A bit about my story: I am in a very long line of women within my family who have had breast cancer. Unfortunately my mother passed away when I was 8 and I am now 21.
Being this age has really put into perspective my growing concern of getting the disease. I’ve been told by both geneticists, GPs and surgeons that my chances are currently 1 in 2, so I have two options open to me. 1) Carry on my annual routine MRI scans or 2) Have preventative surgery - a bi lateral mastectomy and reconstruction.
I am now looking into having the mastectomy option and getting them reconstructed. This is a massive decision for me to make but I feel it’s getting easier for me to accept that without this surgery then I am more than likely going to get it.
My mother was 29 when she was diagnosed and it scares me that that’s only 8 years away!
I’d really like to hear whether anyone else has been through this or what other people think. I just need as much support at the moment as physically possible as I feel I don’t want to be a drain on my friends by constantly talking about it because I know that it bothers them and get upset as much as I do.
I am not as young as you (but I am a youngish 40!) I have had preventative surgery this year. I will happily share my thoughts and experiences with you.
This is a very unique situation to be in and if you had been diagnosed with BC you would be chomping at the bit to have the surgery done ASAP. But to put yourself through it when healthy, and so young, is a different matter.
Have you met up with, or spoken to any ladies who have been through this? I found this very helpful while trying to decide whether to go ahead or not. I also felt I could not keep talking to my friends and I also felt they couldn’t really relate to what I was going through.
In a nutshell, I am very pleased I have done it now. I am pleased with the cosmetic result (while clothed anyway) and I would do it again if I had to.
I had immediate LD recon with implants. I had my left done in January this year and the other side in June. They have both settled nicely and feel quite natural & I am due to have my nipples recon in February so I am looking forward to the finishing touch. With clothes on, and even in a bra, they really do look natural and the scars on my back are mainly hidden by a bra.
While I was deciding whether to go through with this I was single, and while I was waiting for a date to go into hospital I met a man and we are still together now, a year on. It didn’t scare him off.
I can’t imagine how hard it must be for you facing this so young. If you get the chance, have a look at some pictures of reconstructions on the web, but when I looked the first time I could only find pictures of older women.
Anna,
I’m not in quite the same boat but I can really sympathise with your situation. I’m 24 and was diagnosed in Feb this year, no family history. I was faced with having one mx as part of my treatent and after much agonising decided to have both sides done as a preventitive measure. I had the op 10 days ago, with immediate recon, expander implants, no LD flaps - from what I gather it does give a better result but I didnt like the idea of messing with another part of my body.
Even 10days after surgery and with no expansion yet the result is pretty convincing with clothes on. I’d say the main difference is less how they look but more how they feel - they’ll never feel exactly like normal breasts - they are alot harder - and you’ll lose most of the sensation you have, not just in your nipples (if you keep them), but across the whole breast. For me this was the hardest thing to come to terms with.
I had to have one nipple removed - on the affected side, but my surgeon was happy to keep the nipple on the other side. Depending on your surgeon you may be offered the chance to keep your nipples, i think the risk is v low for woman who are having this surgery who dont already have BC.
Im single as well and the thought of being with a guy scares me alot, but a girl who had this op done years ago when she was in her early 20s said some guys dont even notice!
I know you must be in a scary place right now, best of luck with your decision, whatever it is itl be the right one. Any questions you have feel free to ask me anything,
Im so sorry you lost your mum so young.
Cesca xx
ps, also when i was deciding what to do i remembered this story being printed in cosmo or whatever a few years ago and found it on the net, it is a bit rose tinted but helped me alot. Its about this 24yr old who became the youngest woman to have a preventative bilat mx, maybe you should get in touch with her? - If you do it i guess you’ll be the youngest. Not an honour you want im sure, but maybe she could help. breastcancergenetics.net/ - go to the ‘becky and wendy’ page, you can read her story
Hi Anna.
Just to let you know, I was diagnosed last year aged 34 and have since found out my cancer is genetic. I had mx on the cancer side with reconstruction and preventitive reconstruction on my good side this may. I kept both my nipples. Just to reassure you, cosmetically, my breasts look perfect and you would never in a million years guess that I have had double mx. I have scars around 8 cm long going vertically down from under my arms that have practically faded to nothing and I can wear bikinis and pretty bras with no outward signs.Call me shallow, but I was REALLY worried about how I would look afterwards. yes, there is a loss of sensation, but this, for me, was a small price to pay. My surgeon has done a fantastic job and I am eternally grateful for him in restoring “normality” to my physical appearance- hope this helps
Best Wishes
katyx
Cesca - Thanks for the link to the other website, I almost cried at work knowing there are people out there who have been through what I have. I’m planning to get the operation in the next couple of years.
I understand that you didn’t choose to have the muscle option. I think I will because I don’t think I’d like something foreign like saline in my boobs. Do you think there is a massive difference?
