Reconstruction Following Mastectomy - Boston, MA

Thanks for your input. I just went tomy first session andesite e movement group last week, it is nice to find people who are NOT uncomfortable with letting you talk about what you are feeling. I know it is a process, but I feel like this has been going on forever. My implant feels so foreign to me, it's tight, doesn't move, looks aweful. And the look and feel of it affect my whole attitude. Maybe it's supposed to feel like that?, but it doesn't feel right. Thanks again.

You just keep searching for those women who you can really talk to - they are there, and God will put them in your path. Embrace them, and they will help you heal! My physical therapists, and my psychologists have done more for my "foreign body" than anyone. don't give up! First, You need to love yourself and be grateful for what you have been given. and then, you need to make sure you don't have a surgical/medical issue that can be repaired. Get a second opinion, or a third. You go girl!

I am still in the expander stage. I had Cancer only in one breast but chose to have double mastectomy mainly because I was afraid I would run into your issues....one feeling normal and the other so foreign. May I respectfully ask what were your reasons for just the one mastectomy? Most women I know chose just the one but I have never felt comfortable asking them why. I apologize if this is out of line.

Thanks. I have never heard of a PT who specializes in breast reconstruction? How would you find one?

I think I would start with an Oncology Office that does mastectomies and see if they can give you some names of local plastic surgeons. Also, there is probably a support group where you can talk to women who know because of personal experience. Call the breast centers at the hospitals also.

your surgeon and plastic surgeon should have a few PTs they use - they are generally referred to as "Women's Healthcare Rehabilitation" or something similar. Contact a local physical therapy organization to find out who treats lymphedema or pelvic floor issues -those PTs generally specialize, and if you can find someone who specializes in cancer. And don't just settle for someone - keep looking until you find someone who feels right for you. Prayers for your search! Remember that the more knowledge you gain, the more you can pass it along to future patients. You can clear the road for others! You go girl!

I think you intended to send this message to another person. I am not having lymphedema or pelvic floor issues. I had a PT for several months in addition I saw a chiropractor who helped tremendously with arm issues. My issue is concave chest and being pretty flat even with 700cc implants. I have an appointment with PS this afternoon to discuss options.

I also have friends who did not have the issues I have...but I also have friends who have it worse - and they did everything "right". It's just our bodies, and the journey we are on. don't give up, but really work on your patience. I cannot emphasize enough how much I think a could physical therapist could help you with the tightness. search in your area for a PT who specializes in breast cancer - I've had great success with a MFR therapist (myofascial release) because they treat your whole body.

Selenadee: Don't give up. If you read my last couple of posts, I was exactly where you are! The expander is foreign. Mine was as high as my left collar bone when fully filled, ( at 800 cc ), hard and numb. When I had the implant done, it too, was flat and numb and not at all even. It was very difficult to deal with, especially when it began to show pitting, dimpling and a large fold of skin over the top. I was sooo depressed and doubting my choice. But with the support of my PS and the great ladies on this site, I hung in there. 6 days ago, I underwent another surgery using fat injections to " plump up" if you will, the mastectomy breast. It is much fuller, more even and round and has some protrusion like a normal breast. The scar is still there, which MAY fade in time. It still feels foreign though, numb, kind of like it did when the expander was in. It just doesn't feel right or mine? It is also quite hard, but again, all my " girls" tell me with time, it will drop and loosen up. I will post some more photos today after my Oncology appointment. One of the most depressing places EVAH. As we say here in Boston. But I have decided to wear all tye dye today. My daughter makes the most fabulous the dye items in the world! Give the others something fun to look at other than the floor or the one fish that clings to life in that friggin tank!. But hang in there, check out what I shared, we sound much the same! When you need a hug; find one. And if you can't, wrap your arms around yourself, that's why God made them so long !!!

Thank you so much for your supportive words! Sometimes I do feel a bit alone with these problems. I have supportive friends, and a husband who all think I look great, and are happy that I am now cancer free, but none of them have experienced what we cancer survivors have. You were actually so encouraging, that I suddenly got an energy boost, picked up the phone, and called my doctor about a referral to the plastic surgeon. She wanted to wait until my next scan and mammogram in april, but then she will send me to see the ps. So happy! (I live in Finland, and my social security covers for reconstructional surgery after cancer, that's why I have to get a referral from my oncologist first. Then the surgery is almost for free, you only pay for your stay in the hospital and some other small payments) Maybe I will get this process to the end after all! I hate the feeling of the saline in the expander implant, it feels so uncomfortable when bending forwards. So I really hope to get a silicone implant instead. And I also hope there is something the ps can do about the symmetry. All the best to you!

Nanmama: I am new to this as I have just had a bilateral mastectomy 5 weeks ago. I have the tissue expanders in and they are just SO tight! I see that you said that your implants are tight as well. Did you get the saline implants or silicone ones? I was looking forward to that step so my chest would feel softer.

Clarey I got silicone implant. According to my docs, they feel more realistic, last longer, and look better. But I don't have much to compare them with. One thing I learned is that, in my case anyway, they removed so much breast tissue that when they put the implant in, ( after having the expanders in for 12 weeks or so) they put it under my muscle, and because I had no real breast fat or tissue left, there is basically my muscle and just the skin over it. That is why I had so much folding and pitting of the skin and why the breast was flat rather than having any roundness or protrusion. But I had fat grafts two weeks ago and the appearance does look better, but my docs say it will probably have to be repeated again over the next year as only half of the fat grafts usually take? But it still feels very tight, the muscle is tight, so I do PT and stretching at home. It also feels very firm, numb and just not quite mine if that makes sense. The expanders are just aweful, but necessary. I keep saying it feels like someone shoved a grapefruit in there and covered it with skin because I have no real feeling there. It feels kind if like a had novacaine injected in there, but I am hoping it will get better. But I have realized it is a process, a loooonnnngggg process and I am not very patient! Most Nurses aren't when it comes to ourselves being sick. My PS did show me one implant, I believe it was silicone, that was shaped much like a natural breast, tear drop almost shape vs. the flatness of a traditional implant. It did feel softer than the silicone too. But she said that this kind of implant goes over the muscle, right under the skin, and moves around a lot? According to her, lots of woman get this because the shape is better, but end up having it switched to the traditional implant because it moves around so much. Look into what they have to offer, ask for the pros and cons of all, and keep checking with women on the site. They are a huge valuable source of information. Good luck.

