Concerned about the side effects of anastrozole

I was stage 2B lobular carcinoma 2.1 cm tumor with 3 lymph nodes invasive. I was 65 at the time of original diagnosis. I am now 75. I had a double mastectomy and did 4 rounds of adromyicin/cytoxin and 4 rounds of taxotere. My radiologist decided against radiation because of my age (65) and because my tumor was right on the margin of not doing it which she said was 2cm. My cancer was in the left breast and the radiologist said I could develop heart problems and possibly leukemia down the road because it was near my heart. I also did 5 years of an aromatase inhibitor. My metastisis was found accidentally when I went to the ER for a stomach bug (which cleared up with antibiotics) and the CT showed enlarged lymph nodes in the portahypatic area (near the liver but not in it) I had multiple types of scans and no other cancer was found in any major organs or bones, lungs, liver or brain. I am back on letrozole as the metastisis is also er positive. I get pet scans every three months. I never had any symptoms that my cancer had returned and am lucky it was discovered on my trip to the ER. I feel great and live my life grateful. If things change, and they very well could down the road, I will deal with it. Since my reoccurrence in 2022 I have met numerous women who are living anywhere from 5-20 years after metastasis. I am not dying from cancer I am living with it.

@cathyn your post is geared to DCIS, I assume. Those of us with grade 3 invasive cancers do tend to give serious consideration to these meds. Just to clarify different situations make for different points of view!

I was stage 2B lobular carcinoma 2.1 cm tumor with 3 lymph nodes invasive. I was 65 at the time of original diagnosis. I am now 75. I had a double mastectomy and did 4 rounds of adromyicin/cytoxin and 4 rounds of taxotere. My radiologist decided against radiation because of my age (65) and because my tumor was right on the margin of not doing it which she said was 2cm. My cancer was in the left breast and the radiologist said I could develop heart problems and possibly leukemia down the road because it was near my heart. I also did 5 years of an aromatase inhibitor. My metastisis was found accidentally when I went to the ER for a stomach bug (which cleared up with antibiotics) and the CT showed enlarged lymph nodes in the portahypatic area (near the liver but not in it) I had multiple types of scans and no other cancer was found in any major organs or bones, lungs, liver or brain. I am back on letrozole as the metastisis is also er positive. I get pet scans every three months. I never had any symptoms that my cancer had returned and am lucky it was discovered on my trip to the ER. I feel great and live my life grateful. If things change, and they very well could down the road, I will deal with it. Since my reoccurrence in 2022 I have met numerous women who are living anywhere from 5-20 years after metastasis. I am not dying from cancer I am living with it.

I am just curious to know if you have found another AI wich does not raise blood lipids.

You don’t “have” to take a hormone blocker. I had surgery for DCIS, and after going over everything (the biomarkers especially)and asking a lot of questions, I decided (and my doctor agreed) that it’s a very low risk of coming back invasive, we are just going to monitor more frequently. I have osteoporosis and depression, and it’s just not right for me at this time. Good luck and ask lots of questions!

I have not tried any other AI. Will ask Oncologist at next appt about other options that don’t raise lipids.

May I ask what stage your breast cancer was when you were first diagnosed. Also how old you were ? So sorry for your recurrence.

Here’s my 2 cents. I took letrozole (same drug as anastrozole just different manufacturer) for five years after double mastectomy and 8 rounds of chemo. I stopped after my five years in 2018. Yes, I had bad side effects, achy joints, bone loss, always tired and also hair thinning. I had enough after 5 years. In 2022 I was diagnosed with metastatic breast cancer in the portahypatic area (lymph nodes near the liver but not in it). A laparoscopic surgery to remove 2 lymph nodes and pet scan confirmed that my breast cancer had returned. I am one of the lucky ones. It is not in my bones, brain, lungs or liver as of right now but I will live with metastisis for the rest of my life. I get pet scans every three months and am now back on letrozole which is helping keep the lymph node cancers in check, meaning they are not currently growing.
I wish to God I had kept taking letrozole after five years, which I had been advised to do but I stopped because I was tired of that little pill.
Today, I gladly swallow it every morning without fail and I bless it for doing its job in my body. To date I do not have to take any other drug but I know many others who do.
I pray none of you become metastatic. It is an uncertain, sometimes scary place to be. I am active, walk 35 minutes every day, eat a plant based diet and have excellent weight.
I now love that little pill that I cursed for five years. Perspective is everything.

@marcia115 many of the women I know, myself included, did not have significant side effects with these meds. I found that walking more than 20 minutes helped. I did 5 years and wanted to do 7 but a test then showed no further benefit. I actually miss it!

I personally think it makes sense to try it since the experience seems to vary so much from person to person.