Concerned about the side effects of anastrozole

Posted by tinalove @tinalove, Jan 31, 2016

I completed all treatments for breast cancer but now I am supposed to take hormone blocker, named anastrozole. im concerned about the side effects. Has anyone here taken it and did anyone have hair loss?

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@monical

Hello - I was diagnosed with Atypical Ductal Hyperplasia (posted a follow-up on the other thread, but see it must have gotten lost in cyber land). I had a stereotactic biopsy and then a surgical biopsy. The pathology came back clear for DCIS. In fact, there were no ADH cells present either which meant those cells were removed during the stereotactic procedure and left me shaking my head over the stress and recovery from the surgery.

So now I am 59 and faced with taking Anastrozole to try and prevent cancer. Due to family history and the ADH, I fall into the high risk category with >30% lifetime risk of developing breast cancer. I won’t take Tomoxifen because I have a family history of stroke. I’m left with Anastrozole as an option but I already have degenerative discs, arthritis, (controlled) hypertension and occasional abnormal liver enzymes. I DON’T WANT TO TAKE THIS DRUG. I’m supposed to start taking it tonight but then realized my oncologist never took a baseline blood for the liver enzymes so I will hold off until I speak w/ her (it’s in her clinical notes but a fairly big over sight if you ask me).I have a 30 day supply and try very hard to just look at this as a “trial”, but it is scary. I don’t have cancer but I have to fill my body with a drug that perhaps will prevent (only) an estrogen fed future cancer, but then maybe I’m taking this all for nothing because I could fall in the percentage of people who never develop cancer (my mother didn’t, but my sister, material aunt and cousin did).

I’m angry. My husband is scared that I won’t feel well. I’m scared that if I don’t take the medication I will regret it. I’m scared that if I do take the medication I will regret it. And though I asked a couple of times, my doctor won’t check my estrogen levels either. I am somewhat bothered by the fact that the FDA has approved the use of this drug to treat cancer, but has not done so for the use of a CPA (chemoprevention agent) for high risk women. I know that, with the support of clinical studies, doctors use drugs for off-label purposes, but it bothers me. Anyway, now I know I am rambling...I just feel that it is all a big crap shoot.

Best wishes to all of you that are dealing with so much...there are some days I feel so overwhelmed by it all it takes my breath away.

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monical
I first had Stage 0 LCIS (Lobular). Had the same biopsy and surgery and two years later I had invasive Stage 1 Lobular Cancer. I was unable to tolerate Tamoxifen and have been unable to tolerate the AI's as well (post mastectomy). I felt awful and I had to pass on the drugs. Did I get Stage 1 because I couldn't/didn't take the drugs? I'll never know .....BUT, I did get very regular screenings and continue to do so (even without breasts) and that saved me. It turned into cancer for me but it was caught very early (luckily). If you choose not to use the drugs, be vigilant about mammograms, ultrasounds and MRI's....don't just settle on a mammogram however. My cancer was NEVER A LUMP...it was originally microcalcifications that tipped them off to the LCIS and it was a painful cyst I demanded they ultrasound that showed something suspicious. The MRI showed the invasive cancer. Up to the day of my surgery to remove my breasts, no lump or abnormality showed up on a mammogram. (But this is lobular cancer and it's tricky that way, grows in lines often vs lumps).
If you try the drugs, you may be pleasantly surprised and have no serious side effect! If you feel truly awful (which I did), you can quit taking it and the issues after taking it small time go away very quickly with no lasting ill effects.
Since they didn't actually find more cancer cells in your lumpectomy.........perhaps watchful waiting is a good option for you.
Hugs

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@cindylb

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3874410/
Samy - You got me curious about this..........I'm not sure the link above will work. I'm not very good at links and such but this is an article on the NCBI-NIH (National Institutes of Health) website.
I looked at several articles. They are written in medical language and it takes a while to plow through them but...this one references 'older breast cancer patients' and treatment options, including AI's. There are several studies listed on the difference between Lobular and Ductal and AI effectiveness and 'the older' patient .........I think we're all 'older', ha ha....but it does address some of our concerns.
If you can't get to the article, Google or Websearch, effectiveness of AI's in early stage or Stage 1 cancer. I found lots of studies.
The upshot I got was this...........the AI's work but side effects and compliance by older patients are a strong consideration and Lobular really is different than Ductal and is just now being treated as such.
Hugs...........

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THANK you for that article. It’s the closest to answering my question. It would seem that radiation OR radiation+AI drug doesn’t produce a significant difference mortality. Although this is only one person’s opinion, it doesn’t surprise me. I’ll read it several times, to understand as well as I can … and keep searching for more ino. Bottom line is, I guess, I need some serious convincing that this poisonous drug will be worth it for someone my age…so far, I am NOT convinced. The “lump” I had was never felt, by me or doctor, mammogram found it and subsequent tests confirmed. 1.6cm very deep.

