Oncotype scoring and decisions on treatment.

NCDi
NCDi Member Posts: 85
edited June 2015 in IDC (Invasive Ductal Carcinoma)
Hello!

I recently got a 14 score or, 9 with Tam. My Onc said that as I was post menopausal (I am 64) I would benefit from anti hormone treatment - probably Aromasin as Tam is generally for pre menopausal patients - the Oncotype uses Tam as the basis for the lowering of the score. I start Rad treatment on May 26 (no chemo) and really am on the fence about anti hormone treatment. He explained that I might have hot flashes, etc. and will need a bone scan/injections to help mitigate any bone loss. I would be 70 when I finish treatment.

Any input and insight from the community would be appreciated as I am interested in the experience and opinions of others.

Thank you.

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Comments

  • grammakathy
    grammakathy Member Posts: 407
    edited May 2015

    My Onco score was 11 when I was diagnosed in late 2013 at age 63. My tumor was 100% hormone positive. I started with Arimidex and had rough side effects for nine months. The worst was insomnia which I had never experienced before. After a three month break, my MO started me on tamoxifen and I have had no side effects at all since I started.

    We are all different in our response to these meds. You can always stop or try another one if the SEs get too rough. They do a bone scan before you start and keep an eye on changes. I wished I could have tolerated Arimidex because I like the fact that it eliminates estrogen from your system while Tamoxifen just suspends it so the cancer cells can't attach. But taking this step gives me peace of mind that I am doing everything I can to avoid a recurrence.

    Best wishes in your fight NCDi

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  • NCDi
    NCDi Member Posts: 85
    edited May 2015

    thank you Grammakathy! I am looking forward to getting on with treatment - even the Rad!!!

    I have several phobias and one is medication as I have so many allergies to previously prescribed meds but I will give anything a try! I appreciate you responding.

    Regards and best wishes

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  • grammakathy
    grammakathy Member Posts: 407
    edited May 2015

    NCDi - I feel my cells messed up in allowing this cancer to grow. I never smoked or took hormones. I breast fed my second son. I don't have a family history of cancer. But somehow these erratic cells multiplied and were fed by estrogen in my body and weren't shut down by my immune system. I take no other drugs other than an occasional Tylenol a couple of times a year. But without Tamoxifen, I would feel vulnerable. I know BC could come back anyway but at least I am fighting it with everything I have. This is such a personal decision for each of us to make.

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  • NCDi
    NCDi Member Posts: 85
    edited May 2015

    Grammakathy, I was surprised at my diagnosis as there is no cancer in my family however, I am the only female to never have had a pregnancy. Ten years of b/c pills in the 1970's, then a hysterectomy when I was 35 (kept my ovaries) and in my very late 40's/early fifties I was prescribed Premarin HRT for a couple of years. Had issues and took myself off it - doc said by doing so I was creating more problems.


    Had brain tumor surgery - tentorial meningioma - in 2006 and I figured that would be the worst I could face. My mother is a physically healthy 89 year old who doesn't know about my diagnosis and I shan't tell her.


    Like you I never smoked but when cells decide to mutate...... And here we are.


    I will do what needs to be done to have as much quality of life/time as possible. I just wish there was a test, to find out how much Estrogen, etc. is still being produced at certain stages of later life. It surely would make decisions a lot easier.


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  • grammakathy
    grammakathy Member Posts: 407
    edited May 2015

    NCDi - you have had many challenges and are an amazing person. We followed different paths and find ourselves with the same diagnosis. Quality of life and then time are the most important factors. Thank you for sharing your story! Hopefully others will joint in and share their perspective on this step in our battle

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  • mircann
    mircann Member Posts: 45
    edited June 2015

    Hi,

    Just chiming in here..to share...I have no family history of breast cancer on either side of my family either... I only took about 5 yrs of birth control pills. I was a smoker off and on for about 20 yrs...but  I only smoked when I had a beer or two. Which was only about 4 cigarettes a month. I did 3 IVF's to get my beautiful baby boy who is 2.5 yrs old now. I have a very high oncotype score of 40 something..so I have to do chemo for 6 months. I am stage 1 , grade 3, post mastectomy (left breast removed april 2015). I sure don't understand why I got this at 51 yrs old...but I tell you most women I talk to know at least 1-2 or more women that have had or are in the middle of breast cancer...so it is rampant...this breast cancer...
    I start my very first chemo tomorrow CMF for 6 months and then go on Arimidex after chemo is done.Grammakathy I'd like to chat with you about your reconstruction as I will get that next year. Im putting it off as I cant take any more doctors and surgeries after all Ive been thru already...just chugging away at this trying to stay positive...

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  • mircann
    mircann Member Posts: 45
    edited June 2015

    Oh and my onc told me when I first met him...breast cancer is often caused by( or attributed to often by certain risk facors) hormone issues, obesity and stress...I had a ton of stress the last 3 yrs at work and loaded myself up with IVf injections ovr the last 6 yrs. There was one more risk factor he mentioned but now I cant remember what is was...but I really see it as a baby boomer thing, as all the women I hear about or that have it are baby boomer age/era...

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  • grammakathy
    grammakathy Member Posts: 407
    edited June 2015

    mircann - I am happy to share my experiences with you, just like so many have shared with me.  When I copied things onto my 2015 calendar in January, I was amazed at how many appointments were there in 2014.  It is a long road but it can be done step by step.  My surgeries have all gone well, even though my original BS was a real jerk.  He did a good job but had no patience in answering my questions.  When I was concerned about my non-cancerous breast that had been the focus of an ultrasound the previous year (and the real cancer spot noted as not a problem at that mammogram), he told me that if I wanted to get poked again (in a biopsy) go right ahead, he had ordered it. Arghhhh.  He said he wasn't concerned about my other breast.  My PS was a dear and an artist.  I looked wonky when I had TEs for seven months but everything turned out perfect in the end.  I couldn't be happier.  In three weeks, I am scheduled for the final step - 3D tattooing.  This is my way of putting it behind me.  I try to spend my time on things that matter to me now.  I realize life is too short to do things because I feel I ought to do them. 

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