In-person Support Groups

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Editgrl
Editgrl Member Posts: 903 Member

Just curious...  has anyone here found any local support groups specific to uterine or gynecological cancers in their areas?  Some here have mentioned that they have never met another woman with uterine cancer, and neither have I.  I had searched a couple of times in the last few months and found absolutely nothing, though I did find an ovarian cancer group.  Tonight I stumbled across a number for a women's gynecological cancer support group on a list that was published last year by a local breast cancer advocacy organization.  I'm guessing I missed it because I was searching for uterine cancer.  Mildly curious and will probably make a phone call tomorrow to speak with the organizer. I was wondering what other women's experiences have been.

Chris

 

 

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  • Abbycat2
    Abbycat2 Member Posts: 644 Member
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    Uterine Support Groups

    Chris, I see that like me, you are awake at the wee hours of the morning! I use to sleep through the night but rarely anymore. 

    When I was first diagnosed, I researched the availability of a uterine specific support group but I couldn't find one. I joined an ovarian support group and attended it for a short while. Although the members were wonderful, I didn't feel comfortable talking openly with male members (husbands) present. I've only met two women with uterine cancer, one the aunt of a coworker and the other with metastatic stage 1 UPSC who had surgery only (no chemo or radiation before she recurred.). The aunt has been NED for 4 years. She had the type 1 type of cancer.  The other woman was receiving chemo when I was and my heart broke for her. I don't know her name and I often wonder how she is doing . My grandmother and possibly her daughter had uterine cancer. My father told me that his sister had ovarian cancer but I would not be surprised if it was actually UPSC. In those days I don't think it was easy to distinguish between different types of cancer.

    I have actually considered trying to start a uterine support group but that would take more time and energy than I have. Right now, I am worn out over getting my house tiled that started on 11/2/15 and is still not done! What a mess I am dealing with, as the entire home-walls included- is filthy. Once done, I will have to clean every square inch of the place. Last week we had to move out along with our 3 cats, Mew Mews, Tippy and Abby. The latter two are still being boarded at "kitty camp" and I am hoping to pick them up tomorrow. Whew, too much, too much.

    Warm Wishes,

    Cathy

     

  • AWK
    AWK Member Posts: 364 Member
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    I tried to find something too

    I attended an ovarian group, nice people but they didn't grasp he serious nature of UPSC.  They thought all uterine was cured by surgery.  They didn't know there are a variety of uterine cancers that are deadly.   It was a teachable moment.  Then I shifted gears and was referred into a group for those with advanced cancers.  Much better but not the same.  I just went once.  I might not be a group girl!  Or maybe whatever it is I need is being fulfilled here?  

    Hugs -Anne

  • txtrisha55
    txtrisha55 Member Posts: 693 Member
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    I never looked into it

    I never looked into it because I knew I was nt a group person to talk about myslef and what I was going through.  I suport all that can do it but it is not for me. Where I got my treatment UT Southwester Medical Center the cancer center had support groups but it was not for uterine cancer just all cancer.  There are a few in Dallas Fort Worth area but all fall uner the title of Ovarian and other gynecological cancers.  So I fell the focus is going to be on Ovarian cancer.  Same area but different.  

     

    praying you find the right group for you even if it was just a generalized group to help talk to might help.  Praying for you and all the ladies. trish

  • Editgrl
    Editgrl Member Posts: 903 Member
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    Quite honestly

    I'm not sure I'm a group person either.  Never joined a running club when I was runniing, never have joined a cycling club.  However, I thought it would make sense to at least see what local resources, if any, there were in the area.  For a short period of time, years ago when my then-husband was going through treatment for non-Hodgkins lymphoma, we went to a support group that was for all cancers.  I'm pretty sure that that's not for me.

    On a weird, coinky-dinky note, I stopped by one of my best friend's and she told me that a friend of hers, whom I have met casually in the past, has just been diagnosed with Stage IV uterine cancer.  If there's a silver lining, her husband's career path is in health care advocacy.  In any case, I suggested this group, but apparently this woman doesn't "do the internet."  So I gave her permission to pass on my phone number should she want to talk.

