Anyone else pre-menopausal with PALB2 mutation?

Posted by copingatround2 @copingatround2, Sep 29 1:17pm

Hey everyone!!! Thanks for stopping by. I'm in a strange medical space. In short, from what my oncologist is telling me, all my "numbers" (onco-score - 15, bc stage 1b, 1 positive lymph node at .3cm... ) are low and in post-menopausal women would generally NOT require chemo. But she's recommending it for me since I'm pre-menopausal, have a PALB2 gene mutation, and 1 positive lymph node.
I can't find a whole lot of information about PALB2 mutations long-term effect on reoccurrence, and it seems the Drs really don't have much either. It's as if the chemo is being recommended as a "better safe than sorry".
She asked if I wanted to be apart of a study that is pretty much for my "group" of gray area statistics. As much as I would love help any and everyone, I don't want to be a test dummy either. I'd have to let them choose whether or not I got chemo, which seems like a hell of a crap shoot.
Soooo.... just curious if anyone else is pre-menopausal with a PALB2 mutation and what kind of treatment they may have had.

Thanks.

Hugs to all.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

katgob | @katgob | Sep 29 8:16pm

Post in the search on that mutation. One or more people have posted about it. PALB2 mutation

seathink | @seathink | Sep 30 10:54am

I don't have that mutation but I did have triple negative BC (10-15%) and was pre-menopause (38) at time of diagnosis, and I think I have some idea of where they may be coming from.

I've definitely seen-both during treatment and here on the boards-more mention of a "kitchen sink" approach by doctors to treating younger women with BC.

I too did some trials, and every thing you can do for TNBC - chemo, radiation, oral chemo, immunotherapy, etc.

I think it's for a two-fold reason - one, our bodies may be able to handle more, and also, we younger women, as a goup, have lower survival rates as a whole than older BC patients.

Of course many factors go into *personal* survivor rates, but the team wants to do as much as they can to up those chances of survivorship.

For me, when the tumor spread into my lymph nodes and other regional parts my team really upped whatever options we were looking at. When it spread, it put me into a lower grouping for surviving past the five year mark. (I am in year 4 so still here 😁).

catlover2020 | @catlover2020 | Sep 30 12:26pm

Type in Barbara O'Neil and what you want to know. I'm 65, post men. Score 19, palb2, DMX and hysterectomy all in 3 months. She's amazing.
I do not want Tamoxifen, to many side effects. I'm using yam cream and DIM.
check it out, remember it your body. Good luck to you

Colleen Young, Connect Director | @colleenyoung | Oct 4 2:00pm

Hi @copingatround2, I'm tagging @jixs and @cmshyf, who have mentioned having the PALB2 mutation to join this discussion.

I can understand your hesitancy about taking part in a clinical trial. It is certainly a personal choice. There can be advantages and disadvantages to clinical trials. Here are a few things to consider off the top of my head:

- A trial may involve more appointments, follow-ups, questionnaires. Some people appreciate the extra touch points, for others that may be a burden depending on travel or mobility.
- Later phases of a treatment trials are blinded, randomized control studies which means you will be randomly selected to receive the standard proven treatment of care or the treatment protocol being studied. You won't know which you'll be receiving. But you will get treatment not a placebo in cancer trials.
- Sometimes a trial offers a treatment option when no other options are available.

Here's more information from Mayo Clinic
- Clinical trials: A significant part of cancer care https://cancerblog.mayoclinic.org/2024/05/07/clinical-trials-a-significant-part-of-cancer-care/

Have you decided whether to have chemo or not? How are you doing?

copingatround2 | @copingatround2 | Oct 4 2:59pm

In reply to @colleenyoung "Hi @copingatround2, I'm tagging @jixs and @cmshyf, who have mentioned having the PALB2 mutation to join..." + (show)

Hi. I've decided to try the chemo. I'm definitely not 100% convinced of it's usefulness at this point, but I too don't want back and wish I'd done it. So we'll see how it goes...

I decided against the trial as I ddnt want to leave the decision of my treatment up to someone else. I'd be EXTREMELY happy to share my details of this journey with whomever if it will help provide some insight to others in the future.
Thanks for responding.