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

I am stage 1 breast cancer and have been on Anastrozole since last august. I am 64 years old. I have a 9 percent chance of cancer returning if I am not on this medication. I am going off this drug based on the following. The side effects are destroying my quality of life. I am mean irritable, can’t sleep, my chest is tight, I have mucous in my nose, sore throat, headaches and brain fog. When I bring up the side effects the doctor always tells me they can give me more drugs to counter the side effects. They offered me anti depressants. Then it was Zometra for osteoporosis which can cause my teeth to fall out. And they will because I have thinning gums. It is just adding one drug after another drug and for what? Thirty years ago my 86 year old mother went to Mayo Clinic telling the doctors we have a history of osteoporosis in our family. The doctors put her on Fosomax for several years. She paid $350 a month for her medication. The result of this drug did MORE HARM and has made my mother osteoporosis so bad she breaks bones at any little fall. She has lost 7 inches on her height. She has broken her rib by putting on her seat belt. She has broken her back when laying down at a doctor office in her late 70s. She had to fuse her back together at Mayo. Every time she breaks her bones it is a trip to ER hospital and massive rehab with tons of pain. This Easter she fell while using a Walker and is now in hospital and rehab for broken bones! She has been in and out of hospitals because of her osteoporosis and is massive pain! She cries every day. Recently 7 doctors at St Cloud hospital looked at her trying to figure out what happened to my mother. Hell it was the damn drugs they gave my mother thirty years ago that did this to her.

I now follow a wholistic doctor. I have bought myself a Peloton and ride my bike every day. I go to Y and do weight bearing exercises. I have lost 30 lbs and eat healthy. None of this is ever talked about at Mayo while I battle breast cancer. It is drugs drugs drugs! We are in a profit driven sick care system. We pay the most for health care out of any other G-7 country and we have the lowest mortality rate. You need to be your own advocate for your health.

I will dig out my records. For one of those, I think it was close at 4.5% for the low risk cutoff. but I don't want to rely on memory. I did these tests at the 5 year point of AI treatment. Breast Cancer Index tells you benefit of continuing on anti-estrogen meds, since many now do 7-10 years. It gives risk of distant recurrence for years 5-10.
Prosigna Assay, also known as PAM50, also measures risk of distant recurrence in years 0-10 for those treated or going to be treated with anti-hormone meds.

You mentioned "throwing everything at" a cancer, including chemo. That concept went out the window with genomic testing. According to the Oncotype, there is no change in risk by not doing chemo for those with scores indicating no benefit. In fact, chemo may do more harm than good.

I will dig out my scores. I was shocked that with my Oncotype of 8, these other tests had me at high risk. Oncotype basically told me that chemo was not of benefit. But with grade 3 and LVI I had my doubts about low risk. Nevertheless I am 7 years out, knock on wood!

Thanks. So in a sense the tests are measuring different things as well. Or different things at different stages.

For what it's worth, I would likely have done what you did because of the LVI.

I do think it's interesting that Oncotype's website gives examples of scores which purely clinical evaluation might have seen differently. The patient with a large, stage 4 tumor and lymph involvement and low risk according to the test at least. And a patient with a grade 0, clean lymph biopsy but a risk for recurrence of 50+% according to the test.

That certainly seems counter-intuitive and, for the grade 0 patient, might have yielded a more-attentive post-surgical follow-through since some doctors are considering grade 0 almost a pre-cancer.

For what it's worth, the science guy I talked to at Oncotype said that, from what they see, the grade 0 specimens being submitted to them 'are definitely cancer' and his inference was that the medical community might be underestimating their seriousness.

