Making that Final Surgery Decision

sanchez22

Hi to everyone. I am new to the group. I was diagnosed early in the year with ER and PR - and HER2 + with lymph node involvement breast cancer. (stage 3A). I have completed my last treatment about 4 weeks ago and trying to mentally prepare for the surgery. I am at the point where I need to make a decision but having a bit of a struggle making the final choice as to whether I choose the single or double mastectomy. All along I was planning to have the single breast removed that was affected, with the flap surgery, however, I recently started second guessing whether I should do the double mastectomy. My main concern and question is am I more at risk because of my cancer type for something to develop on the other side. I am 51, and no family history. This sort of hit me out of left field. Being HER2 positive and ER/PR negative; does that increase my chances of something developing on the other side? My doctors have been great but I feel like I just need a little more guidance in terms of my risk and I know they can't tell me what to do as it's a personal choice. I know the risk is lower generally but I struggle with removing what is now healthy tissue; but I also don't want to go through this again. I just want to know if what I have puts me more at risk and if I should consider the double mastectomy more. Any input would help. Thank you.

greytdog3

I cannot comment on the specific type of cancer you have, but I had 2 surgeries this spring trying to get clean/ clear margins with what was DCIS. I decided to have a mastectomy rather than try again to get the margins we needed. After some discussion with my husband I decided to do a bilateral. When the pathology report came back, I had DCIS in the non affected breast. I was so thankful that I had both of them done, because I would have been right back where I started.

snm

@sanchez22 I'm sorry to hear about your tough decision and situation. I went with BMX with implant reconstruction. I didn't qualify for diep recon. I had high grade DCIS on left only but went ahead and did bilateral mastectomy because I didn't want to deal with this again though my breast surgeon said risk of it coming back on the good side was very low. Plus I wanted breasts to look symmetrical. My path did show 1.3 mm focus of invasive cancer. I did not do radiation or chemo.

I know have 3D nipple tattoos and decorative tattoos on my boobies. They look great but I do miss not having sensation in them like before.

marrilioon

Hi Sanchez22 , first of all, I want to acknowledge how overwhelming this decision must feel. It’s completely normal to second-guess yourself when it comes to choosing between a single or double mastectomy. From what you’ve described—HER2 positive and ER/PR negative, with no family history—the risk of cancer developing in the other breast is generally lower, but it’s understandable to worry about future recurrence. Many women in your situation consider factors like peace of mind, recovery time, and long-term quality of life when deciding. Ultimately, the decision is deeply personal, and it’s okay to take your time, seek multiple opinions, and even discuss with a genetic counselor if that helps. Wishing you strength and clarity as you make the choice that feels right for you.

mwolhuck

Hi Sanchez22. My situation is almost identical to yours. I'm also 51 with stage 2, grade 3 IDC her2+, ER & PR-, and 2 impacted lymph nodes. No family history, in excellent health, and was totally blindsided by my diagnosis in early June. I had my last round of tchp chemotherapy mid Oct, and was fortunate to have a complete response. I had decided from the beginning that I wanted just a unilateral mastectomy. I felt a lot of grief about losing even one breast. When trying to decide what to do, especially regarding reconstruction, which sounds like it will be more challenging after unilateral mastectomy, I talked to several women and multiple Dr's and got different opinions from all of them. The best advice I received was to go with what felt right to me and my values. For what it's worth, only one member of my oncology team suggested a double mastectomy was a good choice for me, and that was only for the purpose of improved symmetry with reconstruction, not to reduce recurrence. All the others recommended the unilateral.

I had my surgery 10 days ago. I was fortunate to be a candidate for a nipple sparing mastectomy. They placed a tissue expander during the surgery, and it was so nice to wake up with part of my own breast still there, and my own left breast unimproved. Still have radiation and reconstruction to face. But I'm happy with my surgery decision. Hope this helps.

time28

I appreciate seeing these posts. Over the last 4 months I have had two mammograms, an ultrasound, a biopsy, an MRI, and then two more biopsies. I have three IDC Grade 1 ER/PR+ HER2- tumors, one 1.5 cm, one 1.1 cm and one microscopic, all in the left breast. Right breast is clear. No signs of lymph invasion on the contrast MRI. I had genetic testing and have no BC genes. I had a second meeting with the surgeon yesterday. She recommends a left Mx with sentinel node biopsy. If the node biopsy were positive I would have to have radiation. I had a PS consult recently, I liked him a lot and the photos of his work look great. He said I am a good candidate for a DIEP flap reconstruction. I did much research on that procedure, it is a LOT, a big surgery with a long recovery as far as I can tell. I have researched the other options as well, implant reconstruction or going flat. I am so conflicted about what to do. I’m a physically active person (equestrian) and would like a quick return to my life, with the fewest surgeries possible. That argues for getting AFC after the mastectomy—I could be doing light activities at two weeks and back to riding by 4 weeks. But I would be asymmetrical and need a prosthetic. I don’t know if I would adjust well to that, maybe? I could get a DMx for symmetry and go flat — but that’s a bigger surgery, with removal of a healthy breast which is disturbing to me. Implant reconstruction is an option, but I worry about the problems that can develop with implants. How does a person make this kind of decision and get comfortable with it? I even made a pros/cons table, but I still cannot settle on a choice. I am going to get a second opinion from a top cancer care organization in my area, to see if they have any reconstructive options I have not heard yet or other treatment recommendations. But knowing me, I might still struggle to decide after that. I’d love to hear from others who have navigated this—it just seems so difficult.

missymoo

I chose to go BMX a little over a year ago. My cancer was missed in my routine mammogram literally months before. I probably should have found it earlier myself, but life got "lifey" and I got complacent with years of normal mammograms. My follow up mammogram showed a large mass, but for reasons no one seems to be able to explain, I waited over 2 weeks for an ultrasound which resulted in an immediate biopsy. By the time I saw the surgeon, a lumpectomy was not an option. I had 48 hours to decide whether to remove the just the cancerous breast or both. I will be honest, my faith in the diagnostics was sitting pretty much at nil and the prospect of having to rely on the same facility in the future didn't sit well either. I know that removing the second breast did not remove the threat of recurrent cancer, but I mentally couldn't face the thought of potentially having to do a repeat surgery sometime down the road. Luckily there were clean margins and no spread to the lymph nodes. The pathology showed no cancer in the right breast but there were changes. Was it the right decision medically - probably not, but it was right decision for me.