Katy - Thank you. And you are not shallow at all! I think it’s only fair to be slightly shallow especially with what you have done. What type of reconstruction did you choose to have?
This decision is massive for me and at the moment, it seems to take up most of my thoughts when I’m not thinking about work or losing weight! (I’m currently on Weight Watchers!)
Hi Anna,
I had LD reconstruction with implants- have no scars on my back- only the vertical ones under my arms (which are hardly noticeable) . I didnt choose this reconstruction, my surgeon examined me and told me that this is what he was going to do! I accepted that he had more knowledge and knew what he was talking about more than me and went with it- as I said, to say i am over the moon with the result is an understatement- to be frank- if he now told me that he was putting caustic soda filled implants in my body, I would totally trust him cos he obviously knows what he is doing by the cosmetic results that I have-lol.
I am due to go back in next tuesday to have one of my implants replaced as the radiotherapy that I had on it has made it go rock hard (it still looks great, just feels like a bullet and I could crack walnuts on it-ha!) He will also be taking out the ports that are attached to the implants .
I am also due to get my ovaries removed next year due to the genetic risk of ovarian cancer.
Hope this helps
Best Wishes
Katyx
sorry, i didnt mean to make you cry!! re the implants, even if you have the ld flap recon they usually use implants aswell - like katy had. unless you have very small boobs in which case you could mabe get away with it. however, i did have very small boobs and - backing up katy’s worries about cosmetics which is NOT shallow at all! - im hoping that an added advantage might be that i can have slightly bigger boobs (i got the inspiration from that story i sent you!!). hey, theres got to be somthing good that comes out of all this crap!
if your in no rush to do the op then you have loads of time to think about it. your hospital should have some photos they can show you as well - before and after shots. i also agree with katy about seeing what your surgeon thinks and would reccomend - tho keep in mind that every doctor is different and has a sometimes arbitary opinion on what is the best option. just make sure you do whats best for you.
katy, im so sorry you are having to have your ovaries out next year. but fingers crossed then you’ll be done with all this rubbish. best of luck.
Katy - thanks for the advice, as you say it’s very much seeing what the surgeon says! I know surgeon’s know best, just all depends on the person.
Well, you’ve got handy nutcrackers for the time of the year! Ha ha. I’m glad that you can laugh about it as well. I find that when I tell people, they look more concerned than I do and then I’m the one comforting them! My best mates are awesome and are just worried about me but I have to tell them that I’m doing this so that I’m with them until god knows when. After my op, I plan to do some massive charity do for breast cancer care and for breakthrough breast cancer because without you guys and the sites, I love that I can contact and get info from great resources.
Cesca - I know you didn’t mean to make me cry! It was such a nice and heart warming story that really hits home for me. It was nice to know other people’s stories.
I have proper massive boobs!! I’m a 36G at the moment so I want them to be smaller actually. I’d love to be a D/DD so I’ll probably need some form of implant won’t I? I just don’t want the expander one, I just want to go in, get them out, make me new ones and then leave hospital!
Anna,
Mine were both expander implanders (hence the ports which are going to be removed next week), however, I was never expanded- they were already filled up when they were put in, so I did- as you say "go in, get them out and leave!
I think (and this is only my speculation, am no expert) they only need to be expanded if the skin needs to be stretched (Cesca lost a nipple which would have meant less skin on the breast to play with). It sounds logical to me anyway.
best wishes
Katyxxx
yeh im afraid anna it sounds to me like your definately gonna need implants!! the muscle on your back would barely give you an a cup. and yeh with expanders they are generally used to stretch the skin but in alot of cases they overstretch the ‘pocket’ so that then they can replace them with fixed volume implants of a slightly smaller size so that they hang a bit more naturally. but in the same breath expander implants can also be perminant - they can just take the ports out like katy’s having done. having such small boobs myself i have no idea on the protocall on big boobs im afraid! thats a question best for your surgeon im afraid.
best of luck with your decision, if you have any more questions feel free to ask anything,
xxx
Thanks for starting this thread, I just wanted to say that I’m in a similarish situation and it’s interesting to read all that’s been discussed here.
I’m 32, I got breast cancer this year. I haven’t had the results of the genetic tests yet but my Mum’s had breast cancer 3 times and she was 39 the first time so they think it’s very likely that it’s genetic. I’ve decided to go for preventative surgery because I don’t want to go through this again and then again like my Mum has.
My preference would be for plain implants but because I have to have radiotherapy this isn’t possible (cooks the implant or something). I was very flattered to hear that my plastic surgeon couldn’t make boobs out of my tummy or bum because they aren’t big enough (and I’m not skinny) so that leaves the LD flap option, so that’s what I’m going for. I’m also 36G and am very much looking forward to being smaller, might even lose a few pounds! I was given the impression that the LD flap option only go up to a B cup but that’s not confirmed for me yet.
