Mom's oncotype is 46 but she wants to refuse chemo

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ailihe
ailihe Member Posts: 3
edited June 2014 in Stage I Breast Cancer

Hello,

My mom is a petite 64-year-old asian lady and recently had a lumpectomy for her stage 1, grade 3 breast cancer and followed up with 5 day mammosite radiation. After her oncotype came out with a score of 46, her oncologist told her she would need chemotherapy (4 time, 12 week TC regimen, taxotere and cytoxan). She got a 2nd and 3rd opinion, and all said the same thing. She has her first chemo session scheduled for next week, but now is really against it because she thinks she won't be able to handle the side effects and possible long-term effects as she is already super sensitive to any kind of medicine (she gets affected even by aspirin or cold medicine). She argues that even with the chemo, there is still a chance of recurrence, so she might as well not destroy the quality of her life right now.



Do you agree with her going with her gut and not doing the chemo, or do you think it is imperative that she gets the chemo? My worry is that if the cancer comes back, she will need an even more agressive chemo regimen that will really take a toll on her, or she won't even be able to fight it. Does cancer get more agressive when it recurrs?



I would appreciate any thoughts or comments. Thanks so much!



Comments

  • Wren44
    Wren44 Member Posts: 8,585
    edited May 2012

    Boy, I'm glad I don't have to make that choice. Has her doctor given her the statistics regarding her cancer? There's a program the doctor can run that will give her percentages of likelihood of dying of BC and of having it return. My personal opinion would be to try the chemo. She doesn't have to stay on it if it's too miserable. Some of the chemo threads would have more info regarding these particular drugs.

  • doxie
    doxie Member Posts: 1,455
    edited May 2012

    ailihe - You are in a difficult position.  An oncotype of 46 that is not HER2+ is a very agressive ER/PR+ cancer.  I'm guessing it's not HER2+ because TC is suggested, not TCH.  Correct?

    Here's the problem I see w/o chemo.  She may not be able to tolerate the AIs.  Then she is w/o any systemic treatment, really important for such an agressive cancer.   The dosage of chemo is given based on body size.  This is one of the rare times that treatment is not one-size-fits-all.  So for once your mom would be getting an optimal dose, unlike with most pills where dosage is based on the size of an average person (usually a man).  Chemo can be given very slowly to allow the body to adjust to the meds. 

    Her MO needs to make it very clear to her what the chances of a distant recurrance are.  If mine was 20% with 5 yrs of tamoxifen (or AI) w a 30 oncotype, then at a 46 w/o chemo and possibily no AI (this has to be considered if she refuses or cannot handle the meds), her chance of distance recurrance may be worse than the flip of a coin.  Treatment for this is much worse than 4 TC.  

    If your mom still refuses (certainly her right) after getting more information, it might be wise for her to see a counselor who specialized in cancer treatment to help determine exactly why she is refusing treatment.  Something else might be at play here.   

  • ailihe
    ailihe Member Posts: 3
    edited May 2012

    It's HER2 negative and ER/PR positive but weakly positive. Her recurrence rate w/o chemo is 31%. i don't know what it would be w/ no AI. She's just heard from too many people about how terrible chemo is and some friends had to stop midway. Her surgeon also said she would choose not to do the chemo herself. I asked my mom if she would have any regrets if she didn't do chemo and the cancer did come back later, and she said "no, because who's to say that it wouldn't have come back even after doing chemo?" She says she gets a feeling of relief when she thinks about not doing the chemo.

    I don't know...i want to be fully supportive of her decision, but I also want to do everything i can to make sure she's doing the right thing!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2012

    If your mom fully realizes her chances of recurrence...fully realizes that she could start chemo and stop if the side effects got to be too much...i.e. she is making an educated rational decision to forgo chemo.  Then my humble opinion would be to honor her choice and love her up and move on.  I know it's hard because you want your mom to "do everything possible", but she's the one who needs to be comfortable with her choice.  

    Hugs to you and your mom.  

  • coraleliz
    coraleliz Member Posts: 1,523
    edited May 2012

    Ailhie- You might want to read a book called "Your Medical Mind" by Jerome Groopman. It might help you understands your mom's thinking. I decided against chemo for myself but "I think" I would do it if I had your mom's numbers. I didn't want to compromise my quality of life & don't have to live to be old(I was 52 when diagnosed). My family understands this. What I needed help with was why anyone would do chemo with my grade 1 tumor & an oncotype of 4. Your mom may still change her mind.

  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited May 2012

    alilihe- It is very understandable that your mom is afraid and scared of the chemo side effects because I'm sure she has heard/read enough stories of people having a terrible time with chemo and no one can predict how she will react to the chemo.  However, there are things one can do to ensure one maintains a sense of control over the situation.  For instance, before I started my chemo, I was given a cancer cookbook that guided me as to what to eat the day before the chemo treatment and the day afterwards and how to eat when one is experiencing the chemo side effects.    My oncologist and her staff continually encourage me to contact them as soon as possible when I have questions about my chemo and when I'm having side effects.  To them, the sooner I call, the sooner I can get help.  From my personal experience, I, too am very sensitive to medications and the idea of putting more medicines of any sort isn't something I want to do.  However, here it is necessary and all I have to do is call my doctors for help when and if I'm having a reaction. 

    I think the fear of the unknown and not being in total control over the situation with chemo may be more frightening to her than anything else.  I know its difficult to understand how someone choses to not have chemo which will last only a few months for the opportunity to extend one's life for much longer.  I know you love her dearly and hope she will realizes the true impact she has on her life and the lives of others when making her decision.  Wishing you and yours comfort and peace as she makes her decision.

  • sueshane
    sueshane Member Posts: 120
    edited May 2012

    alihie-

    I had TC also and it was very easy.  She may have little to know side effects.  My biggest side effect was terrible heartburn which I soon learned to manage with prevacid which worked great.  I think your mom should  try it and if she has really horrible side effects, she can always stop.

    Susan

  • bluepearl
    bluepearl Member Posts: 961
    edited May 2012

    Flipping the coin, your mom has a 69% chance of it not coming back. Chemo is odd....my friend breezed through one of the harshest treatments for her Stage 111c breast cancer. She managed 11 years before it came back and is now on chemo which is more difficult for her now but is willing to take to keep alive. Another friend is 6 years cancer free deciding against all adjuvant therapy for her Stage 11a, grade 3 breast cancer. Knowing all the information, one must then respect another's decision about treatments. It is difficult.

  • BTinAZ
    BTinAZ Member Posts: 5
    edited May 2012

    Chemotherapy does not cure cancer. I agree with her...enjoy good quality of life and enjoy. I refused chemo, did radiation, had some Herceptin and told onc to jump in a lake if he really thought there was any real clinical evidence that aromatase inhibitors were beneficial. I have very high grade BC and have been around for many years. Don't let her get poisoned if she is intelligent enough to realize it doesn't work. Let her make her own decision.

  • BTinAZ
    BTinAZ Member Posts: 5
    edited May 2012

    Chemotherapy does not cure cancer. I agree with her...enjoy good quality of life and enjoy. I refused chemo, did radiation, had some Herceptin and told onc to jump in a lake if he really thought there was any real clinical evidence that aromatase inhibitors were beneficial. I have very high grade BC and have been around for many years. Don't let her get poisoned if she is intelligent enough to realize it doesn't work. Let her make her own decision.

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