decision ! reconstruction or breast free ?

Hi, I was recently dx with my cancer recurring in my lymph glands & close by in breast tissue. Although my mammograms were clear, this was only discovered after I found a lump in my armpit & a biopsy revealed my enemy being back.
Anyway, my surgeon has said I have to have a mastectomy this time round. I have the option of mast only & living breat free (1 only), delayed rec or immediate rec using back tissue etc + implant.
My dilemma is I just can’t make up my mind…with only 4 weeks to go !
I have signed the consent for imed rec, but have been told I can change my mind.
I have read on here about the brave ladies who live breast free & can only imagine I would feel, I have read about the ladies that have had delayed rec & lastly the ones who have had the immediate. The latter does seem to be the op that causes more problems, due to infection, rejection etc.
I’m sorry this is so drawn out, but I could really do with suggestions as I am so confused right now. Ideally I would like a simple implant, but have been told this is not possible due to previos radiotherapy (which I don’t understand) Please help xx

Hi lezhop

I don’t know if my experience is of any help but, I had DCIS in left breast in 2004 just had WLE. Then in 2008 Triple negative in right breast, lymph nodes and surrounding tissue. I opted for bi lateral mastectomy along with axillary clearance on the right (5 out of 19 nodes affected)followed by 3 weeks of radiotherapy. I had TAC chemo first not only to shrink the lump (6.5 x 4.5cm) but as thinking time as to whether or not to go for reconstruction. In the end I decided not to. I find it very liberating, I can go boobless or with boobs, however the fancy takes me. I am 63 so I guess it is not overly important at my age, but I still like to look good! If you are a young woman I can understand how difficult a decision it must be.
I wish you well and I hope this is of a little help to you.

Nonny

Sorry Lezhop to hear of your dilemma,
I don’t know whether I can help, but there is a series of threads, living breast free and another about reconstruction, where you might find help in making your mind up.
I lived with one breast very happily (most of the time) for 7 years and when I had another primary diagnosis this year I was very happy to live breast free. In fact, no breasts seems better than one, as there is now no lop-sidedness. I did have a very supportive husband first time around and so that helped. This time I am a widow and have no room for a man in my life, so this makes things easier for me too. One of my mottos is “never say never”, although I cannot see a time when I would consider reconstruction at the moment.
Good luck with your choice
Hugs Maria

HI

I am only a young 36 year old and living with one breast does not bother me at all. I am 4 months post-mx now and doubt I will ever reconstruct. I may change my mind in the future, but for now it is not something I even want to consider

That said, I have a wonderful, supportive partner and only b/c cups anyway so my breasts were never part of my personality, so to speak.

Don’t believe the media hype that living without a breast is so emotionally difficult, everyone is different and there are many women who feel the same way as I do. I only wish I had had the conviction to have a double mx at the same time.

I have given a year of my life to bc and still am not yet back to full fitness, there is no way that I am giving up one more second of my life with unnecessary treatment, especially something as complicated and dangerous as a recon. I felt the whole medical team assumes and actively encourages a recon. I’m not sure why, but sometimes felt that the surgeons (men!), thought that I would only be happy with two breasts. One told me he ‘could give me back my femininity’!!!.

There are lots of good threads on here at the moment about positivity and I think that has a lot to do with it.

Good luck with whatever decision you make.

I had a mx two years ago. I was offered immediate reconstruction. I had a meeting with a reconstruction nurse and it all sounded very complicated so I just had the mx and thought I will see how I get on and maybe have a reconstruction later. Two years later I am living breast free (I won’t say happily because I would rather have my breast back). It is doable though. I spent a lot of time sorting out my prosthesis and underwear so I feel confident. I agree with Gretchen - bc has already had enough of my life and I don’t want to waste more time getting over a reconstruction. And knowing my luck it won’t be straightforward!

It is a very personal choice and it will depend on your circumstances, age etc. I am 53, maybe if I was 20 years younger I would go for a recon. I have been married for 31 years - if I was single and looking for a new relationship I might have a different attitude. Many women have reconstructions that they are very happy with.

Get as much advice as you can and if in doubt wait.

Good luck
Maude xx

Hi Lezhop,

Another one here who opted not to have reconstruction and hasn’t regretted it. My surgeons left it entirely up to me and I do understand your dilemma. I decided not to go for immediate recon to reduce my recovery time after the op. I’ve since decided I don’t want more surgery and don’t feel I’m any less feminine with one breast. I’ve been married for 20 years and my husband is comfortable with my new look so that helps.

