mind more than once, apart from the cancer side of things do you think you will be more happy with the way you look once they are both done or do you not think it will make much of a difference?
*guardianangel - thanks so much for your comments, i worry thats exactly what i will be like - waiting for it come back in the other breast. and you are right that body image is not the primary issue, but i cant help worrying a bit! this whole thing is s**t enough without having to worry noone will ever find me attractive again!!! real shame about this weekend but yes i would definatly stil be keen to meet up. hope your herceptin goes well.
Hi Cesca,
I was diagnosed with a large lobular bc in left breast in april 06, my initial reaction when told I needed a mastectomy was ‘get rid of them both’. My surgeon understood my reaction but would not do it. She said to me that with 10/12 nodes affected I was at far greater risk of secondaries than a further primary in the other breast.
I had a delayed diep reconstruction a year later and although a very good job it’s not a complete match and doesn’t behave like my ‘real’ side. I do wonder whether, from a cosmetic point of view and one less thing to worry about, I would have been better with a further mastectomy and recon on the ‘good’ side as well. However I’m happy as I am and at 49 I’m a lot older than you (although I still feel like I’m in my 20’s!), so perhaps it’s different.
It’s a difficult decision, but the bottom line is you must do what’s right for you.
Good luck.
Claire x
thanks for your thoughts claire, i saw my surgeon again this afternoon and i think im gonna go for it and do both… though im s**t scared!
thanks to everyone who has replied to my posts, has been so helpfull xxxx
Cesca if it’s any consolation I’ve learnt something during chemo which is that there’s only so much pain or feelings that the body can process at any one time so if that’s your fear don’t worry I don’t think recovering from doing both will hurt much more based on my experiences this year.
Of course you’re scared… you’re human and not in denial… best of luck and I know I’m glad I did what I did.
thankyou for your support angie, thats a good way of looking at it. i think more than anything i just want to know that i did all that i could do to avoid being in this situation again. what stage are you at with your treatment? - youve prob already mentioned it in a previous post but have been too preoccupied to remember!! xxx
I’ve just finished chemo and start rads pretty soon so should be finished apart from possible hormone therapies. I should say finished treatment rather than “be finished” if you know what I mean
To be honest that’s why I made the same decision, I imagined myself being lucky enough to get past the first load of treatment and recon if I wanted it but knew that I would have a nagging feeling later if I didn’t go for now because that’s how I am.
When I woke up from surgery I felt much less anxious and very relieved that it was all done and… I still had two breast-like shapes there. The waiting and build-up to the surgery was the worst bit.
I don’t have much numbness at all but apparently this is unusual - or so my sister was told (she is having purely preventative surgery at the end of the year). The numb bits I do have don’t really bother me.
I’ve been stuck with the expanders for over a year now because chemo and rads have delayed everything. I’m quite used to them now and don’t grieve the loss of my old “killer” boobs. I remember my surgeon’s words that I am a “work in progress” so I’m hoping he’ll be able to iron out the few problems that the rads have caused. Although they’re not perfect (yet!) I’m quite comfortable wearing most tops and after the first few weeks, my kids and husband daily see me topless and think nothing of it now. As for the scars, mine were quite prominent (straight across because of the position of the tumour) and these have now faded loads and aren’t really an issue. All things considered, I think it is amazing what they can do. If they couldn’t have done the reconstruction then I would still have had a double mx done so I feel very lucky to have what I see as a permanent and convincing prosthesis!
Have you had the chance to look at photos yet? Your surgeon will probably have a book of photos that show exactly what he/she can do. Also, if you go to bcpals dot org dot uk and post 20 times there then you will be able to access the photo album there of expander pics from straight after surgery through expansion through to finished results.
Good luck with reaching the right decision for you and please feel free to ask anything else that you want to.
Hi Cesca, felt I had to write as you have now confused me!!
I’m 25 and was diagnosed with stage 3, hormone receptive breast cancer at the end of June, no family history of breast cancer. I chose to have chemo 1st and have just found out today that my surgery date is 2nd December. Do you know (and this is to anyone else as well!) what is going on with your nodes. I have been told that they cant say yet whether i’ll need radiotherapy till after surgery, because maybe if they are clear i would be less likely to think mastectomy on the other side too…or is that just crazy reasoning!
