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Vision and determination
We are fortunate to have people like you in our group. In order to make our effort useful for each of our diverse members, we need to recognize that there are myriads of issues that come to the discussion group. Our objectives should be to give fellow breast cancer patients comfort, information, recent medical reports, how to deal with doctors, insurance, hospital, etc., actual experience from survivors and to show them where to go.
We visited many other breast cancer support sites but this one is much more informative and caring. Although we jointed this group only a few month, we already know that a few hard working people really made the difference. Any organization can only be successful if there are dedicated people who are willing to take time to give advice and hold hands with so many of us who received the shocking news and knew no where to turn.
Therefore, I propose that some thoughts should be given to a rough idea how we can organize us into a functional group that can give person-to-person help where help is needed. Perhaps we need to organize to have several sub-groups with different disciplines. Offhand, I can see that we need a group to deal with people coming here with a diagnosis and a treatment plan. We do not advocate us as a medical facility, but with our vast resource we certainly can be in a position to show how some of us with similar situations had already dealt with the problem before. Most breast patients are much more comfortable in knowing how other fellow patients had gone through on a personal basis.
I can see that we need a group to deal with medical professionals insurance people and employers. Many of us are quite successful in dealing with these people but there are also, for a variety of reasons, many who got no where with them. I suppose an organized group could use our banded power to help out.
Then there is a need for dietary and non-traditional supplements advisory. So many postings are here that would take hours to digest and some of them are confusing and contradictory.
Of course, the information on new medication and reports on new procedures and new trial data are always eagerly waited by our members. More importantly, the interpretation of data to a common layman's language is much more useful. Most patients listen to the short and terse advice from their doctors with no intelligent questions to ask. We should get them prepared on a list of questions so that they can bring with them to the doctors. They would feel more comfortable in making a suitable choice of the options. The possible entry to the available trials should always be posted regularly for our members.
Being an aggressive type of breast cancer, HER2 positive cancer patients are always wary of recurrence. An advisory group with experience in detecting, treating and combating metastasis is badly needed by this group. How frequent should we make self-examination, take various medical tests of various organs and look for suspicious pain, itch or other symptoms?
There are many more areas that can be critically important to us. Let all of us pour in here with ideas and needs. I know we can be a meaningful force in the fight against our common enemy.
Ann
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Hybrid Mode
