Any potential options for my 78yo Mom?

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My78yoMomERtPRtHER2-
My78yoMomERtPRtHER2- Member Posts: 3
edited March 2020 in Clinical Trials, Research News, Podcasts, and Study Results

My Mother is 78 and recently diagnosed with ER+, PR+, HER2- she had a double lumpectomy in Jan. Her Margins & lymph nodes showed clear. The oncologist is planning to start her on a chemo regimen of taxotere and cytoxan simultaneously once every 3 weeks for 12 weeks then follow up with radiation. My concern is that she is too frail already. The thought of her having chemo makes me ill. She is 78 and has gone from a size 8-10 to a 4 without even trying over the last 6 months. She says nothing tastes good any more except sweets mostly. She said even textures seem different and unpalatable. She forces herself to eat toast with a hard boiled egg and Avocado daily. But, I find packages of cookies stached close by wherever she is. In addition, My Mom has Heart disease and refused her last stress test (because she said her knees were to sore to run. She gets winded pacing around her house talking on her phone. She is on a statin med for her high cholesterol. She is hypo-thyroid and has Hashimoto's Autoimmune disease. She also has arthritis. Her knees hurt so bad she can rarely take stairs. If she falls down she can not always get up by herself. She has Vertigo. She wakes up sometimes with the room spinning and can't get out bed for 24-48 hours. She has been having terrible stomach issues for months. She has a tear/lesion in her colon and is suffering daily. She is trying to eliminate dairy from her diet because it obviously makes her stomach problems worse. I am worried she may have Crohn's disease. She has had 2 colonoscopies recently. The first Dr. Said he could see the lesion but it appeared to be healing just fine. The last Dr. Said she couldn't see anything but my Mom said she could feel each time her device touched it. My Mom said the pain & discomfort has not improved at all over the past 3 months. She also has terrible varicose veins. She has cataracts and needs hearing aids. She needs major dental work done including at least 3 implants.

On top of all of this she is fearing she has altzheimer's but is trying to avoid dealing with all of this. Somehow she has managed not mentioning any of this to her oncologist.

I know her Oncologist used the Onconotype test to predict the best treatment plan for her. She must have factored her age into it but I’m sure she hasn’t told her about her stomach issues or that she refused her stress test.

Are there any new potential treatment options I can share with her to coax her into something that may not be quite so hard on her?

Do you have any advice for me to help guide her? Any resources you recommend for PR+ER+HER2- breast cancer latest breakthroughs or for chemo survival tips?

I need her!!!! Any advice would be tremendously appreciated!!!

Thank you!!!

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  • Ingerp
    Ingerp Member Posts: 2,624
    edited March 2020

    All I can think of is to ask her MO if he/she has run the proposed treatment through the facility’s tumor board. I know they take patient’s age/health status into account before making a recommendation. Barring that, I’d ask what the recurrence probability is with and without treatment. If she’s willing to accept the risk without treatment, she can say no.

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  • Beesie
    Beesie Member Posts: 12,240
    edited March 2020

    What is the basis for the recommendation that she have chemo? From your signature line, which I assume reflects her diagnosis, while her tumor is grade 3, it is Stage I, i.e. a small node negative tumor. And it has the most favorable hormone profile - ER+/PR+/HER2-. At her age, putting her on endocrine therapy (anti-hormone therapy) which is often used for early stage ER+ patients in lieu of chemo, might also be a problem, but it seems like a better option to consider than putting your mother through chemo.

    Did the MO run an Oncotype test to determine the genetic makeup of her tumor, and therefore its aggressiveness? And if so, did he additionally run the Oncotype RSPC model, which is an easy and quick computer program provided by Genonic Health (the Oncotype people) into which the MO would input her Oncotype score, her age, the tumor size and the tumor grade - and the output is a recurrence risk that better reflects not just the genetic makeup of the tumor but also your mother's pathological and clinical features. At her age, the RSPC model is almost certain to lower the generic Oncotype recurrence risk.

