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ANYONE ANYWHERE HAD BILATERAL (no recon ideally but not necessarily)

25 REPLIES 25
Lynnq
Member

Re: ANYONE ANYWHERE HAD BILATERAL (no recon ideally but not necessarily)

I had a bilateral Mx just over two weeks ago. The dressings were removed yesterday. It is still a bit sore around the scars but the surgeon and BCN were quite happy with the result. They told me that I could now shower and bathe as normal, and also use moisturiser so I started today with bio oil.

i had a RMx and a temporary expander fitted last November, but then discovered cancer in my left breast. I immediately wanted L Mx and didn't get on too well with the expander so asked for bilateral then. Since they also found that I had bone mets and a lesion under my right breast which turned out to be cancerous they were reluctant to do it.
i was put on LETROZOLE which has shown a "huge drop" in the tumour markers in my blood so after a meeting with Onc, surgeon, BCN and psychologist they decided that they would do it. I am so glad they did. When I am fully recovered and have my prostheses I will buy some new clothes and get on with it. Like Elinda I am taking more care with my appearance and treating myself to new make up etc.

Just didn't want a foreign part and was never very comfy even with the temporary one. Will have to continue treatment because of the mets, but feel better now.
elinda45
Member

Re: ANYONE ANYWHERE HAD BILATERAL (no recon ideally but not necessarily)

Hi there

I had a double mx in 2009 at the age of 46. One side was with axillary clearance and the other side was prophylactic.
I did have a very large bust so the surgeon actually told me on the day that he thought it was a good decision because the lop-sidedness would have been difficult to manage.
I have never considered a reconstruction. If I could have had an immediate one I might possibly have although I'm not sure even then. I can't face the thought of such big surgery and feel like I've been through enough. I want to focus on moving forward, getting fitter and getting on with my life which was put on hold through all the treatment.
I use prostheses every day and have special ones for going swimming. I think I've actually taken more care with my appearance since my treatment. I feel very feminine even though I don't have breasts. People actually tell me that they've never seen me looking so good! The prostheses give me a good shape and look natural. Most days I don't even think about it. I consider myself lucky to be alive and well and losing my breasts was the price to pay for my life. I am grateful and happy to be alive and think about what I want to achieve or enjoy in life rather than what I don't have.
Companies like Amoena are starting to do much prettier mx bras and a bigger range too. Also companies like Nicola Jane are good. If you get the Vita magazine from BCC they have a list of outlets. The only thing I avoid is any tops that are too low cut but even when I had a big bust I did the same.
Elinda xx

Morwenna
Member

Re: ANYONE ANYWHERE HAD BILATERAL (no recon ideally but not necessarily)

I'm interested to read this thread .... I had a left Mastectomy in December, and at the time I was adamant that I didn't want expander and implants. My body (and my mind) does just not get on with having some forreign body inside. It tried to reject my drains, and it's looking sideway at my portacath as we speak, besides which I think they look horrid, and I'd be worried about failure ..... no, so no regrets.

Now I have seen my radiation oncologist and she said that radiation thickens the skin and can cause problems if I was to be thinking about implants ... told her I wasn't, and I know all about Diep and Tram reconstruction, having worked on a plastic surgery unit.

So I am not quite there yet, but I do find I hate being lop-sided. So far I've only got a softie, which floats around hopelessly, and soon I will see about a propsthesis, but I am considering reconstruction ... I would think that I will at least have to have reduction on my right breast, and from the point of view of not worrying about another primary, I am considering prophylactic right mastectomy, with or without reconstruction bilaterally.

I work with a lady who told me she had bilat Mx years ago. Goes flat-chested and is very happy and healthy. I had never realised!

Hmmm .... I don't have to decide anything yet, don't finish chemo til mid-June, and that's when I see my breast surgeon again ..... Food for thought though! Thanks 🙂
Esme
Member

Re: ANYONE ANYWHERE HAD BILATERAL (no recon ideally but not necessarily)

Hi Lyssy,
I didn't have any problems at all getting my surgeon to agree. When I spoke to her I was very clear that it was what I wanted a)because they told me it would reduce my chances of getting cancer in my left breast by up to 95%! Also, I worry every time I go for a mammogram, and spend a lot of unecessary time wondering if something awful is growing in my breast that I am not aware of. b) I feel lopsided and, in my opinion, look daft!
I think that because I was very determined and had clearly looked into the pro's and con's my surgeon realized that it wasn't a rash decision and was happy to go ahead. I think they just want to know that you are very clear that this is the right decision for you.
Maybe you could talk things through with your Breast Care Nurse? They are usually very supportive.
Good luck!
Lizcat,
Thank you for your reply re recovery. Driving again after 4 weeks sounds pretty good! I know it sounds daft, but I've got 3 weeks to go before I have my op and I can't wait! I just want it over done with and can hopefully feel less worried about what is happening in my body!
Esme x

lizcat
Member

Re: ANYONE ANYWHERE HAD BILATERAL (no recon ideally but not necessarily)

I originally had single mx with no recon 5 yrs ago after chemo. After a few years of living with the lop-sidedness and bone secondaries, I asked my surgeon if he would consider a second mx. As I was reasonably stable at the time and the surgeon is lovely, he agreed on the grounds of balancing me up and for prophylatic purposes. The results are fab and gave me no pain at all. I retired early due to the secondaries so can't help re the recovery time but was allowed to drive again after 4 weeks, by which time I was climbing the walls having to sort other arrangements for getting around - how materialistic is that??!

