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kruzin
@kruzin

Posts: 8
Joined: Jul 08, 2018

Mastectomy and Reconstruction (or not)

Posted by @kruzin, Sun, Jul 8 9:06am

Being treated for breast cancer, having a mastectomy and was wondering what people did for reconstruction?

REPLY

Hi, @kruzin, and welcome to Mayo Clinic Connect. I've moved your post to the Breast Cancer group, as I think you will meet others here who will have similar health stories.

As you are approaching a mastectomy and looking into what others have done for reconstruction, I'd like to introduce you to some others who have also talked about breast cancer and mastectomy, like @jusme @chamisa @elvandi @jboisjolie @cindylb. Hoping they will chime in here and share their thoughts with you.

@kruzin — how are you feeling about the mastectomy?

I opted not to do reconstruction and I'm happy with my decision. I got the prosthetic and still haven't worn that even…..I'm about 3 years out from the bi lateral mastectomy. Of course, I am now 60 years old and I didn't want the extra surgery. I also mistakenly believed that it would be harder to find cancer if it came back but that isn't true from what I now know. The upside of no reconstruction for me is that I don't have to wear a bra or shop for a bra. I was never a fan. I also found the pain from the bi lateral very manageable and the recovery and healing time was much quicker than I expected. The downside is that at first my chest appearance was lumpy (not in a good lump way) but scar revision surgery for my lymphedema made my chest wall much better looking under clothes (less lumpy). The other downside is that you have to revise what you wear slightly….V Necks are pretty much out or anything low cut and sometimes I feel like I look like a giant pear (small or top and ever growing toward the bottom). But, I am very comfortable and everyone says they can't really tell I don't have breasts. I don't wear tight tops….I'm more 'flowy' now.
It's a big decision but remember………..you don't have to do the reconstruction right away or at the same time as the mastectomy. You can take your time when you're not also thinking about breast cancer and do it later. I know women who have done all three – immediate reconstruction, reconstruction later and some no reconstruction.

@cindylb

I opted not to do reconstruction and I'm happy with my decision. I got the prosthetic and still haven't worn that even…..I'm about 3 years out from the bi lateral mastectomy. Of course, I am now 60 years old and I didn't want the extra surgery. I also mistakenly believed that it would be harder to find cancer if it came back but that isn't true from what I now know. The upside of no reconstruction for me is that I don't have to wear a bra or shop for a bra. I was never a fan. I also found the pain from the bi lateral very manageable and the recovery and healing time was much quicker than I expected. The downside is that at first my chest appearance was lumpy (not in a good lump way) but scar revision surgery for my lymphedema made my chest wall much better looking under clothes (less lumpy). The other downside is that you have to revise what you wear slightly….V Necks are pretty much out or anything low cut and sometimes I feel like I look like a giant pear (small or top and ever growing toward the bottom). But, I am very comfortable and everyone says they can't really tell I don't have breasts. I don't wear tight tops….I'm more 'flowy' now.
It's a big decision but remember………..you don't have to do the reconstruction right away or at the same time as the mastectomy. You can take your time when you're not also thinking about breast cancer and do it later. I know women who have done all three – immediate reconstruction, reconstruction later and some no reconstruction.

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Thanks for replying any information right know is soooooo helpful especially from somebody that had been down this road. I'm thinking to take the time for my body to heal, and make the right decision on a doctor for reconstruction if I decide to. I'm in my early 50 so will see about what to do about having a double mastectomy, they say it doesn't (doctors words ping pong back and forth) spread to other breast, but like you said who wants to deal with this again! It's all about insurance also. Thank you again for your help.

@cindylb

I opted not to do reconstruction and I'm happy with my decision. I got the prosthetic and still haven't worn that even…..I'm about 3 years out from the bi lateral mastectomy. Of course, I am now 60 years old and I didn't want the extra surgery. I also mistakenly believed that it would be harder to find cancer if it came back but that isn't true from what I now know. The upside of no reconstruction for me is that I don't have to wear a bra or shop for a bra. I was never a fan. I also found the pain from the bi lateral very manageable and the recovery and healing time was much quicker than I expected. The downside is that at first my chest appearance was lumpy (not in a good lump way) but scar revision surgery for my lymphedema made my chest wall much better looking under clothes (less lumpy). The other downside is that you have to revise what you wear slightly….V Necks are pretty much out or anything low cut and sometimes I feel like I look like a giant pear (small or top and ever growing toward the bottom). But, I am very comfortable and everyone says they can't really tell I don't have breasts. I don't wear tight tops….I'm more 'flowy' now.
It's a big decision but remember………..you don't have to do the reconstruction right away or at the same time as the mastectomy. You can take your time when you're not also thinking about breast cancer and do it later. I know women who have done all three – immediate reconstruction, reconstruction later and some no reconstruction.

