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Stage 2 Sisters Club

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  • NisaVilla
    NisaVilla Member Posts: 505
    edited August 2013
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    Late to the party but wanted to say that I think Colt and JD should partner up and write a book for husbands about breast cancer. There is a great need for it and the 2 I browsed were poorly written.

  • pupmom
    pupmom Member Posts: 1,032
    edited August 2013
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    What NissaVilla said!

  • colt45
    colt45 Member Posts: 381
    edited August 2013
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    I am humbled by those kind words.



    My wife has mentioned this to me (which tells me that she appreciates what I've been trying to do to help).



    Maybe I should look at some books that are out there. If they're THAT bad, maybe I'd try to do a better one.

  • JDB53
    JDB53 Member Posts: 139
    edited August 2013
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    Hi all, 

    I was away from the boards yesterday. Took my wife for the final AC infusion. Now we have 4 more Taxol to do.  Half way through the chemo.  Talked to our MO and we deceided to do the rads. So that will come in November.  NisaVilla, thanks for the kind words.  When I was at the infusion center yesterday there were many husbands there, some younger, some older.  I can see the concern in thier eyes as well. I was lucky to find you kind people to help me cope.

  • gardengumby
    gardengumby Member Posts: 4,860
    edited August 2013
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    JDB53 - did your wife have the oncotype test done? 

  • JDB53
    JDB53 Member Posts: 139
    edited August 2013
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    No she didnt.  I should ask the MO about that but I got the impression that since it was a grade 1 tumor and it was 1cm, and the fact that he said it was highly dependent on estrogen (98%) and non agressive, he felt the reccurence rate would be low if we did what he recommended.  

  • gardengumby
    gardengumby Member Posts: 4,860
    edited August 2013
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    I see.  I wondered about the choice of treatment, as my Dx was similar to your wife's (except mine was Grade 2, and I had 2 instead of 3 nodes invaded).  I had no radiation nor chemo.  The no radiation was based upon only 2 compromised nodes, the no chemo was based on the oncoscore.  Please be clear, I am in NO way trying to second guess either you or your doctor, I was just curious.  Making the treatment choices is a difficult (and scary) time.

  • mjsgumbas
    mjsgumbas Member Posts: 323
    edited August 2013
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    New to the site - nice to see there's a special place for stage II. 

    Although 4 months into recovery after immediate reconstruction and 3 months into tamoxifen side effects - am I the only one who feels this isn't real?  Most days are great, some are weepy and others I can't believe what I've gone thru physically.  I don't think the emotional ever caught up - even with all the physical changes and recovery... is there something wrong with me? 

    I accepted BC for what it is, did what I had to do to get it out and get better, but I don't think I really grieved - yet?!?!

  • shoppygirl
    shoppygirl Member Posts: 110
    edited August 2013
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    Mjsgumbas

    I can understand how you feel as I feel exactly the same way. It still does not seem real. I often wonder if will ever feel safe health-wise again. My mother had bc and she had a lumpectomy then rads and tamoxifen ( she refused chemo) and then never spoke about it again. I thought if I ever get bc it will be exactly the same, no big deal! Boy was I wrong! 20 years ago they did not seem to do all the scans, testings, etc that they do now to freak you out and worry! I was so naive about the whole thing! The only thing I can tell you is what the other amazing ladies on this site tell me; it just takes time to recover from this. Be kind to yourself and let the tears flow. It really does help! Hugs!

  • gardengumby
    gardengumby Member Posts: 4,860
    edited August 2013
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    Welcome to BCO and to the Stage II group.  :)  I spent months crying every time I turned around, but everyone is different and we all line on our own timeline.  Just because you haven't turned into a puddle of tears doesn't mean that anything is wrong with you.  I can't say that I've yet got used to the "new me", as I was always pretty active and loved to walk and exercise.  Since all this stuff started I've turned into an aching mess that doesn't want to move 'cuz it hurts. 

    How's the tamoxifen treating you?  I took it for about 6 months give or take, but it wasn't for me.  I'm on an AI (letrozole) now.