Whatever any of you decide, I hope it goes well and you get what you want (my surgeon said the psychological element is so very important). I don't regret it for one minute x

Lyssy
Member

Re: ANYONE ANYWHERE HAD BILATERAL (no recon ideally but not necessarily)

@Esme, Pinkjeni & Happyshopper - I'd love to know how you managed to get them to agree to a prophylactic mastectomy if you feel comfortable sharing? The impression I've been given is that I'm going to have to fight pretty hard for it in my area (Essex). Any advice would be great!
Esme
Member

Re: ANYONE ANYWHERE HAD BILATERAL (no recon ideally but not necessarily)

Hi,
I was really pleased to find this thread as I am booked in for a prophylactic mastectomy on May 7th. I have no qualms about having it done and being boobless, I will just be glad not to have so much worry. I hate going for my yearly mammogram and then worrying about the result or wondering if there is something growing in my boob that I don't know about!
The thing I would be interested to hear from other people is how long the recovery time is for a prophylactic mastectomy. Presumably it will not be as long as my previous mastectomy, which included total lymph node clearance. I'd also undergone chemo which lowers the immune system. This time I am going in fairly fit and healthy.
I have booked 3 weeks off work and hope this will be enough! Does anyone have any experience of this? I would be grateful to know as it would be better to sort out my sick leave now if neccessary!
Hope all you lovely ladies are doing ok.
Esme x

Lyssy
Member

Re: ANYONE ANYWHERE HAD BILATERAL (no recon ideally but not necessarily)

I had a single mastectomy in July 2012 & have just had my first visit with the plastic surgeon to discuss recon. Honestly it left me reeling - I don't have enough fat on my tummy for that option so he's suggesting implant or lower lumbar flap. The thing that has me shaken up is that whatever option I chose, they will want to reshape my good boobie & I'll lose sensation there as well as the additional scars elsewhere. I've been fine with my scar & I am seriously considering asking them to just remove the good boobie!
Seeing all your positive comments really made me feel better about that idea as so many around me think 'it's a bit drastic, isn't it?' Thank you ladies, I'm so glad I found this site & forum even if I'm still trying to work out what so many of the abbreviations mean! lol
pinkjeni
Member

Re: ANYONE ANYWHERE HAD BILATERAL (no recon ideally but not necessarily)

Hi I'm just about to have my second mastectomy which will stop me being lopsided. I can't wait to stop having to wear my prosthetic boob and just go boob free. I'm seriously positive about having this done hope you're all doing well Jx

teabagwoman
Member

Re: ANYONE ANYWHERE HAD BILATERAL (no recon ideally but not necessarily)

I had a double mastectomy in February this year as I had two different cancers, one in each breast. Have had chemo and radio and am now on Herceptin and hormone treatment. I opted not to have reconstruction as at 67 my boobs were going south anyway and I really didn't want even more surgery. For a long time I didn't bother wearing my softies but when I had my pick line changed to a Grolschen line which comes out in my chest I found wearing my bra and boobs gave me something to tuck my line into. I have rather lumpy scars which are proving an advantage as the lumps stop my bra from riding up! I do find necklines difficult though - I used to look best in v necks but now find that they don't sit right. I must say that I've found this thread very encouraging just as i was beginning to get a bit depressed with it all. Thanks for that.

Dorothy61
Member

Re: ANYONE ANYWHERE HAD BILATERAL (no recon ideally but not necessarily)

Many thanks to JuniorJ for starting this thread. Quite new to this lifestyle. Only had bi mx in March this year and decided no reconstruction wanted. So far no regrets. I like my prosthesis and going without, feel like I have the best of both worlds. Reading everyone's posts has made me feel I'm not alone in being comfortable breast free. I'll be honest I was beginning to feel a bit less of a woman because I feel so comfortable without. I feel good again. Thank you all very much. X
Nonny
Member

Re: ANYONE ANYWHERE HAD BILATERAL (no recon ideally but not necessarily)