    Cathy, I hope your tiling project gets finished soon.  I had my bathroom remodeled earlier in the year, and I know all too well about dust everywhere.  Unfortunately, I just found out last week that I have TERMITES!!!  Both the "good" and the "bad" kind.  I am looking at fumigation in the not too distant future, though they have said that it is not something that I need to get done immediately.  Think I will wait until after the first of the year, after chemo for that.  Not looking at having to move out for 3 days at least, and dealing with all that entails.  Like I really want to poison my house!

    Chris

  • Editgrl
    Editgrl Member Posts: 903 Member
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    Well, there you go...

    So I called the number and got voicemail, a man's voicemail, definitely not the woman on the list.  Come to find out, it's a Kaiser number.  Well, I'm a Kaiser patient and I'm pretty darn sure they do NOT have a gynecological cancer support group.  However, I went ahead, left a message explaining why I had called, and we'll see if I hear back. 

     

  • Abbycat2
    Abbycat2 Member Posts: 644 Member
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    Editgrl said:

    Quite honestly

    I'm not sure I'm a group person either.  Never joined a running club when I was runniing, never have joined a cycling club.  However, I thought it would make sense to at least see what local resources, if any, there were in the area.  For a short period of time, years ago when my then-husband was going through treatment for non-Hodgkins lymphoma, we went to a support group that was for all cancers.  I'm pretty sure that that's not for me.

    On a weird, coinky-dinky note, I stopped by one of my best friend's and she told me that a friend of hers, whom I have met casually in the past, has just been diagnosed with Stage IV uterine cancer.  If there's a silver lining, her husband's career path is in health care advocacy.  In any case, I suggested this group, but apparently this woman doesn't "do the internet."  So I gave her permission to pass on my phone number should she want to talk.

    Cathy, I hope your tiling project gets finished soon.  I had my bathroom remodeled earlier in the year, and I know all too well about dust everywhere.  Unfortunately, I just found out last week that I have TERMITES!!!  Both the "good" and the "bad" kind.  I am looking at fumigation in the not too distant future, though they have said that it is not something that I need to get done immediately.  Think I will wait until after the first of the year, after chemo for that.  Not looking at having to move out for 3 days at least, and dealing with all that entails.  Like I really want to poison my house!

    Chris

    Chris, termites on top of surgery and chemo??!!

    The saying goes that if life throws you lemons, make lemonade. I always thought that termites were all bad! See how little I know, Chris? I am sorry to hear of this new problem and hope that it can be remedied without too much disruption in your lif.

    I had both an interesting and funny experience today that I think you all would appreciate. I took today off from work because I thought that my tiling job would be finished and I could start cleaning the home. Well, my tiling job was completed but not until late today-oh, my, I am thrilled! So, I played Bingo today with two friends and won $25.00!!  I usual never win anything. When I got on line to buy some lunch, a gentleman around 70ish was standing next to me humming a tune. I said something about his cheerful mood and he told me that life is too short so we should strive to be happy. Oh, I wondered, did God send this gentle man to me too touch my broken soul?   I agreed with him without realizing the significance of what he told me. He then told me that he had survived 3 different cancers: skin, pancreatic and then he couldn't think of the name of the third one.  He then pointed downward, struggling to remember, and I guessed correctly- given his gender and age- that he had prostrate cancer.  Wow- I was impressed with his strength and fortitude. When I returned to my Bingo table to sit with my friends, I shared the story of my amazing interaction with this phenomenal man. When I got to the part where he was pointing downward trying to remember the third cancer, and before I had a chance to finish my story, my dear friend - a breast cancer survivor herself said "brain cancer"? I almost choked on my homemade chicken soup! I said, well, ah, I suppose that is a possibility.....

    I thank God above for all the joy and meaning in my life, not least of all our human capacity to find humor in the mist of incredible loss and heartache. I do often see it here, with the great courage all of you show. It's humbling and inspiring, too. 

