NO Chemo

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  • ritimosa
    ritimosa Member Posts: 17
    edited November 2006

    My onco told me and my husband flat out that I would not survive w/o the chemo. I had the dd chemo for four months and I did great. Yes I was tired and did not feel that great but its better then the alternative. I continued to walk everyday and I enjoyed my family and friends who brought me meals.

  • platypus
    platypus Member Posts: 2
    edited February 2007
    I'd like to add confirmation to the messages a couple of other people have posted on the importance of having an Oncotype DX test if you're considering skipping chemo. To be eligible for this test, you have to belong to belong to all four of the following categories: Stage I or II; node negative; ER+; planning on taking tamoxifen.
    If you're in all four of those categories, then you're in a gray area for chemo. It might save your life, in which case it would be terribly risky to skip it. On the other hand, it might not help you at all because your chance of future metastasis is so low that you're safe with either a lumpectomy with radiation or a mastectomy without radiation. How do you know whether chemo would help you? That's where this test comes in.
    After your surgery, you ask your doctor to have a biopsy sample sent to the lab in California that does the Oncotype DX test. In a couple of weeks, your cancer is given a score from 1-100 as well as a range that predicts future metastasis (low, medium, or high). If you're in the high range, you should definitely have chemo. If you're in the low range, you probably don't need it. If you're in the middle range, talk with your oncologist. There's currently a clinical trial, the TailorX, that randomly assigns mid-range women to chemo or no chemo. Perhaps you'd like to join the trial and contribute to cancer knowledge. Or perhaps you're the sort of person who wants to do everything possible, and if you're midrange you'll decide to go ahead with chemo.
    No one wants chemo, but to skip it without taking this test seems like a decision that one might regret terribly. About half the women who have had the Oncotype DX test do turn out to be in the low range, so it's quite possible that someone who is afraid of chemo will find out she doesn't need it--and then she won't go through the rest of her life thinking a metastasis lurks around the next corner. On the other hand, if she receives a high score, she may find that the necessary prod to do something difficult but lifesaving. As someone who has done the Oncotype test and gotten good news, I feel grateful that such sophisticated diagnostic tools exist.
  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2007

    thanks...I fit the qualifications for this test and will ask my onc to give this a try before proceeding. I think it just the answer I needed! God Bless

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2007

    I also met the criteria to have the test done...my score was 12...no chemo for me, as there would have been little benefit....You really want to have this test done....

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2007

    jpann do you know if this test is readily available elsewhere (other than California)? I don't have a set date that I am aware of for the chemo to start. I had a couple of delays with other tests. anyway...was the benefit they offered more or less than 5% for you? I think I am going ahead with the chemo....but that is what I think....right now! GAAAHHHH! Glad to be a woman...so I can find it so easy to change my mind...ha. Take good care dear....thanks

  • thomcat
    thomcat Member Posts: 356
    edited February 2007
    misspell - I think the lab (Genomic) in CA is the only one who performs the test.

    I took the test last November and my score was an 18 - 11% chance of distant recurrence. An 18 is on the low end of the intermediate range. I opted for the chemo because I want to do everything possible to ward off future recurrence.

    Chemo is one of the hardest decisions I've ever made. Godspeed to those confronted with the decision.
  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2007
    Misspell,
    Thomcat is correct, that is the only company that does this testing...
    My testing showed that chemo would only give a 4% benefit for me...
    The reason I choose not to do chemo was because all the Drs. told me (and I researched myself) that my cancer cells were very low grade and slow growing...which means they do not respond very well to chemo anyway...and the fact that all but two of my fathers family have passed away with some form of cancer....Im scared that if I do the chemo on such a low chance of it working that it wouldnt work later down the road if I show up with other cancer issues.
    Its a very hard decision to make...I spent many, many nights laying awake trying to make the decision, but I am comfortable with what I choose.
    Take Care and keep me posted on how your doing with everything...
    Jule
  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited February 2007
    INFORMATION: Platypus posted important info about Oncotype Dx. I will supplement that with a post about another choice, the Mammaprint. Oncotype Dx is based on evaluation of 21 gene characteristics, Mammaprint uses 70. Mammaprint can only be done on fresh tumor tissue, not preserved tissue. While most here have only preserved tissue samples and cannot benefit from Mammaprint, PLEASE consider helping the newly diagnosed find out about it while they DO have the choice. The makers of Mammaprint sought and were the first to be given FDA approval, but we don't know that Oncotype Dx would not get FDA approval also if the makers of that test applied for FDA approval. Please research both.

