Support Groups

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csr771
csr771 Member Posts: 117
in Breast Cancer #1
Aside from this site, is anyone involved with a cancer support group? If so, do you find it valuable? How could it be more valuable to you? What do you like or dislike about it? If you could create a group, what kind of support would it offer?

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  • Heatherbelle
    Heatherbelle Member Posts: 1,226 Member
    #2
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    i love my support group
    Hi :)
    I started going to a Young Survivors support group in my city. I was 34 at the time of my diagnosis. I'm SO glad that I found it. We only meet once a month, but alot of the ladies are also on facebook, so i talk to many of them & we sometimes meet up for breakfast or lunch. It's not only great to be around other women who have "been there, done that", and can give you advice and/or inspiration, but also a great way to get involved with breast cancer awareness in your area, if you are interested. I know some people want nothing to do with anything cancer related after their treatment ends, but for myself - I am drawn to helping out newly diagnosed women & other women in their 30's & with children, like me, because there's not a whole lot out there addressing specific needs & concerns of younger breast cancer survivors. One thing that I think would be wonderful would be a support group for both caregivers/husbands of b.c. survivors, and one for tween/teen girls who's moms have gone through b.c., and who themselves are now considered high risk for it.
    Thanks for posting this, great topic.
    *hugs*
    Heather
  • roseann4
    roseann4 Member Posts: 992 Member
    #3
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    Heatherbelle said:

    i love my support group
    Hi :)
    I started going to a Young Survivors support group in my city. I was 34 at the time of my diagnosis. I'm SO glad that I found it. We only meet once a month, but alot of the ladies are also on facebook, so i talk to many of them & we sometimes meet up for breakfast or lunch. It's not only great to be around other women who have "been there, done that", and can give you advice and/or inspiration, but also a great way to get involved with breast cancer awareness in your area, if you are interested. I know some people want nothing to do with anything cancer related after their treatment ends, but for myself - I am drawn to helping out newly diagnosed women & other women in their 30's & with children, like me, because there's not a whole lot out there addressing specific needs & concerns of younger breast cancer survivors. One thing that I think would be wonderful would be a support group for both caregivers/husbands of b.c. survivors, and one for tween/teen girls who's moms have gone through b.c., and who themselves are now considered high risk for it.
    Thanks for posting this, great topic.
    *hugs*
    Heather

    I'm involved with ECaP.
    This is a group which was started in the 80s by Dr. Bernie Seigle. He was one of the first to offer this kind of support to cancer patients. He was a surgeon at Yale New Haven Hospital. It is a national support group so you can check online to see if there is a location in your area. Dr. Bernie wrote, "Love, Medicine and Miracles" and many other helpful books. He was the first to show research results that cancer patients who had support groups lived longer. He was on Good Morning America back then and was challenged by another doctor. This doctor did his own study and many years later wrote Bernie an apology. His results were the same. People who belonged to support group (this is a support group) lived longer no matter what the stage of his/her cancer.

    Roseann
  • laughs_a_lot
    laughs_a_lot Member Posts: 1,368 Member
    #4
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    Next city
    The next city to mine has a comprehensive Cancer center and has support groups. I have not yet started one but plan on trying it. I have been to support groups before for other issues. Because of my positive experience with that group I thought it would be good to try one for bc. I think support groups help counteract some of the negative sterotypes one could get when one is dealing with a certain disease. I think it is not that bc brings on a negative stereotype but it sure can give ideas of how to deal with people who are too nosy. Perhaps it will cover FMLA issues and return to work issue. For me this will be an important weapon in my arsenal.
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #5
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    I went to ONE support group after the fact of issues...
    I was not treated well at work with my BC-they did everything wrong and maybe even illegal how they treated me..but I DID NOT Know until all said and done. I drove about an hour and half for group in ref to: work place issues

    NOW I Know better IF I ever need to take time or go for treatments...I thought very helpful...I DID NOT go for every day group local. I did on occassion on some of my BAD days stop in to see therapist at my cancer center which was a great HELP...

    MOST of the support groups around me were during they day and I work full time..so if at night I may have gone...

    Denise...
  • Cat64
    Cat64 Member Posts: 1,192
    #6
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    Csr
    The Cancer Center I go to just started a BC Support Group last month and I couldn't of been happier that they did! I had been considering going to one, but couldn't find one close enough to home. They are going to bring in a Nutritionist, a Psychologist, and other speakers to address the issues we face throughout this journey. Yes, I do believe it will be of great value. It was nice being able to meet other women that have been or are now walking in our shoes. I love this site and the people here enormously, but to have support "locally" helps in a different way. The only thing so far that I think would be of greater value or that I dislike, would be that they only meet once a month!
    ♥ Cat
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #7
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    Cat64 said:

    Csr
    The Cancer Center I go to just started a BC Support Group last month and I couldn't of been happier that they did! I had been considering going to one, but couldn't find one close enough to home. They are going to bring in a Nutritionist, a Psychologist, and other speakers to address the issues we face throughout this journey. Yes, I do believe it will be of great value. It was nice being able to meet other women that have been or are now walking in our shoes. I love this site and the people here enormously, but to have support "locally" helps in a different way. The only thing so far that I think would be of greater value or that I dislike, would be that they only meet once a month!
    ♥ Cat

    nutrionist
    I asked if my insurance would cover and I was told NO...sadly...but there was one on staff and I was allowed ONE free visit...(found out from therapist at cancer ctr..so I went..I figured ONE was better then none>)

    Denise
  • Angie2U
    Angie2U Member Posts: 2,991
    #8
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    disneyfan2008 said:

    I went to ONE support group after the fact of issues...
    I was not treated well at work with my BC-they did everything wrong and maybe even illegal how they treated me..but I DID NOT Know until all said and done. I drove about an hour and half for group in ref to: work place issues

    NOW I Know better IF I ever need to take time or go for treatments...I thought very helpful...I DID NOT go for every day group local. I did on occassion on some of my BAD days stop in to see therapist at my cancer center which was a great HELP...

