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Being treated for breast cancer, having a mastectomy and was wondering what people did for reconstruction?
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.
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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.
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.
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.
I urge you to at the very least talk with them. Best of luck and keep us posted.
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!
Hi I am debating nipple sparing double Mastectomy. How are you recovering are you happy with your decision almost a year and a half later? I loved all the points you made and I have similar thoughts and beliefs, I am 42 stage one IDC.
Be sure to talk with your oncologist and surgeon regarding mastectomy versus lumpectomy for a Stage 1. I was ready to go with bilateral mastectomies for my Stage 2c infiltrating ductal ca and neuroendocrine ca (2nd tumor), but my surgeon mentioned minds are being changed now since even with full mastectomies, all breast tissue cannot be taken out completely and patients can still wind up with breast cancer. In addition, due to the amount of nerves being cut, sometimes women will have nerve pain for the rest of their lives (again, possibility). We went with partial mastectomies and I'm lucky that I've had some nerve pain but that has gone away. I'm not telling you any of this to frighten you, but just to advise you to look at all aspects prior to any surgery. It is a very personal choice and only you can make. By the way, my nipples came through find and the scars are starting to subside. All the best in your decision making and your future health.
Hi thanks for the information, I have never heard of partial Masectomy what is that? Did you do reconstruction? I am really having a hard time debating all the options and figuring out what to do. I get genetic testing back early next week everyone on my Dads immediate side of the family had cancer and 3 people have died from it, I am most likely at risk.
Partial mastectomy is lumpectomy. I think you should wait until you get your genetic test results before making any decisions. I had cancer in both breasts at different times and had lumpectomies for both then found out after genetic testing after the second cancer I had the CHEK2 mutation. If I had known that after the first occurrence, I would have opted for bilateral mastectomy the second time. Yes, you can get breast cancer after mastectomy, but your chances are much reduced…90-95% that it will not happen. There is way too much to think about and wonder about. If researching on the computer, stick with good sights like Mayo and Cleveland Clinic and Johns Hopkins etc. You can really get messed up going to unofficial sights.
I was quite large breasted and since lumpectomies were on two sides of one breast, it would leave me quite misshapen so a considerable amount of breast tissue was removed and then had to be reshaped leaving me about a size A or a bit smaller. Speak to your breast surgeon about options and if you're not comfortable with that surgeon, go to another for a second opinion. The first surgeon I went to was pretty much of the mind of doing only mastectomies on women as she was a general surgeon. The surgeon I went to next strictly saw women with breast cancer.
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