    If I was Donald Trump, I would use some of my millions to throw a fantastic party and invite all of you and your loved ones and friends. We would celebrate life as this gentleman recommends!

    With Warm Hugs,

    Cathy

     

     

  • Abbycat2
    Abbycat2 Member Posts: 644 Member
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    Editgrl said:

    Quite honestly

    I'm not sure I'm a group person either.  Never joined a running club when I was runniing, never have joined a cycling club.  However, I thought it would make sense to at least see what local resources, if any, there were in the area.  For a short period of time, years ago when my then-husband was going through treatment for non-Hodgkins lymphoma, we went to a support group that was for all cancers.  I'm pretty sure that that's not for me.

    On a weird, coinky-dinky note, I stopped by one of my best friend's and she told me that a friend of hers, whom I have met casually in the past, has just been diagnosed with Stage IV uterine cancer.  If there's a silver lining, her husband's career path is in health care advocacy.  In any case, I suggested this group, but apparently this woman doesn't "do the internet."  So I gave her permission to pass on my phone number should she want to talk.

    Cathy, I hope your tiling project gets finished soon.  I had my bathroom remodeled earlier in the year, and I know all too well about dust everywhere.  Unfortunately, I just found out last week that I have TERMITES!!!  Both the "good" and the "bad" kind.  I am looking at fumigation in the not too distant future, though they have said that it is not something that I need to get done immediately.  Think I will wait until after the first of the year, after chemo for that.  Not looking at having to move out for 3 days at least, and dealing with all that entails.  Like I really want to poison my house!

    Chris

    Chris, keep us informed on how you are doing

    Just want you to know that I am thinking of you and hope that all goes well with your treatment and with the situation with the termites.

    Hugs,  

    Cathy

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
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    Editgrl said:

    Quite honestly

    I'm not sure I'm a group person either.  Never joined a running club when I was runniing, never have joined a cycling club.  However, I thought it would make sense to at least see what local resources, if any, there were in the area.  For a short period of time, years ago when my then-husband was going through treatment for non-Hodgkins lymphoma, we went to a support group that was for all cancers.  I'm pretty sure that that's not for me.

    On a weird, coinky-dinky note, I stopped by one of my best friend's and she told me that a friend of hers, whom I have met casually in the past, has just been diagnosed with Stage IV uterine cancer.  If there's a silver lining, her husband's career path is in health care advocacy.  In any case, I suggested this group, but apparently this woman doesn't "do the internet."  So I gave her permission to pass on my phone number should she want to talk.

    Cathy, I hope your tiling project gets finished soon.  I had my bathroom remodeled earlier in the year, and I know all too well about dust everywhere.  Unfortunately, I just found out last week that I have TERMITES!!!  Both the "good" and the "bad" kind.  I am looking at fumigation in the not too distant future, though they have said that it is not something that I need to get done immediately.  Think I will wait until after the first of the year, after chemo for that.  Not looking at having to move out for 3 days at least, and dealing with all that entails.  Like I really want to poison my house!

    Chris

    Chris

    I didn't know there were any good termites!!.  i am sure that is just what you needed right now.  Probably a good idea to put their demise off until after Christmas, and you are done with chemo.

    My community is small and rural. There is a cancer support group in the city where I get my Chemo, but I am sure that itn does not break down into specific groups.  I do know of 4 people that have had uterine cancer, but saddly they have all passed away.

      I think  like this group because I always have someone to talk to that understands what I am going through.  Freinds and family are wonderful.

    Hugs and prayers to all.

  • Editgrl
    Editgrl Member Posts: 903 Member
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    Lou Ann M said:

    Chris

    I didn't know there were any good termites!!.  i am sure that is just what you needed right now.  Probably a good idea to put their demise off until after Christmas, and you are done with chemo.

    My community is small and rural. There is a cancer support group in the city where I get my Chemo, but I am sure that itn does not break down into specific groups.  I do know of 4 people that have had uterine cancer, but saddly they have all passed away.