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My breast cancer was lobular (not ductal) and it was in both breasts at one time or other (why I decided to remove both), but ductal can be just in one breast and I believe commonly is. I think if I had one breast removed I might have opted for reconstruction because it might be more comfortable to have symmetry between breasts. And yes, insurance and cost is also a consideration, especially costs and coverage being what they are. Take care and reach out to people on this site, it has been very helpful for me in so many ways throughout my journey.

I had a double mastectomy with DIEP reconstruction. I had my surgeries in New Orleans with the wonderful doctors at the Center for Restorative Breast Surgery (breastcenter.com). I was very pleased with the way my surgery turned out and love the doctors there. Drs. Scott Sullivan and Frank DellaCroce were the surgeons who performed the reconstruction, and one of the doctors who is no longer there did my mastectomy.

Last month was my two year anniversary for a double mastectomy. I have not re-constructed. I had gone on a women’s only tour group vacation a year before my diagnosis and met a lady whom I had known for three days before I realized she was “going flat”! The only reason I even realized it was because when we went to a spa she refused to take her camisole off. I was amazed that I hadn’t even noticed! So then when I had my diagnosis I remembered that, and my original intention was to not reconstruct at all. I asked my surgeon to make me as “flat as a 10-year-old boy” LOL. Anyway, I had chemo and radiation also, and the only reconstruction that I can have is the DIEP flap because of the radiation to my skin. There is a practice in my town of Fort Worth Texas that specializes in DIEP flap after mastectomy. They do a lot of them and have a high success rate. If you go that route, it is important to go somewhere that has a lot of experience because the procedure involves micro surgery. Last year I briefly reconsidered and thought about doing the DIEP flap, but then I ended up having three surgeries for pelvic floor prolapse (which had nothing to do with cancer) and after having all those surgeries I’m back to where I don’t want reconstruction— because I’m really tired of having surgery. I often go flat and it doesn’t bother me at all. I have prostheses, I call them my “foobs” (fake boobs), of all different kinds… foam, beads, silicone, fiberfill, and for swimsuits, those nylon net bath scrubber puffs work fantastic (they are light and drain the water out immediately). I find most of them to be a little awkward and uncomfortable to me, and don’t seem to sit at the place that looks natural (I’m 63, and high-up perky doesn’t look “right”!) One person told me that the Coobie slimmers with the built-in padded bra that you can slide the foobs into work well, and they do because they don’t ride up. But what I have found to be the best for me is to just wear a T-shirt or tank top that has built-in padded shelf bra. You can always stuff it if you want, but I find that wearing them “as is” works well for me. I will usually wear a vest or open shirt or something over the tank or T-shirt. It makes me look like I have some boobs and it’s OK if they are size A or small B.

After re-reading your original post I want to add that I had cancer in one breast, and my medical oncologist was not happy with my wanting both breasts removed. She fussed at me every time we discussed it. I was insistent (my surgeon gave me no flak about it al all) both so I wouldn’t have to go through everything again if I did develop cancer in the other breast, and also for symmetry. I don’t think I would feel as comfortable being seen without my “foob” if I still had a remaining natural breast.

Liked by cindylb

@cindylb

I opted not to do reconstruction and I'm happy with my decision. I got the prosthetic and still haven't worn that even…..I'm about 3 years out from the bi lateral mastectomy. Of course, I am now 60 years old and I didn't want the extra surgery. I also mistakenly believed that it would be harder to find cancer if it came back but that isn't true from what I now know. The upside of no reconstruction for me is that I don't have to wear a bra or shop for a bra. I was never a fan. I also found the pain from the bi lateral very manageable and the recovery and healing time was much quicker than I expected. The downside is that at first my chest appearance was lumpy (not in a good lump way) but scar revision surgery for my lymphedema made my chest wall much better looking under clothes (less lumpy). The other downside is that you have to revise what you wear slightly….V Necks are pretty much out or anything low cut and sometimes I feel like I look like a giant pear (small or top and ever growing toward the bottom). But, I am very comfortable and everyone says they can't really tell I don't have breasts. I don't wear tight tops….I'm more 'flowy' now.
It's a big decision but remember………..you don't have to do the reconstruction right away or at the same time as the mastectomy. You can take your time when you're not also thinking about breast cancer and do it later. I know women who have done all three – immediate reconstruction, reconstruction later and some no reconstruction.

