website may need to address if they plan to truly help women

Susie02

I have been away from this website for a while after another member here demeaned my experience with BRCA 2 results and my choice to have surgery.

On one of my last posts, a member of this website "indicated" that I did not know the facts and latest research of what I had already been through (genetic testing, surgery and even DCIS). This is NO way to run a public website. I WAS well educated on the topics above when I decided to have prophylactic surgeries after testing positive for BRCA 2, and knowing my family's history with cancer. The decisions were NOt easy

No one on this website should make another person feel that her decisions are wrong. I feel we are here to offer all choices - not to judge.

mustlovepoodles

I'm sorry you were mistreated. That has not been my experience with the BCO boards.

I'm positive for PALB2 andChek2 mutations. My genetics specialist estimated that my risk was 45%+, similar to BRCA2. Had i known that info 2 years prior i could have had preventative BMX, bypassed chemo, started an AI, and probably would never have had cancer at all.

Beatmon

Sorry to hear. Don't leave due to one bad apple, Wish we all could know and had preemptive surgery and had a better chance to skip this beast

Anonymous

I've been scared out of my mind by a few insensitive posts over the years. I usually call attention to it, and the member has always apologized. Sometimes we try to share too much knowledge in a rather superior way (we've been through it already; we know best) but it comes off as thoughtless instead.

And some of us just don't RE-READ our posts to see how they really sound to others before clicking "submit"!

With so many members on this website, all with various abilities to write clearly, succinctly and compassionately, it happens sometimes. I'm sorry. We all need to understand most of us worry more than we used to b/c of that damn dx. Hopefully your post will remind all of us to be more sensitive and thoughtful.

Hugs

farmerlucy

Susie - Sorry you had a bad experience, but glad you found your way back. I love BCO- we're all a bunch of scared, imperfect, people just trying to keep it together and move forward. I'm so glad you found out about the mutation in time. I know it involves some agonizing decisions and life changes. Kudos for facing it and doing what you had to do.

My five year cancerversary is next week, some may wonder why I don't move on. Well, for one thing, my closest friends come here. Second, the information and cutting edge research that is shared here is available nowhere else. I know many thing before my oncologist. This site give me access to the best doctor's practices around the globe. That is especially important to me since my cancer very likely has a familial component to it. And my precious daughter is approaching those "worry" years.

I hope to see you around!

Moderators

Dear Susie,

We're sorry you experienced this, and if we were aware of the issue, we'd be happy to address it. Please send us a PM with full details and we can take a look.

Sincerely,

The Mods