Double mastectomy with PALB2 and early stage BC?

Anonymous · March 2021

Daisy_P · March 2021

I got diagnosed with stage 2 est + BC last year and unfortunately my gene test of + PALB2 came after my 2nd lumpectomy to get clear margins. I've just finished chemo which was really hard on me and I have a very short window to decide whether I proceed with radiation or go on to have a full risk reducing mastectomy with reconstruction. I went to see my surgeon last week to start reviewing options and he is concerned that I'm too weak physically and mentally to take this on right now. He wished he could have done it at the start. Has anyone not had a double mastectomy and not had a recurrence/new cancer? Thank you so much

ssteig · March 2021

When I was diagnosed with breast cancer (stage 2A) back in 2011 this gene was not tested for and therefore I had a lumpectomy as part of my treatment. I was retested about 3 years ago and discovered that I do have the PALB2 gene. At this point I have not had a mastectomy. My surveillance routine is to rotate mammograms and MRIs every 6 months. Since I am HER+ I continue to take anastrozole but that is the only treatment that I am currently on. I have not had a recurrence or new cancer (knock on wood).

Daisy_P · March 2021

Thank you so much for sharing this, this really helps. It's interesting this has only been around for such a short period really. I had to ask for this genetic testing at the time of diagnosis, so if I hadn't of asked then I would have been none the wiser. It's great to hear about your journey, and wishing you forever health :-)

romashka · March 2021

Hi Daisy_P

I was diagnosed August 2017 and had double mastectomy without reconstruction. Also have PALB2.

No signs of cancer around.

Hugs!

romashka · March 2021

Daisy,

I reread your original post and I realize that you were wondering about folks who did not have a double mastectomy. I am not in that group but I do have PALB2. Wishing you all the best.

hnsquared · March 2021

daisy....I’m so sorry you are here with us. My understanding is that as they test for brca1 and brca 2 they find variants in peoples dna and as there is more information they are able to figure out whether those variants are linked to breast cancer. So my cousin was tested in 2013 after a breast cancer diagnosis and she was negative for brca but had a vus which is a variant of unknown significance( something like that . I was tested last year for brca and a bunch of others linked to breast cancer (maybe 28 or 30) and I am also PALB2. It’s highly likely if my cousin was tested again that variant she had would be PALB2. So not new...but they are learning more all the time.

I apologize I can’t provide an answer to your question....once I found out about the genetic mutation I felt bilateral mastectomy was the best option for me. My window from chemo to surgery was 6 weeks...does your surgeon feel like you won’t be doing better in that length of time? I don’t see many of us with PALB2. I wish you the best and let us know if you have any other questions

RosieRed · March 2021

When I was diagnosed with 2a BC in 2018, I had genetic testing done and found out that I had PALB2. Went through chemo first, then double mastectomy (thinking no boobs, no more cancer) with tissue expanders, radiation, and finally exchange surgery. Thought I was in the clear. This past January I had my 6-month blood work done and the tumor markers were way up. After a CT and PET scan as well as a biopsy, I was diagnosed with metastatic breast cancer that is residing in my bones. My oldest sister had stage 3 breast cancer who did the same regimen as me, except had a lumpectomy, has been clear of cancer for 12 years. She did not find out that she had PALB2 until after I got tested for the mutation.

joansf · July 2021

Hi Daisy—I was treated for breast cancer 12 years ago. I had a lumpectomy then a left mastectomy. Still have the other breast and have not had a recurrence. At the time, the PALB2 mutation was unknown. I'm happy to give more details. I'm just returning to this site now that I've tested positive for PALB2 and two of my daughters have as well.

Violet2 · December 2021

HI, I was diagnosed 7 years ago with IDC at the age of 57. Right before Covid, I had 3 biopsies over 18 months, the last of which was LCIS (the other two benign). The LCIS was found while I was on Arimidex. My mother, her sister died from breast cancer--diagnosed after menopause and my first cousin was diagnosed with DCIS in her 60s. I had genetic testing done and it show a mutation on both the PALB2 and BRCA gene, both mutations classified as unknown significance. After the 3 consecutive biopsies (I am monitored every 6 months) I was considered preventative mastectomies but due to Covid restrictions it was put on hold. I have since had a normal mammogram (June 2021).

My question is: Since the mutations I have in PALB2 and BRCA are of unknown significance and have not been proven to increase risk, is it reasonable to consider preventative mastectomies? I know that its a personal decision but am interested in what others with these mutations think. Thanks.

1982M · January 2022

Hi Violet2,

It’s a hard choice. I’m 39 and am being treated for invasive cancer. I also have a variant of unknown significance on my PALB2 gene. I have a family history of breast cancer as well.

When I went to talk to my surgeon she offered a unilateral or bilateral mastectomy from the start. One of the risks she highlighted is the amount screening and biopsy’s I will undergo for the rest of my life as a con to keep my breasts.

In my personal opinion, if you want a bilateral mastectomy- go for it. Just be sure to look into all the different outcomes and explore what you best can live with.

I’m giving myself 5 years. If in 5 years I cannot take the poking and prodding and waiting, I’ll get a bilateral mastectomy. Hopefully my skin will hold up bc I’m getting radiation to my left side…. Ugh.

Double mastectomy with PALB2 and early stage BC?

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