HiNat
YES, I have gone out for a walk or just to the local shops and suddenly realised I have not 'shouldered' my boobs. As you say, people just don't notice. I must admit I do feel more comfortable without as I do suffer some pain in the side where I had rads, it has affected my ribs, so I tend to be without more than with.
Best wishes to all
Jennie

ndp
Member

Re: ANYONE ANYWHERE HAD BILATERAL (no recon ideally but not necessarily)

I am 39 and had bilateral mx two years ago. I have recently felt that I'd like a female shape again but the docs have said they won't give me implants because of the radiotherapy. I really don't fancy the bigger operations but am now waiting for an appointment to have a chat about it all with plastics so I can make the informed decision. I don't really like the way my breastbone sticks out and feel quite self conscious about it so don't generally go out without my falsies in. That said, it is quite nice to go bra/boob free around the house.
Quite honestly I cannot see me having recon but I know that I'm ok with no boobs. I'm in no pain/discomfort and can run, walk the dogs. My family say they don't notice my breastbone - maybe they don't but either way I don't lose sleep over it! I kind of look forward to the day I'm out and about and suddenly realise I have forgotten to put my boobs in! Has this happened to anyone?!
All the best
Nat
happyshopper
Member

Re: ANYONE ANYWHERE HAD BILATERAL (no recon ideally but not necessarily)

Hi Junior J,
I had a right sided Mx in 2004 at the age of 39 and I coped well with a prosthesis (was a 36B). At this point I felt that recon wasn't for me.
The following year I had a prophylactic left-sided MX, and bilateral recon with expanders at the same time (I had let people talk me into a recon by saying how "awful" it would be without 2 breasts.
It turned out to be a big mistake and due to problems I chose to have them removed and left deconstructed in Jan 2008, rather than further attempts at recon.
I am now 48 and have remained breast-free since then, and feel much happier than I was with recon. Most importantly, I don't have the worry of further surgery, as is often the case, with recon. I have managed to put that episode behind me, and get on with my life the best that I can. I have a few sets of different prostheses, including stick-on ones, go swimming, walking, do exercise DVDs and pretty much everything else without any problems. I do sometimes have a wobble and a gripe about necklines , as I can feel conscientious about lower necklines and what people can see, but disguise this with bold necklaces/scarves. Most of the time this is not an issue.
Other positives - no worry about droopy boobs as getting older, I can wear different types of prestheses depending on clothes etc, I can take them off at night and they look fabulous, equal and pert all the time in clothes!! Good luck XXXXX

JuniorJ
Member

Re: ANYONE ANYWHERE HAD BILATERAL (no recon ideally but not necessarily)

Thanks Viv. I wish you well. Everyone who's replied has been SO positive. I feel very much reassured ... and August is very recent for you too. I hope your recon works out and you meet a lovely man who deserves you! xxx
vivtwins1
Member

Re: ANYONE ANYWHERE HAD BILATERAL (no recon ideally but not necessarily)

Hi Junior J

I had bilateral mx on 24th Aug this year with temporary implants as I didn't want to be flat chested. However had to have one removed due to infection. I am going for DIEP recon next year but I am 42 and single and would like to have enough confidence to go out and meet someone. As Harp said, anyone worth anything won't worry about the lack of boobs but for me it is all about confidence. I'm much happier now I have my silicone prothesis, didn't like the softie, I found it moved around too much.

If you want to chat then please PM me. Don't worry there is very much life after mx!

Viv xxx
kayh317
Member

Re: ANYONE ANYWHERE HAD BILATERAL (no recon ideally but not necessarily)

junior J
i had bilateral mastectomies aug 11 initially with immediate recon but got infection in both sides and the recons were removed. I am now unable to have recon and live breast free. i am 49 and live in north derbyshire so guessing not that far away from you.
i try to keep a positive attitude and at least i know i won't have saggy boobs when i am old !!
happy to have a natter if that will help you
K xx

Cackles
Member

Re: ANYONE ANYWHERE HAD BILATERAL (no recon ideally but not necessarily)

I had Bilateral Mastectomies from the start. I was large breasted and did not wish to be lopsided. The operation was carried out with little discomfort and I was delighted with the flat look, (which meant I could downsize in bras. ) They do ride up but self adhesive prosthetics don't. I also wear Amoena pretty bra / camisoles / tee shirts which are pocketed. I have truncal oedema but that is because of a tight scar line an unusual problem but even with this I would not change things.
I hope all goes well for you

mazdasol
Member

Re: ANYONE ANYWHERE HAD BILATERAL (no recon ideally but not necessarily)

