Anybody with high oncotype and choose NO chemo?

Scarysadday
Scarysadday Member Posts: 35
edited August 2016 in Alternative Medicine

My oncotype score was 37, I am only 39 years old,grade 3, hence MO has recommended the hard core chemo....AC +t or FEC+d....because of the 3 factors above (only).....node negative for me, how do I know chemo will work for me and it won't 'stir' things up? Appreciate any advise ladies! I gotta make my final decision next week! I want to do all I can for my kids and family, not even care about the pain and side effects, just worry, if it was supposed to be nothing, but chemo will stir things up, mess up my body, and recurrence will then happen! I read an article, might have opposite effect!

· Share on FacebookShare on Twitter

Comments

  • edwards750
    edwards750 Member Posts: 3,761
    edited July 2016

    I can understand why your Dr is recommending chemo. You are young and doctors tend to prescribe more aggressive treatment for younger women, you have a high score and your tumor grade is high.

    There are risks with chemo and radiation but IMO it's better than the alternative which is doing nothing. I would check out the treatment link on this website so you can get sage advice and glean experiences from women who were treated with chemo. FYI I had 33 radiation treatments and I'm 20 years older than you. It wasn't a walk in the park but other than a bit of burning and fatigue not too bad.

    The bottom line though is its your call, your body and your life. Get a second opinion if you need to. A number of women have done that too.

    Finally be careful what you read on the Internet. We were told to stay away from Dr. Google. It will scare you and it's not always factual. Bombard your doctors with questions and get the answers you need to make an informed decision. I talked to a friend who is a nurse at St. Jude. She had BC and was such a help and comfort during and after my DX. I also had a patient advocate assigned to me from the women's health center. She was awesome.

    Keep us posted and keep the faith.

    Diane




    · Share on FacebookShare on Twitter
  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited July 2016

    Hi!

    I'm not sure what you mean by chemo "messing up your body." To be sure, it has side effects and is not a cure-all. However, your oncotype score suggests that the benefits will outweigh the negatives in your particular case. Chemo -- as a systemic treatment -- is supposed to help reduce the likelihood of recurrence by killing the cancer cells in your bloodstream and lymph system. It's not going to "stir things up" and cause recurrence, though chemo does not guarantee that there won't be recurrence.

    I guess I did what you call "hard core chemo," AC + T. I know it worked for me because I did chemo before surgery, and it wiped out all the active cancer in my breast and compromised lymph node. Chemo wasn't fun, but I saw it as my chance to head off a particularly aggressive cancer (triple positive) and to live a longer life so I could continue to raise my children.

    Today's oncologists want us to finish treatment. Hence, most of them try to make chemo bearable for us by responding vigorously to problems we might be having during treatment. My oncologist's office always had a physician on call. If I experienced high fever, dehydration, etc., I was supposed to call right away. Fortunately, chemo was relatively easy for me. I worked through treatment (albeit with fewer responsibilities) and managed to take care of my three children.

    ((Hugs)) and best wishes, making the best decision for yourself and your family.

    · Share on FacebookShare on Twitter
  • Denise-G
    Denise-G Member Posts: 1,777
    edited July 2016

    The fact that your tumor is Grade 3 means it is more aggressive and fast dividing cells.

    I have a lot of family experience with breast cancer - my mom, sister and I were all diagnosed within 3 years. I also hear from

    thousands of breast cancer patients on my blog.

    I'm not sure what you mean about chemo "stirring things up". Is chemo difficult? Yes. Is it doable? Yes I was the biggest medical sissy alive before breast cancer - couldn't even stand blood draws, and I did it plus radiation. My sister finished treatment 6 months ago for Stage 3C and is feeling great already!

    Now that I am almost 5 years out, I thank God everyday that I did it and that I am still alive. I have no regrets as I did everything I possibily could from the outset.

    Your age is in your favor as far as treatment goes. If I were in your shoes, there would be absolutely no question that I would throw everything you possibly can at your cancer now. How will you feel about your decision in 3 years if it returns or 5 years or 10 years? One of the things I hear from Stage 1 women the most whose cancer has returned is is "I wish I would have done chemo initially." EVERY person is different and these decisions are difficult to make.

    However, even if you had never had an onco test, the fact that you are Grade 3 means it is definitely more aggressive.

    These are my opinions and because you asked, I gave them!

    Sending you thoughts and prayers so you make the best decision for you and your family.





    · Share on FacebookShare on Twitter
  • labelle
    labelle Member Posts: 721
    edited July 2016

    I know there are women on here with high oncotype scores who declined chemo and ended up being fine so far, but not a lot of them. Meow comes to mind. The boards are often pretty quiet on weekends, but maybe you'll here from some of them yet.

