Post treatment Support

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joyboy63
joyboy63 Member Posts: 8
in Breast Cancer #1

I am trying to find a support group for people that are one year or so post treatment.  I'm having a lot of problems dealing with the emotional fallout of being diagnosed with cancer.  I am in process of getting breast reconstruction which has been a long and upsetting process.  I have had two staph infections since I started reconstruction in June.  I had implant surgery in December but have recently had to have one removed on my radiated side.  I am dealing with elevated liver enzymes and seeing a specialist to watch that.  I have problems opening up to others that do not know what I am going through.  To make a long story short, if anybody knows where I can join a post treatment support group online without having to go through thousands of entries I would really appreciate it.

Comments

  • Pink Rose
    Pink Rose Member Posts: 493
    #2
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    Hi Joyboy63!  This site, for

    Hi Joyboy63!  This site, for me, has been very helpful, as, everyone here knows exactly how we feel.  They've been there, done that. 

    I had a lumpectomy, followed by radiation and am doing well now.

    I am sorry for what you've had to go thru.  I do understand how it is hard to open up to others that haven't been on this journey as they just don't understand.  It isn't their fault, but, unless you've been in our shoes, I just don't think it is possible for them to understand. 

    I hope that this site can help you.  There are also a lot of great survivors on breastcancer.org.  That site is divided into many different groups, and, you may find one there that suits you.

    Are there any bc support groups at your hospital or cancer center? 

    Good luck to you and keep posting so we can hopefully help you.

    Hugs, Rose

  • cinnamonsmile
    cinnamonsmile Member Posts: 1,187 Member
    #3
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    You could try asking your

    You could try asking your local cancer clinic if they know of any support groups. Or you could call the American Cancer Society 1-800-227-2345 and ask if there are any support groups in your area.

    You could also try seeing a counselor that has experience with cancer patients. I was seeing a counselor back when I was diagnosed with cancer (but for something else) but he was honest enough to tell me that he really didn't have the experience I needed. Maybe your local cancer clinic or ACS could help with that too.

     

    In the meantime, CSN.cancer.org has a chatroom that has lots of different people in it. I go their frequently and there is a nice group of people that chat in their. We chat about everything from cancer to our lives, to recipes, grandkids, etc. You could check it out.

    You can acess it by clicking CHAT in the left hand part of the screen in the top RED box. 

    Or you can access it on the home page. In the BLUE section called CONNECT AND COMMUNICATE. Scroll down to CHAT and click it. 

    I  hope you can find something to comfort you

  • telecomjd
    telecomjd Member Posts: 66
    #4
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    Check with your hospital or your doctor

    I have a wonderful internist, and she recommended a counselor to me.  His practice includes a woman who specializes in helping families and individuals with cancer.  I've also joined a support group at my local hospital.  We're all in different places in treatment, but the group is specifically for women who were diagnosed at early stage.  We lift up the newbies, while swapping stories about being further out in the process.  I'd also try the breast care treatment navigators who may have helped you when you were initially diagnosed.  They all seem very plugged into the best nutritionists, physical therapists, counselors, etc.

    I hope you find some relief.  This is a terrible struggle.

    M

  • ladyg
    ladyg Member Posts: 1,577
    #5
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    Joyboy

    I highly recommend this site. We have all been there in one way or another. We are all good listeners and can offer ideas that come from our own experiences.  If you prefer meeting and talking face to face with others then I would also recommend asking at your cancer center.

    Hugs,

    Georgia

     

  • hope4thebest
    hope4thebest Member Posts: 108
    #6
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    glad you found us,

    Hi, I can relate, emotional fallout is a different term but very appropriate.  It is hard getting used to our reality, and expressing it to others.  I have found online support to be effective.  Our individual stories are all unique but the web lets us find others who share common issues.  Another resource I have used has been the local bookstore.  You can consult with different books/viewpoints and they usually have a list of organizations in the back.

    I also am post treatment, and can confirm it is a real struggle.  We can get through this.  Even though we have not experienced your personal battle, some women on here will have very similar sentiments to you.  I hope you have the patience and strength to find them.  You may also find this support in a form that is not necessarily 'cancer-related'.  I tried a church prayer group last year, and it was very good for me at that time.  Keep an open mind.

