Anastrozole - should I take?

Posted by jspeterson55427 @jspeterson55427, Jul 1 10:19am

I'm 73, and was recently diagnosed with stage ER/PR+, HER-2- Invasive ductal carcinoma, grade 1a, of the R Breast and had a lumpectomy. I have a 13 Oncotype DX score and negative for the BRCA1 and BRCA2 genes after doing genetic testing. In 1994, I had stage 1 breast cancer of the L Breast and had chemo and radiation. Then, in 2001, I had a complete hysterectomy (including ovaries) after being diagnosed with stage 1 uterine cancer. The radiation in 1994 caused me to develop a left bundle branch block of the heart. I haven't made a decision whether to take the suggested Anastrozole. I'm considering alternative treatments rather than take Anastrozole because I've heard horror stories about its side effects. I already have macular degeneration, and the left bundle branch block. If you have a similar story, or refused the AI inhibitors because of side effects, could you share it with me?

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Jane W. | @ladyofthelake1 | Jul 6 3:46pm

In reply to @kods "Also … I’m taking tamoxifen as I didn’t tolerate AI’s. Initial diagnosis at 64 and no..." + (show)

Negative genetic also for me.
Mine is IDC too
We are so very similar types.

They did MammaPrint for me.

Did your surgeon recommend taking out your ovaries? Did he even mention that?

windyshores | @windyshores | Jul 7 5:02am

In reply to @ladyofthelake1 "Negative genetic also for me. Mine is IDC too We are so very similar types. They..." + (show)

@Janwe W. I have heard of people with positive BRCA gene having both breasts and ovaries removed. For BRCA negative I have not heard of anyone having ovaries out, unless they are premenopausal and want to take an aromatase inhibitor, but ovaries can be suppressed rather than removed.

That said, there are a few articles on this and here is one description of a study supporting this surgery: https://www.obermair.info/latest-news/blog/breast-cancer-hysterectomy-and-removal-of-ovaries-and-tubes/ This is from 11 years ago and deals mostly with premenopausal women Here is another https://breastcancernow.org/about-breast-cancer/treatment/hormone-endocrine-therapy/ovarian-suppression-and-breast-cancer/ This discusses ovarian suppression and removal to help with breast cancer- again pre-menopause. The site breastcancer.org only discusses ovary removal in the context of BRCA.

I am wondering if this came up for you because you already have had a hysterectomy. This article says only women who have had both uterus and ovaries removed get this benefit for their breast cancer- again, mostly pre-menopause. I just can't ascertain if this is relevant to someone who has gone through menopause (and is BRCA negative) and would like to know what your oncologist thinks.

Post-menopause most of us have ovaries that aren't doing much so we take aromatase inhibitors to reduce estrogen produced by the adrenals below detectable levels. I have been told that after menopause only the adrenals and fat produce estrogen.

Have you asked you surgeon why they want to remove your ovaries? Can they share a study? What does your oncologist say? Would you get a second opinion?

sue417 | @sue417 | Jul 7 8:34am

In reply to @ladyofthelake1 "Thank you, I hope so, but you never know I’m still scared to get radiation and..." + (show)

Hi
I was er/pr + her 2- stage 0 clear nodes. I did 15 treatment radiation. Was great thru radiation but fatigue after is brutal it's been 3 mths now. I did not do hormone blockers AI due to already having osteopenia with compression fracture in t7. Tried tamoxifen for 6 days could not tolerate. Wish you well

Jane W. | @ladyofthelake1 | Jul 7 9:12am

In reply to @sue417 "Hi I was er/pr + her 2- stage 0 clear nodes. I did 15 treatment radiation...." + (show)

Thank you for your share, helpful.

Are you still fatigued or getting better? How long did fatigue last?

Wow stage 0 - lucky 🍀 you. Plus clear nodes. Caught it quick.

sue417 | @sue417 | Jul 7 10:46am

In reply to @ladyofthelake1 "Thank you for your share, helpful. Are you still fatigued or getting better? How long did..." + (show)

Hi
Yes I had no idea it was there caught on my 2yr mammo check up. Oh the fatigue is not getting better it's 6mths to a yr until you feel like yourself I have been told. I have to gauge how much I am going to do in a day. I try to walk 20min a day. I belong to a zoom bc support group which helps alot. So you know your not crazy with the side effects. Its starting to get me down plus going off hrt has been difficult 😫

Tenaya_Lake | @tenayalake86 | Jul 7 11:14am

My history is much less complex than yours. Following a diagnosis of DCIS, I had a lumpectomy 2 years ago, with a lymph node analysis which was determined to be clear. My cancer was small, less than 2 cm and estrogen-positive so I was prescribed anastrozole. I took it for 6 months but the side effects became so severe that my oncologist told me to quit. He did not recommend any other similar med, because he said I'd have the same kinds of side effects. My last side effect was so severe that my whole body cramped up, and I had trouble getting out of bed after having dealt with the other side effects, e.g., hot flashes, weight gain, and a slight change to my personality [I became more snappish, comments less filtered, and less tolerant of some people in my life].
Having said all that, some people have little to no side effects. My advice is to try it, and if the side effects are similar to mine, talk to your onco. Good luck.

Jane W. | @ladyofthelake1 | Jul 7 1:04pm

In reply to @sue417 "Hi Yes I had no idea it was there caught on my 2yr mammo check up...." + (show)

Omg 😱 I hope your fatigue improves. Glad you’re walking. I just joined a zoom group too and trying to find a local group in my area. Stay well 🫶🏻

sue417 | @sue417 | Jul 7 1:44pm

Hi
The zoom groups help alot. All the ladies told me the same thing.Six months 21 year after radiation to get back to normal

jspeterson55427 | @jspeterson55427 | Jul 7 2:35pm

In reply to @tenayalake86 "My history is much less complex than yours. Following a diagnosis of DCIS, I had a..." + (show)

Thanks for your comment. I started Anastrozole 4 days ago, and so far, no side effects. I told the Oncologist I would at least try it.

Tenaya_Lake | @tenayalake86 | Jul 7 5:16pm

In reply to @jspeterson55427 "Thanks for your comment. I started Anastrozole 4 days ago, and so far, no side effects...." + (show)

My extreme body aches started about 5 months in. Up to that time, I was enduring the weight gain, hot flashes and feeling unfiltered or less filtered with my husband and maybe others [snapping, saying things without thinking, etc.] I really hope you can stay on it. Good luck to you. I think you are right to give it a try.