Hi Everyone,I went through surgery last September + re-excision on October for Stage 1 bilateral disease. Lots of DCIS with a very small invasive component. I have avoided Chemo/Radio for the time being. I lost both nipples. I opted for immediate recon, but during surgery surgeon chose to put in tissue expanders. I haven't had the full recon yet and now I've got doubts about going ahead with the full recon. Part of me just wants to take the expanders out and call it a day. I had large breasts (12DD). At the time, recon seemed to be the right decision because it was all so fast. Opting for the double op seemed like a big enough decision. But the tissue expanders are pretty weird, being nipple free is too. Also, there's no sensation of course. So it's purely for the lumps. Now I'm at this point, I don't know how much I care about the cosmetic. I am really flip flopping all over the place. One day I think, yeah, at least I can still play with being a busty babe and then other days I think how neat it would be to be a flat top and just free of the extra weight! I'm 34. Married. And, you know, I am a bit vain. I like to look good. I feel as though I have a second chance at life coming through with my diagnosis, so I working hard at living well and appreciating every day. But at the same time, I can be vain and also enjoy life with boobs or not, right? I just don't know! It is a weird space to be in. I am seeking stories from other women who've had mastectomy surgery (single/double, recon/not). And, in particular, anyone who's been through a bit of a struggle with the decision. I know it is my decision at the end of the day, but I am just curious to hear stories.Thanks all and take care,Jen

Hi Jen, I was 52 when diagnosed had bilateral mastectomy. I choose to be flat n fabulous... now nearing 57.. very happy with my decision.

Hi Jen, I am 57 & had single mastectomy last year, nearly finished chemo & then starting radio. In July I am having a mastectomy on the other side & reconstruction of both. I can't wait to get the other one done but that is just for my own reassurance & hate having 1 breast. As for reconstruction I want to feel a bit normal again & want a cleavage. There are a lot of my dresses I can't wear at the moment also looking at the scar is a reminder every day. But it is a huge procedure so am thinking very carefully about it at the moment. Good luck with your decision xx

Hi there,I always wanted a reconstruction. I lived with one breast for 2 1/2 years. I live in the tropics and found wearing a prosthesis so hot and heavy. The type,of clothes I wear in this hot climate, I couldn't wear with my prosthesis as I needed tops with higher necklines etc. my reconstructed breasts don't look anything like my real breasts but they look ok. In clothes they look fine. I do love them and being able to wear what I like again. The simple things like being able to wear a sarong or a towel wrapped around my top and it doesn't fall down. Having said that I know women who have chosen to be "flat and fabulous" and love that too. Don't let the expanders influence your decision, I haven't had them but reading what other ladies who have had them say, they are nothing like the implants. Just remember they are just shapeless bags whose purpose it is to sketch your skin out. Most people describe them as two bags of cement on your chest. I'm sure some ladies who have implants can let you know the difference in feeling they have. My reconstruction was a TRAM flap so my breasts are soft and realistic feeling (just numb). Thats my story. Good luck with whatever you decide. Paula xx

I had a bilateral with tissue expanders and waiting for changeover surgery anytime now. I plan to have the nipples done too. I am very bottom heavy and it's difficult getting clothing to fit even with an 14E cup. ..due to narrow back. I like the fact I have perkier boobs. They are now DD but weigh about half the originals . I can wear all types of clothing without having to worry about things on show, looking droopy etc. And I swim so no change room issues. My expanders have been in 12 months so I'm used to them ...even the hard bits. No they aren't your original breasts, your body is changed forever, but I am happy naked, dressed or otherwise. I didn't want to spend my life feeling I needed to cover up. So I guess it achieved what I wanted. Goodluck with your decision. The changeover implants are much softer than the expanders and will look quite different. If they remove them they will need to recut the skin and trim off the excess and you may need additional surgery to remove the side boob you most likely have (I know I have...fat deposit, not breast tissue ) or you will have what they commonly call dog ears. Changover is just a small recut and pop in. Just thought you should know that, but you will know more once you discuss with your surgeon. Kath xThis link may be helpful.http://www.breastcancer.org/treatment/surgery/reconstruction/no-reconstruction

Double Mastectomy: to reconstruct or not?

14 Replies

SoldierCrab
Member
9 years ago
I have a very little bit of feeling in a few spots but most of my chest wall is numb still I am 4 years since surgery.
Jennifer1982
Member
9 years ago
Thanks Afraser and Soldier Crab.

I am in for another surgery either way as I have the tissue expanders in. The time between tissue expanders being put in and the final recon extended because I had to have a re-excision and then it was Christmas. Now I've requested further extension because I am back working. Which is great, I suppose, it means I'm pretty well, but I have time to dwell on all these things.

That makes so much sense, Soldier Crab. Oh my. 8kgs is so much for your back. Do you have sensation or is it weirdly numb? I feel like there would have to be more sense on the flat chest than on the recon, but maybe the top layer is still numb?
SoldierCrab
Member
9 years ago
Jennifer i thought about it a few times..... but I have allergies to many things... I didnt want any more surgeries.... i feel very comfortable as the new me no huge heavy boobs to hurt my back and neck... I lost 8kgs from my bilateral ....thats a huge steess on ones back and neck... ask more questions if you need more information.
Afraser
Member
9 years ago
To be honest, I didn't have any problem with a decision, I was never keen on a reconstruction, haven't had one and can't imagine I ever will.