    For Mammaprint this link gives the US cost and contact info, and indicates that fresh tumor tissue is what is required for the test:

    http://www.bioinfo-online.net/modul...php?storyid=134

    Here is another link for additional info about it:

    http://news.yahoo.com/s/ap/20070206...ast_cancer_test

    Here is the link for info about Oncotype Dx:

    http://www.genomichealth.com/oncotype/default.aspx

    QUESTION: Why is it that with so many responses to the chemo controversy from so many who have already talked with oncologists, something as basic as the Oncotype Dx test still is either not known by many or not mentioned by most as being one solution for many in the largest group of bc patients now being diagnosed -- those with early stage bc?

    COMMENTS: Far too often oncologists provide their own perspective in making recommendations without making the effort to be sure the patients are given basic factual information to help them make their decision. That leads many to assume that chemotherapy is much more effective than it really is, and for others to doubt whether it is effective. While it is necessary for each of us to be cautious in choosing someone to advise us about such toxic therapies, as patients diagnosed with such a complex disease we should not be expected to have to do most of the research ourselves in such limited circumstances.

    Again, the largest group of bc patients currently diagnosed is now those with early stage bc. For early stage bc, some are statistically considered by oncologists not to be at all likely to benefit from chemotherapy. Some with early stage bc are in a group for whom the benefit of chemotherapy is not clear. Some with early stage bc are in a group that are considered to be at higher risk and more likely to benefit from chemotherapy. None of that is considered to be speculation.

    In terms of those who are not early stage, the likelihood of recurrence is more significant with or without chemo. That isn't a matter of speculation either.

    What is important is that whatever decision is made, patients are given whatever relevant facts there are about their individual situation, so that they don't choose therapies out of ignorance or blind desperation that are likely to be ineffective for them.

    AlaskaAngel
  • suenashief
    suenashief Member Posts: 1
    edited March 2007
    Hi Teresa,
    What treatments did you receive before your surgery? I have the same thing you have, IDC, Stage IIB, triple negative receiving TAC every 3 weeks. Just curious what you received. Glad you are doing great.
  • mkl48
    mkl48 Member Posts: 350
    edited May 2007

    This is an issue under much discussion among onc. What is your oncotest score? That should help as it looks at all the factors of your tumor.I wonder if any onc would agree that the chemo would have prevented the ILC or even the mast recuurrance. If you are er+ some are using hormonals first.Beth

  • atlantagirl
    atlantagirl Member Posts: 6
    edited September 2007

    I agree!!!  Be as aggressive as you can.  Why take the chance.  Do the chemo.  Its not easy but its worth it!! 

  • kellybrimhall
    kellybrimhall Member Posts: 3
    edited September 2007

    This is a very difficult decision. I do know of people who chose not to have chemo, though it was recommended, and have survived 5+ years, so far. On the other hand, my mother chose not to and it came back two years later and took her life. It was because of my mother that I decided to take the chemo, that was 10 years ago. I could not let go of the feeling that had my mother taken the chemo she might still be alive. That was my mindset at the time, and I believed I could physically handle the chemo's side effects, and I did.



    I , now, strongly believe in alternative medicine and have a wonderful naturapath doctor who has saved my life more than once as far as I'm concerned. Choosing to go against western medicine can often be the right thing to do, but only you can determine that. The power of the mind is the key here.



    If you are interested in my personal story going through surgery, reconstruction, and chemo, it is posted here under "I'm new," or you can visit my personal web page www.dharmalicious.com.



    Good luck to you. Whatever decision you make, own it, believe in it, and take it on with all your soul!

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