Mayo Clinic Connect
Being treated for breast cancer, having a mastectomy and was wondering what people did for reconstruction?
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 re-read your post and wanted to relate what kinds of sensations I was left with after my double mastectomy. (The mastectomy itself wasn’t hard, and not even particularly painful. After I was home I didn’t even need to take Tylenol. I did end up with one drain for six weeks, which was frustrating. The surgeon removed it only because six weeks was the cutoff for him and he said I would likely form a seroma— which I didn’t… I think the drain could have been removed a month earlier with no issues.) I have feelings over my entire chest area, including around my scars. There have been a few times I’ve had an itching on one or both sides, which I just gently rub because I never scratch that area anymore— I don’t want to damage the skin. Especially my irradiated side. I do have an area on my torso just under my armpit without much sensation on my right side, and on my left side (this is the side that had cancer, and I also had an axillary dissection with 20 lymph nodes removed), my arm pit, a little bit under my armpit, and the back side of my upper left arm have no feeling at all. I have to actually watch when I apply deodorant on that side to see if It’s getting where I want to put it LOL.
Liked by cindylb
As far as feeling in the mastectomy or armpit area….I fared pretty well. I was lucky with few lymph nodes removed. There are lots of nerves in your armpit area and I suppose they get messed up some during surgery, causing either pain or numbness. My chest wall has no pain or tightness. I worked very hard with my massage therapist and PT to get the best recovery possible. I have complete movement of my arms and chest and no pain (thank goodness). I do have some areas that feel different and have little sensation or different. Sometimes, even now I get odd itching across my scar line and I'm hopeful it will go away. But, I also have some weird rash that's going on bugging me for about 2 years. We haven't figured it out yet…that could be the itching. Comes and goes.
Liked by chamisa
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.
I just hate that you are having issues for so long. Back in 2004 I made the decision to have a mastectomy with reconstruction. But I just didn't feel right about the tram flap. I cannot pinpoint why, but it troubled me, so I decided to research other options. At the time I was a member of an online support community on FORCE (Facing Our Risk of Cancer Empowered). After much discussion, research, and recommendations from the folks of the FORCE group, I chose to travel to New Orleans to meet with two different doctors who were doing a relatively new (at least I had never heard of it) reconstructive procedure named DIEP). I chose Dr. Scott Sullivan and Dr. Frank DellaCroce at the Center for Restorative Breast Surgery in New Orleans (www.breastcenter.com). I highly recommend this fine group of doctors. I have never ever regretted this decision and to this day still believe I made the best decision of my life. I truly believe you won't be disappointed. It's worth investigating and even going for an interview visit if you so choose. I don't want you to have to go through this any longer.
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.
My breast cancer was invasive ductal in the left breast. I chose double mastectomy with reconstruction with expanding implants. An MRI showed an area in the right breast they wanted to check prior to surgery. However I decided I had chosen double mastectomy and did not do additional testing. Blessed be to god I chose the double mastectomy. A second cancer (invasive lobular) was found in the right breast. Borders were wide and lymph nodes clear. No chemo or radiation needed. 6 months after surgery I had my second surgery to replace the expanding implants with regular implants. I am very pleased with the results. I have a possible final surgery where Oscar Manrique (my plastic surgeon) may perform liposuction to add my own fat around the implants (to add fullness). I did NOT do nipple saving. I believe 10-15 percent become necrotic. I chose NoT to take the chance of losing the reconstruction due to a possible nipple saving. I will be getting tattoos in the future. I feel blessed to have done my surgery at mayo. My surgeon, the nurses the care team and my plastic surgeon have been beyond wonderful!! My reconstruction simply looks like a breast lift would look (minus the nipples). I will be praying for you. So many decisions to make. Hugs.
Liked by Colleen Young, Connect Director, cindylb
Hi @kruzin – I don't know if I'm too late to post my experience as you may have already gone ahead and done your surgery. But, if not,
I wanted to share my information with you, if it might help you.
I just had my bilateral mastectomy with reconstruction less than a month ago. I had biopsies in both breasts. I learned one breast had cancer the other tested out benign. The diseased breast had several large masses that all tested malignant and a lumpectomy was not deemed 'ideal' due to the amount of tissue removal involved so a full mastectomy was indicated for that one breast.
I am a research nut and did copious research on the subject and also had 2 consults with the breast surgeon and 2 with the plastic surgeon before deciding. I also spoke with my spouse, 2 children and daughter-in-law who's a nurse. During my weeks of contemplation and research, I subscribed to MedScape and read many of their published medical studies on mastectomy and breast cancer, including survival rates, surgery options, decisions made by patients who chose a particular option and comments from nurses and surgeons. I also searched every article I could on the internet and read many patients' comments.
In the end, I decided to remove both breasts and do immediate implant placement in both. I knew I wanted reconstruction as I would be too depressed otherwise. Mental health is equally as important as physical health and should be weighed as carefully, in my opinion.
