Attending First Support Group: Stage III and IV Combined

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BunnyHunny
BunnyHunny Member Posts: 2
edited August 2015 in Stage III Breast Cancer

Hi All,

I'm a little over a year out from diagnosis (at age 31) and finally feeling ready to attend a support group. The local wellness center separates the two support communities into Stages 0, I, II and Stages III, IV. As a Stage III-er, I can somewhat understand why the stages are grouped this way, as Stage III is more likely than the earlier stages to metastasize (I also tend to experience stage jealousy, though I'm working on it, and wouldn't be able to listen to someone diagnosed at Stage 0 talk about their fears without judgement), but I'm not ready to be lumped in with Stage IV yet. I'd imagine that those at Stage IV/diagnosed with mets don't want to hear someone at a lower stage whinge about their problems, either. Progression/recurrence is constantly on my periphery and I'm scared that hearing stories will ramp up my already crazy paranoia.

For those attending support groups, how are your groups set up? Is this a normal grouping and I should just get over it? What do you get out of your support group? Did you attend a support group before and decide it wasn't for you?

Any insight would help.

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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited May 2015

    I went to a few meetings. They had survivors from ALL types of cancer, and ALL stages there. Women only, men had their own meetings. Long and short term. They were all very nice ladies, but I feel I get more support here on BCO than I ever would from there. And I don't have to wait a month!!!

    But that's me. You may enjoy it.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2015

    I think that's a really weird setup. After all, the difference between Stage II and III could only be one node or one cm. I'd be uncomfortable in that sort of support group myself.

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  • Lily55
    Lily55 Member Posts: 3,534
    edited May 2015

    That would freak me out too........trust yourself if you don´t think it feels right, but i also don´t think it would be that helpful for stage IV people either............

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2015

    What a very strange set up!  Personally, I would not attend that meeting.  Stage 4 ladies have an entirely different set of issues than any other stage. 

    I attended a support group once.  It was for breast cancer survivors.  I didn't care for it at all.  It seemed the women were trying to out do each other on just who had it the worst!  Really?  Who would want to "win" that competition????

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  • clariceak
    clariceak Member Posts: 752
    edited May 2015

    That sounds very uncomfortable on many levels. This board is the best support I ever received. I'm not sure if I would attend a group for both Stage III/IV.

    I have a friend who was Stage IV who was dxed at the same time as me and made it very clear there is no way a lower stage could understand what they are going through. I respect their space.

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  • BunnyHunny
    BunnyHunny Member Posts: 2
    edited May 2015

    Thanks for all of your input. I don't feel so crazy for thinking it is a weird set-up. I may go just to say I tried, though.

    Jillian777, this is what I was a bit worried about to begin with, what with the constant comparisons and trying to be the worst off. I met a few women through chemo like this. Most were perfectly lovely but a couple only wanted to talk about what would/could go wrong with future treatments, etc.

    Spookiesmom and clariceak, I agree about these discussions boards. I've been a long-time lurker and the various threads have gotten me through so much already.

    Hope you all have a wonderful weekend.

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  • caaclark
    caaclark Member Posts: 936
    edited May 2015

    I attended a support group for a short period of time.  I would not want to go to one that was III and IV.  I also was freaked out by the thoughts of mets.  During one of my first groups we went around the circle and people told names and stages, treatments, etc.  Each person (except me) was stage 0-2. Almost all of them used the phrase, "Thank goodness my lymph nodes were negative".  Then they came to me.  I introduced myself and said I was stage III with 6+  nodes and 2 of them had extra capsular extension.  Every person gasped like they were watching a horror show.  I went back one more time and decided it was not for me.  I did go to a young women's support group for a while and that was a little better.  Eventually I decided that I was the one giving the most support (I'm a counselor), rather than getting it so I dropped it. 

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  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited May 2015

    BunnyHunny...I received an email invite to the support group you're referring to; we must live pretty close to one another.  I was so surprised I emailed the director and asked why they were grouping 3's and 4's together.  I can't exactly remember the response, but it was that Stage 3/4 had more issues in common than grouping all stages together.  This sort of freaked me out--I couldn't imagine attending a support group and waiting for the other shoe to drop, so to speak.

    I tried a church-based, general cancer support group one time.  It was not for me.  Like others have said, I find BCO to be the best support group for my needs. 

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  • wintersocks
    wintersocks Member Posts: 922
    edited May 2015

    I too would feel very uncomfortable with that set up. It ls like they were saying you stage iii's are heading for the IV's, so better get used to it. I cannot imagine how the IV's might feel with a somewhat lesser dx'd in attendance? .