My advice would be if you are not sure don’t have the recon immediately. You are not limiting your options by doing this but are keeping them open until you feel ready to make a decision.

best wishes, Jan xx

I had a single mx in april and was surprised how ok I was with it. I am however going to go for a recon.- maybe I am deluded but I want this completely behind me and I feel the prostheseis is more of a constant reminder than scars will be. I am even considering having the other one removed and reconstructed and having a pert pair! ( I have lobular cancer which is quite likely to come back in the other side).
As for your decision I can only share with you what my surgeon said- he did not recommend immediate reconstruction for 2 reasons- firstly it can lead to complications which might delay the chemo and secondly if you are going to have any radiotherapy it can cause a tightening of the skin around the area which will ruin the reconstruction. This might also be why you cant have a simple implant.
Living with one boob for a year is fine for me and I have appreciated the time to decide when and how to have the reconstruction without it being complicated by the cancer treatment which is far and away the most important part of all of this.
Good luck,
Naomi

I had mastectomy in February and have just finished chemo. I find it ok to have 1 breast and am not at all bothered. I have just started swimming and have got used to the prosthesis. I hated it at first but now it is just part of my underwear. I have a friend who had a really rough time with her recon but I know of others who are really pleased with the result. I cannot stand the thought of a long operation at the moment but who knows in the future. I would wait a while and keep your options open. I am going to talk to my Onc about having the other breast removed as I don’t like the uncertainty and want to do everything to avoid this in the future. I suppose I might then consider reconstruction and be able to choose my size. My God daughter thinks this a great idea and I should on her advice go for a J cup !!! Not likely !

Hi lezhop

So sorry to hear that your enemy is back. I lived in fear of recurrence for quite some time and have only just recently begun to feel normal again. It doesnt occupy my every waking moment now but I remain vigilant.

If you are having doubts about your decision to have immediate recon, dont go ahead - wait a while and see how you feel about it. At the moment you must be very shocked and distressed. My own experience informed me that this was not the best time for me to be making such an important decision. Too much information to deal with, too many methods of reconstruction to be able to make a decision in such a short space of time, particularly as having to deal with my diagnosis and all the nasty treatment that ensued.

I had right mast in Aug 2007. Then I had risk reducing mastectomy (left breast) in July 2009. In April this year I had bi-lateral recon with expander implants. Having lived with one breast for the best part of two years and with no breasts for almost 10 months, I finally decided that I would like to feel whole again. Also I was frequently late for work because my cats would hunt down my prostheses and drag them under the bed or into the spare room! I have gone to work with socks in my bra on more than one occasion!!!

I now have expander implants insitu. This is the most straightforward method of recon (still 5 hours of surgery though). However, my understanding is that expander implants are not suitable for those who have had rads. The idea is that they stretch the skin and muscle incrementally. After rads the skin does not stretch very well at all and the end result is not always that good. Eventually my implants will be replaced with a softer and smaller implant to try and achieve a more natural fall to the breast. I do look like a lap dancer at the moment. Having said that - my friends are green with envy as I now have the look of a 19 year old.

Although I did not like to look at myself without breasts I did accept and live quite happily (or so I thought) breast free. However, it wasnt until after I’d recovered from the recon that I began to realise that I perhaps had not quite cared so much about my appearance as once I did. I now can wear anything I want, without fear of the prostheses making an appearance. I can go swimming again, I do know that swimming is not out of the question but my heart just wasn’t in it. I have a new sense of freedom and feel good about myself. I have regained a sense of confidence and feel liberated from the constant reminder of my cancer.

Breast reconstruction is not for everyone and many women do live a healthy, happy and fulfilled life breast free. It is a very personal decision and may depend largely on ones personal circumstances. I am 48 years old and single. For women a little older, or who have a loving, supportive partner this may or may not be such a big issue.

A couple of years ago I read about a consultant breast surgeon who compiled a book with professional and tasteful photos of women who had undergone recon and those who had chosen to live without a breast/breasts. The pictures celebrated women who had been treated for breast cancer and who were proud to show off their new bodies. One women, who decided to live without her breast had had a very tasteful and beautiful tattoo over her mastectomy site - remarkable and a unique way of feeling good about her body. It worked for her.