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I also have invasive lobular, but it has not spread,but do don't want to worry again, I'm know reaching out to find as much information from people like you to learn as much as I can. So much is thrown at you in the beginning, and started chemotherapy first(and still am) so my treatment's first where strong, but there not now. So I feel I Can deal with my second fase easier about 4 more months till surgery, but time flies to fast so doing my homework! You also take care, and I really do appreciate, oh do you have any feeling in your area, nurse said you don't, and see never heard that?

@bomashisha

I had a double mastectomy with DIEP reconstruction. I had my surgeries in New Orleans with the wonderful doctors at the Center for Restorative Breast Surgery (breastcenter.com). I was very pleased with the way my surgery turned out and love the doctors there. Drs. Scott Sullivan and Frank DellaCroce were the surgeons who performed the reconstruction, and one of the doctors who is no longer there did my mastectomy.

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Thanks you for responding. I actually been looking into these surgeons, they seem amazing, actually just listed to Dr. dellaCroce on podcast, and learned so much from it. But I don't think my insurance will cover, but I'm definitely going to find out. I live in Massachusetts so I'm not sure, but this place would be my first choice.

Thank you for responding. I'm still receiving chemo, and know looking into the next stage of course. All this information has been beyond helpful from people that has been through this. Doctor's don't something think of you as a whole body, so I very aware of this. I have kidney disease, but not in kidney failure so I look at protecting them also. I have Invasive lobular with dense very cystic breast, but it is in only one breast, but very difficult to see this type, only 20 percent of people get this, so that's why trying to figure out if a double mastectomy is better. Thanks you again for reaching out with your story, and do you have any feeling in that area, a nurse yesterday said you don't and never heard that?

@bomashisha

I had a double mastectomy with DIEP reconstruction. I had my surgeries in New Orleans with the wonderful doctors at the Center for Restorative Breast Surgery (breastcenter.com). I was very pleased with the way my surgery turned out and love the doctors there. Drs. Scott Sullivan and Frank DellaCroce were the surgeons who performed the reconstruction, and one of the doctors who is no longer there did my mastectomy.

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Dear Kruzin, I had my surgeries back in 2005. They now have their own beautiful facility, as well as additional doctors. I am sure they have newer and more updated procedures and I can assure you, they are up on the latest and greatest. I'd give them a call and discuss your situation and insurance. Maybe they can help you with it. Since you live in Massachusetts, have you checked into Sloan-Kettering in NY? Or perhaps Brigham and Women's Hospital in Boston? I know Sloan-Kettering has an excellent reputation. The other thing you could do is call Dr. DellaCroce's office and if you find your insurance won't cover, ask them to recommend a surgeon nearer to where you live. I remember when I had my surgery there were only a handful of surgeons in the country qualified so the choice was much easier. Best of luck and if I can help in any way, just let me know.

@kruzin

Thank you for responding. I'm still receiving chemo, and know looking into the next stage of course. All this information has been beyond helpful from people that has been through this. Doctor's don't something think of you as a whole body, so I very aware of this. I have kidney disease, but not in kidney failure so I look at protecting them also. I have Invasive lobular with dense very cystic breast, but it is in only one breast, but very difficult to see this type, only 20 percent of people get this, so that's why trying to figure out if a double mastectomy is better. Thanks you again for reaching out with your story, and do you have any feeling in that area, a nurse yesterday said you don't and never heard that?

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Kruzin – I did opt for the bi lateral mastectomy because the first time I was diagnosed with Stage 0 it was in my left breast and removed via lumpectomy with wide margins. Two years later I had Stage 1 invasive in the right breast. Of course prior to surgery I didn't know how bad the cancer was in the right but I went with the bi lateral mastectomy because I had both breasts involved already and figured it was just going to continue and I didn't want to take a chance of missing it (that lobular is tricky) and having even more issues down the road. I won't know if I resolved my problem for many, many years down the line but I wanted to put an end to the worry of having to take out pieces, bit by bit and not knowing if it might spread and become worse. My surgeons and oncologists at the time offered both lumpectomy and mastectomy as options and didn't hesitate to go with the full bi lateral mastectomy. I had pretty strong feelings that I didn't want the on-going surgeries or worry. I had cysts and benign breast lumps over the years and a couple of surgeries prior to the mastectomy, so I'd had enough. Following surgery my medical team did a full pathological work up of the breast tissue and they found pretty much what we suspected, which was one area of invasive lobular carcinoma, LCIS and DSIC and microcalcifications throughout both breasts. With that much tissue they can do a lot of tests and get tons of information on exactly what is growing. In my case, everything was growing in there and it wasn't good. I could have found just that one area and then perhaps regretted my decision but I don't think so. For me it was a matter of being the most aggressive I could be to remove the potential for cancer in the future. The mastectomy isn't really a very difficult surgery (I didn't think). After a couple weeks and good self care and follow up care you feel pretty good and within a year I was feeling pretty much like my old self.