My reasoning for doing a bilateral mastectomy and immediate reconstruction rather than just doing one breast is as follows:
* If both were done at once, the plastic surgeon would be able to make both breasts match closely, utilizing the new Alloderm artificial skin and identical silicone breast implants.
* I currently have excellent insurance and who knows what I may have years from now if the healthy, remaining breast were to develop something.
* I will never be younger than I am now, and my chance of a good recovery should be better now than years down the road (if cancer were to develop again).
* I would have one time off from work, one (longer) procedure day, one hospitalization, one anesthesia, and one recovery.
* Both breast gone = no further mammos, MRI's, no chemo, no radiation, (hopefully??) and no further worry about the other shoe dropping with the remaining 'healthy' breast developing something down the road. I have read how women who have cancer in one breast must go in and have any remaining breast tissue looked at and poked and prodded yearly for the rest of their lives. I wanted to avoid that if I could. Who needs more stress and worry?
* In addition, my healthy breast had been banged up pretty good with a stereotactic biopsy and had developed a large, hard lump and depression at the point of entry. I felt that it was now injured and may be more susceptible to getting cancer (gut feeling) which further directed me to going forward with both mastectomies.
All-in-all, I am currently glad I chose as I did, however I am still in recovery and may come to a different conclusion later, but I'm hoping for the best!
Liked by Kanaaz Pereira, Connect Moderator
I had my surgery 2011. Had a trams flap just because I would like to have my own body materials than anything foreign in my body but that is not what happened. The Breast tissue died. I had to have implant anyway. My breast is actually okay but my stomach that they said was suppose to work out like a tummy tuck. The mesh collapsed and I had to have it replaced two more time from the fist one. I since still feel like my stomach is pushing out. I swell if I stand on my feet like I am 9 months pregnant. The mesh kinks and I haven't felt good since I had this. I also don't have feeling from my waist down since the opened it so many times. So of course I always enjoyed bedroom time but now no feeling. I just wandered if anyone had this experience. I should have just do that the implant. Thanks for the reply.
Thank you so much for taking time with this info. I haven't had surgery yet still undergoing chemotherapy. I actually seeing my surgeon next week, and by choice I've decided also to have a bilateral. I feel also the no worry is better for your mental health. I'm still in limbo for reconstruction.. If I do I'm waiting till after radiation, only because a friend of mine did it first and the radiation ruined what she did for reconstruction. I don't know if you have to undergo any other treatments, but chemo for me hasn't been to bad. I need 16 treatments total, and have7 more to go. Just feel tired at times, and I gained wait from the steroids. My surgery will be in October , and all this information has helped so much, and if you have any questions I should ask my surgeon would help, I've been making a list but since you been there all the help is appreciated.. thanks again you stay strong and healthy.
Hi @kruzin, fortunately, I did not have to have radiation or chemo prior to surgery. I am not sure why some women do and some do not. It may be that I expressed that I did not want to do either treatment unless it was critical that I did. But I am not sure that was the only reason. I do know that they said if I only had a large lumpectomy (it would have been nearly half my breast) rather than a mastectomy that I would indeed be having radiation afterwards, but if I had the mastectomy I would not have to.
I do know that studies have shown that there is a much higher possibility of capsular contraction if you have breast implants and then have radiation treatments following the mastectomy. In my case, I wanted immediate reconstruction because I looked at many online photos of women who waited and were left with a big bag of empty skin that would start to grow together.
They could be fitted with an expandable bag (TE or tissue expander) to open the space back up to allow for a future implant, but that just means you will still have a foreign body in there that you have to deal with, tubes hanging out, constant pain as you force expansion, many weeks or months of waiting while you re-expand the pocket, irregularly shaped pockets, possibilities of infection (open wounds there) and a delay on just getting your life back. I didn't know why I would want to put myself through that if I didn't have to.
I do know that capsular contraction around the new breast implant can happen any time even with just a regular breast implant done for aesthetic reasons (non cancer), but knowing how to massage and keep the pocket open, and to remember to continue to take anti-inflammatories (ibuprofen, etc.) for a while, will help keep the pocket open and reduce this possibility.
I do know that many of the breast implant manufacturers are giving a 'warranty' in that if you do have capsular contraction, they will replace the implant for free. You should ask the doctor about that.
Meanwhile, I'm sitting here 3 1/2 weeks out from surgery with two very nice looking, matching full breasts. I either wear a supportive tight bra or if at home, I wrap my chest with a wide elastic bandage for compression and comfort. Now each breast sports a 5" lateral incision from the nipple to the armpit that is still taped with surgical tape, but it is no trouble. I have tolerable pain and sensitivity but can go about my life (mostly). I too have gained weight since I had to go off my female replacement hormones 2 months ago, but in another week will be cleared to go to exercise class and get some activity back in my life.