      I think  like this group because I always have someone to talk to that understands what I am going through.  Freinds and family are wonderful.

    Hugs and prayers to all.

    Okay, how about

    bad termites and not so bad termites.  Subterranean termites are the not so bad ones.  Those can be handled fairly easily.  I was going to have some dry rot done this fall in that area anyway, and well, you-know-what hit the fan, so it didn't get done.  And that's where the subterranean termites are.  I am getting that stuff done a week or so after my next chemo.  But...  I will have to tent for the dry wood termites.  Luckily, it appears rather contained (but ladies, we all know about how things look, don't we?!).  And that's what I will be waiting to do until after the first of the year.

    Oh, Cathy, that is a great story, one that I must share tonight with my all woman winetasting group.  Of course, I will not be drinking and believe me, I am looking forward to when I can have a glass of wine with my dinner again.

    Yeah, 2015 has not been the best year of my life so far, but I am surprisingly sanguine about things.  There have been a few moments of panic, but this board has helped immensely at easing that.  And as for the other stuff...  not worth getting worked up about.  I am fortunate.  I have a roof (as of today, anyway) over my head, food in my fridge and a great circle of friends and colleagues that make up the the soundtrack of my life.  Everything else is just noise.

    Hang tough, ladies!

    Chris

  • EZLiving66
    EZLiving66 Member Posts: 1,483 Member
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    I found a general

    I found a general gynocological cancer support group and may go see what it's all about after Christmas.  I also wanted to go to the Look Good; Feel Good group but the times have just not worked out.  

    I feel for you with your bathroom remodeling/tile project.  We did a major remodeling of our house in 2002 and I don't think I'm still over the trama - LOL!!  

    Take care,

    Eldri

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
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    I found a general

    I found a general gynocological cancer support group and may go see what it's all about after Christmas.  I also wanted to go to the Look Good; Feel Good group but the times have just not worked out.  

    I feel for you with your bathroom remodeling/tile project.  We did a major remodeling of our house in 2002 and I don't think I'm still over the trama - LOL!!  

    Take care,

    Eldri

    Try contacting Imerman's Angels

    I just learned some really good things about this group.  They "match" your specific type of cancer with a survivor and they have a large number of survivors with all types of cancer.  I believe the support is done via telephone, tho, not in person.  But they might know of other resources and there may be someone in your neck of the woods you can connect with  http://imermanangels.org/.

    I was surrounded by 3 personal friends who had UPSC for some odd reason.  I was the only one with Type 1 uterine cancer.  I have no idea how that happened, but it did.   Like some of you mentioned, our local ovarian cancer support group welcomes other gyn cancers, but I know of no specific in person support group for uterine cancers.

    Good luck. 

    Suzanne

  • Editgrl
    Editgrl Member Posts: 903 Member
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    Try contacting Imerman's Angels

    I just learned some really good things about this group.  They "match" your specific type of cancer with a survivor and they have a large number of survivors with all types of cancer.  I believe the support is done via telephone, tho, not in person.  But they might know of other resources and there may be someone in your neck of the woods you can connect with  http://imermanangels.org/.

    I was surrounded by 3 personal friends who had UPSC for some odd reason.  I was the only one with Type 1 uterine cancer.  I have no idea how that happened, but it did.   Like some of you mentioned, our local ovarian cancer support group welcomes other gyn cancers, but I know of no specific in person support group for uterine cancers.

    Good luck. 

    Suzanne

    Imerman's Angels

    I had actually checked out their website a while ago.  I may consider it.  This may be something that would be good to have already in place.

    I did receive a call back from Kaiser, and as I assumed, the gynecological cancer support group no longer exists.  Since I retrieved the voicemail message, I didn't get a chance to ask why not?  The gentleman who called back runs the all-inclusive cancer support group. Which I will probably pass on.

  • pam0422
    pam0422 Member Posts: 25
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    Do you have a local chapter

    Do you have a local chapter of Gilda's Club you could call? They offer great support services and groups at their clubhouse here in Nashville. They also offer cooking and nutrition classes.