@kruzin

Thank you for responding. I'm still receiving chemo, and know looking into the next stage of course. All this information has been beyond helpful from people that has been through this. Doctor's don't something think of you as a whole body, so I very aware of this. I have kidney disease, but not in kidney failure so I look at protecting them also. I have Invasive lobular with dense very cystic breast, but it is in only one breast, but very difficult to see this type, only 20 percent of people get this, so that's why trying to figure out if a double mastectomy is better. Thanks you again for reaching out with your story, and do you have any feeling in that area, a nurse yesterday said you don't and never heard that?

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I'm so glad you listened to your feelings, and it worked out for the best! I'm going to talk to my surgeon about this, but she sounds like I should just do the one, but we'll see. It's different when someone doesn't have this to say, and this is a business to make money. But I'm doing lots of research, and you've helped so much and I appreciate lots

I had a double mastectomy with expanders in February 2016 followed by chemo. Due to the aggressive grade of my tumor (grade 3; triple negative), my doctors advised waiting a year before having reconstructive surgery. In March 2017 I had DIEP flap reconstruction and am very pleased with the results. I chose DIEP flap because I didn't want any foreign materials in my chest and I was told that implants can cause one to feel cold (and I already have cold sensitivity). As someone mentioned earlier; it is critical you have a highly skilled cosmetic surgeon perform the procedure as it does involve micro surgery in order to connect a blood supply to the transported tissue (be sure to interview several doctors before making a final selection).

I had breast cancer in my left breast. Decided to do a trams flap surgery. I have regretted the decision every day since. My breast is great but my stomach has given me trouble. It feels as if it is pushing out from the inside out most of the time. I have swelling almost ever day. I look like a 55 year old that is pregnant. I have no feeling in my stomach or cannot feel anything when I go to the bathroom. I have to physically look to make sure I am done urinating. Would love to have my feeling back so that I could enjoy sex again. Mine was done in 2011 and because the mesh collapsed and I had to have three surgery to remove and add another mess to my stomach hoping it would be better. That is definitely why I have no feeling in most of my body. I do have discomfort in my left side. It is very discouraging can not do hardly anything for long. Have to rest seems like I am tired all the time. Have discomfort in my right side because it seems like it Kinks. I too was told that it would be like I had a tummy tuck and it is not at all like this. Frustrated most of the time.

@jspencer

I had breast cancer in my left breast. Decided to do a trams flap surgery. I have regretted the decision every day since. My breast is great but my stomach has given me trouble. It feels as if it is pushing out from the inside out most of the time. I have swelling almost ever day. I look like a 55 year old that is pregnant. I have no feeling in my stomach or cannot feel anything when I go to the bathroom. I have to physically look to make sure I am done urinating. Would love to have my feeling back so that I could enjoy sex again. Mine was done in 2011 and because the mesh collapsed and I had to have three surgery to remove and add another mess to my stomach hoping it would be better. That is definitely why I have no feeling in most of my body. I do have discomfort in my left side. It is very discouraging can not do hardly anything for long. Have to rest seems like I am tired all the time. Have discomfort in my right side because it seems like it Kinks. I too was told that it would be like I had a tummy tuck and it is not at all like this. Frustrated most of the time.

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I don’t have the same issues you are dealing with, but I have learned a lot about lymphedema since I developed it in my left arm due to my mastectomy/axillary dissection. You may have it in your torso/stomach region (very common after those surgeries) causing your swellings. It causes other problems too but swelling is what people see. Google “Lymphedema Education & Research Network” and “National Lymphedema Network” to find out more. It is manageable. I use active massage sleeves from SolideaUSA because they are more comfortable than traditional compression garments. They have items that would work for your torso/abdomen too. I can somewhat relate to your other issue because unrelated to cancer, but to fix pelvic floor prolapse, I had a hysterectomy (plus tubes and ovaries removed) last summer. The doctor who came in to do the reconstruction put in a mesh mid-urethral sling for stress incontinence prevention. He put it in too tight and I could not urinate at all. I had to learn to self-cath. A month later he went back in for a “revision” ( he cut the sling to loosen it). The reconstruction failed, and the “revision” only helped some. I could only urinate standing up while simultaneously leaning over! Six months later I had the reconstruction redone with a different doc at a nearby large teaching hospital. I still have issues with urinating. Things just don’t work/feel like they used to. Yes, I too have to really pay attention to things because the normal sensations are gone.
I did consider DIEP flap surgery, but I was too scared of any of the other surgeries that used muscle tissue to form the breast mound to even consider them. I kept thinking it would create a different set of problems, which is what seems to have happened to you.
Anyway, good luck. There are a lot of us out here! : )

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