I was lucky to get a really good doctor team for the initial cancer surgery and another good one for the plastic surgery immediately following. I did ask for and receive a nipple sparing and skin sparing surgery. So far, so good. Be sure and ask if you can have that too. Let them know if that is important to you. I hope that helps. Knowledge is power. Good luck!
Liked by Lisa Lucier
Thank you for taking the time to respond. It's difficult enough to get a scary diagnoses never mind think of everything else that goes along with it. You decided at the time which probably was the right approach, now I hope somebody can help you with your situation. You have definitely helped me already, and thank you for that. I find it hard in my area to talk to people that have been through this and this site has really helped. Try posting on main page.. you stay strong and keep up on your path to good health.
Liked by Kanaaz Pereira, Connect Moderator, Lisa Lucier
I have had bilateral breast cancer and just found out I have the CHEK2 gene mutation and know in my mind that the best way I can go now is prophylactic mastectomy with reconstruction. I am struggling with this. I would like to hear from others about their experiences…what they went through making this decision and then if they were pleased with their decision and how they feel now about it. I would also like to know if they chose not to take this course and how they feel about that decision now.
Sandy, I can only tell you what my surgeon advised me. I was ready to have mastectomy and surgeon told me no as even with mastectomy, women can still get breast cancer as they cannot remove all tissue. For this reason, I was given partial mastectomy. She also advised me that with full mastectomy, due to all the nerves running through that women oftentimes would have nerve pain for a lifetime. Ask questions from different specialists and go for second opinions with surgeons. My first surgeon was all ready to just go for full mastectomies and I am glad that I opted for the second advice, but it is purely your choice. All the best to you.
Liked by elizm
Sandy@dyr, where do I begin? Had stage 2 breast cancer left 27 years ago. Had lumpectomy, chemo, rad, tamoxifen. May 2019 diagnosed with DCIS right breast multifocal. Making the decision about reconstruction was the toughest decision i have ever made. For two weeks I waffled back and forth daily about what to do! The more people I spoke with, the more confused I got. Final decision was immediate implant( was open to expander then implant). Plastic surgeon felt he could do immediate implant. At 2 weeks post op, plastic surgeon said”it’s too big. It has to come out’”. It was flat but twice the diameter of other breast( tissue tension may have caused it to flatten). I did not like the look nor the feel of the implant( felt like a board on my chest). Had implant removed and had DIEP flap done. It looks like a breast. DIEP flap surgery is big surgery but not really painful. Much happier with flap. Also, when I finish with “nip and tuck” surgery(outpatient) I will never need another surgery. Implants will need to be changed periodically. I wish you good luck with whatever surgery you choose. And, I wish you an uncomplicated recovery and return to normal activities.
Interesting you mention nerves. My cousin has had bilateral mastectomy‘s and I asked her if she has any pain or anything and she said no they cut the nerves when they did it and she has no discomfort now. The surgeon I talk to yesterday didn’t say anything about pain from nerves. I am not a candidate for nipple sparing surgery nor flap surgery. I am 69 and my breasts are very different from each other and so the surgeon said that if I did nipple sparing that there was no way that the plastic surgeon could make them both at the same level. Also the flap surgery requires extensive hours under anesthesia and my age is against me here. I also do not like the idea of being under anesthesia for such a long period of time. That in itself has its own issues. So what it appears to be right now is that I would go with skin sparing mastectomy with implants. I do not like the idea of implants at all. She said that I would not be a candidate for the implant under my skin rather than under my muscle because I’ve had radiation which damages the skin . I know that I have to have the surgery but I am also agonizing over it. The doctor did give me a plastic surgeons name and I am going to make an appointment with him and see what he says. Thanks for your input. If you think of anything else please let me know.
Hi @sandyjr @betsyk and @trixie1313, you'll notice that I moved your messages to this existing discussion of the same name "Mastectomy and breast reconstruction pros and cons?" I did this so you can connect with other members who have faced these decisions before you. Click VIEW & REPLY to read through the past messages and experiences.
Hi Sandy, I was diagnosed with TNBC in Feb 2016; stage 1c but grade 3 in right breast (no lymph node involvement). Because of the aggressive nature of the tumor I chose to have a double mastectomy but was a good candidate for nipple sparing due to the smaller size & location of the tumor. I had tissue expanders placed during that surgery and then had to wait a year before I was cleared for reconstruction (after chemo & a clear PET scan at the 1 year mark). I interviewed two cosmetic surgeons and elected to go with DIEP flap surgery rather than implants. One of the surgeons told me implants can cause some women to feel cold all the time and I already had problems with that. I also didn't want to have anything foreign in my body. 2 1/2 years down the road I am still happy with my decision. I do have some hardened fatty tissue along the scar line on the lower right but the reconstructed "breasts" are warm & soft. The only real dissatisfaction I have is the numbness, not only from the mastectomies, but also across my abdomen where they took the fat to create the breast mounds.
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