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Video Q&A about Cancer Immunotherapies Event Date: February 6, 2019 | 9:30am - 10:00am CT

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@ihnsbc

I am one of the approximately 20 % of Estrogen-positive women who are walking away from Aromotase Inhibitors because of devestating side effects. Is there concensus and support on how we proceed with monitoring our health? I have a supportive oncologist who believes, as I do, that quality of life matters. But I think there is a lack of information and wonder if there is interest in or attention to this group. Thank you.

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Replies to "I am one of the approximately 20 % of Estrogen-positive women who are walking away from..."

First I would be very interested in this group on A/I. It is nice to know that 20% of women do not take the aromotas inhibitors. I to had the worse side effects I could barely get up from a seat and felt like I was 80 years old my legs hurt so much I would shuffle. I had awful regrets since nearly everyone in my cancer group took them and I could not help but wonder if I had done the right thing by stopping them. I do also believe in quality of life. I try to eat right most of the time but fall off the wagon, sugar being my temptation which I know feeds the cancer, but life is short and I need to enjoy it. I have had breast cancer, uterus cancer and reacurrance of the uterus in my vaginal cuff. I try and to keep all my tests current being proactive has probably saved my life.

I have quit my anastrozole so my onc. Is doing a breast index test to see how beneficial the med will be ... Maybe u could ask for this test😊

20%?? @ihnsbc? Recent studies show it is closer to half that do not complete the full course of anti-hormonal treatment due to the debilitating side effects. (Links supporting that statement and quotes from the studies are below.) Other sources do show higher compliance, more like the 80% you state.

That is good your oncologist supports you in maintaining a reasonable quality of life. One encouraging comment I was given was that women who could not tolerate the drugs initially sometimes did better 5-10 years later. You could also give Tamoxifen or Raloxifene a try. Very recent studies show that low-dose Tamoxifen is effective.

https://journals.lww.com/amjclinicaloncology/Abstract/2018/05000/Patient_reported_Adherence_to_Adjuvant_Aromatase.14.aspx
“Using the MMAS (Morisky Medication Adherence Scale), only 50% of women with stage 1 to 3 breast cancer reported high adherence to AI therapy, consistent with other reports showing suboptimal adherence to adjuvant endocrine therapy.”

https://www.nursingtimes.net/home/behind-the-headlines/women-who-stop-taking-breast-cancer-drugs-risk-early-death/5056861.article#
“Looking at prescription data the researchers found women were on average less likely to stick to their treatment over time. This is known as adherence to treatment. In the first year, for example, women adhered to treatment 90% of the time. This figure dropped to 50% by the fifth year."

https://www.karger.com/Article/Abstract/100444
"In clinical practice settings, only 2 reports addressed longer-duration (>4 years) adherence to adjuvant tamoxifen use. In these, tamoxifen was prematurely discontinued by 30–50% of the patients. Conclusion: Adherence to prescribed breast cancer hormone therapy has not received concerted attention."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5731975/:
Van-Herk-Sukel et al. reported that about 50% of the breast cancer patients discontinued tamoxifen or any endocrine treatment before the recommended treatment period of 5 years [13]. Hershman et al. suggested that only 49% of breast cancer patients took adjuvant endocrine therapy for the full duration.

https://www.ncbi.nlm.nih.gov/pubmed/20058066
"Half of breast cancer patients discontinue tamoxifen
and any endocrine treatment before the end of the recommended
treatment period of 5 years: a population-based analysis" That’s the title of the report

https://www.sciencedirect.com/science/article/pii/S0748798311006986
"Non-compliance rates are similar in patients treated with AIs, tamoxifen (TAM), or a sequence of both, and ranges between 40 and 60%. Reports confirm that these high rates are largely attributable to the presence and severity of adverse effects."