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Any long-term success stories from those NOT taking hormone therapy?
Breast Cancer | Last Active: Aug 22 11:02pm | Replies (101)Comment receiving replies
I was diagnosed with a contralateral primary breast tumor 4 1/2 years after the first. Both were stage 1, N0, clean margins. I declined AI after the first. I am 79 and primary caregiver for my paraplegic husband and side effects could make this job even harder. He wasn’t yet paralyzed ( after an accident) when my first cancer was treated. I have mild arthritis and osteopenia. I had radiation after surgery both times. I am still debating taking the AI therapy this time. I had an oncotype dx test and it gave a recurrence score of 1 - as low as possible on the scale. I have seen a couple of oncologists. One prescribed letrozole and one suggested tamoxifen because it has fewer side effects. Having two tumors in less than five years pushes me to try the meds this time. The oncotype dx recurrence score makes me lean to again refusing all drugs, especially because of my caregiver responsibilities. .
Questions — For those who have tried these drugs, how quickly did the side effects show up after starting them? For those who took them and stopped, how quickly did the side effects disappear? Thank you.
Replies to "I was diagnosed with a contralateral primary breast tumor 4 1/2 years after the first. Both..."
@annie64 I’m now 74 (diagnosed at 70). Went through surgery, chemo (oncotype positive) and radiation and have now been on ai therapy for 2 1/2 years. Each one has different side effects. I’ve been on Anastrazole and exemestane, currently 6 weeks on letrazole. On Anastrazole, Went through a few mild things (nausea, dizziness) that would last about 2 weeks and disappear. The muscle and joint pain started at about 5 months and progressed. at 9 months, switched to exemestane. With it, weight gain started at 3 months, the unrelenting fatigue at 4 months and then insomnia - which of course didn’t help the fatigue. BUT no real pain (yeah, achy and stiff but meds? post chemo? age?). Stuck with it for 18 months but 2-3 hours of sleep caused other problems - increased heart rate and bp, weakness, loss of balance and worsened brain fog. After 6 week med vacation and almost everything back to”normal”, he finally took me off and now here we are. So don’t know if this will affect me because usually I have to be on for several months to see. He does admit some people can’t take any of the ai meds. My next step is Tamoxifen but I’ll definitely push for baby Tam if it goes there. My biggest concern is if any of this will be permanent after I’m off the meds. If it will all go away, then I can (hopefully) handle another 2+ years.
@annie64 I am so sorry that you have had so much to cope with as far as cancer recurrence and your caretaking responsibilities for your husband. I can imagine the worry, and difficulty and possible pain and fatigue involved in caring for your self while you are so kindly caring for your husband.
There is Help available:
I feel that CANCER CARE and SHARSHERET ( Free Breast Cancer and Ovarian Cancer programs, assistance and services and )
Free MSW social workers might offer resources geared toward providing caretaker for your husband while you recover. And Advucacy fur your health insurance . RED DOOR offers free servyces such as Support Groups , Yoga, Reikki, Meditation, Support Groups MSW counseling etc. I feel that I was greatly helped by these non profits!
,
Your compassion and effort in caring for your husband while you are coming with your cancer and possible pain issues is so very kind.
I feel that your hospital MSW social work department will probably refer you or hopefully arrange for Home Care assistance while you continue with treatment and cope with your own critical care. If you are feeling anxiety or depression( perfectly normal following surgery and given your surgery and your assuming care of your husband) ) ) the Hospital
MSWs, Psychologists and MDs will be able to offer counseling, treatment and assistance,
You are a wonderful and very kind person for so kindly and generously caring for your husband while coping with your own recuperation and treatment! I feel that there are MSWs ,
and non profits that will help you! I hope you wi call 1). your hospital MSW , 2). Cancer Care and 3 SHARSHERET soon amd receive their assistance. I received assistance and MSW Counselling and I feel it was so very supportive and helpful.
Best,🙏
S.
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@annie64 yes 3months into it and now forever, better ways to treat search ask lots of questions until you get the answer that feels right for you, stay as positive and shy away from stressful environments.