I am stage 1 breast cancer and have been on Anastrozole since last august. I am 64 years old. I have a 9 percent chance of cancer returning if I am not on this medication. I am going off this drug based on the following. The side effects are destroying my quality of life. I am mean irritable, can’t sleep, my chest is tight, I have mucous in my nose, sore throat, headaches and brain fog. When I bring up the side effects the doctor always tells me they can give me more drugs to counter the side effects. They offered me anti depressants. Then it was Zometra for osteoporosis which can cause my teeth to fall out. And they will because I have thinning gums. It is just adding one drug after another drug and for what? Thirty years ago my 86 year old mother went to Mayo Clinic telling the doctors we have a history of osteoporosis in our family. The doctors put her on Fosomax for several years. She paid $350 a month for her medication. The result of this drug did MORE HARM and has made my mother osteoporosis so bad she breaks bones at any little fall. She has lost 7 inches on her height. She has broken her rib by putting on her seat belt. She has broken her back when laying down at a doctor office in her late 70s. She had to fuse her back together at Mayo. Every time she breaks her bones it is a trip to ER hospital and massive rehab with tons of pain. This Easter she fell while using a Walker and is now in hospital and rehab for broken bones! She has been in and out of hospitals because of her osteoporosis and is massive pain! She cries every day. Recently 7 doctors at St Cloud hospital looked at her trying to figure out what happened to my mother. Hell it was the damn drugs they gave my mother thirty years ago that did this to her.

I now follow a wholistic doctor. I have bought myself a Peloton and ride my bike every day. I go to Y and do weight bearing exercises. I have lost 30 lbs and eat healthy. None of this is ever talked about at Mayo while I battle breast cancer. It is drugs drugs drugs! We are in a profit driven sick care system. We pay the most for health care out of any other G-7 country and we have the lowest mortality rate. You need to be your own advocate for your health.

@kilkennyfarmwife,
As @auntieoakley mentioned, you may wish to contact Mayo Clinic’s Office of Patient Experience.
Mayo Clinic Office of Patient Experience
Phone: 844-544-0036 (toll free)
Email: opx@mayo.edu

Have you ever explored the webinar offerings of Mayo's Cancer Education Center? They've moved many of their classes about nutrition, exercise, stress, bone health, etc. online so that they are accessible whether you're at Mayo Clinic or back at home. Follow the Cancer Education blog and class listings here: https://connect.mayoclinic.org/blog/cancer-education-center/

@muradangie and @roch may have more tips of classes and services available to you as a Mayo Clinic breast patient. For example, did you see an oncology dietician/nutrition specialist? Did you know that this sevice exists?

I am stage 1 breast cancer and have been on Anastrozole since last august. I am 64 years old. I have a 9 percent chance of cancer returning if I am not on this medication. I am going off this drug based on the following. The side effects are destroying my quality of life. I am mean irritable, can’t sleep, my chest is tight, I have mucous in my nose, sore throat, headaches and brain fog. When I bring up the side effects the doctor always tells me they can give me more drugs to counter the side effects. They offered me anti depressants. Then it was Zometra for osteoporosis which can cause my teeth to fall out. And they will because I have thinning gums. It is just adding one drug after another drug and for what? Thirty years ago my 86 year old mother went to Mayo Clinic telling the doctors we have a history of osteoporosis in our family. The doctors put her on Fosomax for several years. She paid $350 a month for her medication. The result of this drug did MORE HARM and has made my mother osteoporosis so bad she breaks bones at any little fall. She has lost 7 inches on her height. She has broken her rib by putting on her seat belt. She has broken her back when laying down at a doctor office in her late 70s. She had to fuse her back together at Mayo. Every time she breaks her bones it is a trip to ER hospital and massive rehab with tons of pain. This Easter she fell while using a Walker and is now in hospital and rehab for broken bones! She has been in and out of hospitals because of her osteoporosis and is massive pain! She cries every day. Recently 7 doctors at St Cloud hospital looked at her trying to figure out what happened to my mother. Hell it was the damn drugs they gave my mother thirty years ago that did this to her.

I now follow a wholistic doctor. I have bought myself a Peloton and ride my bike every day. I go to Y and do weight bearing exercises. I have lost 30 lbs and eat healthy. None of this is ever talked about at Mayo while I battle breast cancer. It is drugs drugs drugs! We are in a profit driven sick care system. We pay the most for health care out of any other G-7 country and we have the lowest mortality rate. You need to be your own advocate for your health.