I had a lot of problems with a persistent seroma, which may have proved really problematic if I had had a reconstruction and put me off further surgery to an extent.

I don't have a problem with how I look. I can easily imagine many women do. I don't look like the lovely woman in the ad. I was/am big breasted so I have one large, ageing boob and a big scar with a flap of skin, which I really like because it gives me a very small but useful cleavage (good surgeon!). I think I look like me, lived in but eminently serviceable! My husband's glad I am here and likes both sides.

I wear a prosthesis, I don't find it hot or uncomfortable. I pop it in in the morning and forget about it. After a year with a pain of a pad, I am perfectly happy.

I think reconstruction is a great option to have. I didn't choose it, lots of women do and are very happy with their decisions. Choice is a good thing and we must all support the range of options so that they are there for all the other women who will follow us, but will survive and help beat cancer.
rowdy
Member
9 years ago
Hi I had a mastectomy with immediate reconstruction ( left Breast ) I have not regreted having recostruction had tramflap that was long a surgery and long recovery. When dressed no one would know, my scarring is all under my breasts so can't see. I have no feeling n my new breast but it does feel soft and natural.
It is such a personal choice for me I didn't want to wake up with no breast
Good luck with what ever choice you make
Jennifer1982
Member
9 years ago

Soldier Crab said:

Hi Jen, I was 52 when diagnosed had bilateral mastectomy.
I choose to be flat n fabulous... now nearing 57.. very happy with my decision.

soldier crab... If you see this I wonder if you deliberated at all about the recon or if you just knew it wasn't for you?
Jennifer1982
Member
9 years ago
Thanks to you all for all your great and generous replies. I think the advice that I shouldn't base my decision on my feelings about the tissue expanders is a really good one. That's helped, at the very least, to separate my feelings out a bit. I now wonder how used to them I actually am. Even though it's only been 5 months. They've become part of me even though they're only temporary. It's interesting getting used to my new body. I don't think I'm getting nipples done. But still not sure about boobs. Going to talk it all though with my surgeon on Thursday. Haven't actually raised it at all. Oh my. What a thing to be thinking about. Jen
Brenda5
Member
9 years ago
Doesn't worry me. I only had little boobs and lost one to bc. I was ok if they wanted to take both but they said only one required. Apart from clothes liking to pull to one side and buttons not lining up due to one lump on one side and nothing on the other it doesn't worry me at all. Would have been kinda cool if I had both gone to go skinny dipping topless. :)
Hopes_and_Dream
Member
9 years ago
Hi Jen, I had a left mastectomy last August and as you said, things move so quickly. I was about 2 weeks from Breastscreen callback, core biopsy, cancer diagnosis and surgery. I had an MRI to confirm no cancer in the right breast so I knew it was going to be a single mastectomy. I got all the options from my cancer surgeon (who is also a breast cosmetic surgeon). I'm not big breasted so a lumpectomy wasn't a good option for me. I could have gone flat and fabulous, but that's pretty much me already haha (not quite, but I'm only an A-B cup). I chose a nipple sparing mastectomy with an immediate silicone implant. I was very fortunate in having a 13mm IDC, grade 1, stage 1 (no lymph nodes involved). No other treatment needed other than Arimidex as I was E100%, P95%.

So 6 months on my breast looks good - pretty much a perfect match for the other side. Other than a fine scar running underneath and 3 fading blue circles from the sentinel node dye you wouldn't be able to tell it was fake. It has also softened a lot over the past 2 months, feeling just a bit firmer than my natural breast. I'm told this will continue to improve.

There's no sensation but I've become used to it. My nipple looks the same but is numb, though it does still respond to pressure. I've recently got a little circle with some feeling, but not expecting much more!
This is my new normal and I am so grateful to end up with what I've got. Our bodies change forever, but like all our other scars and bumps it is just a visual reminder of our life and experiences and strength.

Wishing you all the best with your decision Jen, you will do what feels right for you. Jane xx
primek
Member
9 years ago
I had a bilateral with tissue expanders and waiting for changeover surgery anytime now. I plan to have the nipples done too. I am very bottom heavy and it's difficult getting clothing to fit even with an 14E cup. ..due to narrow back. I like the fact I have perkier boobs. They are now DD but weigh about half the originals . I can wear all types of clothing without having to worry about things on show, looking droopy etc. And I swim so no change room issues. My expanders have been in 12 months so I'm used to them ...even the hard bits. No they aren't your original breasts, your body is changed forever, but I am happy naked, dressed or otherwise. I didn't want to spend my life feeling I needed to cover up. So I guess it achieved what I wanted. Goodluck with your decision.

The changeover implants are much softer than the expanders and will look quite different. If they remove them they will need to recut the skin and trim off the excess and you may need additional surgery to remove the side boob you most likely have (I know I have...fat deposit, not breast tissue ) or you will have what they commonly call dog ears. Changover is just a small recut and pop in. Just thought you should know that, but you will know more once you discuss with your surgeon. Kath x

This link may be helpful.
http://www.breastcancer.org/treatment/surgery/reconstruction/no-reconstruction