Thanks for your reply. I just had my last expansion and I have to say it is by far the worst one get. I guess it is because the expanders are at their capacity. In 4 weeks I will get my implants and I chose silicone that is a teardrop shape but thanks to you I have to find out where my PS is going to place it....I don't want it just under the skin if it's going to move around. I'd rather just so this implant surgery one time. Thanks for your valuable info.

I had the transflap 20 years ago and it was great. I was back to work in 3 weeks. I had a total of 6 surgeries and 8 chemos. This time is with the expander and after 3 months my incision has not healed, still draining and it just plain hurts. It looks awful and I am so tired. This makes no sense. Before 30 limp nodes removed and 3rd stage cancer in 13 nodes. This time stage 1. Not in nodes, found after 3 years of mammograms, ultra sounds, every 3 to 6 months. It was in my milk ducts. I am allergic to metal and told PS before the surgery. She was not concerned. It really itches at the port and 2 weeks ago, the incision had to be redone with 25 stitches. Will find out tomorrow if healed enough to remove stitches. Just today, looked down at my shirt while in grocery store and front of shirt was wet ( soaked). The bandage was not an hour old. If not better soon, I am going to have expander removed and just let it heal. Hope you feel better soon!

Good luck to you as well. You have been through so much and you deserve some peace and healing! I hope your more recent surgery heals soon...

done I hopefully just look like I've had a reduction but I got burnt with a heat pack while in the hospital cause my nerves were severed of course, and had to surgically close up the burns so I have all sorts of scarring. Not the look I was hoping for.. expanding the scars has made them darker in color.. I don't know if they will ever fade and I've heard you cant tattoo over a burn? the biggest mess is along the bottom so hopefully not too noticeable when every thing is in place down the road but sure makes the road a lot longer and harder..so everyone beware of HEAT AND ICE ON THESE MASTECTOMIES

I hate those horizontal scars..i asked my doc to do a wise vertical scar on me so that when I am done

How is your fat grafting Holding now?

It's funny you should ask? I was told by my PS that I would be lucky if half of the fat graft held, and pretty much, it's true? I have a large flat area straight across my breast where the nipple would be and I got some fat back in the upper area where the crease was? I also have about a one once raunch pocket that fell in. I will have to have anger one done, it i have decided to take some time off. Four surgeries in five months came back to kick my butt. I was not prepared for the post trauma of surgery, which surprised me because I am a nurse? But aside from a back surgery, I have never had any surgery so this was a major trauma to my body and soul. Still have good days and bad, but I try to laugh when I can and cry when I have to? I can say that I am jealous of women who have breast implants done for no reason other than for themselves. It doesn't seem fair that we lose our breasts due to cancer and can't get the same results? But, hey, we are alive to talk about it right? But I am freaking out about bathing suit weather??! Take care all

WHEN ARE YOU ABLE TO DO ANOTHER FAT GRAFTING ? AND DID YOU HAVE ANY HARD FAT BUMPS WHILE THEY WERE SETTLING DOWN? ID'D LIKE TO DO AS MUCH FAT AS POSSIBLE AND SMALLER IMPLANTS BUT DONT WANT TO RISK A BUNCH OF FAT NECROSIS EITHER..SUCH TOUGH DECISIONS..THAT DR IN ORLANDO DOES THE CRYO FAT BANKING AND THAT SOUNDS SO MUCH BETTER THAN GOING THRU WITH LIPO SUCTION EACH TIME I WAS TO ADD TO FAT GRAFTING..DID YOUR INSURANCE COVER THE FAT GRAFTING? I HEAR THERE ARE SOME INSURANCE COMPANIES THAT BALK AT THE IDEA OF PAYING FOR LIPO

I had the fat grafting about four months post implant. I received liposuction on my lower belly and the fat was transferred to my breast. At first my surgical breast with the fat graft was larger than my right breast, but my ps said this was because 50% usually absorbs, and mine did. I need to have another graft to fill in a couple of pitting areas and a flat area where my nipple was, but for the most part, it worked out well. I had to wear a light girdle for a few weeks after, but I really did not have much pain. What I would say regarding a larger implant vs all fat injection is with the implant, you are guaranteed to have some volume, with the fat injections, there is no guarantee how much will stay there? I had the implant, then the fat graft over it. Hope that helps. Good luck.

Beth. I panicked for a moment thinking people would think my brother took my breast photos!!! Now I know you mean the sun reflection!! Too funny. But, he and his wife, have been incredibly supportive. I had another reconstructive surgery 6 days ago to help fill out the pitting and folding of skin of my left breast. I will post some photos. It looks much better, doesnt feel any more real, but it looks a lot better which makes me feel better. But i now understand, and have to accept, it is a process; a slow one; but a process. Take care

Oh yes, I meant the sun reflection photo. Too funny but sorry if I alarmed you! ;) 

I wish the recent surgery made your breast feel more real. Maybe more healing time will help? In the meantime, I'm glad the pitting and folding of skin is less noticeable. Looking forward to your photos. Best wishes!