    I am aware of where I might be heading and I don't need to be shown that. I mean depressing and terrifying all at once.

    I have not been to any support group as a stage iii'er, it would remind me of being at school and wearing the wrong dress. everyone looking at me.

    i too stick with BCO. Here I can read or not read as suits my mood, my dx and my tx plan. I can avoid those who I might be upset by and feel close to and supported by others. I can also offer support and friendship to those whose situation feels like my own.

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  • Momine
    Momine Member Posts: 7,859
    edited May 2015

    I would totally suck at support group. I am not the kissy-huggy type and I tend to approach the whole cancer thing with black humor, which usually doesn't go over well in that type of context. I find, like others, that BCO suits me very well. I can post when I feel ready, I can ignore the things that I don't feel up to talking about or where I don't think I can offer anything useful.

    However, it would be nice to have a local network in order to track down doctors, treatments, LE sleeves and that sort of thing. So far I have not really found anything like that.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2015

    Exactly wintersocks! I would feel depressed and doomed to be automatically grouped with Stage IV, but also feel like I couldn't speak candidly about my recurrence fears because hypothetical future mets obviously does not trump real mets.

    I do go to one support group for young adults with all types of cancers. We have a hodgepodge of different cancers - sarcomas, myeloma, lymphoma, leukemia, melanoma - in fact, I'm the only one with BC so far. But it works because we have similar life experience, not similar diagnosis/staging.

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  • kathleen1966
    kathleen1966 Member Posts: 793
    edited May 2015

    Stage IV is terminal (even though a person could live for 20+ years, they are usually in treatment for life) and stage III is not. This really needs to be brought to their attention. It shows a profound lack of understanding on what these stages need. I would NOT go. I would attend the lower stage meetings instead. it is not fair to either stage to have it set up this way. They should know this.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2015

    I agree with everyone's opinion that 3's & 4's should be separate. I also agree that I have found the most support and friendship right here on these boards ! It's scary enough to hear or read about so many with cancer these days, let alone sit and compare horror stories with a support group who don't offer much 'real' support.

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  • leggo
    leggo Member Posts: 3,293
    edited June 2015

    That is a very strange set-up. I don't know what they're thinking?? I was just a little younger than you when initially diagnosed. I have to admit I didn't take it very well so the doctor brought a social worker into the room. She made it pretty clear that the support group they had in place would further depress me because all the bc patients there were well into their fifties and sixties. Thank gawd she had the foresight to warn me. I can't even imagine having to deal with Stage IV stories on top of that. I probably would have parked my car on the railroad tracks. 

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  • Momine
    Momine Member Posts: 7,859
    edited June 2015

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  • victoriasecret
    victoriasecret Member Posts: 333
    edited June 2015

    This stage 3 forum was my support group 6 years out I am still in touch with many of the girls !...so easy to attend meetings just log on and many times in the beginning I was talked off the "ledge"...dont come back as often but do drop in ..Its funny I asked for a mentor at first and our cancer center could not provide me..found it here !PS- my center also had 3 with 4 s .


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  • Darumama
    Darumama Member Posts: 135
    edited August 2015

    My breast surgeon told me she was not a big fan of support groups because of how they put differing stages together. My younger sister is stage iv and while we have certain treatments in common, it's difficult for us to connect in terms of how this is changing our lives. It doesn't compare.


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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2015

    Sorry for posting on the stage 3 board, but the topic name pulled me in. As a support group for support alone, I would be uncomfortable as a stage 4 to be lumped in with stage 3's. In part, I wouldn't want to scare all the stage 3's in the room, and I wouldn't want that look that comes with being that person that no one wants to be in the future as someone else discussed above. There are definitely different concerns between the 2 groups; none are more or less valid, just different. For a support group alone, I think I would find it easier to be with either just stage IV breast or all cancers of all stages like bad_at_user mentioned.

    Ironically, though, I have found through BCO a wonderful group of women that all live in my area, and we try to get together 4-6 times a year. Though I am the only stage IV there, every possible type of breast cancer, reconstruction, and treatment options are represented. I have never felt like the "scary stage IV" person there. We don't call ourselves a support group, but I know that we would all be there for each other. Maybe it works because we don't do the support group thing; we just all became friends, who knows?!?

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  • Momine
    Momine Member Posts: 7,859
    edited August 2015

    Nbnotes, please don't be sorry. It is good to have your point of view. I think you may be right that "unofficial" support groups can be more flexible in a way.

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