Starting chemo

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crabbycamper
crabbycamper Member Posts: 20
edited December 2014 in Just Diagnosed With a Recurrence or Metastasis

Diagnosed with left chest wall recurrence 9/2014. My backstory: normal mammo early Jan 2012; marble size lump appears OVERNIGHT later that month, 2012 for which I had bilat mastectomy and 1 sentinel node showed ITC (isolated tumor cells). MO from 2012 advised tamoxifen which I was not excited about, so got 3 other opinions who said no tamoxifen not unreasonable. FFWD to 9/2014: same marble like mass re-appears on left chest wall ( I did not do reconstruc) for which excisional biopsy done, mass was 7mm. Surgery done 9/2014 was left chest wall excision and left axillary lymph node dissection: path showed residual cancer (the excisional biopsy got most of the recurrent cancer) and 8 lymph nodes clean for cancer. Have seen a bunch of MO's and RO's. Everyone says I need XRT + hormonal blockade. Two MO's advised chemo. Underwent another surgery 10/2014 to remove the residual cancer, and have been agonizing over XRT/chemo. Have decided to do all of the above--chemo (AC + Taxol), XRT, hormonal blockade--because despite oncotype dx=9 and "favorable" prognostic markers, I feel this is my last chance at cure (or that is how it was presented to me by the 2 MO's). In recurrences--which no one expects---there does not seem to be clear cut answers and treatment is individualized. NCCN guidelines state for local recurrence XRT + hormonal blockade. I am just so angry at my cancer for coming back, not behaving according to oncotype, so I am going to get back at it with everything available. Any thoughts,advice, etc MUCH appreciated.

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited December 2014

    CC - No advice, but just wanted to pop in to say how much IT SUCKS that you had this recurrence. I think I'd throw everything at it too if I were in your shoes. I hope chemo goes ok for you. PM me if you ever need a listening ear. Gentle hug.

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  • crabbycamper
    crabbycamper Member Posts: 20
    edited December 2014

    Thanks Farmerlucy. I was just typing a long post about how useless the oncotype dx was for me and the entire post disappeared with me accidentally touching a key. Guess it was not meant to be, and maybe a good thing since it was more an oncotype rant than post. I know skipping tamoxifen was not a good idea however I truly thought I had done everything "right" by getting bilat mastectomy (why save the normal boob when my first and only mammo MISSED the cancer). I have been on this site and the internet near nonstop since 9/2014. In the world of cancer (or at least my world) 1+1 does not equal 2, but whatever my cancer feels like doing, which is not "following the rules." Another disconcerting piece of data I found online is that Luminal type A cancers double every 180 days, which means the chemo may be useless. Just when I'm crushed by the weight of conflicting info and my medical story, I step back and think what is the NO REGRETS approach, because I cannot fathom doing this again. So I am scared out of my mind about chemo, but even more scared (is that possible??!!) of another recurrence. THANK YOU! PS: I can only send so many PM per day on this site

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited December 2014

    we have similar org surgery dates and dx so that drew my eye to you. My onco type was 3 and I didn't want to take T either. My onc really pushed it for me due to fam history and still I didn't start for a year. Here is the no regret approach my friend - do the best you can at the time. That is all you can do. I'm gonna stay in touch, ok? Ugh , I hate this s@&$.

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  • crabbycamper
    crabbycamper Member Posts: 20
    edited December 2014

    Yes, let's stay in touch! Here's some specifics:

    1/5/2012: normal mammo

    1/30/2012: wake up and find a mass on left breast

    2/1/2012: U/S shows suspicious mass, radiologist does core biopsy

    2/3/2012: pathologist calls to tell me it's cancer

    2/10/2012: bilat mastectomy with 1 sentinel node

    9/3/2014: same mass appears on left chest wall

    9/25/2014: left chest wall excision and left axillary LN dissection

    10/23/2014: left chest wall excision to remove residual cancer cells seen on 9/25/2014 path rept

    I have been freaking out ever since 9/3/2014. New team of docs. 2nd, 3rd, 4th, 5th opinions, calling/emailing national experts. Bottom line: Dr M, my MO, gave me the CALOR study (Lancet2014) which showed all comers benefited from chemo but mostly the hormone receptor negative pts. That spurred me to do my own homework: there's a lot of conflicting info out there, but it boils down to recurrence=not good. I'm sure in the group of pts studied the oncotype and other markers are helpful, but what I have noticed is that a lot of docs (MO and RO) rely heavily on them to make decisions. My cancer came back in 2 yrs 7 months. Not good. It is behaving like a high grade, aggressive, naughty, ugly horrendous little thing----masquerading as an indolent, slow growing malignancy that barely warrants any Rx after surgery. So time to get mean back. BREAST CANCER WATCH OUT---I AM GOING TO WIPE YOU OUT!!!

    (that's me giving myself a thumbs up....whatever it takes to push forward).

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  • Lojo
    Lojo Member Posts: 303
    edited December 2014

    Hi, and I'm so sorry you're in this situation. I'm wishing you all the best. I do want to point out for others who might read this, though, that the recurrence numbers given with the Oncotype test are assuming you're taking tamoxifen.

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