  • GlobalGirlyGirl
    GlobalGirlyGirl Member Posts: 77
    edited August 2013
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    mjsgumbas - Welcome. Smile There are days I still don't believe this is real. Everything went so fast - from diagnosis to surgery. Everyone reacts differently. I was never much of a crier, but there were days when I would just sob. 

    Your body (and mind) has been through a lot, so take it easy and be gentle with yourself. And treat yourself to stuff. That helps too. Smile

  • mjsgumbas
    mjsgumbas Member Posts: 323
    edited August 2013
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    Tamoxifen is ok I guess.  The hot flashes were tolerable until about 2 weeks ago - now the night sweats on super intense.  Leg cramps are frequent and some mild knee joint issues, but all in all ok.  Seeing oncologist today, but what I've read it takes 3-6mos to stabilize.  I keep telling myself I won't complain because I didn't have to do chemo or rads.

    Has anyone had lymphedema issues?  I just started PT and am very frustrated.  It settled in my thumb & pointer finger and a little in the palm of my hand.  Currently wearing a compression glove and massage to get it under control - then a sleeve Yell - not looking forward to that.

    Thank you all for your quick responses.  I know I'm not alone Smile

  • JDB53
    JDB53 Member Posts: 139
    edited August 2013
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    Gardengumby-

    I know your not second guessing treatment. I do the same thing, I ask other women all the time who have similar dx.  One factor that had her doing chemo was that she had extra nodal tumor deposition which means it spilled out of the node into the tissue around the node. Our BS said "I got it all" but come on now, we never know that to be true as cells are so small. So as sucky as it is she opted for chemo and rads then Arimidex as she is 57.

    MJSGUMBAS-  Yesterday as we wwere sitting i the infusion waiting room, my wife looked at me and said "how did I get here'? Up till now she has been very strong and positive (unlike me).  Im wondering that when she gets through with treatment it will catch up with her, seems to happen with alot of women. Shoppygirl has the best advise!

  • maureen1
    maureen1 Member Posts: 87
    edited August 2013
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    "DITTO" to what everyone else has said...it is surreal -  some days I cry and some days I feel lucky - go figure LOL - but at least I know I've done what I can so I am "free" of BC as far as I know and have wonderful supportive people in my life...I appreciate those people and things that I took for granted before BC. I just passed one year from diagnosis and even after 3 surgeries, chemo, Aromasin and Tamoxifen it still doesn't seem real some times, I find myself thinking it's a bad dream and I'm going to wake up any time now but I look at the scars and I know it's true...so, like the rest of you I do whatever it takes to fight this beast and still live a "quality" life:) (((Hopeful Hugs))) to all...

  • mjsgumbas
    mjsgumbas Member Posts: 323
    edited August 2013
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    JDB53 - I hope your wife gets thru her journey and sees there is a great support system for BOTH of you.  Today, after a simple post on here, the tears were flowing - but good tears.  Even when you have the best of friends, family and an incredible fiance - it's hard to talk to people that aren't living it.

    @Maureen 1 - I believe it's all in your attitude I've always have PMA (positive mental attitude).  But every morning in the shower, the scars remind you.  Hopefully, it'll be easier to look in the mirror.

    Thanks & hugs to shoppygirl, globalgirl & gardengumby... I'm sorry I waited so long to get on this site.  I really thought I could do this all on my own but realize now I can't keep it all inside - I need to talk to more people that have gone thru what I am.  Thank you all - XOXO

  • NisaVilla
    NisaVilla Member Posts: 505
    edited August 2013
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    mjsgumbas - Welcome! So glad you joined this newly created forum which already is a cozy home for many. So nice you feel a part of it! My hope is that one day we organize an in-person get-together in a fun lalcr. Just read about this other forum where members have been meeting once a year and soon they will be celebrating their 5th year in Vegas... How fun would that be?!



    JDB53 - Comgrats to you and wife for being finished with another stage! My last chemo is Monday and I have mixed feelings about it. I want it behind me yet entering the "what next" stage brings up anxiety.



