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Aromatase Inhibitors: Did you decide to go on them or not?
Nanaloves: I’m about to start arimidex and just feel that the contraindications , bone issues etc. are overwhelming. I’m 70 years old, dodged a bullet I feel with zero stage DCIS but the follow up is pretty much no different then if it was more aggressive. I’ve just done 33 treatments of radiation and now they advise arimidex as a preventative. I’m not sure with the beginnings of arthritis and lower back. sensitivity already that I should take it. Anyone not take it and not have a recurrence within the 5 years.
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@songsparrow maybe stop reading about the effects of estrogen 🙂 For many of us, it wasn't that bad. I felt safe on the meds and was sorry to stop. You may do fine. It's worth a try.
Ditto on these books.
I appreciate the words of support, and I am happy that so many of you have been able to take them without any severe effects. I've been on anastrozole for a year now. The side effects weren't bad at first, mostly just really bad hot flashes, but they don't bother me anymore. I have hereditary high cholesterol though, and had osteopenia at my initial DEXA scan. Haven't had intercourse with my husband since my diagnosis (too painful). I have memory loss and confusion. The pain and stiffness in my knees is pretty bad. I'm 49, but I feel like I've aged 20-30 years in the past 12 months. I have my appointment with my oncologist in a few hours though, so I will voice my concerns to him.
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4 Reactions@songsparrow Ohhhhhh sorry I didn't know you had started! So sorry you are suffering.
I had pretty serious osteoporosis when I went on letrozole... Luckily I don't have a partner!
I had a really productive conversation with my MO today. I explained my concerns about my current side effects and any potential future side effects, and he confirmed that they are all risks, but manageable. We talked about the possibility of switching to Tamoxifen to see if my side effects improve, and he agreed it would fine (although slightly less effective) and better than not taking anything at all. We talked about my recurrence rate, which he doesn't know exactly (my conditions were so favorable that we agreed the oncotype was unnecessary), but it's going to be single digits since my conditions were so favorable. That being said, I feel like a dummy because I had thought recurrence rate referred to the chance that I would get another breast cancer like I just had. I had incorrectly assumed that if I get cancer again it would be treated like this one, so the extra 5% protection against recurrence didn't seem that significant. When I learned that it was extra protection against metastatic disease, I changed my tune very quickly. Knowing this, I will stay on the medication and just hope that Tamoxifen works for me. Even though 10% sounds low, it's not low enough for me to feel good about my odds. I don't know how it will turn out, but I am hopeful at the prospects of feeling better about myself and my life.
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5 Reactions@songsparrow you raise a really really good point. Ther is recurrence locally, regionally, and then there is metastasis. I think the term "recurrence" is very misleading and am going to start using "spread."
Sounds like you have a very accommodating doctor and hope tamoxifen is easier for you!
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3 ReactionsI think that the usage of 'recurrence' and 'spread' is confusing as well. The only objection I have to the word spread is that it can imply, in common usage, that cancer cells were somehow missed during surgery or not deactivated during radiation or chemo. That is, in a sense, it can allow an inference that physicians didn't do a good job and missed something that then "spread." [I'm thinking particularly of melanomas and other skin cancers which were later found to be incompletely removed. It's a very scary thing and I know two people who died of a likely preventable cancer because a dermatologist removed too little tissue. ]
Even the word recurrence can be confusing because it suggests that a certain kind of cancer occurred a second time but in fact a recurrence can have a totally different genetic profile than the original. Or can share the same profile.
The imprecision of the language makes it tricky when reading medical research because one needs to know exactly what is meant by recurrence or spread. To me, it seems as if the better term would be 'subsequent occurrence' but the odds of changing the common terminology are slim I suspect.
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1 ReactionSongsparrow I had read your earlier post and I can relate. I started anastrozole 3 months ago and had all of the same concerns about side effects and long term health issues. As it is right now Im managing side effects ( muscle weakness , hot flashes and extra palpitations ) I looked for advice and Information from the wonderful people on this board and I'm grateful for them. I'm glad you had a good visit with your doctor and was able to have a solution. Hope this one works for you. Remember you're not alone !!
Callaloo and windyshores thanks for all of your insights.
Stay strong everyone and keep fighting!!!💪
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2 ReactionsI have been on anastrozole for a month now and have little side effects if any. My problem is that i am already in full osteoporosis and the anastrozole is only going to make that worse. My dr first suggested taking tamoxifen but that makes me nervous because of all the possible problems-stroke, blood clot, uterine cancer, etc. I also have a major problem in my mouth with my teeth that need treating but I can't be on osteoporosis drugs while doing dental treatments. Ugh! What to do?!
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1 ReactionI had osteoporosis before starting letrozole and did the whole 5 years. Most people do Reclast or Zometa with it, but my docs didn't want me to due to afib (since disproven as a risk). I stopped at 5 years and am now on Tymlos.