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Aromatase Inhibitors: Did you decide to go on them or not?

Posted by nanato6 @nanato6, Oct 12, 2018

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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shelleyc | @shelleyc | Aug 17, 2020

@crazydaisy I also did not take anything. I had stage 0 dcis with clear margins. I did 20 rounds of radiation with a lot of side effects that they said were not usual. I have had enough of the side effect thing. I agree with the quality of life argument. If I had a different type of breast cancer or an advanced stage I would probably consider it, but I have a good friend who is 17 years out, did not take anything, and is cancer free. I have another friend who is 6 years out with no cancer, so I am going to hope for the best and move on. I have already decided that if I get cancer again I will have a mastectomy so with that plan in mind I can move on.

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3 replies
saucy | @saucy | Aug 17, 2020
In reply to @jeannie53 "@crazydaisy I'm with you. I started anastrozole and took it for 6 months. The bone pain..." + (show)
@jeannie53

@crazydaisy I'm with you. I started anastrozole and took it for 6 months. The bone pain made me feel like I was 90 years old. After consulting with my doctor she told me I should have never taken it for that long with the pain I was in. I was changed to tamoxifen took it for 3 months and again started to feel more pain. I have decided to not take anything. My quality of life is more important than these drugs that make you feel worse. The last straw was when my new doctor suggested that I take the tamoxifen again. When I questioned him about my concerns with blood clots and ovarian cancer he said no big deal about the ovarian cancer you just get a hysterectomy. Needless to say I need a new doctor. My chances of recurrence are low and taking tamoxifen would cut it in half. We all have to do what we feel works for us good luck in you decision I know it's a tough one.

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My doctor wanted me to take anastrozole for preventive treatment. For every side effect I asked about he had a drug to counteract it. I don't take meds now and have no intention of going down that road to increase the profits of drug companies! I'll be proactive in mammograms ect.

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crazydaisy | @crazydaisy | Aug 17, 2020
In reply to @shelleyc "@crazydaisy I also did not take anything. I had stage 0 dcis with clear margins. I..." + (show)
@shelleyc

@crazydaisy I also did not take anything. I had stage 0 dcis with clear margins. I did 20 rounds of radiation with a lot of side effects that they said were not usual. I have had enough of the side effect thing. I agree with the quality of life argument. If I had a different type of breast cancer or an advanced stage I would probably consider it, but I have a good friend who is 17 years out, did not take anything, and is cancer free. I have another friend who is 6 years out with no cancer, so I am going to hope for the best and move on. I have already decided that if I get cancer again I will have a mastectomy so with that plan in mind I can move on.

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That’s what I think too. Thanks

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kathyomaha55 | @kathyomaha55 | Aug 17, 2020
In reply to @shelleyc "@crazydaisy I also did not take anything. I had stage 0 dcis with clear margins. I..." + (show)
@shelleyc

@crazydaisy I also did not take anything. I had stage 0 dcis with clear margins. I did 20 rounds of radiation with a lot of side effects that they said were not usual. I have had enough of the side effect thing. I agree with the quality of life argument. If I had a different type of breast cancer or an advanced stage I would probably consider it, but I have a good friend who is 17 years out, did not take anything, and is cancer free. I have another friend who is 6 years out with no cancer, so I am going to hope for the best and move on. I have already decided that if I get cancer again I will have a mastectomy so with that plan in mind I can move on.

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Did they explain to you if it comes back - it may not be in the breast? It more likely comes back in the bones, brain, lung and liver. And that's why I decided to take the meds, But I'm only 64 and since switching to Exemestane, have only a few side effects. The joint pain is pretty much gone. I just wanted to make sure they told you that about re-occurrences.