    You are right, chemo can mess with things. Depending upon the kind of chemo there is something like a 5% to 7% percent chance it will cause permanent and health changing problems-such as heart damage or permanent neuropathy, even death or another cancer years down the road-this is often something that is downplayed to cancer patients, but chemo absolutely has real risks associated with its use.

    Even though most people find chemo doable, it isn't generally recommended unless the chances of it helping outweigh the chances of it hurting-which is why chemo is not usually recommended to someone if it only has a 2 or 3% chance of working (obviously less than the odds of chemo doing bad things) although I've read posts by some who want chemo even with low odds of it doing anything good. When the potential for bad outweighs the good, it's not usually offered, but when the chances of doing good are greater than the chances of it doing something bad, it is generally recommended.

    With a 37 as an oncotype score, my guess is that statistically there is a better chance chemo will help you than hurt you. Your doctor should be able to give you stats telling you how likely it is that the chemo recommended will help you beat this and how likely it is to affect you in a way that will impact your future health and well being and he/she should be able to tell you what percentage of people have what kind of problems as a result of the chemo he/she is recommending for you. When you know all this information, you will be able to make a truly informed choice about your treatment options.

    I'm fairly chemo adverse, but it my oncotype score had been 37, I would have at the very least seriously considered chemo and I definitely would have insisted on knowing everything possible about the potential risks and benefits involved..

    · Share on FacebookShare on Twitter
  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited August 2016

    Hi Scarysadday:

    Re "stirring": There was a recent discussion in another thread that mentioned surgery "stirring things up". This was presented as a possible theory of why it might be preferred to start chemo relatively soon after surgery. No one said that chemo stirs things up. The discussion was NOT saying chemo is bad. It was about the preferred time to start chemo.

    BarredOwl

    · Share on FacebookShare on Twitter
  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited August 2016

    Hi Labelle:

    This 2016 ASCO guideline says the chance of severe adverse effects from chemotherapy is more like 2 to 3%:

    http://jco.ascopubs.org/content/early/2016/02/05/JCO.2015.65.2289.full

    "Several studies have suggested that the odds of fatal, life-threatening, or permanent life-changing toxicities are at least 2% to 3% in healthy women who participate in prospective trials."

    Some adverse effects show greater incidence in older patients and/or those co-morbidities. So being young and generally healthy otherwise can be an advantage in treatment.

    BarredOwl

    · Share on FacebookShare on Twitter
  • Meow13
    Meow13 Member Posts: 4,859
    edited August 2016

    My score was a 34, I was pr negative less than 1%, er positive 95 %. At the time I was 53 and in excellent health. I had 2 tumors no nodes. I didn't do the recommended hard core chemo. I was looking at 23% recurrence with no chemo maybe as low as 10% with chemo. My tumors were both mitotic rate 1, 5 and 6 on Nottingham so grade 2.

    I made the decision no chemo for me against my mo wishes. I had one scare but it was nothing.

    It so hard to know what to do. At the decision time my mind was convinced not to do it just take AI drugs.

    · Share on FacebookShare on Twitter
  • Meow13
    Meow13 Member Posts: 4,859
    edited August 2016

    I suppose you could try chemo and you could decide to stop. I do wonder if mine comes back i might decide on chemo, take meds for side effects, ice hands and feet, and do cold caps to save my hair.

    I admit I feel as you do chemo could have unacceptable side effects or even back fire and make the cancer worse.

    A friend of mine did die from drug resistant cancer growing totally out of control. She was only 35 and had a 2 year old. That was back in 1988, chemo was very rough back then I think today it is improved.

    · Share on FacebookShare on Twitter
  • Fallleaves
    Fallleaves Member Posts: 806
    edited August 2016

    Hi Scarysadday,

    Maybe you should get a second opinion, just to get a clearer sense of the risks and benefit of adding chemo to your treatment. Tamoxifen treatment will give you your greatest reduction in risk of recurrence, but chemotherapy can add substantial benefit.

    This is from an older article explaining the Oncotype DX score (http://www.oncolink.org/cancers/breast/screening-d...)

    "To evaluate chemotherapy benefit, women were divided into low, intermediate and high-risk groups. Women in the high-risk group (RS > 31) were found to have the greatest benefit, with an increase in the 10-year disease-free survival from 60.5% with tamoxifen alone to 88.1% with chemotherapy and tamoxifen. "

    Another possibility might be ovarian ablation plus an aromatase inhibitor, if you really don't want to do chemo. You could discuss that with the doctor and see how it stacks up against tamoxifen plus chemo.

    "Premenopausal women with hormone receptor-positive, HER2-negative disease and high recurrence risk, as defined by clinicopathologic characteristics, may experience improvement of 10% to 15% in 5-year BCFI (breast cancer-free interval) with exemestane plus OFS versus tamoxifen alone. " (http://www.ncbi.nlm.nih.gov/pubmed/27044936)

    Good luck with your decision!

    · Share on FacebookShare on Twitter

Categories