    Health to all, and have a nice week! Nisa

  • NisaVilla
    NisaVilla Member Posts: 505
    edited August 2013
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    Oops, I meant to write "place" not "lalcr" :) Nisa

  • pupmom
    pupmom Member Posts: 1,032
    edited August 2013
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    Mjsgumbas, very glad you found the thread! My recovery, physical and emotional, would have been much tougher without BC.org. I'm still not 100% (particularly regarding some irritating reconstruction issues), but so much better. My husband has been wonderful through all this, but there's simply nothing like sharing your deepest fears and anxieties with people who are right there with you in the trenches. 

  • JDB53
    JDB53 Member Posts: 139
    edited August 2013
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    Thanks Nisa, the what next step for you is getting your life back and being healthy!

  • gardengumby
    gardengumby Member Posts: 4,860
    edited August 2013
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    Yorkie - what reconstruction issues are you having?  I though I had just about every issue imaginable!! 

    When I went in for my last PS visit he suggested a few more "adjustments".  I just said "no" - very politely, mind you, but "NO"!! I am soooo through being poked and prodded and cut on and "adjusted".   Unfortunately, I now seem to have frozen shoulder - but not on the same side.  Nonetheless, the pain is fairly severe, and there's a possibility of needing surgery.  I told hubby that I'd rather deal with the pain for awhile.  I don't want any more cutting done.

  • pupmom
    pupmom Member Posts: 1,032
    edited August 2013
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    GG, it has to do with the nipple reconstruction and areola tattoo. The nipple had gone down by about half, post recon, as of two weeks ago. At that time I had a new tattoo artist try to fix a bad areola tattoo job her predecessor had done on me. Anyway, she pressed hard on the nipple and pushed it practically flat with the breast. Frown

    I have a call in to my PS to see if she can redo the nipple. Hoping she can. If I look at it directly you can't tell. But sidewise it looks flat. I don't like that. Want it to look as natural as possible. Sigh. As others have said, bc, the gift that keeps on giving.

  • gardengumby
    gardengumby Member Posts: 4,860
    edited August 2013
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    aahhhh - I've got the exact same problem.  Frown  Pretty much completely flat to my breast.  I'd like it to look as natural as possible, but figure that with the scar lines running around, it was pretty obviously not natural anyway Laughing and like I said - sick to death of poking, proding and cutting.  Also, the tattoo HURT, so I don't want to do it again.  I figure I must be allergic to the Aquaflor stuff, as when I'd put it on, I'd practically scream it hurt so bad.  I had to go to A & D ointment.

  • pupmom
    pupmom Member Posts: 1,032
    edited August 2013
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    GG, I know what you mean. I have a long scar scross the breast, but I'm going to give this nipple thing one last shot. I've read it can sometimes be done with a local in the hospital or even office. Don't know if I'm willing to go completely under again for the side view of a nipple.

  • gardengumby
    gardengumby Member Posts: 4,860
    edited August 2013
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    my nipple was done in the office with a local.  as were the tattoos, of course.  Did your tattoo hurt?  They told me it was really weird, but it didn't hurt where they were doing it - it hurt up near my shoulder.  poor messed up nerves!!

  • pupmom
    pupmom Member Posts: 1,032
    edited August 2013
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    They deadened me pretty well. Hardly felt a thing. But the areola tattoo on my bc side is too big compared to the other side. So I went back to have a redo, but in the process she squashed my nipple down to flat. The tattoo nurse wants me to come back to finish getting rid of the oversized tattoo, but I don't know now. If I get a new nipple I don't want her squishing that one down too!

  • gardengumby
    gardengumby Member Posts: 4,860
    edited August 2013
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    I think I squished my own...  I have a tendency to sleep on that side...  :)

  • pupmom
    pupmom Member Posts: 1,032
    edited August 2013
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    I think I will be REALLY protective if I get a new one. Maybe I should shop for an iron bra! Laughing

  • gardengumby
    gardengumby Member Posts: 4,860
    edited August 2013
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    My oh my!!!  now THAT would be comfortable!!  NOT!!!!!

  • pupmom
    pupmom Member Posts: 1,032
    edited August 2013
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    Yeah, I will have to consider which I value more, a nipple or my sleep!

  • gardengumby
    gardengumby Member Posts: 4,860
    edited August 2013
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    sleep for me.  Definitely sleep!!