Conflicted on taking medication

I am meeting on July 6 with my oncologist at Mayo Clinic in Jacksonville. I chose a bi-lateral mastectomy for IDIS in both breasts, 2 tumors in each , grade 3 and grade 1. Lymph nodes were clear and margins were also. I am looking at nutritional options also. At 73, I really don’t want to go through chemo or heavy meds. I am a 25 year survivor of non-Hodgkin lymphoma and have been through the chemo and radiation. Praying for a good report on my hormone levels.

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I was diagnosed with Stage 1 BC, Grade 2, invasive Ductal Carcinoma (IDC) with 2 small tumors in right breast. ER+PR+HER2 negative. 1 lymph node out of 5 was + for small area of metastasis. Ki 67 proliferation rate 50%, Oncotype 27, just two digits over into the “will benefit from chemotherapy” category.

I prayed about it since my Oncologist at Mayo Clinic Jacksonville had to recommend it based on the stats. I needed to make a decision and was conflicted, so I had another appt with him. I made the decision to say no to IV chemo based on my borderline stats and how challenging it would be to not have bad side effects because of current health issues in exactly the areas the chemo would hit. He understood my concerns and how my already-difficult quality of life is. He did say he would be ok with the decision, but I would definitely need hormone chemotherapy, to which I agreed, so I start on anastrozole 1 mg tonite, for 5 yrs. I also signed up for a research study on what dosage would benefit patients with ER+ tumor profile, with fewer side effects. Did your Dr prescribe depression, pain or anxiety meds? Is there another drug besides tomoxifen you could try? I know it’s a hard decision to make and I’m not saying what your decision should be; just sharing my story which may help you. I do think it’s important for you talk with your Oncologist again. Wishing you the best!

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I was diagnosed at 80 this year with DIC had a partial mastectomy and a MRI showed no lymph nodes involved or cancer in the other breast No radiation Was started on Tamoxifen 2 weeks post surgery Took 20mg then Oncologist decreased to 10 mg I took it for 3 months had no objections to taking drug Never missed a dose Hot flashes, sleep disturbances night seats and getting up to urinate 7 to 8 times a night was difficult But I took it but the sheer exhaustion and bone pain was very hard I could rest or nap when I needed This drug is an old drug been around a long time many women take it I was surprised that it was so hard on my body I stopped sent oncologist a message Well when I stopped it my legs and feet swelled up It’s been 3 months now and finally I think drug is mostly out of my system
I sent a message to Oncologist could I try 5 mg of Tamoxifen a day and a different manufacturer Went to the pharmacist got a different manufacturer Haven’t started it yet Dreading SE’s I see Oncologist next week and will talk to him Still have joint pain
But other side effects have improved I have been having acupuncture to see if might help and I always drink lots of water
Sorry such a long email
Sally

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I’m 60 and started anastrozole in June. I had many/most side effects that you hear- constant headache, bad hand joints, moody, fatigue to name a few. My doctor and I agreed for me to stop taking it for 2-3weeks to see if side effects went away. I did feel back to myself after a couple weeks. I have now started Exemestane. On week 2 and doing well. I have been walking and exercising more, eating better and rarely have alcohol. I’ll hoping this will help.

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I see a lot of literature emerging about less intrusive treatment plans for women 70-over w/ precursor or early invasive cancers. I've also seen that 5 mg Tamoxifen is considered an effective dose now for DCIS.

I'm 57 and have so many comorbidities that, though newly dx w/ Stage 1bN1 w/ mast, I'm declining radiation & any HT, at least for the time being. i'm already debilitated as it is. I've cut out all alcohol & also lost 20 lbs & am transitioning to well-doc low-carb diet to stop helping tumor cells w/ loads of glucose/fructose. I need exercise & much more community, and HT will preclude my rebuilding any of that, which is also documented as a great risk factor.

Everyone has to choose for him/herself. There are great conversations on breastcancer.org debating the risks and benefits of HT and lots of support if you decide to pause/postpone or even desist.

My hope is I could rebuild my life enough to take very low dose. In the 2018 Italian study that demonstrated the wisdom of 5 mg Tamoxifen vs 20 mg, there were even data supporting 1 MG! Apparently, the "20 mg" was only chosen--they said this at the conference--because it was the highest dose that "wasn't toxic." As usual, they didn't believe women's side effects or really care--it was just, what can protect the companies from lawsuits. Attendees & panelists commented (this presentation is on Youtube, actually) that there's no money in conducting studies on reducing dosages, because the drug companies that fund ones that are comprehensive enough to challenge "standard of care" don't see any money in discovering the effective dose at which women will more comfortable. Sad, isn't it?

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It’s so hard to decide. I take anastrozole and I really don’t feel well. But I think if I didn’t take it and have a recurrence, I’d always wonder if I should have taken the medicine. So I’m slogging forward and praying the side effects subside. I hope you do well whatever you may decide. It’s a hard road 🌹

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