Letrozole and checking estrogen levels

Radical Remission is doing a free docuseries this week 10/3-7

I lost my post but will try again!

Just for balance in the discussion, and with respect for all those who suffer serious side effects. I and several women I know did not have a lot of problems with AI's. I was on Femara for 5 years and did a Breast Cancer Index that indicated no further benefit if I did 7-10 years. I was disappointed. I miss the feeling of safety from cancer.

Yes I had hot flashes at first, and joint pain that resolved if I walked at least 30 minutes. I had already had osteoporosis for 8 years and doc did not want me to take Reclast (long story) so I had accelerated bone loss the first year, then in years 2-5 it stabilized. Side effects, for me, tended to change and lessen to the point that I felt fine- and safe. So I was lucky. I just don't want new readers to assume the worst until they try a med. And try different ones, different manufacturers, or even brand name, before giving up.

As for hormone levels: logically, regardless of low hormone levels after menopause, those of us of a certain age still apparently had enough estrogen from our adrenals to feed our cancer (If our test showed hormone responsiveness). And if our tests showed our tumors were responsive to ER and PR, then meds that eliminate adrenal estradiol should be helpful. (Apparently fat is another source.) Not sure what a test would tell us, really.

And after reading the insert for Femara, I understood that even a 20% dose makes estrogen "undetectable" so a full or alternate day dose would both effectively eliminate estradiol. So why would a test be needed? It seems enough studies have been done to show that adrenal estrogen is eliminated.

The most useful tests in regard to hormonal therapy would seem to be 1)ER and PR levels (mine were high) 2) the Oncotype (I was low despite grade 3 and LVI) and 3) 5 years later, the Breast Cancer Index, which gives both risk level and benefit of extending meds past 5 years (I am high risk, no benefit).

I’m considering stopping my meds. I took Anastrozole for 4 months after radiation was completed (Stage 1a ductal carcinoma in situ of lower inside quadrant of right breast). Anastrozole attacked my joints badly. My medical oncologist told me to take July off, which I did, then I started Letrozole in August. This one affects my sleep, my moods and my weight. It’s almost like being back in Peri-menopause. I cry over nothing some days. Overall I have not been myself since I’ve started the drug regimen. I am weighing the 2-4% “benefit” versus quality of life. Instead of celebrating being cancer free, I feel like I’m living with a cancer that hasn’t been cured.
I will be 69 yrs old in Dec, which is also the month I’ll be one-year post surgery (lumpectomy and 3 lymph nodes removed).
As always, this is my journey, so I don’t propose to know what is right for someone else. Bless all of you who are on your own journey as it is life-changing, nonetheless. 💕

Thank you for this post. This is almost exactly my story. I had a double mastectomy, with clean margins and clear lymph nodes in October 2021, and a low OncoDX score of 11. I will be 70 in December. You put it very well. "Instead of celebrating being cancer free, I feel like I'm living with a cancer that hasn't been cured." I had very severe side effects on Letrozole. That prompted me to do more research. I have some heart issues and my bone scan revealed osteopenia. I have pretty much decided to work on building up my immune system through diet and supplements, exercising more, controling my weight and using techniques to lessen stress. I am waiting for an appointment with a integrative oncologist. My medical oncologist is not happy with my decision and doesn't have any other support to offer, except yearly palpation of the mastectomy scar. I feel pretty much on my own to find support, but I'm working on changing my mindset to celebrating a win over cancer and feeling grateful for everyday and the love and support of my family and friends. It is indeed a life changing experience and a very personal one. I too, send my best to all on this journey.

My visit with the oncology NP today has given me a 3-month reprieve from the inhibitor drugs. I have my first post op mammogram in late December (my 69th bd will be Dec 8th). She told me finish out this year on a break, have a good holiday and plan to see my oncologist on Jan 3rd to reevaluate my situation. I said, “will that mean I have to take the next inhibitor drug?”. She said, “you don’t HAVE to take anything - we’ll just present your next option, but ultimately, it’s your call.”
So as things stand today, I will be drug free through the rest of this year. I so look forward to feeling better. Love & prayers to all the brave women on their journey. 💕🙏

@2r3b
I asked my oncologist when I first started the AIs back in March & he said that the bloodwork doesn’t show estrogen levels - that they are looking for cancer indicators in the bloodwork.
I would be very interested same as you, to find a way to check that specifically.

Studies cited in the Femara insert say that even at 20% dose, estradiol levels are not detectable. I don't see the usefulness of blood tests since studies showed that the meds were effective in basically eliminating the hormonal level. Maybe someone can explain why these tests would be helpful.

Me too .

Try reading Radical Remission and Radical Hope both by Kelly Turner..
10/3-7. Dr Turner is presenting a free on line docuseries on Radical remissions. YouTube is also carrying it on HayHouse channel.

Thanks Dee Chase,
I wish you a good and pain free recovery as well. I have been to a naturopath doctor today to find out about "Mistletoe therapy". It's offered here in Switzerland as an alternative medicine treatment in conjunction with radiation/chemo or hormone therapy. It's exactly as you said to boost the immune system in order for your own body to fight the cancer cells. I will be doing that.
Another treatment that is available but in another "holistic clinic" is called fever therapy. They activate a fever on purpose, and raise the body temperature to a level that causes you to sweat and during the high temperature, apparently, the body can fight cancer and other such viral sicknesses. I may or may not give it a try at a later stage. Right now, I would prefer the mistletoe rather than letrozole because my risk is quite low in comparison to the side effects of osteoporosis and Cholesterol, both of which I'm already progressing towards. I don't need to add more medicines, to combat those which again have their own side effects. !
Mistletoe, does not "cure" cancer as such but is only a complementary treatment to combat the effects of radiation/chemo etc. And boost the immune system. I think it is very much used in Europe, and Asia, but I can't say if it's available in America.
Good luck.