Stage III but they say no chemo? Good news, but is it accurate?

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  • hrf
    hrf Member Posts: 3,225
    edited July 2011

    I agree that the docs have not come up with suggestions and are still exploring. There is so much new terminology for you and your family, you may not have a full understanding of the implications. I had a lymph node biopsies but it was not removed for the biopsy - just the usual core biopsy with that long needle. Knowing that meant they did not do a sentinel node biopsy when I had surgery but did a full auxiliary dissection. For many, once the lymph nodes are involved, chemotherapy is usually recommended

  • pp729
    pp729 Member Posts: 135
    edited July 2011

    Just wanted to chime in that sometimes the doctors are a bit tentative at first, and it makes sense that they are because the may be trying not to overload your mom with too much information and also because there is a myriad of tests that they will run.  So it's like putting together a big jigsaw puzzle and the information does come in in waves.  With my mom, sometimes I found that the information that her Breast Surgeon gave her about chemo or radiation did not exactly match what the Medical Oncologist or Radiation Oncologist said.  She also had some disagreement between the MO and the RO.  But the BS most always said to her that the MO would be the expert that she should rely most upon about chemo and the RO would be the one to rely on most about radiation. (So the BS really just focused on the surgery aspects).  In addition, we did get second opinions both for the MO and the RO, so having two sets of opinions was helpful.  The OncoType DX test was the most informative test that we had and I encourage you to ask for that. 

  • Laurie09
    Laurie09 Member Posts: 313
    edited July 2011

    I was initially told by my surgeon that it was very unlikely that I would need chemo.  

    After they saw how much lymph node involvement there was, the plan changed quickly.

    I agree with others that I think Dr.s try not to scare us too much at the beginning.  Saying "no chemo unless absolutely necessary" does not mean no chemo to me.   

    Now, if she had surgery and there is a large tumor and lymph node involvement and they're still saying no chemo, then definitely I think there is a problem..

    It's never wrong to get a 2nd opinion but I wouldn't jump to conclusions just yet.  

  • cdonsell
    cdonsell Member Posts: 5
    edited July 2011

    Absolutely get a second opinion!

  • Pinkfuzzysocks34
    Pinkfuzzysocks34 Member Posts: 19
    edited July 2011

    Sorry for not responding! I've been checking in with your answers though!

    The MRI results showed the tumor at 5.2cm. It's unknown how many lymph nodes are positive but it's at least one.

    Also, it's Invasive Ductal Carcinoma.

    The doctor really sounded like she doesn't recommend chemotherapy... and I understand (if there was one thing I didn't want out of all this, it's for my mom to have to go through chemo!) but I would rather her go through that than have the cancer come back, ya know??

    You all are such a blessing  Smile

  • ruthbru
    ruthbru Member Posts: 57,235
    edited July 2011

    I don't usually make 'people should for sure do......(anything).......' statements, but if those statistics are correct, then your mom absolutely needs to have chemo, probably BEFORE surgery!

  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited July 2011

    pfs34 (just seemed easier to type!) -

    So glad to see you back and keeping touch.  I'm sure it very clear that many of us have clear ideas on what we felt was the best paths for our treatments.  I'm just wishing you and your mom successful results.  My fallback is the acid test -- knowing what I know right now, with the facts in front of me, am I doing anything that I may regret in the future?  If the answer is no, then it's the right path.

    Just keep drilling those docs with questions!

  • Pinkfuzzysocks34
    Pinkfuzzysocks34 Member Posts: 19
    edited July 2011
    Thank you so much you guys =) I can't tell you how much of a peace of mind you have given both  my mom and I Smile
  • PlantLover
    PlantLover Member Posts: 622
    edited July 2011

    Socks ... PLEASE ask your Mom to get a second opinion!  

    Invasive and large with lymph node involvement would certainly indicate chemo. 

    I was diagnosed Stage III & my tumor was 6 cm with suspected node involvement and I had chemo then surgery (bi-lat), radiation, chemo after radiation due to the fact that they found micro-mets in 3 nodes during surgery. I was 48 at diagnosis, not much younger than your Mom.

    I'm also confused by a couple of things you posted: 

    1.  All the receptors and stuff are positive, as well.  

    I'm assuming the tumor is ER/PR positive.  Please find out if the tumor is also HER2 +

    2. And when my mom had the biopsy, they only removed one lymph node and it tested positive. 

    They took a lymph node during a biopsy?  I've never heard of that being done before.  Has anybody else heard of that?