    The objective of chemo in someone who is early stage is to avoid the development of a metastatic recurrence. Metastatic recurrences can happen quickly, but with ER+/PR+/HER2- cancers, more often happen after many years - sometimes not for 10 or even 20 years. For someone younger, the longer time frame is relevant and for those with aggressive tumors, chemo can be a critical part of the treatment regimen to reduce this risk. For your mother, at her age and with consideration to her other health issues, looking 15 or 20 years ahead doesn't seem relevant. So the question isn't "what is her risk of metastatic recurrence?" but "what is her risk of metastatic recurrence within the next few years?".

    Lastly, given how poorly your mother has been feeling of late and her weight loss, has she had a CT scan or other full body scan? Normally this is not done with early stage breast cancer patients, but the health problems you describe beg the question as to whether anything else is going on.

    The NCCN have treatment guidelines for "Older Adult Oncology" that suggest that for seniors with compromised health, a detailed assessment be done before any treatment decisions be made. You can find the full document here (you have to register to gain access): https://www.nccn.org/professionals/physician_gls/d...


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  • My78yoMomERtPRtHER2-
    My78yoMomERtPRtHER2- Member Posts: 3
    edited March 2020

    Bessie, you are an Angel! I have been combing through google searches & websites for weeks trying to figure out what we can do. My Aunt lives close to my Mom & is retired so she has been taking my Mom to her appointments. My aunt beat non-hoptchkins Lymphoma in The 80's and believes chemo is your power against Cancer. I believe that can be true for someone in their 30's like she was but not almost 80 whose health is already fleeting. I asked my Mom if they had done any full body scans or testing. She hadn't thought about questioning them on anything because they are the experts. I reminded her that my Uncle died because he had an invasive surgery to remove 3-4 tumors. When he wasn't recovering they ran a full body scan and found the cancer had already been spreading extensively and he was too weak to recover from the surgery. My Mom did say they submitted her info into an Oconotype test but she never saw a copy of it. The Dr. wrote down the names of the 2 chemo treatments for her on a sticky note. I called her Oncologist last week and left a message with her nurse to please call me as I was certain my mother had left out crucial info about her health. i haven't received a call back most likely a HIPPA concern. I will call back today and make a firm request for these additional tests you have recommended and give them the additional details about her health.

    Thanks a Million!!!

    {{hugs}} to you!!!

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  • My78yoMomERtPRtHER2-
    My78yoMomERtPRtHER2- Member Posts: 3
    edited March 2020

    Thank you very much Ingerp!!!

    I will definitely ask her if she has been given any of these risk results yet. If not we will have to request them!

    Thank you once again!!!

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  • flashlight
    flashlight Member Posts: 698
    edited March 2020

    My78yoMomER…, Your Mom would have to give her MO permission to talk to you in order to avoid the HIPPA concern. Does she have a POA? If so they can write the doctor a note giving permission for you to have access to all her medical information. Did your Mom add your Aunt to that list so that she helps with the discussion during the MO's office visit? They usually ask who they can speak to when you fill out the paperwork.

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  • ctmbsikia
    ctmbsikia Member Posts: 1,095
    edited March 2020

    Strongly suggest following the NCCN guidelines here. She needs to be accessed first. Do not rush her into chemo, especially as she is hormone positive with clear lymph nodes.

    I t sounds as if you are not living nearby you Mom? Is it possible to take a leave and help her? When my father died suddenly I used the FMLA act to stay with my Mom and care for her until our family worked things out. You need her permission to be on the HIPPA, please do that first with each of her doctors. Also it never hurts to know her wishes on finances, power of atty., wills etc. in the event she is in starting stages of dementia.

    Best wishes to you and Mom.

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  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited March 2020

    I would suggest getting a second opinion from another treatment facility/tumor board as some tumor boards (within a hospital) can tend to have the same opinion of treatment protocols. By going outside you have a much better chance of getting a really independent assessment.

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