Am I the only one who is inoperable?

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k-ann
k-ann Member Posts: 5
edited June 2014 in IBC (Inflammatory Breast Cancer)

I was dx in April 08 and am ER+PR+ and Her2-. I started Arimidex and for 8 mos it worked but recently I found two little nodules on the far side of my breast. Skin biopsy showed cancer, which my onc said means that the Armidex is no longer working and I am now doing Faslodex injections. I guess I wonder why I am not a candidate for surgery. I have been told that since the first day. It's frustrating to me because I want this thing gone! My cancer is deep in my chest muscle and my lymph nodes on both sides were involved, however, the armidex worked well for me at first and my lymph nodes are now so small they aren't even measured. I know it's odd that someone actually wants surgery, but I do, it seems to be standard for everyone, but me. It makes me feel like my case is hopeless. I haven't read about anyone on here who has not had surgery or have it in the future. I feel a little deformed.

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  • Jadai
    Jadai Member Posts: 182
    edited January 2009

    Well, I have to say that it seems to vary by oncologist.  My mom's first oncologist, who we basically fired, wasn't even considering surgery because my mom has bone mets.  The new doctor seems to be absolutely considering surgery.  Her nurse told her today that Monday is her last chemotherapy and her Dr. is either thinking surgery or just herceptin every three weeks but he is leaning very heavily toward surgery.  She has responded beautifully to the cytoxan, taxotere and herceptin.  She was diagnosed in September.  I have seen people on here that have not had surgery though.  I am sure you will hear from some of them!

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  • ibcspouse
    ibcspouse Member Posts: 613
    edited January 2009

    K Ann

    My wife Cam is not a candidate for Surgery or Radiation... She was also at Stage IV at dx, with both breast, auxiliary and superclavacle nodes.  She also has Ovarian that has not spread.  The odd thing is she is now shows no apparent disease showing on PET/CT.  So no light up in any nodes, breast, abdomen, any where.  They still won't do surgery or rads due to the the initial amount of skin involved to begin with.  She is stuck on a permanent chemo since she is tn.

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  • k-ann
    k-ann Member Posts: 5
    edited January 2009

    Thanks for responding. I was beginning to feel like an outcast! Congrats on the wonderful PET/CT scan results, news like that gives me such hope. Your wife is so lucky to have you! What a great guy. Please give her my best--our cases are similar except for the ER/PR--and permanent chemo doesn't sound like fun at all! I will eventually get to that point. My first treatment only worked for 8 mos. Eventually I imagine I will go through all the hormonal treatment and move onto chemo. Thanks again for responding--You and your beautiful wife will be in my prayers! (my prayer list keeps growing!).

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited January 2009

    k-ann,

     I know there are many ladies who did have surgery.  But the key may be that you did reach NED's after treatment.  I was told they would not do surgery unless they can get all of the disease.  I'm with you and would want it off.  I did have both my breast removed a year apart.  But I did not have IBC in the breast either time.  Both came later.

    I'm a nine time chestwall recurrence lady. I know how you feel.  There were so many points in the last three years where I had very little disease.  A node here or there.... I was lucky enough that my breast surgeon ex-boss and the local research hospital was doing a trial with a PET Scan probe.  (a tool where they prep you for a regular PET but used this hand held Pet tool) They did get out my nodes.  But they came back six months later worst.  The Pet probe failed in trial because it would pick up the contrast in our hearts too easily.  The top breast surgeron done this procedure told me. that after surgery it is very hard to find cancer do to scar tissue.  And deep into the chestwall there is nothing to lead them to the correct spot.  That why they must be able to have a tool to find all of the disease.

    Again about a year ago I got too one spot next to my lung and liver. (not in) My doctor said "see if your ins would let you do Cyberknife" and zap these places.  The Cyberknife place said they could do the procedure but ins. would not do it. Back to chemo I went.

    Hang in there we can always hope for new treatment options.

    Flalady

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  • rkt
    rkt Member Posts: 793
    edited February 2009

    Dear K-Ann,

    A lot of hospitals/major cancer centers have been reviewing patient databases and a series of papers were published last summer (MDA, Harvard, WUSTL, Northwestern) - all of them more or less said that they couldn't definitively say that there was a benefit to having mastectomy when you are stage iv, but there was 'longer mean progression free survival' for those who had mastectomy - because they can't rule out selection bias in who was selected to have mastectomy, they can't say that it improves overall survival.  I have some of the articles in pdf form - if you pm me and give me your email, I can email them to you.  I am seeing surgeon (she wrote two of the papers) when I go back in March, and will see if I can get bilat mastectomy!   They have served their purpose, and I don't need them anymore - I would rest a lot easier, knowing they were gone - in December, on the PET scan, they could find 'no active cancer' in my breast or my bones, or anywhere else - so I am hopeful I will still be same when they rescan in March, and I can see about scheduling surgery -

    Becky

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  • respin
    respin Member Posts: 280
    edited March 2009

    K-ann,

    I was recently diagnosed stage 4 right off the bat, and was told I would not have surgery.  Lifetime management, that's all.

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited March 2009

    respin,

    So sorry you had to join us stage iv ladies.  What treatment's are you having right now?

    Flalady

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  • respin
    respin Member Posts: 280
    edited March 2009

    Thanks Floridalady..

    I've just started herceptin (3 week injections) and femara...almost started with chemo/herceptin at my original dr...switched to Sloan.  Almost fell off my chair when I was offered a choice of anything other than chemo.

    I will settle for no less than living a longggggggg time.

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  • moodyk13
    moodyk13 Member Posts: 1,180
    edited March 2009

    If you remember "ibcspouse" who has been a faithful poster here in the IBC threads, he needs you guys right now.

    Cam, his wife, had been NED since November.  Last week in a matter of hours, she developed mets to the skin!!!!!  They are leaving for Houston today to try and get accepted into a clinical trial at MD Anderson.  I dont know which trial, but evidently there is one that could offer her some hope.

    In case you are unaware, ibcspouse was unfairly banned for life from this message forum!  Those of you who know him, know that he could never do anything to deserve that!  BUT, you can find him here:  http://www.breastcanswers.com/bcforum/index.php and his new ID is "camsdh".

    If you guys could take a minute to visit the new forum, perhaps register and post to him in the IBC Forum, I know it would help him get through this very scary time.

    On ibcspouse's behalf, I thank you!

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