    Annie

  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #7
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    Thinking of you..
    Denise

    Thinking of you..

    Denise

  • joyboy63
    joyboy63 Member Posts: 8
    #8
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    Thanks for all of your

    Thanks for all of your comments.  I greatly appreciate it and it is always nice to know that I am not alone!

    Thanks again,

    Joy

  • Elleirbag123
    Elleirbag123 Member Posts: 3
    #9
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    Hi,
    I'm sorry that you are

    Hi,

    I'm sorry that you are going through such post treatment difficulties and I just want to give a hug and say that I really do understand some of what you are going through.

    After being diagnosed with TNBC in November 2009 I had right-side mastectomy and about 2 months later completed chemo treatment 2 and a half years ago.  While I would love to say that I stood up from that chemo couch on that last day and danced off into life there were a number of issues that I found very challenging to deal with in this very fragile time in my life.  One of them was breast reconstruction.  Being a separated mom of 2 young adult daughters it was not the emotional threat to my femininity of breast cancer and a mastectomy that disturbed me but the sheer discomfort during those first days and weeks after surgery with that darn drain seeming to be always in the way.  Thank goodness for those pain-killers!  Sleep was a good friend as well as my wonderful and faithful dog who just lay quietly on the floor beside my bed as if to say "I'm here for you!"  

    Then after a number of follow up visits to inject a little more fluid into the breast extenders I was starting to feel better and life was good again!  At the doctor check out one day I hear the lady ask me what day I would like to schedule surgery for.  Excuse me, surgery?  I had no idea you had to go back and have more surgery to have the extenders taken out and the permanent implants inserted once the skin had extended correctly!  Ooookay!  I now have a collection of 'care cushions' that I received from those nice volonteers after each surgery!  Well, there was also that issue to be fixed when I woke up one morning and the new breast was under my arm!  The cushions are cute though!

    Hey!  I'm alive and so appreciative of every minute of it whether alone or with family, friends, and those wonderful animals that add to our lives!

    Do something nice for yourself - you deserve it!

     

     

     

  • Elleirbag123
    Elleirbag123 Member Posts: 3
    #10
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    Hi,
    I'm sorry that you are

    Hi,

    I'm sorry that you are going through such post treatment difficulties and I just want to give a hug and say that I really do understand some of what you are going through.

    After being diagnosed with TNBC in November 2009 I had right-side mastectomy and about 2 months later completed chemo treatment 2 and a half years ago.  While I would love to say that I stood up from that chemo couch on that last day and danced off into life there were a number of issues that I found very challenging to deal with in this very fragile time in my life.  One of them was breast reconstruction.  Being a separated mom of 2 young adult daughters it was not the emotional threat to my femininity of breast cancer and a mastectomy that disturbed me but the sheer discomfort during those first days and weeks after surgery with that darn drain seeming to be always in the way.  Thank goodness for those pain-killers!  Sleep was a good friend as well as my wonderful and faithful dog who just lay quietly on the floor beside my bed as if to say "I'm here for you!"  

    Then after a number of follow up visits to inject a little more fluid into the breast extenders I was starting to feel better and life was good again!  At the doctor check out one day I hear the lady ask me what day I would like to schedule surgery for.  Excuse me, surgery?  I had no idea you had to go back and have more surgery to have the extenders taken out and the permanent implants inserted once the skin had extended correctly!  Ooookay!  I now have a collection of 'care cushions' that I received from those nice volonteers after each surgery!  Well, there was also that issue to be fixed when I woke up one morning and the new breast was under my arm!  The cushions are cute though!

    Hey!  I'm alive and so appreciative of every minute of it whether alone or with family, friends, and those wonderful animals that add to our lives!

    Do something nice for yourself - you deserve it!

     

     

     

  • missrenee
    missrenee Member Posts: 2,136 Member
    #11
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    Elleirbag123 said:

    Hi,
    I'm sorry that you are

    Hi,

    I'm sorry that you are going through such post treatment difficulties and I just want to give a hug and say that I really do understand some of what you are going through.

