First Meeting at BC Support Group - No HER2Neu

[weezie1053]

Thought I'd share with you my first experience at a BC support group. When I was first diagnosed last June, an old friend gave me a book titled "BOOBS," best of Breast Cancer Survivor Stories. It was a great read! It was about 8-10 women and their BC experiences. They were members of a BC support group outside of Atlanta. At a RLF in June, I saw the happiest group of ladies who were members of a support group for BC. I finally joined them for a meeting, and they were absolutely fabulous. There are about 15 members. When I asked the members of this BC group if any of them were HER2Neu +, most of them didn't know what I was referring to much less did they have the gene.

The moral to this story. I am so grateful to have found this website and you gals. I will continue meeting with new friends in the BC group because they are a great bunch of gals with whom I share a lot, but I am most grateful for finding this group (HER2Support.org) with whom I share everything.

Wishing you all a great weekend!

Louise

[hutchibk]

My significant other gave me BOOBs for Christmas a couple of years ago... it is a great book. (He liked the name, of course!)

I too have found 2 support groups here of fun and positive women. One of them I was involved in starting, for younger survivors, called the Pink Ribbon Cowgirls. Only one of them is Her2Neu, but she is NED since first dx 2 years ago. The other group is Bosom Buddies. I plan to start going more regularly, but one of my dear local b/c friends is Her2 and it is a group that she has gone to for a few years - she LOVES it...

But this one, HER2SUPPORT, is the most profound one for me! So valuable. I take info from all of you smartie-pants and share it with my other support groups, my chemo nurses and my doc...

I tend to think that this group of ladies (and men) could actually save the world if we had the inclination...

[Adriana Mangus]

Dear Louise:

I received the same book from my daughter on my Birthday July 16, haven't read it yet, am sure I will enjoy it as much as you did..

There is a group for bc survivors (recurrent cancer) here in my town -Poway, Ca-San Diego area, it meets every 2nd thursday of the month @
a local hospital.

Today is the first thursday of the month, but couldn't attend cause my sister is visiting from Mexico. I will attend next meeting, I have heard great things about this group of ladies, who like me are experiencing a recurrence. I will tell you more after my first meeting.

Glad you found a support group near your area.

[Sheila]

I belong to a local group about 20 minutes away....the age rages from late 20's to the 70's...a very special group, although out of 40 members, I am the only Her2+++.....guess that is why I always come here first for info and help. The support group I belong to it called Hooter Pals.

[AlaskaAngel]

Over the years there have been fits and starts of bc support groups here, and one started recently after 6 years without any, but there are no other known HER2's locally here either. This seems a little bizarre to me if it is true that 20-30% of all bc are HER2 positive. There have been other Alaskan HER2's online on this website that I've enjoyed meeting, but I would never have met them otherwise because I'm about 1,000 miles from where they are. We have Joe and Christine to thank many times over for helping us out.

Alaska Angel

[Patb]

Louise and all
This is strange. I also belong to two support groups for bc and one had
no one Her2 or even knew what it was, in the other group one lady finally
joined but had no idea about Her2. Did I have a lot to tell her, and of course the first thing was about this group and all the knowledge here.
She was shocked that she was so uninformed.
patb

[Brenda_D]

Sorry to say that we have no local groups either. The closest one is 50 miles away.
I have talked to women when I got rads and chemo, and most them didn't know what kind of BC they had, let alone what their receptors were.

They just blindly do what their doctors tell them, and don't question it.

Me- I want to know everything! I have copies of all my reports, scans, etc.
I do research, try to learn of new treatments in the pipeline, and I know I'm Her2 positive.

[Becky]

No one in my local bc support group is Her2. Many of them did know what it was and they were all excited for me when I started Herceptin - especially 4 months after chemo and 2 months after rads (due to the 2005 ASCO meeting). However, none of them really knows anything and just let their doctors do whatever to them.

I loved this site as soon as I found it and have not turned back.

[juanita]

There isn't anybody in my group her2+. I'm the only one. I'm not even sure some of the new ones know what it is.

[weezie1053]

This website is a Godsend. I only wish I had more time to spend to visit the website and read each and every thread. I work full-time, and I have a 5-year old grandson that lives with me and my husband along with his Mom. The grandson keeps me busy when I am home. He is also what motivates me to get well and stay well. He was such a trooper when I went through the worst of my illness. He was there when I had my hair cut down to a boy's cut. He laughed and giggled so hard that Grandma forgot about her vanity--at least for the day.

For those who haven't read the book entitled "Boobs." it is an excellent read. It makes a great gift for someone who is recently diagnosed. I read it while in the hospital after my mastectomy. The surigical oncologists team walked in my room, and they nearly lost it when they read the title.

Take care.

Louise

[MJo]

Oh My! I'm in Delaware and 4 out of 7 of the BC survivors in my Wellness Community support group were Her2 Pos. Is it something about Delaware???