To ALL - Please Remember Our Focus

Joe · 11-20-2009, 06:12 PM

My Father once told me "never discuss religion or politics" as you will always end up in a fight.

I am aware of and wary of changes to our healthcare system, but this is not the forum to discuss these issues. I suggest that if you wish to talk about these matters go to one of the thousands of political blogs and message boards on the internet or save it for Facebook.

The following is a copy of our mission statement an goals:

Mission Statement

A survivor directed group joined in purpose to inform, educate and support the community of breast cancer patients and their families, by providing them with the knowledge and the tools essential for their survival.

Goals

1. To empower breast cancer patients who overexpress the HER2 gene by providing them the latest available results of medical reasearch to facilitate confident and informed decisions regarding their treatment options.

2. To provide a forum where we will use the experiences, shared knowledge, and personal history of all our members to benefit each other.

3. To educate breast cancer patients, their families and the public about how to partner with their healthcare team to receive the comprehensive care and support they need.

4. To insure that patients have faster access to information that is complete, accurate, and unbiased for critical decision making and peace of mind.

5. To give Patients and Caregivers more comprehensive and easily accessible information on cancer care, support services, and information resources.

Warmest Regards
Christine and Joe

suzan w · 11-20-2009, 06:14 PM

Thank You Joe!! xo suzan

Sheila · 11-20-2009, 06:19 PM

Thank you Joe for the reminder......politics is not what we are about...support for one another is!

Yorkiegirl · 11-20-2009, 06:49 PM

THANK YOU, THANK YOU for posting this. I so appreciate it very much!!!

Sandra in GA · 11-20-2009, 09:39 PM

Joe,
Thank you for this reminder, and thank you even more for removing Dr. Love's sticky. I think that will also help "calm the waters."
Sandra

Debbie L. · 11-20-2009, 10:37 PM

Joe said:

"I am aware of and wary of changes to our healthcare system, but this is not the forum to discuss these issues. I suggest that if you wish to talk about these matters go to one of the thousands of political blogs and message boards on the internet or save it for Facebook."

And: "Add the National Breast Cancer Coalition to the Obama marching group."

Joe, that second paragraph seems like a fairly political statement to me. And it's your statement.

I am arguing that there is good science and good sense behind the USPSTF guidelines. I have made NO mention of whose politics do or do not support those guidelines.

If we want a supportive and interesting discussion group to happen here -- a group that represents and supports all members of the "HER2 club-that-no-one-wants-to-join" -- then I agree - let's not get into politics, nor religion. Let's look at breast cancer research and try to understand what is currently known about the science of breast cancer and how very much is yet to be learned about it before we'll be able to accomplish the goal that we all desire - an end to death from breast cancer.

And when we disagree, let's still just talk about the evidence to support our stances. We may never come to agreement but we can maintain respect, and we can learn.

Respectfully,
Debbie Laxague

Sherryg683 · 11-20-2009, 11:08 PM

Debbie, am I blind..I don't see your paragraph And: "Add the National Breast Cancer Coalition to the Obama marching group."
in Joes post above. sherryg

Debbie L. · 11-20-2009, 11:30 PM

Debbie, am I blind..I don't see your paragraph And: "Add the National Breast Cancer Coalition to the Obama marching group."
in Joes post above. sherryg

Nope, it's not in the post above, it's here:

http://her2support.org/vbulletin/showthread.php?t=41918

in the "Dr. Susan Love" thread. Like I just said to Rich in yet another thread on the topic of the USPSTF guidelines, it's hard to put it all together because there must be 10 different threads all referring to the same things.

And now I'm really going to bed.

Debbie

StephN · 11-21-2009, 12:03 AM

Yes, we are here to support those who ALREADY have breast cancer. With all due respect that is normally what takes place in these forums.

Our shared disease is much tougher than the normal DCIS that may grow slowly. OUR brand of this disease needs to be taken seriously and kept in the equation of any health care reforms. It strikes at any age.

How can we have a voice if we are reduced to numbers from papers/studies written before Herceptin and other new drugs are factored in??

Our brand of breast cancer is inherently more expensive to treat at the outset. How do we ensure that those coming behind will get the same or better treatment as we had?

Jackie07 · 11-21-2009, 03:15 AM

I just made a long posting at Dr. Susan Love's Forum. Perhaps it will be more effective for us to 'voice' our opinion directly as individuals to either the task force or the experts whose advice we do/don't agree with.

Joe is correct in pointing out the 'focus' of our Board. As a 'non-profit' 'support' group we really cannot afford to lose our focus.

tdonnelly · 11-21-2009, 01:44 PM

Cervical Cancer came first for me Undiagnosed all these years. 1999 at Gyn. exam for numerous boils/discharge at pelvis site for 10 years then to Left Breast 2006 (underneath) then to Right Breast Numerous along the side of Right Breast: Dx: 10/06 Invasive HER2+ 2
Thyroid (Hurtle Cell) 3 nodules: 1992 Unresolved Hyper/Hypo due to bc treatments. Pap smears inaccurate reports, numerous TSH inaccurate, severe vein damage due to unprofessional medical lab draws at LCM Hospital/Evergrn Park and Oak Forest Hospital-Cook County. Port for life..............

For those of us with Large Skin Tags on our Scalp do not dye your hair: Ongoing Brain Disfunction/Cysts/Anerism Brain swells: I have dyed my hair/perms since age 16. WEB MD states breast boils do not mean bc: 3 of our sisters at Komen all had same experience; please inform Web MD their findings for us are wrong.

Sorry Joe & friends here at HER2+ my daughter's life story in Illinois is very political: Tamara Donnelly vs State of Illinois; I ask that all just listen to the facts as the story is told in the Courts of Philadelphia under Janet Reno, my friend and myself.