    After being diagnosed with TNBC in November 2009 I had right-side mastectomy and about 2 months later completed chemo treatment 2 and a half years ago.  While I would love to say that I stood up from that chemo couch on that last day and danced off into life there were a number of issues that I found very challenging to deal with in this very fragile time in my life.  One of them was breast reconstruction.  Being a separated mom of 2 young adult daughters it was not the emotional threat to my femininity of breast cancer and a mastectomy that disturbed me but the sheer discomfort during those first days and weeks after surgery with that darn drain seeming to be always in the way.  Thank goodness for those pain-killers!  Sleep was a good friend as well as my wonderful and faithful dog who just lay quietly on the floor beside my bed as if to say "I'm here for you!"  

    Then after a number of follow up visits to inject a little more fluid into the breast extenders I was starting to feel better and life was good again!  At the doctor check out one day I hear the lady ask me what day I would like to schedule surgery for.  Excuse me, surgery?  I had no idea you had to go back and have more surgery to have the extenders taken out and the permanent implants inserted once the skin had extended correctly!  Ooookay!  I now have a collection of 'care cushions' that I received from those nice volonteers after each surgery!  Well, there was also that issue to be fixed when I woke up one morning and the new breast was under my arm!  The cushions are cute though!

    Hey!  I'm alive and so appreciative of every minute of it whether alone or with family, friends, and those wonderful animals that add to our lives!

    Do something nice for yourself - you deserve it!

     

     

     

    Hi Joy

    I definitely needed therapy during and after treatment.  I started with an individual psychologist, which was okay, but I needed more support from people who were where I was (cancer patients).  I started attending The Wellness Community group therapy sessions, which have been wonderful.  I go for 2 hours every week and have been going for over a year.  I was rediagnosed at Stage 4 recently, so my group therapy sessions are more important than ever.  The Wellness Community is nationwide, but not in all areas.  I highly recommend it.  As others have said, the American Cancer Society may be able to help you find groups in your area.

    I've just found that even though I have a wonderful support system of family and friends, unless you've been where we are, there are some things that people just don't get.  I wish you good luck in finding a good nurturing support group for yourself.

    Hugs, Renee

  • joyboy63
    joyboy63 Member Posts: 8
    #12
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    missrenee said:

    Hi Joy

    I definitely needed therapy during and after treatment.  I started with an individual psychologist, which was okay, but I needed more support from people who were where I was (cancer patients).  I started attending The Wellness Community group therapy sessions, which have been wonderful.  I go for 2 hours every week and have been going for over a year.  I was rediagnosed at Stage 4 recently, so my group therapy sessions are more important than ever.  The Wellness Community is nationwide, but not in all areas.  I highly recommend it.  As others have said, the American Cancer Society may be able to help you find groups in your area.

    I've just found that even though I have a wonderful support system of family and friends, unless you've been where we are, there are some things that people just don't get.  I wish you good luck in finding a good nurturing support group for yourself.

    Hugs, Renee

    Hello again,
    Renee- is there

    Hello again,

    Renee- is there a website for the wellness community?

    Thanks,

    Joy

  • joyboy63
    joyboy63 Member Posts: 8
    #13
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    Update on me and any advice

    Update on me and any advice would be great!

    As I mentioned above, I had implant surgery on Dec 26th after undergoing tissue expanders, staph infections for the past 6 months.  On the 21st of February, I had a staph infection and they had to take my implant out because it was contaminated.  They went through my old scar that was the problem with the other staph I had.  On February 24th my skin opened up, again in that same spot and I had to have the implant taken out.  That was February 24th and during this past week I was having leakage (in that same area again) and was told yesterday (Mar 15th) that I will have to have another surgery to clean up that area and put a drain in.  I don't know what to think and what bothers me (which it shouldn't) is the thousands of dollars this is going to cost even though I have good insurance.  I have decided to go have a second opinion but have already been told that I cannot change drs.

    Thanks for any input on this!

    Joy

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