Oncotype help & questions- need opinions!

Options
MamaM
MamaM Member Posts: 80

I have my 3rd oncologist appt on Thursday at Johns Hopkins. Both of the oncologists that I have met with are telling me no chemo because of my oncotype of 6....which is 5%.

I have 3 children and I'm almost 42 years old. My ILC tumor was 3.5 cm with two smaller (.1 & .4 cm) tumors in a lower area of my left breast. My right side was clear of anything but I did have a double masectomy. I had clear margins of 4 mm which I have asked about too & they said no rads. My lymph nodes were clear.

I am so afraid to not do chemo because I feel that I need to throw everything at it because I'm younger.

What would you do? I have to decide this week. I am already taking Tamoxifen for the past 3 weeks because the oncologist had said no chemo. Please give me your opinions. I want to be here for my children & I'm so scared.

Comments

  • labelle
    labelle Member Posts: 721
    edited January 2015

    Your oncotype score seems to indicate chemo would be of little or no benefit, which is why they are not recommending it.

    My oncotype was 11 and even with one positive node, chemo was not recommended to me either. If there is no or little benefit to be had (as low oncotype scores indicate) from chemo, if you did have chemo you'd be opening yourself up to lots of bad side effects (like the possibility of perm heart damage) with little or no possible benefit.

    The Oncotype test is like a risk analysis. Chemo is not perfectly safe, chemo is poison to both good and cancerous cells. You can't have it and not put yourself at risk. For some people the possible benefits of having chemo clearly outweigh the risks (those with high oncotype scores). For others, with very low oncotype scores, the risks of chemo clearly outweigh the benefits. Some people's scores are in the middle and I don't know how they decide but with a onco score of 6, I wouldn't even think of chemo.

    My SIL was diagnosed with BC within a week of my diagnosis. She has triple negative BC, a tumor of 5+ cm and chemo was absolutely needed, Her chemo has caused her to go blind and she has nueropathy (lack of feeling) in both her hands. That is the kind of stuff you don't want to take the chance of having happen to you unless you really, really need chemo. It has some major risk factors of its own.

  • andrearose
    andrearose Member Posts: 20
    edited January 2015

    Hello there,

    I am in a very similar situation to you. I am 42 and have a 2.5 year old girl. I often feel nervous, desperate, scared and want to be here for her until I am 90!!!

    I had an oncotype of 6 and chose no chemo. My understanding is that chemo kills fast growing cells but it doesn't target cancers like ours, which are slower growing. Do you know if you are very ER positive? That would also indicate slower growing and it's why hormonal therapy is so vital for people in our situation. I'm choosing ovarian suppression + AI even though I'm really, really scared of the side effects. My onc said it could lower my risk of recurrence from 5% to 4%. So, if I really can't handle the side effects, he is OK with me switching to Tamoxifen.

    Best of luck to you!

  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited January 2015

    I am post meno and had onco of 21. I chose to do chemo. My MO also suggested a mammaprint test, which I did not take. I am not sure if you would be eligible for that since you are not in an intermediate onco score range. The mammaprint is supposed to look at more genes than the onco test. It's a hard decision either way. Chemo was not too hard on me, but everyone is different. If you decided to do chemo and your SE's were hard on you, I would think your MO would be okay with stopping, with your low onco score. I reduced my last dose of Taxotere by 20% bc of a slight allergic reaction. You are in the drivers' seat. Do what is best for you and what you can live with, without regrets. Good luck:)

  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited January 2015

    Somehow, Mama, you have to determine that you have "thrown the book at your cancer". I think you want and need to know that is true. So......if I were you, I would feel that I had already done that based on the following:

    1. I had a bilateral mastectomy with awesome margins....margins that mean that radiation is not necessary. (And you would find it difficult to find a radiologist who would radiate you under these circumstances)

    2. I am taking tamox and likely will switch to an AI at an appropriate time in the future. Tam is a chemo, but my oncotype recurrence score says that I would be foolish to risk the significant SE of chemo with my particular cancer. Tam is my home run and I get to take it now rather than having to take it after chemo. (When you do chemo, most oncs will delay prescribing anti-hormonals until after chemo is finished. Why would you want to delay taking the "chemo" that gives you the best reduction of recurrence?)

    The only other thing I would investigate is the possibility of shutting down your ovaries by injection or surgery, but it should be something that significantly reduces your recurrence risk in exchange for going into early menopause and other SE from that.

    So my opinion is that you have thrown the book at your cancer and provided your children with the best chance of having a mother with a long and happy life.

    Hugs, MsP


  • ICanDoThis
    ICanDoThis Member Posts: 1,473
    edited January 2015

    You have thrown the book at it. We are told that chemo is a necessary treatment for cancer; but for ER/PR cancer it is not.
    Just because we don't experience cancer like the women on television, who are bald and experience horrible side effects, we are still being treated appropriately.

    You don't want to overtreat == I have had colleagues in support groups who died from chemo side effects. You don't want to do that

    About ovarian suppression -- it might lessen your chance of recurrence by perhaps 1%, and give you a 1-3% chance of dying early of a heart attack or osteoporosis.

    For me, it was very hard. I was all revved up to throw everything possible at this evil cancer, and I had no chemo, short-cycle rads, and tamoxifen. I felt like a cheater
    But that's ok, I got a terrible series of seroma infections, and got shingles the week I finished rads.
    I paid a high enough price to get to live

  • Meow13
    Meow13 Member Posts: 4,859
    edited January 2015

    i had an onco score of 34 but I was convinced chemo was not for me I am doing hormone therapy only.

  • PoohBear-61
    PoohBear-61 Member Posts: 263
    edited January 2015

    Hi Mammadarrling

    My onco score was 18

    But even before ordering the test my MO recommended these 2 options and said that they had the SAME reoccurrence rates.

    chemo + tamox      or    Zoladex  ( OS) + tamox

    and my Oncologist told me that both gave the same results for my type of cancer . If you read about the ZEBRA trial it will confirm this .    http://www.dslrf.org/breastcancer/content.asp?CATID=0&L2=4&L3=5&L4=0&PID=&sid=130&cid=421

    Not sure if the link will work but the title of the article  is Two New Studies May Change Treatment Options For Premenopausal Women by Susan Love .
    you can maybe type ZEBRA into the search field.( its a great article by Susan Love )........you can also google ZEBRA trial .

    Also see results of SOFT trial that were made available this past Dec 2014....ladies under 46 benefited from the addition of ovarian suppression .

     HUGZZZZZ

Categories