  • momof2greatkids
    momof2greatkids Member Posts: 56
    edited July 2011

    Socks -  please get a second opinion for your Mom! Your posts made me log in-which I rarely do. First, please understand that chemo is usually not as horrible or terrifying as it sounds, and kind of like childbirth, even a few months after it is hard to remember how bad it was because it is totally worth it - the chance to beat this booger. I guess from all I researched, learned and experienced throughout this, I am shocked they are not considering chemo, and chemo NOW. There has to be some info missing or results that give it a lower stage or something. Please, please get a second opinion, if only so you do not have to question yourself later should (God forbid) things get worse, which is a valid concern you have mentioned. God Bless you and your family.

  • Nanorama
    Nanorama Member Posts: 50
    edited July 2011

    I would like to urge us all to take a step back here... and not rush to judgment.  Nowhere does it say the doctor recommended against chemo.  NCCN guidelines strongly suggest chemo for tumors whose size and other characteristics qualify it as Stage III. 

     However, I would note that the continually evolving understanding of the biology of breast cancer is prompting increasing numbers of leading US oncologists to realize that, at least for women with highly estrogen-receptor positive tumors, chemo may offer very limited or no benefit when compared to hormonal treatments (aromatase inhibitors or tamoxifen).  See, for example, Harold Burstein's article http://www.asco.org/ASCOv2/Home/Education%20&%20Training/Educational%20Book/PDF%20Files/2006/Breast08.PDF

    My tumor was IDC, grade 2 (Nottingham 7/9), 2 cm, highly ER positive, PR+, HER2-.  My Oncotype Recurrence Score came back at 17 (the highest number on the "low risk" range).  

    My own oncologist - a top clinical trial researcher - was on the fence re the utility of chemo for me, even though I had one 2 mm met in one lymph node out of 60 (!) total.  "It's a gray area," she said. "Your benefit is likely to be in the 2-3% range."  To which my surgeon responded: "If this were the stock market, and you were being offered a 2-3% return on your investment, would you buy?"

    The 2nd oncologist I consulted expressed her concern thusly: "We know that the overwhelming bulk of your benefit will come from the hormone therapy (anastrozole).  But to get this benefit, you have to take it for 5 years or more. Many patients have difficulty complying with this lengthy regimen, due to the onset of debilitating joint pain. While we are not 100% sure what causes this side effect, we know that doing chemo potentiates joint pain.  God forbid we give you TCx4 and then you are unable to stick with the anastrozole, which is far more likely to help you! For someone in your situation, I am inclined to think that the potential harm of chemo may well outweigh whatever good it may do."

    So despite the micromet in one node, I didn't do the chemo. I'm on Anastrozole till the cows come home.

    Many oncs offer chemo for reasons that may not have a lot to do with its actual utility: 1) it's what they know, and the idea that doing nothing may in some cases be better, or at least less harmful, than doing something is hard for them to accept; 2) the patient wants it, because emotionally she needs to feel she's left no stone unturned; and 3)hate to say it, but a very prominent oncologist admitted this at a conference I attended: oncs have a strong financial incentive to prescribe in-clinic chemo, it's where they make their money. 

    What did my consulting oncologist say to me? "We know we treat 100 women <with chemo> to save 1 or perhaps 2."  

    I believe that, 50 or 100 years from now, people will look back on our barbaric treatments... and pity us, much as we now pity those with cupping and leeches and such. The truth is that chemo is a shot in the dark for many of us. NOT the triple negatives - they get a clear benefit. But for those of us who are highly ER+, the utility of chemo is just much less clear! 

    Just my .02 as ever!!  

  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited July 2011

    Nanorama -

    You hit on something that I have been wondering about myself.  I was a "no response" with chemo.  And the irony is that it didn't surprise me, my trial onc or my regular onc.  My presentation has low odds of responding to chemo but the hormonal therapies show significant promise.  And there are definitely oncs out there who feel the chemo risks are significant and not to be taken on just because "it's what you do".  Yes, I realize the NCCN guidelines recommend chemo, but we are not cookies stamped with the same cookie cutter.  Just like chemo affects some tumors more than others it also affects some women more than others with the SEs.  I'm glad you spoke out with a difference perspective.

    The bottom line is that we go with an onc and treatment plan that we are comfortable with.

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