You have really got me thinking as i am counting down the days till chemo is over and cant possibly imagine going through it all again!
charlie
charlie
im really sorry if ive confused you, i had my sentinal node biopsy done right at the begining - a week after my diagnosis. i was lucky, they were negative. they decided to do chemo 1st to shrink the tumor so we could try and get away with just a lumpectomy - i had this at end of july and it showed another area of dcis hense the mastectomy now. im having the other side preventatively.
with regard to your operation your lymph node status shouldnt affect your decision to go ahead with the other side - the reasoning for that would be to try and prevent a 2nd primary or local recurrence on the other side. lymph node status is very much linked to distant spread - ie secondaries.
having just given you chemo id be surprised if they gave you more straight after even if your nodes are positive (hopefully they wont be). i imagine theyd go ahead with the rads and they see what they think
i also have no fam hist (tho get gene test results on tues, fingers crossed its negative) tho i want the other side for piece of mind since i was such a rare case anyway (so young) - like you. hope ive managed to clear up the confusion tho pls ask any questions you like. us 20somthings need to stick together!!
angie
so glad ur almost at the end of all your treatment thats such great news - i know the feeling, i just want to get this op done so i can stop worrying about it! - its exhausting!!!
nicola
thats so encouraging to read youve got some sensation back - even if you are one of the lucky ones that gives me hope!! and im so glad your so pleased with the results, and were so relieved when it was done, makes me feel a lot better.
yeh i have seen some photos and they kind of pushed to have them both done - from a very shallow aesthetic perspective i think they will prob look better both done. i have such small boobs that even if they gave me the smalled implant they had it would prob still look massive compared to my other one!! so i guess in that sense im lucky - i was never blessed with ‘killer boobs’ in the first place so i cant miss them!!
has all your treatment finished now then? - when are you due to get the fixed volume implants? and how has it been with the expanders in for so long? - are they uncomfortable? because my doc is saying now that if im happy i can just keep the expanders in and not hav to have the 2nd op.
My cancer treatment is finished for now - I’m just on hormone therapy for 5 years (Tamoxifen then an Aromatase Inhibitor later because I had my ovaries removed). The permanent implants should be done at the end of this year. The expanders aren’t uncomfortable at the moment - after an expansion I had to sleep on my back for a few weeks but the discomfort (it IS discomfort rather than pain) soon subsides and I’m not really aware of them on a day-to-day basis. I can even sleep on my front with one arm sort of above the expanders and one below. They are a C cup size but quite wide and a bit flatter than real breasts. I understood that my expanders were only temporary. I can’t see why you wouldn’t change them for the softer silicone implants as the second op is much easier than the first. Maybe your doctor is referring to the implants that can be expanded but are intended to be permanent so no 2nd op needed (I think they’re called Becker implants). When I was contemplating the first op, the idea of a second op was very off-putting yet now I can’t say that I’m too worried. I’ve been there, been really well looked after and not dreading the 2nd op at all like I was for the first.
Oh, and by killer boobs I didn’t mean drop-dead gorgeous!!! But literally boobs that were trying to kill me!!! That was just how I felt about them and it was such a relief to have the tumour taken out after knowingly carrying it around with me for 5 weeks and having spent over 20 years and as long as I had had breasts thinking that they would “get me” one day (I lost my mum to bc when I was 13). I did hate them for what they done to me and my family.
Also, I think it is important to bear in mind that a bilateral op would probably give a more symmetrical result. To consider the cosmetic side isn’t shallow at all. After what we’ve had to go through, trying to restore body image as best as we can is the least we deserve!
Hi cesca and all,
firstly sorry if i sounded blaming!! I just meant double mastectomy wasn’t even something i considered and now you have all got me thinking! Also I wrote the message in a rush so I think it wasn’t well phrased (I was going out, making the most of feeling good…been out every night this week, before chemo today). By saying I can’t imagine going through chemo again, I meant in the future if another primary is found in the remaining breast.
Another question I know the nipple will be removed when I have the mastectomy on the side which has turned to the dark side as I like to say but the preventative mastectomy will the nipple be removed from that?
The other thing I was thinking which I don’t know if you have thought of Cesca is breast feeding. I know this may seem really minor but if in the future I am able to have children, breast feeding I think (women who have had children please add your thoughts) is on of the most important, bonding, health etc etc things you can do. If I had a mastectomy on the good side I know that will be something I will never be able to do, which makes me feel a bit sad.
charliexx
Hi Charlie - I had to have nipple removed on the purely preventative side but I think it depends on your surgeon and maybe other factors - some women who have purely preventative surgery on both sides keep their nipples.
As a mum who breast-fed both her children for 4 months each, I would disagree that breast-feeding was an essential bonding experience. You bond through hugs and I didn’t personally think that breast-feeding was a necessary part of that bonding process. Otherwise, Dads would never bond with their children and, of course, they do. Breast-feeding is also supposed to help protect you from bc but… enough said on that! All other things being equal, breast is best, but all other things aren’t equal if you feel that there is a need to safeguard your family’s future by removing what is currently a healthy breast.
