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Wondering if anyone is on this category
Hi @jodymattinen, welcome to Connect.
Fellow members @corinneberg @ladylawdawg @elsie37 @doyoga and @casualobserver may be able to share their experiences about prophylactic mastectomy with you. You may also be interested in these discussions:
– Anyone dealing with Atypical Ductal Hyperplasia (ADH)? https://connect.mayoclinic.org/discussion/anyone-dealing-with-atypical-ductal-hyperplasia-adh/
– ATM Gene Mutation and Care https://connect.mayoclinic.org/discussion/atm-gene-mutation-and-care
– High Risk Mutation (ie. BRCA, ATM, RAD51D) https://connect.mayoclinic.org/discussion/high-risk-mutation-ie-brca-atm-rad51d/
– High risk, NOT from BRCA but from typia, such as ALH, ADH, LCIS https://connect.mayoclinic.org/discussion/high-risk-not-from-brca-but-from-typia-such-as-alh-adh-lcis/
I'm glad you started a discussion specific to choosing whether or not to have a preventative double mastectomy (prophylactic bilateral mastectomy). Have you already had surgery or are you currently considering it?
The only information I can give is my own. When I had breast cancer at 38, and a doctor who was a friend said “with your genetics, I would get a double mastectomy and pray to be done with it”. I asked my surgeon if we could do this and was told we don’t do that anymore. Being uneducated and trusting my doctor knew best, I agreed to a large lumpectomy that scraped the tumor off of my chest wall.
Fast forward 15 years, geez I wish I had taken the time to research all of that, but hindsight is always 20/20, and I wish I could go back and demand that bi-lateral mastectomy. Now that it has shown up elsewhere, they say a mastectomy won’t stop it. So I still have these scarred and lopsided, painful breasts. I count my daily blessings of being alive, and I don’t dwell on it much. My situation is different from yours, but this is my story, and maybe it helps.
Whatever decision you make, please get fully informed maybe a second or third opinion, read research, whatever will make you feel you can live with your choice. One of the Mayo doctors told us “the only good decision is an informed decision” and I believe it!
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@auntieoakley Even with mastectomy, there is residual tissue whereupon you can still get breast cancer, unfortunately. I've been working with my physical therapist the last couple of weeks due to cording, but have also had more pain in the breast and fullness. She worked on lymphatic system today around my axilla, breast to remove some of the fluid. Part of the pain is from fibrotic tissue from breast surgeries, past seromas, and radiation effect. I'm being sent now to have a custom fit bra with inserts which the PT believes will help with the softening up the fibrosis and then help with the pain. While I don't know where your pain is coming from, perhaps a physical therapist with knowledge of breast surgeries and lymphedema may be able to help you.
Hello @jodymattinen. My story is included in the link Colleen provided “High Risk Mutation (BRCA)”. In short, I have the BRCA 1 and BRCA 2 gene mutation. This was not discovered until I had breast cancer, so preventative bi-lateral mastectomy was not on my radar. However, since I have the gene mutations, the mastectomy had to be done following chemo, as well as a hysterectomy. My daughter tested positive on the BRCA 1, so she knew she would eventually face the decision on the mastectomy and hysterectomy (she is 31 yr old). She did not have children yet, so understandably she wanted to wait. Unfortunately, last month she was diagnosed with TNBC and is undergoing chemo, them bi-lateral mastectomy. She will also have a hysterectomy before age 40. Because of the positive genetic testing results, she was watched very closely (alternating mammogram and MRI every 6 months). This was caught very early on the MRI.
I’m not sure why you are asking about preventative mastectomy, but it may help knowing there are methods of keeping a close watch if you are BRCA 1 or BRCA 2 positive.
Preventative mastectomy is a difficult decision that specialists at a breast health center can advise you on your options. Best wishes to you.
I understand about the residual tissue now, which I didn’t really understand at the time. I have seen a physical therapist and of course the nerve damage medicine helps too. But the heavy scarring is an issue as well, mostly when I ride. I use a bra that is so tight nothing can move. Hahaha. I really do choose not to dwell on it and enjoy my days. I just wanted to share my story and add an encouragement to get informed. Thank you for being such an amazing person, I see you all over connect sharing your journey. I really do admire that! If it helps even one other person, it is a gift.
I'm not in that category but in a 'similar' category. When I was first diagnosed I was a Stage 0 cancer (maybe I'd get invasive cancer, maybe not). Two years later I had invasive cancer, but with lots of careful follow up on my part I caught my cancer at Stage 1. If I could go back in time I would have removed my breasts at the Stage 0 pre cancer stage and saved myself the worry and extra concern about recurrence. But, I didn't know what would happen and neither did my doctors. It could have been a one time thing and resolved. If you decide to wait I think the most important thing is to be really, really, really diligent about follow ups and make sure you trust your doctors, understand your tests and do lots of research and outreach. I am glad for all the time I spent monitoring my situation because I was able to catch the cancer early. Hugs and hopes you're one of the lucky ones who won't even get invasive cancer!
I am having surgery the beginning of september.
Thank you. I appreciate your feedback. I will also pray for you.
Thank you for your comment. I really appreciate it.
@jodymattinen I was disappointed in 2016 with stage 4 breast cancer, 41 years old tested positive for the gene and decided to have a doubt masectomy with no reconstruction. I am now metastatic in lungs, bones and brain.
My sister then was tested for the gene and was positive. She does not have cancer, but she elected to do a preventive double masectomy with reconstruction. She is Very happy. Knowing that she is able to reduce risk is a mental life saver for her. Sometimes she wishes she didnt have reconstruction. The reconstruction is multiple surgeries. But they look good now and she is happy.
Hi @lynniesf, welcome to Mayo Clinic Connect. Wow, you and your sister really have quite the story. Am I understanding correctly that you both tested positive for having genetic risk and you both elected to have preventative mastectomies? She remains cancer-free, but you were diagnosed with stage 4 breast cancer in 2016. Is that correct?
Yes you got that correct. I have metastatic disease now in bones, lung and brain. I am on active IV chemo. She is my biggest support.
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