@kilkennyfarmwife,
As @auntieoakley mentioned, you may wish to contact Mayo Clinic’s Office of Patient Experience.
Mayo Clinic Office of Patient Experience
Phone: 844-544-0036 (toll free)
Email: opx@mayo.edu

Have you ever explored the webinar offerings of Mayo's Cancer Education Center? They've moved many of their classes about nutrition, exercise, stress, bone health, etc. online so that they are accessible whether you're at Mayo Clinic or back at home. Follow the Cancer Education blog and class listings here: https://connect.mayoclinic.org/blog/cancer-education-center/

@muradangie and @roch may have more tips of classes and services available to you as a Mayo Clinic breast patient. For example, did you see an oncology dietician/nutrition specialist? Did you know that this sevice exists?

@kilkennyfarmwife I am sorry for your troubles. Have you tried a different manufacturer for your anastrazole? Or tried Femara instead? You could also try alternate days. The difference between a 9% risk and a 4.5% risk seems significant to me, but I understand if that is not how you feel.

I am so grateful for aromatase inhibitors, because they allow us to avoid chemo. But I was lucky in finding Femara easy to tolerate. I switched to brand name Femara from generic anastrazole. In general I do well with TEVA if I have to take a generic.

I believe that Zometa can cause dental problems mostly in cancer patients who take very high doses, and also after several years of use. I am not sure about teeth falling out because jaw necrosis is what we usually hear about. Biphosphonates are useful with aromatase inhibitor treatment because those drugs cause bone loss. I believe that Reclast is gentler than Zometa. My doc even said a partial dose could be used, with Benadryl and tylenol beforehand, hydration and a slower infusion. You could also consider Fosamax orally if you don't have GERD.

Your mother's story is disturbing but 30 years ago they were giving biphosphonate drugs even for early osteopenia and did not yet know that extended use after 5-10 (I am not sure) years would cause brittler bones, and atypical fractures. You don't say how long your mother was on a biphosphonate. Can you tell us?

I have declined many drugs, including blood thinners. However, I have a kid on insulin for type 1 diabetes and an anti-convulsant for seizures. I am grateful to researchers and drug companies for these because without them she would not be alive.

I am on Tymlos now after cancer treatment. Once you have fractures, these bone-growing drugs provide hope. Was your mother ever offered Forteo? I am so sorry for her pain.

They told me that 30% of grade 3's have low Oncotype scores.

I am stage 1 breast cancer and have been on Anastrozole since last august. I am 64 years old. I have a 9 percent chance of cancer returning if I am not on this medication. I am going off this drug based on the following. The side effects are destroying my quality of life. I am mean irritable, can’t sleep, my chest is tight, I have mucous in my nose, sore throat, headaches and brain fog. When I bring up the side effects the doctor always tells me they can give me more drugs to counter the side effects. They offered me anti depressants. Then it was Zometra for osteoporosis which can cause my teeth to fall out. And they will because I have thinning gums. It is just adding one drug after another drug and for what? Thirty years ago my 86 year old mother went to Mayo Clinic telling the doctors we have a history of osteoporosis in our family. The doctors put her on Fosomax for several years. She paid $350 a month for her medication. The result of this drug did MORE HARM and has made my mother osteoporosis so bad she breaks bones at any little fall. She has lost 7 inches on her height. She has broken her rib by putting on her seat belt. She has broken her back when laying down at a doctor office in her late 70s. She had to fuse her back together at Mayo. Every time she breaks her bones it is a trip to ER hospital and massive rehab with tons of pain. This Easter she fell while using a Walker and is now in hospital and rehab for broken bones! She has been in and out of hospitals because of her osteoporosis and is massive pain! She cries every day. Recently 7 doctors at St Cloud hospital looked at her trying to figure out what happened to my mother. Hell it was the damn drugs they gave my mother thirty years ago that did this to her.

I now follow a wholistic doctor. I have bought myself a Peloton and ride my bike every day. I go to Y and do weight bearing exercises. I have lost 30 lbs and eat healthy. None of this is ever talked about at Mayo while I battle breast cancer. It is drugs drugs drugs! We are in a profit driven sick care system. We pay the most for health care out of any other G-7 country and we have the lowest mortality rate. You need to be your own advocate for your health.