Recurrence after bilat mastectomy?

Jada, I don't want to influence you, you need to make your decision about tamoxifen based on your own research and doctor discussions. I would lean towards taking it but it was never an option or decision I had much choice in. Tough call, but at this point I want everything that will possibly help keep this crap from coming back. I am lucky and have had very little side effect from tamoxifen. Everyone is different though and we have to do whats right ourselves. Hope your recovery is going well.

I really appreciate you sharing your story. I too had a bilateral mastectomy and was having trouble understanding what you were saying. I thought how could you have a recurrence in the breast if you had a bilateral mastectomy, but then when you said it's impossible for surgeons to get every single breast cell, I understood completely. It took me about 6 weeks to start the Tamoxifen because I was dragging my feet, but I'm glad I did, especially if there is any chance of a recurrence. And mine too was multi-focal with 7 tumors in the left breast and 1 tumor in the right breast and both nipples involved. Yeah, I think it's a good idea that I stay on the Tamoxifen.

Thank you again for sharing. I'm sure you're helping women (like me!) realize the importance of taking the hormone therapy.

I agree slmdavidson, we've already been on the bad side of the percentages at least once. I really hope to be on the good side for a while. Good luck Jada. I hope your side effects are minimal.

I am braca2 positive and have an extremely strong family history of breast cancer. I had bilateral mastectomy 10 years ago I was 29 when I was diognosed. My cancer was stage 0 DCIbut bc of the braca2 and family history I had really radical surgeries include hysterectomy, but no chemo or rad, or tomax. I have had a couple lumps over the last 10 years that based on ultrasound were determined to be scar tissue, but they haven't been biopsies. Over the last year or so I have started to have a lot pain in my armpit area and a few mo this ago I noticed another lump on my breast. I just assumed it was more scar tissue and have kind of ignored it. But the pain in my armpit is getting more frequent and more uncomfortable. After reading all your post I'm a little concerned that it may not be scar tissue and the pain in armpi might be a sign of it being in my lymph nodes too. I have a lot of medical issues and I just sick of dr and dr bills so I avoided going back in for this lump. I know how stupid that is. My mom had BC twice and passed away from colon cancer. All related to the braca2 mutation. But I just don't want to waste to the time and money to just hear it is scar tissue again. PLus it sort for feels like the drs roll their eyes when I have every lump checked. HAs anyone else had pain in their armpit? The lump is on my actual breast breast though.

THanks for your input in ad

I was worried about "crying wolf" because my former MO was such an ass, told me I was not at risk for recurrence, and was annoyed when I was concerned about a lump (and I was one to rarely call). When I had current MO (who is awesome and caring) check a lump that turned out to be scar tissue, I expressed concern abut not wanting to call for every little lump. He put down his pen, looked me square in the eye and said, "I would rather you call me every week about a lump than for you to ever ignore one, and I hope all lumps we asses are completely benign." That took so much anxiety away about calling. For sure get checked out. If your doctor rolls his/her eyes, find a new one. YOU are too important to have any concern dismissed.

thanks ladies. I called the dr today and I have an apt tomorrow with an ultrasound. It crazy bc long before I had cancer my dr in my hometown was having checked every year and doing mri every other year bc he was so set on catching it earlier. And bc of my braca and my family history (my great grandmother, my grandmother, mother, both my mom’s sisters, and 3 cousins all had BC at least once before 40) so he was super careful about it but now I live in a small town and the dr here after I have had BC isn’t worried at all. So frustrating. Thanks for the push.

I had assumed that the same thing. It seemed logical. I mean how could you get breast cancer again if you no longer had breasts?

Apparently it's more common then what you would think.

I had my radical bilateral mastectomy January of 2014 and reconstruction March of 2014. May of 2018 they had found three cancerous tumors which had grown in the scar tissue.

Go figure.

I had those removed and then they found lymph nodes in my lungs that were growing exponentially. So then I had those removed from my lungs this past November.

Sorry so many are in this boat. I agree that is much more common than they'd lead us to believe.

I am sorry you are dealing with this. I hope they get you in soon. Hopefully it is something benign. If it is malignant, there are tons of treatments left. If it is ER positive, they often start with something like Ibrance (or Ibrance used in combination with something else). Keep us posted!

Wow buttonsmachine you have had a tough tough time. I had the scan and biopsy today and there was an abscess. So good news it wasn’t a big solid tumour - but, they are puzzled about why there’d be an abscess there so are looking for tumour cells. Results in a week. Hoping it’s a weird anomaly. Thanks for choking on - and you KBee

Laura - This has been a very valuable thread. Thanks for starting it & following up.

Snowflake - I had a bilateral mastectomy for DCIS with clear margins. And 3 serial node biopsies on each side showed clean. No other treatment was recommended. I was just sure I was done with any future problems. Unfortunately 2 years later I found a lump under my collar bone that turned out to be IDC. My docs were all incredulous, but a micro "germ" must have escaped the original surgery (?) Ahhhh this damn disease.

Hi, Ingrid. Sorry you’re dealing with this. I was diagnosed last week, 8.5 yrs after my bilat mast (TRAM flap reconstruction). I found a lump under my skin in the same area as my previous cancer (and the one before that, in2004).

I knew it was a possibility because of my last recurrence, which was 6 yrs after lumpectomy, rads and tamoxifen. My lymph nodes were neg in 2004. Also in 2010. All three were ER+, PR+ and HER-. I took Letrozole (horrible SE) for 5 yrs after 2010 diag.

I will be scheduling a lymph node biopsy (on the other side! Showed up on CT scan - wtf), hopefully next week. Also checking high lymphocytes (?). Hoping for a treatment plan soon. Trying to manage anxiety. Helps to know I’m not alone even though I hate that anyone else is going through this too.
Best,
Jodi