I had my first mastectomy when I was 50 in 1997 and I had a 2nd mastectomy in 2008. After my 1st op I was back at work full time in a strenuous job about 10 weeks after the op and I continued to work until I retired at 60. I found the 2nd op was easier to cope with because I had been through it all before.
The surgeon has tried to persuade me to have reconstruction surgery but I have never felt the need to have major surgery and even more scars. Today's prostheses are very good and as long as you choose clothing carefully there is no problem. I have never been one for showing my cleavage anyway. In some ways I prefer having both breasts removed now because I am no longer lopsided and I sometimes go without bra / prostheses which is very comfortable, (mainly around the house) but also when camping and going to / from showers, if I wear a baggy top. I can now sleep comfortably on my front, as my breasts do not get in the way. That is very useful to ease pain in my back / hips (caused by OA).
The only disadvantage is that bras sometimes tend to ride up more, but that hasn't been as much of a problem as I thought it would. It also causes slight problems when having blood tests, injections or blood pressure taken because you do not have a "good" arm but I have always managed to cope. When having a bone scan they were happy to do the injection into my foot instead of arm. I did notify them in advance and the appointment time was changed to ensure that somebody would be available to do it.
I swim frequently, look after my grandson 2 days a week and carry on as if I had not had any operations, except for taking precautions to prevent lymphodoema, and I am still taking anastrozole and calcium tabs. There are so many people who have had mastectomies, having bilateral ops should not make any difference to a single op once you recover from the surgery.
Best wishes, I am sure you will do well.

harp1970
Member

Re: ANYONE ANYWHERE HAD BILATERAL (no recon ideally but not necessarily)

Hello Junior J

I had bilateral mastectomies last September and have decided I don't want recon-I am happy with my prostheses and just glad that I can move on with my life. I was 40 when I was diagnosed and I am single, but have decided that any man worth his salt will love me whether I have boobs or not! My Mum had BC 40 years ago (aged 29) She too has had bilateral mx and is still here, happy and healthy 40 years later. If you want to PM me please do. Good luck and lots of love xx

JuniorJ
Member

Re: ANYONE ANYWHERE HAD BILATERAL (no recon ideally but not necessarily)

Jennie / Nonny, thank you. That's what I wanted to hear. As a friend of mine recently pointed out: "WE ARE MORE THAN OUR BREASTS!!" I think I will be okay and to be honest my boobs are going too far south anyway for my liking! I do quite a bit of sport and they get in the way. A flat chest will be okay I think. There's flat and then there's pancake flat, but it'll be okay like you say once I'm used to it. THANK YOU for your reply and best wishes. Stay young at heart.
JuniorJ
Member

Re: ANYONE ANYWHERE HAD BILATERAL (no recon ideally but not necessarily)

Amylou ... that's great you're doing so well and so active. Sad that you're so young but thank you so much for that positive response. There's life after ... and August is very recent so you are doing great!! I hope you continue to ... much love xxx
amylou29
Member

Re: ANYONE ANYWHERE HAD BILATERAL (no recon ideally but not necessarily)

Hi hunni.
Im 29, had a double mx on the 14th of august with a full lymph clearance. doing well, running round after my 2 little ones and start horse riding again 3 weeks ago. if you need to talk just pm me

lots of love x x x x

amylou29
Member

Re: ANYONE ANYWHERE HAD BILATERAL (no recon ideally but not necessarily)

Nonny
Member

Re: ANYONE ANYWHERE HAD BILATERAL (no recon ideally but not necessarily)

Hi JuniorJ
I had a bilateral mastectomy in 2008. I was diagnosed in 2004 with DCIS in my left breast and had a WLE with no chemo or rads. Then in 2008 I had a 6.5cm Triple Negative tumour in my right breast, 5 out of 19 nodes and surrounding tissue affected. Had chemo first which got rid of tumour but cancer still active in nodes and tissue. So I decided to have a bilateral mx and had 3 weeks rads to follow. It was my decision not to have recon, I didn't want any more scars that necessary and I thought it would be nice to have the choice of whether to wear prosthesis or not depending on how I felt. It is great. I am 66 now, which I know is older than you, but I like to think I am not an 'old' 66. I can choose what I want to wear and when. In the summer when I go out I sometimes go boobless, it depends on what I am wearing. I have three different sets of boobs, but when I am wearing anything a bit loose I don't bother, it is very liberating. As my husband pointed out, there are a lot of ladies out there who don't have busts anyway. I won't say I didn't miss them at first, obviously I did, but I don't now, and I am quite happy with my body the way it is. Hope this helps a bit, I know body image is very important but I got used to my new shape very quickly, and don't think about it at all now.
Love and hugs
Jennie

JuniorJ
Member

ANYONE ANYWHERE HAD BILATERAL (no recon ideally but not necessarily)

Hi
I'm looking for someone who's well down the line having had bilateral mastectomies. I CANNOT have reconstruction because of a pre-exisiting medical condition. I'd like to chat to someone in a similar situation. Guess there aren't many. I'm only 48 but anyone will do as long as you have a POSITIVE attitude please!!!
I'm in the Yorkshire area but anyone anywhere .... thanks x