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@samy

THANK you for that article. It’s the closest to answering my question. It would seem that radiation OR radiation+AI drug doesn’t produce a significant difference mortality. Although this is only one person’s opinion, it doesn’t surprise me. I’ll read it several times, to understand as well as I can … and keep searching for more ino. Bottom line is, I guess, I need some serious convincing that this poisonous drug will be worth it for someone my age…so far, I am NOT convinced. The “lump” I had was never felt, by me or doctor, mammogram found it and subsequent tests confirmed. 1.6cm very deep.

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samy.....I hear you on this. I felt and feel much the same way. The results are conclusive that the drugs help with recurrence but not for everyone. It's a mixed bag.......and a tough decision. Keep researching and your answer will come. The good news is, I guess, the drugs are always there for us.
Hugs

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@cindylb

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3874410/
Samy - You got me curious about this..........I'm not sure the link above will work. I'm not very good at links and such but this is an article on the NCBI-NIH (National Institutes of Health) website.
I looked at several articles. They are written in medical language and it takes a while to plow through them but...this one references 'older breast cancer patients' and treatment options, including AI's. There are several studies listed on the difference between Lobular and Ductal and AI effectiveness and 'the older' patient .........I think we're all 'older', ha ha....but it does address some of our concerns.
If you can't get to the article, Google or Websearch, effectiveness of AI's in early stage or Stage 1 cancer. I found lots of studies.
The upshot I got was this...........the AI's work but side effects and compliance by older patients are a strong consideration and Lobular really is different than Ductal and is just now being treated as such.
Hugs...........

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This is very interesting article - but written in 2013. I wonder if they have any more recent data - I'll ask my oncologist. But I don't see her until July.

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@cindylb

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3874410/
Samy - You got me curious about this..........I'm not sure the link above will work. I'm not very good at links and such but this is an article on the NCBI-NIH (National Institutes of Health) website.
I looked at several articles. They are written in medical language and it takes a while to plow through them but...this one references 'older breast cancer patients' and treatment options, including AI's. There are several studies listed on the difference between Lobular and Ductal and AI effectiveness and 'the older' patient .........I think we're all 'older', ha ha....but it does address some of our concerns.
If you can't get to the article, Google or Websearch, effectiveness of AI's in early stage or Stage 1 cancer. I found lots of studies.
The upshot I got was this...........the AI's work but side effects and compliance by older patients are a strong consideration and Lobular really is different than Ductal and is just now being treated as such.
Hugs...........

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That article about "Early breast cancer in the older woman" is a good find, @cindylb. Note that it is from 2012, @samy, but it is a great place to start making lists of questions for your oncologist. I did some digging around as well and found these 2017 articles.
- Aromatase inhibitors for early-stage breast cancer https://www.ncbi.nlm.nih.gov/books/NBK447104/
- Aromatase inhibitors in the extended treatment of early-stage breast cancer https://www.ncbi.nlm.nih.gov/books/NBK447116/
- Aromatase inhibitors as upfront therapy for early-stage breast cancer https://www.ncbi.nlm.nih.gov/books/NBK447121/

@monical, you raise some valid concerns. When your doctor prescribed anastrozole for you, did you have time to tell her about your concerns or are they coming up now as you learn more about possible side effects? Maybe it would be a good idea to schedule an appointment to get your concerns addressed before starting.

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@colleenyoung

That article about "Early breast cancer in the older woman" is a good find, @cindylb. Note that it is from 2012, @samy, but it is a great place to start making lists of questions for your oncologist. I did some digging around as well and found these 2017 articles.
- Aromatase inhibitors for early-stage breast cancer https://www.ncbi.nlm.nih.gov/books/NBK447104/
- Aromatase inhibitors in the extended treatment of early-stage breast cancer https://www.ncbi.nlm.nih.gov/books/NBK447116/
- Aromatase inhibitors as upfront therapy for early-stage breast cancer https://www.ncbi.nlm.nih.gov/books/NBK447121/

@monical, you raise some valid concerns. When your doctor prescribed anastrozole for you, did you have time to tell her about your concerns or are they coming up now as you learn more about possible side effects? Maybe it would be a good idea to schedule an appointment to get your concerns addressed before starting.

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Thanks for the links. Wish they were age-specific, they’re not. But, you’re right, I have questions - basically only one question, really. Are AI drugs worth taking at my age? It’s not complicated question, it’s a quality of life “yes or no” issue for me. The idea of being debilitated with pain because of these meds until age 74 is not acceptable. I’ve a history of many sinus infections, sinus surgery that caused a stroke and hemianopsia, high BP and heart palpitations, both successfully treated with meds. I just don’t want to make life worse, it’s not worth it to me. From what I’ve read, some are unfortunate enough to have horrible symptoms linger after stopping the drug. I just don’t want to play.

