Lets draft a letter to Washington

I signed the petition AND I will send a letter in a pink envelope...IM IN!!!!!

Let's ask for more money for breastcancer.org to be able to do more epidemiological research.

There is a wealth of data in breastcancer.org and in the spirit of "ask not what your country can do for you, but what you can do for your country", I am wondering if we can use all that data better to help ourselves and our famillies.  Thousands of women join breastcancer.org every year.  That's much more than many studies.  There is a wealth of data on treatments that are recommended, side effects that were and were not suffered, usefulness of screening, etc.

For example, there is an ongoing debate about screening for low risk women under 50.  It seems to me it would be useful to know how many women under 50 on this board were diagnosed with an invasive cancer during routine mammography screening, and for how many cancer was not found this way due to breast density.  If we had statistics, even if not totally scientific, it would still be helpful, since our numbers are very large.

Often I feel that when reading the posts, I am not getting a true picture of what to expect.  By "not true", I do not mean that people are not being truthful, but I mean that it seems to be skewed.  Of course, I am still finding it helpful -- and that is why I am here, but I think it could be more helpful.

For example, I was very afraid of taking tamoxifen based on all the stories I read here.  I have been taking it now for two months, and tolerating it well so far (don't know of course if that would continue, or if it is doing anything for me anyway).  But what I mean is that reading gave me a lot of anxiety.  I think it would have been useful to get a more statistically accurate picture of the likelihood of different side effects.  

As another example, I wondered whether or not I should do a BCT or a mastectomy.  My doctors were supporting either decision.  I opted for a BMX, and precancerous cells were found in my "healthy" breast.  I think the statistics on how often that happens could be useful for other women weighing BCT or UMX vs BMX.

Many people are thinking about how to improve the healthcare system in this country.  Information technology and access to information can play a huge role in these  improvements.  There was a recent article in the WSJ about patients with rare diseases getting together on Internet and conducting their own clinical studies.  There are websites for example "PatientLikeMe" that allow people to connect with people with a similar diagnosis. Maybe with more money for programming the site, expanding and maintainig the database, and analyzing data we could make breastcancer.org even more useful -- adopting best ideas from other websites. 

Maybe we could ask members to fill out surveys every 2-3 months to collect data on treatments, diagnosis, symptoms, etc. -- as new hypothesis are generated and tested.  Not everyone would be willing to participate, and that's OK.  I think our numbers are still very large, and our findings would be useful.  That would be a concrete step that we can do ourselves to help ourselves.

Dense-sounds like something you should bring to the mods.I do agree with you also 100%.

IMO, the main success of groups like this whether it be for bc or another disease is that people can discuss info with others who are actually "living" the same disease.  Books can give certain info but it may be out-dated by the time the doctors study them.  If I want to know how Arimidex affects someone, I want to be able to go to someone who is actually taking it etc.  Without the people who take part in groups like this, they would be basically useless.  So my thanks go to all who participate in the group and are there for us when we need our questions answered.  My Onc can't tell be how it feels to take Arimidex but many ladies in this group sure can!  Yet I am told to stay away from these type groups......good thing I learned to make up my own mine years ago!

Merilee and Ladies:  The address of the White House is:

The White House

1600 Pennsylvania Avenue, NW

Washington, DC 20500

You can, of course, write "President Barack Obama" 

If you prefere to send an email as they recommend, and I usually do,  you can access:

www.whitehouse.gov/contact 

It gives an on-line form to fill out and send him a message.

If you also want to contact your senators and reps my favorite way of finding them is:

www.senate.gov

It gives you the names of all senators and reps for all states and you can select yours from the list and highlight it and go directly to their webpage and email form.  I use this a lot when I want to write to others not in my district but who will read my email during an election year.  (They need our votes!)

If you want to write to your individual senator about this campaign, you can call his local phone number and get the best address to send snail mail to.  

Glad to see we are going to be on time with this campaign, Merilee.  Will be watching for further info from you or any templates you may have for us to see.  Thanks!

Merilee, Think about posting a new topic with a title such as Call To Action: January 23 Letters to Washington. Will you participate?  And then recap what you have here in recent posts, with the link to your blog so everyone can see the suggested templates.  Be specific in what you want everyone to do, because many will not have followed this thread.  And ask the mods if they can make it a 'sticky' post for a week or so.  Thank you again for your leadership in starting this letter writing campaign; I'm 'in' and I hope 9,999 others are, too.

Carol

carol57, your post is just what I was going to suggest to Merilee.  It will even be helpful to those of us who do follow this thread.

grannydukes:  NO board is QUIET when you are around!!   I was wondering the same thing.  Maybe all the action is on Merilee's blog and I have no idea how to access it.  I wonder why the Mods don't want to let the templates be on here since it is for a bc cause.  Well, Merilee said she would return this afternoon so where I am it is almost 4 pm.  I do hope she gives us the blog thingee.

Granny:  What is more important than "does anyone listen" is that YOU are doing your part.  You know I am kidding you about your "noise".  If I ever had to go into a battle, "you'd" be my first one I would want to fight beside me.  At least you care enough to do your part.  I know what I plan on doing so now it is up to Merilee to give the info we need so we can prepare properly.

Best to you for caring, Granny!!

Carol 57, I agree with you, a new topic title might get some interest going. I can't understand why any one of the survivors on BC.Org wouldn't want to participate in something proactive like this. We should not sit back and accept our fate, we need to fight. Thank you gals for all the info as to where to send our letters and emails. This is a great help.