Why don't doctor's give support info?

tabby
tabby Member Posts: 135
edited June 2014 in Managing Side Effects of Breast Cancer and Its Treatment

I was diagnosed with LCIS in Jan. 09 and ILC in March 09.  I have had biopsies, ultrasounds, MRI, mammos, genetic testing, and recent sentinel node surgery.  If everything is truly clear this week, I will schedule bilateral masectomies (yes, I know I can get lumpectomy and rads, but NO THANKS).  I have only been asked one time (with genetic testing) how I am doing emotionally and if I have a support system.  There seems to be a big hole in the system.  Why isn't there some assistance given at time of diagnosis?  I'd be willing to volunteer once I'm finished with this to help another "sister" navigate through all of the appts., expenses, decisions coming, tests, emotional stress to diagnosed as well as to the family, etc.  I know there are support groups out there, just wish I didn't have to search for it...hoping they'd hand me a sheet of some things that are available in the area.   Anyone out there have a better experience or a suggestion?

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Comments

  • 2z54
    2z54 Member Posts: 261
    edited April 2009

    I totally agree!  It's very wierd, isn't it?   If it weren't for a wonderful breast surgeon who spent 2 1/2 hours with me during the first appointment, I would have never known I needed an oncologist, plastic surgeon, etc.   Fortunately, the breast surgeon had very good recommendations for me. And, my sister in law recommended the breast surgeon.  But yes, the system is definitely lacking in support!

    Wish I had a suggestion.  I would love to get more involved but I'm not sure where to start.  Right now, in addition to going back to work in two more weeks,  I'm trying to help my lymphodema therapists get the word out about "what every doctor needs to know about lymphodema".   Now that's a subject that gets no respect!

    Anyway, good topic.  I don't know what the answers are...

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited April 2009

    I think we'd all agree that we have to be our own advocates. The doctors have no idea what our support system is at home. We're big girls........ 

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  • navygirl
    navygirl Member Posts: 886
    edited April 2009

    Tabby, I so agree...to the point where I wrote a recommendation to my doctors asking if we could start a buddy program for newly diagnosed people - pairing them up with someone who's been there. I just think it would be nice to have someone from the start who can help you navigate, understand what's coming, ask the righ questions. Even the most organized person can get that "deer in the headlights" look and feeling when getting diagnosed with cancer. I encourage you to put it out there and try to help fill the hole....I'm sorry your experience was so much like mine...but at least we can do something about it!

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  • ktym
    ktym Member Posts: 2,637
    edited April 2009

    My center about chokes you with support and support info. (NIH designated Cancer Center with a well developed Breast Center)  I think it just depends on where you go.  Your desire to help others when you're done is admirable.  I've talked to more then one woman who found it too painful to think of supporting others when they were done, brought back memories they were determined to move beyond.

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  • EWB
    EWB Member Posts: 2,927
    edited April 2009

    I agree with the need for oncs or their staff to know what is available to offer support. I was really lucky with my onc who not only wants to know about things physically but emotional and mental as well. He knows loads about breast cancer but so much about other stuff and knows it. He has a great team and when something comes up that is out of his arena, he refers to people who do know. Its great. There is, however a big gap. There are a number of places that do offer help but you have to find them...thats the problem I think all offices and centers should have this info available so that if they don't have buddy system or well formed support structure, they can get pts names and lists of where there iIS help. Shouldn't be so hard to find, esp when so much is going on. This is a real pet peeve I have. I have been collecting info for the past 2 1/2 yrs in an effort to find help and support for stage 4 concerns...you'd think it would be easy but alas its not.

    Tabby- if you send me pm I would be happy to see if I can help point you in the right direction. Where do you live?

    Elaine

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  • EWB
    EWB Member Posts: 2,927
    edited April 2009

    Some facilities have patient navagators to help new pts work thru the system. I believe the American Cancer Society also has that kind of program, if you live near a center thats any good, they also have access to a hugh data base that has all kinds of info. There are also some sites on the web that are a good starting place, depending on what you're looking for, where you live etc.

    Best to all today

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