It’s a big decision isn’t it? The clincher for me was when the plastic surgeon said it would reduce the chances of getting breast cancer again by 95%. I liked the odds.
Thanks again and best of luck with everything!
C x
I’ve just come across your post!I’m so sorry that you’re having to go through all this rubbish and thought i’d get in touch.
I’m 23 and was diagnosed with BC about 4 months ago and I’m currently having chemo. I’m trying to decide whether to have radiotherapy or mastec/reconstruction in the new year (apparently i cant have the implanter recon if i I have radiotherapy).Unlike you, I have no Family history but am waiting for the results of my genetic testing to find out if I carry a mutation.They seem to think there is a low chance they’ll find a gene but this doesnt rule oyt the fact there may be a gene they havent discovered yet. I too am a “Busty Bertha” with 30FF boobs which I hated until I thought I might lose them.It would also be really noticeable if they suddenly disappeared!!My doctors and surgeons are giving conflicting advice as I think Cesca also found ; one says opt for radio and mastectomy is too drastic the other says surgery to be really sure its gone, so you really do have to be headstrong and make sure you make the right decision for you. I’ve had so many well meaning friends say “if I were in your situation I’d…” but I know that having had BC and the very real prospect of getting it/getting again makes it much less black and white. I’m veering towards having radiotherapy and keeping my boobs at the moment having been convinced at diagnosis that I would opt for mastectomy long term. I know that if I’d been asked 6 months ago hypothetically before my diagnosis which option I’d go for I dont think I would have even considered it would be radio.I have got a little excited at the possibility of having slightly smaller boobs and wearing tops braless though. I too am single and the whole BC/boob thing really knocks your confidence and scares me too, I cant offer any advice on that …if you work that one out let me know!I guess if theyre actually worth the effort they’ll understand??!
Anyhoo…sorry that wasnt actually offering much advice bout recon and stuff but I can kind’ve relate to what you’re going through.If you wanna know anything more or just need to vent frustration let me know, its quite an isolating experience to have to go through all this
Good luck and tk care
Jimmi - Not a problem for starting the thread. I’m really enjoying hearing people’s responses!
Well, I’m a bit of a fattie, unfortunately, trying to lose the weight though so I’ not sure what will happen. It’s a massive decision to be making but I think I’ve pretty much made my mind up now that I will have the operation because the waiting drives me mad. Been talking about it with my mates and family and they have all been really supportive.
Hjane - Thanks for giving me your story! It is nice to hear that there are women near my age that are going through really tough situations. I’m really sorry to hear about your dianogsis. Hows the chemo going?
I think I will need to vent frustration soon because my friends are the most supportive bunch but sometimes they just don’t understand what it is I’m going through as I put on a good face when I’m around them. I have to feel to look like I’m alright about it when I’m not half the time as I feel that it’s a lot to put on them. Does that make sense??
Hi Anna - I cant offer any further advise or comments then you have previously recevd. But I would like to wish you well in your decisions, I have read your thread with interest. I have felt sorry for myself on a number of occasions since dx back in April this year, mainly because of my age (36) but I now reolise that there are people alot younger then myself having to deal with this illness and that saddens me.
Lily0 - may I just ask you how come you have no scar on your back when you had LD recon? I myself am due to have this next year, and am interested to learn about it. Anna sorry to hijak your thread to ask this question.
Hi All,
Ness- I have no idea why there is no scar on my back- all I can say is my surgeon is truly god like in what he has done. He cuts under the arm vertically about 8-10cms then does whatever he does to pull the muscle round from the back to the front- hence only one cut and no scars on my back.
I have a really slim frame and if you know what you are looking for then you can spot the “dips” on my back where the muscle was.
He truly has done an amazing job- I just wish we could post photos on here cos people may not be so scared if they saw the end results- as I previously said, I kept both my nippples which obviously helped cosmetically and the fact that I had immediate reconstruction both times AND they were already inflated made me feel like I never really lost my breasts- in fact, when he did the first one last July, i woke up from the op and freaked cos it didnt look any different and I assumed he had opened me up, found loads more cancer and just sewn me back up again- thats how good it was!
I am due to go in on tuesday to get that one replaced though cos the radiotherapy has made it go rock hard- he did warn me at the outset that the radio would do funny things to it, but promised me that whatever it did, he would sort it and thats what he is now doing.
Best wishes
Katy
hi ladies,
im 32yrs old. i found out 18 months ago im brca2 positive. to say i was scared is an understatement. 18 months on i have had ovaries removed so now menopausal, have lost over 6 stone in weight and booked in for mastectomy in feb using fat from my stomach. anna regarding losing weight you will get there its not easy but when you know you may need these op’s it certainly gives you the drive to lose it. i dont regret my decisions to have op and now feel healthier that i have in a while prob due to weight loss… good luck to all you ladies we sure are a tough lot to deal with cancer or the risk of cancer in the way we do… lots of love lainey xx
