How do you discuss 3rd BC DX in support group meeting?

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puddingirl84
puddingirl84 Member Posts: 120
edited June 2014 in Second or Third Breast Cancer

Hi all,

My third breast cancer was found November 23rd, 2009. This will be my third DX of BC in four years.( read my bio) I was frantic, panicked and anxious. I was too numb to cry. I went running to my local breast cancer support group. I compared myself to an alcoholic that might need a meeting when he feels he is going to have a drink. I needed my group that day. And when it was my turn to speak, I told them what had happened and broke down and started to cry. I cried buckets of tears. There are also two young women in the group who have just recently been diagnosed stage IV. There was also a young woman there that night for the first time.

I was told by the facilitator that my story would scare new comers away because BC recurrences and 2nd and 3rd breast cancers were out of the ordinary. She said that my situation was extremely uncommon.  She said that she had to maintain safety in the group because my stories could lead to someone having an anxiety attack. Her statements basically left me feeling like a cancer freak.

I don't want to go back, but I have formed some deep friendships with a number of the women there. I was looking forward to going to group while having treatment for this 3rd cancer. (BMX & Chemo)

Should I just say F---it, and find another group? I am extremely depressed, would really welcome some feedback. 

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  • baywatcher
    baywatcher Member Posts: 532
    edited January 2010

    I think the facilitator was wrong. It is a support group not a party. If you can't express your feelings there, then where??

    The first night I went to my group, I broke down when it was time to introduce myself. Everyone understood because everyone had cancer. Does your facilitator have cancer? I bet not.

    If the group helps you, I would continue to go. I am sorry that your facilitator is so unqualified to run the group. Maybe it was her that was having the anxiety attack. I am sure with your experience, you will be able to help others.

    Good luck to you. Cancer sucks!

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  • Makratz
    Makratz Member Posts: 12,678
    edited January 2010

    I agree, the facilitator was wrong.  If you enjoy the group, which it seems you do, then go back.  So sorry to hear your story.  I hope and pray for the best for you.

    xoxo

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited January 2010

    I am going to be all un pc here, but why is 3rd bc scarier than stage 4?

    That's bs and I am annoyed you are being treated this way.

    It makes no sense.

    You are in NJ, we have a very nice support group at the lower Manhattan YSC, (it is geared to under 40's tho), the next meeting is on 1/14.

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  • LRM216
    LRM216 Member Posts: 2,115
    edited January 2010

    Puddingirl- First, I want to offer my shoulder for you to lean on - I am so sorry that this beast has come back not twice, but three times.  It is my personal opinion that you should keep going back to the same group as you have become close to some of those around you.  I think it's the dang facilitator that needs to go.  My God, there but for the grace of God go any of us, and I too am a Stage 1.  If the facilitator is trying to protect them, she's in the wrong job - nothing can prevent any woman from this beast, and least of all any one of us that has already gotten the dreaded diagnose.  If I were in your group, having been diagnosed in late Feb of 2009 and just recently completed all my treatment, I would have thrown my arms around you and given you all my support.  I am so sorry this has happened to you, but remember YOU ARE NOT A CANCER FREAK, and no other "sister" would ever think that of you.  God bless.

    Hugs,

    Linda

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited January 2010

    if you put the two of us together you will get one great dessert!

    (cookie gal and puddingirl)

    Just trying to give you a smile Wink

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  • jancie
    jancie Member Posts: 2,631
    edited January 2010

    I go to a breast cancer support group every other Monday.  We have 2 ladies in our group that are Stage 4.  We have one lady who had a recurrence 10 years after her first diagnosis.  We also have a lady that was diagnosed 13 years ago but still comes to help support the other women.

    We have to go through introductions every time a new person joins the group.  Most of the time they are crying but we are there to support them, hug them, pass the kleenex, etc.

    Yes, when you first go to a support group after being newly diagnosed, it is scary to hear that the cancer can come back, it can go to Stage 4, it can just be another reoccurence in the other breast but it is better that we know up front what we are dealing with so that we can digest the information.

    To play around with kid gloves when dealing with this disease is an injustice.  Had it not been for the wonderful ladies on this board I would have never known that my cancer may come back one day, it may not, I may end up Stage 4, but then again maybe not.  But at least I have the knowledge so I am not living in a dream world that I am ok once I complete treatments and I never have to deal with it again.

    I think you should talk to the facilitator one on one and even print out these responses and show them to her.