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2 replies
crazydaisy | @crazydaisy | Aug 17, 2020
In reply to @jeannie53 "@crazydaisy I'm with you. I started anastrozole and took it for 6 months. The bone pain..." + (show)
@jeannie53

@crazydaisy I'm with you. I started anastrozole and took it for 6 months. The bone pain made me feel like I was 90 years old. After consulting with my doctor she told me I should have never taken it for that long with the pain I was in. I was changed to tamoxifen took it for 3 months and again started to feel more pain. I have decided to not take anything. My quality of life is more important than these drugs that make you feel worse. The last straw was when my new doctor suggested that I take the tamoxifen again. When I questioned him about my concerns with blood clots and ovarian cancer he said no big deal about the ovarian cancer you just get a hysterectomy. Needless to say I need a new doctor. My chances of recurrence are low and taking tamoxifen would cut it in half. We all have to do what we feel works for us good luck in you decision I know it's a tough one.

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Unbelievable that a doctor would say that. I have decided not to take anything

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1 reply
saucy | @saucy | Aug 17, 2020

Mine was prescribed for preventive after genetic testing. I'm a healthy 68, Doctor wants me on it in case I get breast cancer.

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1 reply
kathyomaha55 | @kathyomaha55 | Aug 17, 2020
In reply to @crazydaisy "Unbelievable that a doctor would say that. I have decided not to take anything" + (show)
@crazydaisy

Unbelievable that a doctor would say that. I have decided not to take anything

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We each make the decision that is best for ourselves. I wish you luck and respect your decision.

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kathyomaha55 | @kathyomaha55 | Aug 17, 2020
In reply to @saucy "Mine was prescribed for preventive after genetic testing. I'm a healthy 68, Doctor wants me on..." + (show)
@saucy

Mine was prescribed for preventive after genetic testing. I'm a healthy 68, Doctor wants me on it in case I get breast cancer.

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Well - that is interesting, even I think that is weird. I respect your decision and may have made the same one.

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cindylb | @cindylb | Aug 17, 2020
In reply to @crazydaisy "I’m suppose to start the terrible pill in two weeks and have decided not to. All..." + (show)
@crazydaisy

I’m suppose to start the terrible pill in two weeks and have decided not to. All the bone issues and other complications. Quality of life will be forever changed. The pill is only 50 percent effective anyway. If you get bone issues which everyone does they put you on another pill like Boniva which affects your long bones and turns them to Swiss cheese. My friend was in that junk and she was just walking along and broke her femur and the surgeon immediately took her off that pill. If you get high cholesterol then they put you on that pill. Pill after pill after pill. Even after the five years there are lasting affects

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I haven't posted in a while but this caught my eye. I will be five years cancer free (so far) in November this year. I couldn't tolerate any of the pills and I tired them all.........I was first diagnosed with Stage 0 Lobular carcinoma, had lumpectomy and tried Tamoxifen. It gave me terrible pain, headaches and raised my usually low blood pressure to terrible levels. Unfortunately I got Invasive Lobular cancer Stage 1 in two years. If I'd been able to take the pills....would I have avoided that? I'll never know but I had a bi lateral mastectomy and was lucky not to have any lymph node involvement and here I am five years later. I tried all the pills after the mastectomies and they all made me feel truly 100 years old and terrible. I am on my fourth oncologist and he is the only one who said, 'don't take the pills'....go for quality, you're pretty low risk and suggested I do Yoga (ha ha).....I do a little yoga now. You have to follow your gut on this. Doctors jobs are to 'cure' us and follow their protocols for what works for MOST PEOPLE......it isn't everyone. And what caught my eye here was that I also refuse to take a pill to solve the problem caused by the pill the doctors give you for one thing and on it goes. It's a rabbit hole that's never ending.
I recently had a CT scan for my lung health (ex smoker) and my lungs are fine but my heart is showing some mild calcification (narrowing of the arteries). I'm glad to know and want to do all I can to keep my heart healthy of course but.........the 'soon to be my ex doctor' suggested statin drugs (known to have many side effects) to reduce my cholesterol....but I don't have bad cholesterol at all. The statin can cause severe muscle pain (which I already have due to osteoarthritis) and her answer was another drug, Cymbalta for the pain that the statin will cause. I'll find another doctor, try to assess risk, figure out the most natural method of keeping myself healthy and move on.

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