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Concerned about the side effects of anastrozole

Breast Cancer | Last Active: Apr 27 1:15pm | Replies (1931)

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@cindylb

Hello Samy
I tried Tamoxifen when I was first diagnosed (when I was pre menopausal) and my blood pressure, which is normally low shot up to really high levels and I had constant headaches. They took me off of that and 2 years later I had Stage 1 invasive cancer. Would the tamoxifen have stopped that? I'll never know. Following bi lateral mastectomy for Stage 1 invasive lobular I first tried Letrozole. I had severe depression (which is what was the worst for me), pain in my hands and wrists and knees almost immediately. I was on it two weeks when I developed Shingles (at age 59) and was quite ill from that. The doctors and I agreed that I should stop Letrozole and try Arimidex, which I did. Arimidex was just as bad, perhaps a little worse and after 3 weeks on it (including trying every other day) I had the usual symptoms and blood in my stools. At that point the doctors said I was 'lower risk' and the drugs were causing side effects that could be severe. Once I stopped the drugs I had no joint pain, no depression (except for the usual......I have cancer and this sucks) and my health improved dramatically.
At my last 6 month follow up (with a new oncologist) I brought up using the drugs again and he said, you are low risk and the side effects, for you, are not worth it. If you get a recurrence you will have to take them but for now, 3 1/2 years in, I am not using them.
I really didn't want to take the drugs because I'd read up on the side effects but I was willing to give them a try and see how I reacted because I sure don't want cancer. Many people will have side effects but you won't hear much from those who don't have side effects, they simply move on, so it's hard to judge. I am 61 now, so I was 56 when first diagnosed (5 years ago) and am 3 1/2 years out from the surgery.
I will say this...............it's overwhelming and physically and emotionally draining with breast cancer treatment. There is no rush to start the drugs I know of (?) If you are at that point and want to wait 3 months or so to regain your strength, ask your doctor if that would be ok? That way you can start at your strongest point and judge the pills then? I went right into the pills while I was still recovering from surgery and lymphedema and all sorts of stuff. That might have taxed my body as well.

When I was diagnosed, had surgery, etc........it all happened pretty fast. I didn't have much time to process so I was beat up really. I did consider my quality of life because I didn't want to feel sick for another 5 years because I hadn't felt sick at all prior to the diagnosis (I think that's often true of all of us). I was also concerned about having side effects like bone loss and then having to take pills for that, having a hear condition caused by the pills and then having to take pills for that, etc....it can be a cascade of pills and unfortunately I think that's how a lot of doctors approach this. Remember, an oncologist is there to treat and cure cancer and not all of them see the bigger picture of treating or curing the cancer and leaving the patient with osteoporosis, heart disease, etc..... Some do, but not all.
This is NOT an easy decision..........see if your doctors will allow you to process this for a while or give the pills a chance and we'll all keep our fingers crossed that you're one of the lucky ones with few if any side effects!!
Hugs

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Replies to "Hello Samy I tried Tamoxifen when I was first diagnosed (when I was pre menopausal) and..."

@cindylb- Thank you, Cindy. Beautifully stated.

Thank you for the response.

I have pored over forums and websites and cannot find an answer to a really simple question: Is stage 1 survival significantly different with this drug, any AI drug, for someone pushing 70? If there is no significant difference in mortality rates, I don’t want to take it.

If anyone reads or hears about a study or something specific, I’d REALLY appreciate the link.

Hi Cindy,
I am new to the forum so just seeing your story. I really appreciate you sharing your experience and hope that you are doing well.