    MOST of the support groups around me were during they day and I work full time..so if at night I may have gone...

    Denise...

    I know many pink sisters
    I know many pink sisters absolutely love their support group. I just haven't taken the time to even go to one yet. Maybe someday I will. I know they are great for some, and, others didn't like them.

    There is also a young survivors organization that some here go to. I don't know the website though. Maybe someone can help you with that.
  • waffle8
    waffle8 Member Posts: 234
    #9
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    disneyfan2008 said:

    nutrionist
    I asked if my insurance would cover and I was told NO...sadly...but there was one on staff and I was allowed ONE free visit...(found out from therapist at cancer ctr..so I went..I figured ONE was better then none>)

    Denise

    support
    I go to a once a month cancer support group at a local hospital..I have made some new friends..But found it was a little difficult at the beginnning because I was newly diagnosed and most of the group was years out of treatments! But a year later I am still going.
    Blessings!
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #10
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    waffle8 said:

    support
    I go to a once a month cancer support group at a local hospital..I have made some new friends..But found it was a little difficult at the beginnning because I was newly diagnosed and most of the group was years out of treatments! But a year later I am still going.
    Blessings!

    day time
    most support groups I saw posted were in day time, so since working full time I couldn't attend...
  • skipper54
    skipper54 Member Posts: 936 Member
    #11
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    plan to go
    I haven't made it to the local support group yet but plan to start in April. They meet once a month at the Breast Care Center in the same building as my surgeon, next door to the treaatment center. The patient care coordinator is involved as she is one of the founders of the local breast care alliance. They provide every newly diagnosed woman with goodie bags, a lending library, and lots of help. I haven't gotten there before because they meet on Thursday and Thursday was my chemo day. Then was just too tired. Meetings are at 6pm so working gals can make it too and they have great speakers and programs as well as a couple fun events. I will be joining in their benefit walk/run on May 7 - WALKING not running.
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #12
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    skipper54 said:

    plan to go
    I haven't made it to the local support group yet but plan to start in April. They meet once a month at the Breast Care Center in the same building as my surgeon, next door to the treaatment center. The patient care coordinator is involved as she is one of the founders of the local breast care alliance. They provide every newly diagnosed woman with goodie bags, a lending library, and lots of help. I haven't gotten there before because they meet on Thursday and Thursday was my chemo day. Then was just too tired. Meetings are at 6pm so working gals can make it too and they have great speakers and programs as well as a couple fun events. I will be joining in their benefit walk/run on May 7 - WALKING not running.

    Dammit DOLL
    I got a Dammit doll from therapist at cancer center...and just loved it..

    other (past) cancer patients volunter and make silly little rag dolls so when having a BAD day you can take it by the feet and hit it on desk, wall or what ever...

    great idea....

    Denise
  • Lynn Smith
    Lynn Smith Member Posts: 1,264 Member
    #13
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    disneyfan2008 said:

    Dammit DOLL
    I got a Dammit doll from therapist at cancer center...and just loved it..

    other (past) cancer patients volunter and make silly little rag dolls so when having a BAD day you can take it by the feet and hit it on desk, wall or what ever...

    great idea....

    Denise

    Meeting
    I went to a meeting just a few months after I was DX.Just got done with my 2nd surgery.I know most were long term survivors.Not me.So it was very new to me.

    The thing I got out of it and liked was "meditation".I would love more of that but need to learn how to do it on my own than going to group sessions.There is a place about 25 miles but prefer not even going that far.I have doctors that far and farther.You get tired of driving.Might see if there are any books but the little bit of meditation we did that evening i think I can do it at home.The breathing techniques etc.

    I do participate in Relay for Life.I had more fun than I thought I would.Being so new to it I thought I would cry constantly but only did when poeple I knew came up to me and asked "WHO are you walking for".That got to me.They didn't know.

    Our Relay for Life is coming up in June.It will go by fast.I will be getting something in the mail soon.Will see all my survivor friends and I have a new friend who wants to do it with me.She said call her. I meet so many of my friends through community service work I do for animals.They would call me to schedule appt to get their pets fixed.We would talk and found out alot had breast cancer.One liver cancer.That is how I got involved in Relay for Life.Through a lady I met on the phone and she pushed me.

    Lynn Smith
  • sal314
    sal314 Member Posts: 599 Member
    #14
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    I was involved in a support group for years...
    It was a faith based group, so God and faith played a big role. I found it extremely helpful in that you are surrounded by people who have gone through the cancer journey and experienced all the same emotional/physical things you have. There is something very comforting in having people who have walked your walk there to support you, listen to you, cry with you and celebrate with you.

    Not all support groups are the same though. Sometimes you have to try several different ones before you find one that is comfortable for you. You may go and figure out it's really not for you as well. It's all a very personal choice.

    For me, I wouldn't even consider a group that didn't have faith as an intricate part of the group. I tried one once and it was more or less a pity party of mass proportions. Having faith in the middle of your journey makes your perspective and outlook all the much brighter.

    Anyway...I would encourage you to at least try it and see if it's something that would help you. You can always stop going if you don't think it's beneficial to you. Oh...one other thing...there have been studies done that back up the benefits of people who do attend support groups vs. those that don't. The ones that do have a higher survival rate and handle their illness better. At least that's what my oncologist told me:)

    Blessings,
    Sally

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