Bilateral Mastectomy or not

Thank you so much! I am awaiting genetics and some other tests. I talk to the surgeon on 1/22/21.
I do have a lot of different things to consider. I am grateful for this group!

I did not have a mastectomy but I did have my breast implants removed. This left me flat as a board with a ton of scars. Best decision I ever made for my health. I am not ashamed of the scaring and still feel great about myself and decision. Sending love to get you through this tough decision you are faced with.

I will answer for myself and sister who does not follow this forum.

I had Stage 2 DCIS so my treatment plan will be different then yours. I had lumpectomy, chemo and radiation. Diagnosed in 2018.

My sister diagnosis is similar to yours. She was diagnosed with Stage 0 DCIS in Nov 2020, Hers was found early during routine mammogram, had a biopsy, follow up appt at Mayo Breast clinic and given the choice to monitor or surgery. She chose surgery, area removed and margins were clear. Nothing new was found and after surgery she had follow up at Breast Clinic and will be taking AIs and monitored in future. No chemo or radiation required.

Just a warning, after surgery the drs scheduled appointments with radiation and other drs. She became concern thinking they found something they had not told her. It turned out they had scheduled the appointment just in case they were needed. Once pathology reports came back, those appts were cancelled.

I had genetic testing after my diagonals and no reason to suspect cancer was due to genetic, just coincident that both me and two sister ended up with breast cancer. All three of us selected lumpectomy.

I think the most stressful time was right after diagnosis, once a treatment plan is established my stress level was reduced.

Prepare questions prior to your surgery appointment and if possible bring someone with for support or another set of ears to listen to what drs tell you.

Hope you the best

Laurie

I’m a 0 stage and am planning on double mastectomy in June due to radiation that I received many years ago for treatment of Hodgkins that is causing DCIS. I’m 64. Scary

@jocelynk
Don't be frightened. I had to have one breast with partial mastectomy so the other side was done as well. I went from about an F to an A. You'll have drains for a little bit but once those are out, you'll be more comfortable. It was a bit depressing at first losing part of my body but I don't really look back anymore - it has all worked out just fine.

Thanks for the encouraging words. I appreciate it very much.

Did you do the reduction of the other side at the same time as the partial mastectomy?

That's every woman's decision. I didn't, but eventually opted to have my other breast removed for symmetry, as I wanted to get rid of the silicone add-on and spend the rest of my days as a "flattie." I never regretted it, but that's just me. Something to think about perhaps. Much love!

violet, I personally would not do a mastectomy in my breast that is not showing cancer. Do a lot of ultra sounds of that breast, as they are more accurate than mammography. Make sure when they do the ultrasounds that they also do the armpits where the lymph nodes are. When I had a lumpectomy on my left breast, the surgeon found a tiny group of satellite cancer cells close to the ones that they actually saw. They wanted to give me months of radiation, which I refused. I did not want to be sick from radiation, so I took a chance, and only took my aromatase inhibitor. Its been 3 years since then, and I have had no signs of cancer again. I just took a chance, and it worked fine. I just didn't want to be sick from radiation, and apparently the aromatase inhibitor and ultra sounds/mammagrams have been fine. It' sush a personal decision, but my attitude is, "If it ain't broke, don't fix it." LoriRenee1

@johnsoncs1
Yes - the partial mastectomy took me from about an "F" down to an "A." The other breast was reduced to match. Keep in mind, if you have radiation following surgery it can change your breast a little bit...I now have a nipple that points outward (!!!), but I'm lucky in that I don't have loss of sensation in either breast or nipples. It was explained to me by the breast surgeon that they are looking doing partial mastectomies rather than full mastectomies now as having too much scarring and cutting through nerves with the full mastectomies so that women that have full mastectomy can not only lose sensation but also have nerve pain for a lifetime. I did have nerve pain for a while while the nerves were regrowing but that is all gone now. The scarring is mostly gone now so that I just have a little bit around one nipple, but continue to use arnica or calendula creams on it and that is starting to fade now. Prior to all of this (after my first surgery of lumpectomy), I asked for a breast MRI which found a secondary neuroendocrine tumor on the opposite side of the same breast as the invasive ductal cancer. I think the surgery lasted about 7 1/2 hours as with the affected breast they have to reshape; the unaffected breast is much simpler to do. If you don't opt for the second side being done, you can always get a prosthetic bra. Some women find being off balance by leaving the one side. This is really a personal decision that only you can make. All I can tell you is that I have no regrets. I hope this helps.