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@samy

Thanks for the links. Wish they were age-specific, they’re not. But, you’re right, I have questions - basically only one question, really. Are AI drugs worth taking at my age? It’s not complicated question, it’s a quality of life “yes or no” issue for me. The idea of being debilitated with pain because of these meds until age 74 is not acceptable. I’ve a history of many sinus infections, sinus surgery that caused a stroke and hemianopsia, high BP and heart palpitations, both successfully treated with meds. I just don’t want to make life worse, it’s not worth it to me. From what I’ve read, some are unfortunate enough to have horrible symptoms linger after stopping the drug. I just don’t want to play.

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samy..........you are weighing your options well. Talk with your doctors about your feelings and also your existing medical conditions. My current oncologist knows I wasn't keen on the drugs but when so many side effects hit me with 3 out of 4 options.....he has been supportive and understanding that I don't want to live like that.
To put that in perspective a little - my husband was diagnosed with cancer 15 months ago At the time of diagnosis and until today, they know the cancer is in his lung and nearby lymph node and was found through a CT scan for his COPD. Here's the hard part.......they don't even know what type of cancer it is!! Yup, not consistent in any of the many tests, scans and the many genomic and pathological studies to be a certain cancer. They told him he would be dead in 12 months max. He's still here. In addition, the only treatment they can offer is chemo, but multiple types of chemo - because they don't know what kind of cancer it is. They took surgery, radiation, SBRT radiation and all targeted and immumotherapy off the table for him early on. They just offered every massive type of chemo they could find. He declined. He is using medical marijuana only and although he isn't well generally........he is not dead (thank goodness) and his tumor has shrunk over the last 12 months and his cancer activity in his blood is up, but only slightly. My point is this.........he could have done what not one but three doctors suggested and had all that chemo and the side effects months ago and been sick all this time. Perhaps the cancer would be gone, but perhaps not. Sometimes doctors can only offer what they have and what they know. But what they don't know........whether it will work for any specific individual. The ultimate decision is the patients and that's tough on us. For my husband, doing nothing and waiting has been the right decision .....so far....it might not be down the road, but for now, he wasn't willing to be ill the last year of his life (which is now, NOT the last year of his life). If you feel strongly that you don't want these drugs, do all you can to be well and make sure your doctors keep a close eye on you for recurrence.
Hugs!

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@colleenyoung

That article about "Early breast cancer in the older woman" is a good find, @cindylb. Note that it is from 2012, @samy, but it is a great place to start making lists of questions for your oncologist. I did some digging around as well and found these 2017 articles.
- Aromatase inhibitors for early-stage breast cancer https://www.ncbi.nlm.nih.gov/books/NBK447104/
- Aromatase inhibitors in the extended treatment of early-stage breast cancer https://www.ncbi.nlm.nih.gov/books/NBK447116/
- Aromatase inhibitors as upfront therapy for early-stage breast cancer https://www.ncbi.nlm.nih.gov/books/NBK447121/

@monical, you raise some valid concerns. When your doctor prescribed anastrozole for you, did you have time to tell her about your concerns or are they coming up now as you learn more about possible side effects? Maybe it would be a good idea to schedule an appointment to get your concerns addressed before starting.

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Colleen, Can you find articles or studies on any of the following topics:
--reoccurence percentages for postmenopausal women taking AIs vs taking tamoxifen/
--side effects of the steroid in Aromosin and its effectiveness compared to other AIs
Thank you.
Francine

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@francine6829

Colleen, Can you find articles or studies on any of the following topics:
--reoccurence percentages for postmenopausal women taking AIs vs taking tamoxifen/
--side effects of the steroid in Aromosin and its effectiveness compared to other AIs
Thank you.
Francine

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I would really appreciate this insight too as I am starting anastrozole. Just scared of the side affects but have been told it will be highly beneficial for me!😌

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Well, all, off to second opinion medical oncologist today. I read and read articles your comments and I want to know! I want to know why no hormone blood tests, no mri, and no discussion about possibility of not doing AIs.
I question it because of the stage of my cancer 1a, the additives doctors want to each of the meds, the side effects, and I followed orders why does my percentage go up????
It gets very disheartening having to be my own advocate, but reading through doctor notes again I would be on AI for 10 years! I am almost 65, retired, just starting to travel, and have 4 young grandsons...quality of life has to be in there, too.
Thank you for all your posts and realistic open opinions.
With appts every 6 months for the next few years hope to catch anything if there is a recurrence anywhere.

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