I am a bc veteran with a family who still does not understand our daily challenges.............SSI/Medicare/Nash Law of CHGO- $7000.00 I want my money back...............

Take Care one and All Here and Komen. We are printing all my thoughts here for My Historical Journal of BC for my family. Know our New President cares and read my letter to him here in WI. He is working to develop a new responsible program for all of us so we dont go through all this waiting 3 years for SSI/Medicare and help us with all our needs throughout our epidemic of bc journeys.

Best Regards,

margiermc · 11-23-2009, 09:25 AM

Hi, I went back to work, felt good to be in a normal world.
Last Monday was the last vaccine in Washington, got
very emotional about health screening, not just for me but
for my daughter and other young family members.

I just felt - what will they say next, no treatment to later stages?
Got, scared. We all have our own personal faith and political
opinion. And, yes - we do need to keep this post focus on what we all have and are going through her2 breast cancer disease.

It did get political - with government panel guidelines, all over the news, and some like myself had an urge to say something, letting others aware - about possible insurance problems, but there are other places to take action/advocacy groups etc.

There are many organizations that have online petitions, Komen is one of them - that will combat this head on - and that is a good place to vent/or take action that will hopefully show a voice in how a breast cancer survivor feels in front of the political arena.

As for me,
I am doing well, working, cooking, exercising and decorating for the holidays.
Wish all good healthy holidays!

Forgive me, I was scared, tired and emotional.
Margie

dcis
liver met 10 wk treatment TCH
NED
Vaccine

Christine MH-UK · 11-24-2009, 12:45 PM

Hi Joe,

One strategy that has worked well for the only other chatroom I post in has been to have a separate 'hot issues and current events' section for people who are interested in the political issues or controversies of the day. People are heavily interested activism go to that part and people who are just interested in giving or receiving emotional support don't.

This has been a really lovely, supportive website, and it would be nice to get that atmosphere back.

Best wishes,

Christine MH

PinkGirl · 11-25-2009, 11:07 AM

Well said Christine. I too miss the former atmosphere of the
message boards.

Debbie L. · 11-25-2009, 09:43 PM

>>Well said Christine. I too miss the former atmosphere of the message boards.

If the atmosphere has changed, then I will accept a good share of personal responsibility for that.

It has always been my nature to question. Learning more about breast cancer, after my own experience with same, has honed my interest in the science of breast cancer. And as I learned how few answers we (yet) possess - it also honed my interest in questioning.

Working through the issues of mortality/survivorship has brought this formerly-shy and reticent person out of the shyness-closet. I believe that having an understanding of the science, and of the controversies, is an important part of breast cancer advocacy and support. And that, having acquired some understanding myself, it is my duty to stand by it and to express it.

But I am able and willing to accept that polite debate of science conundrums, and of controversy, is an unwelcome intrusion into this already-comfortable and content group.

I can't say that I'll be able to leave this group altogether. I've become attached -- to many of the people, and to the HER2-specific science. I am pretty sure I'll still lurk. But I can say that I'll stop posting, and that you can return to your "former atmosphere" in peace.

Warm regards,
Debbie Laxague

Mary Anne in TX · 11-26-2009, 04:22 AM

Me too, Christine and Pink! ma

PinkGirl · 11-26-2009, 07:28 AM

Debbie L ... I don't think you've done anything to change the
atmosphere of the message boards. I enjoy your posts .. they
are always well thought out and interesting ... and calm.

chrisy · 11-26-2009, 01:04 PM

Debbie -
I agree with your FIRST post,
If we want a supportive and interesting discussion group to happen here -- a group that represents and supports all members of the "HER2 club-that-no-one-wants-to-join" -- then I agree - let's not get into politics, nor religion. Let's look at breast cancer research and try to understand what is currently known about the science of breast cancer and how very much is yet to be learned about it before we'll be able to accomplish the goal that we all desire - an end to death from breast cancer.

And when we disagree, let's still just talk about the evidence to support our stances. We may never come to agreement but we can maintain respect, and we can learn.

Your posts are always thought provoking and well reasoned - and I think an important part of the discussion. You have not "changed the tone" of the board except maybe in a positive way by ALWAYS staying on the respectful side of the line. I applaud you and what you bring to the discussion. Thank you for questioning and encouraging meaningful discussion - you're right, we all learn from that.

Joe, we cannot avoid discussion of the issues around the current events - especially when they concern issues of access to care and our very survival. I see nothing inconsistent with the mission and vision of the boards in having this discussion - as long as it is respectful. The recent hoo ha over the mammograms hits us from every angle - including multiple NEWS posts on this website!

In my opinion it would be extremely helpful and supportive to the needs of the group to give reasonable discussion of these issues oxygen, not cut it off. I agree strongly with the suggestion to have a separate forum where those who want to can safely discuss these issues without being attacked, and those who do not wish to participate can safely get the support they need and deserve without stumbling into discussion threads that are not comfortable for them.

Just my 2 cents...

Gerri · 11-27-2009, 09:00 AM

Debbie,

I hope you will reconsider about posting on the important topics that we face. I always read what you have written and find that you back up your statements with facts and science - not emotion. You boldly tackle hot topics with logic and reasoning and have helped me see both sides of an issue with clarity. You have been nothing but respectful in all of your posts, even when others disagree with you. You are a tremendous asset to this board and I hope you will continue to contribute.

All my best,

Catherine · 11-28-2009, 09:25 AM

I too support a separate subject line related to discussion of Hot topics. I think we can keep it respectful and courteous and still vent. and explore a hot topic. Please let Joe know if this new Subject Line would be of interest to you. I have to say, that I am hestitant to give Joe one more "sensitive" issue to deal with. However, Joe always comes through for us. We love you Joe, and thank you as always for your care and dediciation to the board.

With respect and love,
Catherine