Please dont feel pressured into making a decision that might not be right for you at this time. if you dont have immediate recon it will always remain an option. Can you speak to your breast care nurse - she should be able to spend some time with you discussing all the options available and exactly what each procedure entails.

Wishing you all good things
Monkey Girl x

Hi Nem

After reading your post I thought I would share my experience with you. I too was diagnosed with Invasive Lobular cancer (right breast) and am aware of the increased risk of a contralateral lobular cancer. For this reason I underwent a risk reducing mastectomy of the left breast in 2009. My surgeon knew that this was not a knee jerk reaction but a very carefully considered decision. I do not regret it. Also I have recently had bi lateral reconstruction (almost 3 years after diagnosis). I thought you might like to know that I have the pertest breasts known to man!! Of course they do not look entirely natural, they do not move naturally and they are not perfect because they are what they are - a reconstructed (or man made breast). One is placed slightly higher than the other and it requires some minor revision or “snagging”. Still, I am delighted with them and feel liberated from the shitty remnants (physically and psychologically) of breast cancer.

Best of luck with your decision

Monkey Girl x

Hi Lezhop

I had mx and clearance nearly 7 weeks ago, no recon.

I’m pregnant and so needed as short a time on the table as possible, plus having recon to match a pg boob wouldn’t have been a very good match in the long term!

I’m developing a hospital phobia and if I hadn’t been pregnant, I would have had the recon immediately. Now the mx is done, I just can’t imagine volunteering for more surgery. I don’t like having one breast and the prosthesis does not work well for me, although this may get better once I can wear my usual bras which still hurt post surgery.

I haven’t ruled out recon but right now I’m still too angry to consider more medical treatment and wish that part could have been over with alongside the mx.

Just another perspective! Good luck with your decision. xx Jane

I had mx last Sept 09. I was advised if you are to have radiotherapy they don’t recommend immediate recon as it will affect it. I am halfway through 18 doses of herceptin at the moment and will then have to make my mind up about whether to have recon or not. Recon not recommended whilst on herceptin due to poss heart problems. I am not sure about recon now, I was definate last year not so sure now. Think I have had enough of hospitals and also not sure if I want to put myself though the pain. OH says doesn’t bother him if I do or don’t he loves me either way (ahhh).

Good luck with your decision

I know it is not an easy decision. I had a mastectomy three years ago and wasn’t allowed an immediate recon. In the immediate aftermath of all my treatment I couldn’t imagine voluntarily subjecting myself to more surgery, but I finally took the plunge earlier this year, and had an LD flap in Feb. I still need implants (being a AA I am taking advantage of the opportunity to have a free boob job on the NHS, and having implant in both sides) and strangely have received a call from the hospital just today to ask if I can go in next week to get this done. So I’m in a bit of a state of shock (I had two months notice of the last op) but have accepted the date as I want to get on with it. But even as I am now, without the implants, I am so much happier than before the recon. I constantly felt like it was unfinished business, like I was lost in some cancer limbo land, but now I feel that I can move on, and am looking forward to getting on with the rest of my life after it’s all completed.

I had a Mastectomy 11 weeks ago. I initially chose not to go for a re-construction and am still quite happy to have only one breast. However, I am not getting on at all well with the prostesthis I was fitted with a week ago. It looks alright when I am fully clothed, but it feels so big and doesn’t stay in place. This is probably because I have yet to find a bra to fit me. I am an AA fitting and the only bra available costs £40+. Just one bra and it costs more than three weeks pension! I am 66 so not quite ready to give up on nice clothes. This would not have influenced my decision before surgery, but at this stage I just want to get on with life and for the first time I am feeling quite depressed. Over a bra of all things!!! Just another perspective on the issue. Good luck with your decision.

Thanks for sharing your experiences everyone, I didn’t start this thread but will be making this decision later this year.
Monkey girl- I’m so glad you are pleased with yours, thank you for the post, I havent broached the subject with the powers that be yet as I’m in the middle of yukky chemo but its all food for thought.

Hi wonderful life,
I saw your post and just wanted to say that most hospitals offer a pocketing service on ‘normal’ bras. Amoena also sell pre-formed pockets at £6 if youre handy with a needle.
You might also have a look on ebay, as Ive seen some more unusual sizes (I hope you dont mind me saying that, but Im a DD and have found one on there)
Best wishes Cathie

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