Concerned about the side effects of anastrozole

Hello. New member of the club, here. Stage 1 lobular on the left, LCIS right. Lumpectomy surgery couple weeks ago. The surgeon says radiation for a month and Arimidex for 5 years. I’m 68 and wondering if I should just do the radiation and screw the hormone stuff. Former smoker with mild COPD, currently on BP and cholesterol meds that are doing fine. The internet research of Arimidex is the reason I’m here. … and … frankly, you’ve all terrified me. Quality of life on this drug sounds like an absolute nightmare.

In a message subsequent to this, you indicated that you decided not to take the AI drug(s). Have you ever taken them, i.e., did you stop or just never start? The decision I’m grappling with is taking this drug at all. As I said, I’m 69 in a month - is Stage 1 survival going to be that much different with or without this drug? And is poor quality of life for a huge % of the rest of my life worth it? I realize I’m “only” 69, but in 5 years that’s “only” 74 - it just doesn’t seem worth it and I’d be better off taking my chances with just radiation. I know nobody can say take it, or don’t take it … it’s up to me. But, it’s a horrible choice. I’d still be living with the unknown of “possibly” getting cancer again, whether I subject myself to 5 years of this debilitating drug or not.

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

How do you convince your doctor or doctors to run the blood tests or mri!
I am so sick of the scare tactics!
Well, in the beginning your chances of recurrence was 12%. Now with radiation it is 7-10% having a hysterectomy it is 3 to 9 %. But take the meds and you go to 3-5% recurrence...
So, I followed orders except for the meds side effects were way too much.
So next appt doctor gets pissy and says,"Well, now you are at 20% because you won't take your meds and the cancer will return in your bones or lungs get ready!"
We see a new oncologist Monday! Bad thing there: they are good friends! OMG

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

samy - VERY good questions. I am on my second AI (Aromosin) and starting the feel the aches and pains (not as bad as Femura), but still. Have you asked your oncologist if you could go on Tamoxifen? Yes, I know this is a first generation drug, and primarily for pre-menopausal women, HOWEVER, i know postmenapausal women who used it and did not experience side effects. I would like to the reoccurence rates for Tamoxifen vs the new AI drugs?

Welcome to Connect.

I think the decision to take an AI for 3-5 years is one of the harder decisions of dealing with Breast Cancer. I took Arimidex for 6 months prior to surgery as part of research study. As a result, I know the Arimidex did what it was suppose to do based on test results during diagnosis and then again after 3 months of Arimidex. With that being said, it came with side effects, for me it was depression.

I stopped taking after surgery, then did chemo and radiation. I have had multiple discussion with oncologist about AIs and have agreed to try Letrozole for a month and then will meet with oncologist again.

I am willing to try it, but if side effects are to severe, I will re-evaluate.

Everyone has different reactions to meds. And you hear more from those who have negative side effects then those with no problems. My sister had breast cancer and had no problems with AI.

Good luck
Laurie

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.