    We have women that come in with the impression that masectomy is their only option when there are cases where lumpectomy and radiation can also be an option for them.  Many of us newly diagnosed think as first reaction "cut them off - get rid of the cancer" instead we should sit back and review our options and not be in such a rush to make a life changing decision.  Thanks to Beesie I learned that I could have a chemo, lumpectomy, and radiation and have the same recurrence percentage rate if I had a masectomy instead based on my path report, the type of cancer I have, no node involvement, etc.  I can't thank Beesie enough for responding to me when I was originally diagnosed.

    Next time the facilitator worries about someone having an anxiety attack when hearing what is actual reality to many of us - tell her that she should tell the newcomer to get a prescription for valium Laughing  because the anxiety attacks never go away.  I went through one last week having my first follow up mammogram and then this Monday having a petscan and you bet....I popped some valium!

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  • puddingirl84
    puddingirl84 Member Posts: 120
    edited January 2010

    Thank You all for making me feel human again. I didn't expect such a positive response, and so soon! It's nice to know that angels really do exist. And that's what you women are to me now.

    I am new to the boards,and hopefully over time will make even more friends.

    Cyber Hugs to all of you. 

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  • cp418
    cp418 Member Posts: 7,079
    edited January 2010

    What the support group facilitator said to you is wrong on so many levels. Is is possible for you to join a different support group and certainly with a different facilitator?  She does not sound like a certified qualified social worker - therapist to me.  PM - me if you want information on another Cancer support group - -  maybe it is close for you to attend 1-2 times per month.

    Know that you can come here and we will understand and listen.  Hugs to you.

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  • lvtwoqlt
    lvtwoqlt Member Posts: 6,162
    edited January 2010

    Pudding, The facilitator was completly off base. Our local group invites anyone to attend. I started attending the local support group 2 yrs before my official diagnosis with my mother (dx 2001). I had pre-cancer ADH and they took me in even though I didn't have cancer the wonderful group too me in because I had breast surgery for a scare. There is nothing like a group of women to calm nerves because they know exactly what you are going through. You wouldn't believe some of the questions that are asked around that table. We laugh and cry together. When I was finally diagnosed with DCIS 2 yrs later, one of the lovely stage 4 women took me into a private room and showed me what her bilat scars looked like so I wouldn't be so scared.

    Sheila

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  • BMac
    BMac Member Posts: 650
    edited January 2010

    What????  I can't believe what that facilitator said to you.  It's a support group.  You needed support.  End of story.  Plus you've been going for awhile and have formed friendships.  I agree, she should go.  She's obviously not qualified to lead a group such as this.  Wow!

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  • She
    She Member Posts: 503
    edited January 2010

    Puddinggirl, you're not alone here.  This whole third time thing really sux.  I'm still learning to deal with it myself.  I was officially dx in June and am 4 mths post bilat mast & DIEP.  I don't feel like there's anywhere on this site for me now, other than the recon thread.  Having multiple primaries is a place all its' own and there are not that many of us.  It isn't Stage 4, but it's also a whole lot different than having one primary or a primary/non-mets recurrance.  It's rather unsettling to feel one's body is a pertri dish for breast cancer. 

    We're all here to support each other.  After 3 primaries how does one encourage a newbie - 13.5 years survival at Stage IIB Tripleneg with micromets to nodes and in the next sentence you say oh and by the way I've had two more primaries since then.

    In your particular situation, the 'don't scare the newbies' mentality was already around at my first dx.  It's understandable as we've all been freaked out newbies and have personal experience with how overwhelming the whole BC experience is.  Having said that, a support group is just that, it is for all members.  Your facilitator was out of line.  If you haven't had a private conversation with the facilitator you should.  Give her the opportunity to correct her wrong.  If she doesn't agree her behavior was inappropriate, take it to the next level.  I'd be tempted to bring it up to the whole group at a meeting.  Essentially her comments have affected the whole group in that you're a long time member.

    Moving forward for me - there is nothing else I can do surgically and I had a close margin. I'm going to life my life to the fullest now, in this interlude between #'s 3 and 4.  I think it's probable that after 3, there will be a 4th.  I'm hoping it will follow the trend of doubling the length of time between each primary which means I should have about 16 years... by then I'll be old .. lol's

    Don't let cancer have more than it's already taken.  Laugh as hard and as often as you can.  I changed my original screen name from NED No Expiry Date because I thought maybe it wasn't a good idea to taunt cancer.  I shoulda left it alone because I got the 3rd primary after I changed it...lol

    Bottom line, we all cope with this disease differently because we're individuals.  What works for me may not work for you.  By sharing our experiences we can all learn, taking the information and fitting it to our own personal needs.  Knowledge is power.

    Wishing you all the best, She

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  • puddingirl84
    puddingirl84 Member Posts: 120
    edited March 2010
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