Spring 2018 Starting Hormone Blockers

Jane, Veeder, Kay and any other inquiring minds out there..

Here's a basic rundown of how all this works:

If your BC is ER+, it means estrogen fuels the growth of the cancer cells. The higher the ER+ % the more dependent on estrogen the cancer cells are. So someone who has ER+ 100%, their cancer cells are pretty much completely dependent on estrogen. For those who have an ER+ % lower than 100%, their cancer cells still utilize estrogen for growth but it's not all they use for growth. So does that mean someone who has <100% ER+ should not take anti-hormonal meds/anti-hormonal meds won't work for them? No that's not the case at all. Think of estrogen like a vitamin for the cancer. We all know that our bodies require certain vitamins and minerals to grow, thrive and survive. Without certain ones, we can die, start to deteriorate, lose our strength, etc. it works very similarly with ER+ BC.

Now onto estrogen physiology... Before menopause, most of the estrogen in a woman's body is made by the ovaries (approx 80%). The other 20% comes from the androgens released by the adrenal glands.

After menopause (natural, surgical or thru suppression) the ovaries stop producing estrogen. That means that the 20% that was being made by way of the adrenal glands is the new 100% of our circulating estrogen.

How do the adrenal glands and fat fit into this puzzle? Androgens are produced by the adrenal glands and are made into estrogen in fat tissue through a process known as aromatization (the aromatase enzyme is the key to the androgens being converted to estrogen by our fat cells). AIs like aromasin, letrozole, and arimidex inhibit the aromatase action so that the androgens cannot be converted to estrogen.

So what if I'm skinny or I'm overweight? How does that factor in, does it make a difference? Everyone of us, regardless of BMI, size, weight, etc. has subcutaneous fat (the layer of fat that lies between the skin and muscle) and some level of visceral fat (the fat behind the abdominal muscles that surrounds our organs), so aromatization will happen regardless of how thin or heavy you are. Unless you are taking an AI. If you're on tamoxifen, the aromatization process continues and estrogen is produced, but the tamoxifen blocks it from being able to enter the cells in the target tissue.

I hope this helps!

Lula73, that is the best explanation of AI's - thank you. Very helpful!! Can I ask what factors determined your decision to have the prophylactic ovary removal? I am in the process of deciding if I need to have mine removed. My genetic testing came back negative on all tests.

L8Blmr- 4 things influenced my decision:

1) tested positive for BRIP1 genetic mutation which increases risk of ovarian cancer (plenty of ovarian cancer history on my dad's side of the family in the older women)

2) by the time I took tamoxifen for 5 years or suppressed my ovaries for 5 years to take an AI, I would be 1 year away from the recommended age for removal due to the BRIP1 so why wait? Plus I could get a “twofer" and have them out during my stage 2 recon surgery.

3) tamoxifen tried to kill me with a DVT and bilateral PEs just 2.5 months into therapy.

4) See my answer to Veeder below

Veeder- Removing the ovaries reduces your estrogen by 80%. The adrenals don't ramp up their production or anything, it's just that the small amount they're making is your new 100% amount. (Ex: Using theoretical round numbers- let's say estrogen level before ovary removal is 100 with 80 of it made by ovaries and 20 made by aromatisation process. After ovary removal, estrogen level is 20 representing all or 100% of the estrogen currently being made by your body).

4) from above... In head to head studies, AIs were shown to have superior efficacy/lower recurrence/mets risk than tamoxifen. (Likely because tamoxifen doesn't block estrogen uptake from all tissues.) So yes, there are benefits to having the ovaries removed. At age 44 with a 13 year old, 2 adorable grandchildren a wonderful DH, and a strong desire to keep from being diagnosed with cancer a 5th time,I need every bit of efficacy I can get!

The surgery was one of the easiest I've ever had. I ended up having all the baby making parts removed including the cervix. I kept asking if they were sure they did the surgery because there was no pain. And it is so very nice to not have to worry about a period, unexpected bleeding, cramps, pregnancy, etc. I hope this answers your wuestion

Veeder, Have you had any conversations about how long one can safely wait before starting Tamoxifen? I'm holding off on starting until after I see the gyn Dr next week to follow up my concerning pelvic ultrasound results-- BS said it was wise that I had waited to start until after the ultrasound but we did not discuss whether or not there was a timeframe for how long I might safely wait.

To hormone blocker takers with DCIS, did anyone else read this paragraph in Beesie's article on DCIS?

UPDATED - Tamoxifen is currently the only endocrine therapy approved for women who've had DCIS. For women with invasive cancer, while Tamoxifen is given to pre-menopausal women, post-menopausal women often are prescribed an Aromatase Inhibitor (either Arimidex or Aromasin or Femara). Aromatase Inhibitors (AIs) are not yet approved for women who've had DCIS. Recent studies have however shown that the AIs may be more effective than Tamoxifen at reducing recurrence. Based on this, and in anticipation of the approval of AIs for women with DCIS, the 2016 NCCN Guidelines now indicate that post-menopausal women with DCIS may choose to take either Tamoxifen or an AI. The guidelines note that there may be some advantage for aromatase inhibitor therapy in patients <60 years old or those who have concerns about thromboembolism.

Has this been updated by the NCCN since 2016?

Hi Veeder,

Thanks for sharing your reasons. Hope you have a great vacation.

Checking in. Last week was so very difficult. Every major joint--shoulders, wrists, hips, knees, and ankles--were so painful that I had to use a delivery service for my groceries. I could not walk without pain; I had trouble going up and down stairs in my home. Not even sure I moved out of my chair much for most of the week. My pain was so intense that I spent two nights tossing and turning, unable to get comfortable and thus unable to sleep. It felt like I'd aged by decades. I decided on my own to stop taking anastrozole for a week to see if that joint pain was a side effect of anastrozole, or if it was a sudden increase in the arthritis I already had.

After five days off anastrozole, I feel like I'm beginning to return to my old self. I have slept for two nights, finally. My hip and lower spine, which were the most arthritic prior to my BC diagnosis, still bother me. But not like they did last week. And I'm almost pain-free in the other joints. Plus I got my own groceries today.

Next step: I'm going to call the MO in two days--once I've been off for a full week--and see if he wants to see me earlier than my June appointment.

I honestly didn't think I'd have many side effects, or that they'd increase, since I'd been taking anastrozole since March 1.

I'll let you know what the MO says later in the week. I suspect he'll give me a prescription for letrozole.

Marigold - that sounds terrible. Your update reminds me that the RO said SEs may present as late as 90 days out from beginning hormone therapy. When discussing AIs, my MO did say some of her patients had no SEs at all, and I am wondering if pre-existing conditions contribute to the possibility? I see her on July 20th, and will follow up. I'm curious about these things: why hurt some but not others? Is there a trigger, or is it simply random? Did you read Paco's update, above, about Tamoxifen vs Aromatase Inhibitors? Please let us know what your doctor says. And feel better!

Paco - I'm just reading your note on Beesie's update. That's wild. I mean I'm taking an AI and had DCIS. And it's not approved? That's my first impression. My second is that approval seems imminent, and will give post-menopausal women choices. Although I was never offered Tamoxifen. <smh> I'm going to show this to my MO and ask wth? I go to awn accredited cancer institute, backed by a research university. Why do I have to read this at bc.org? It frustrates me to see mixed messages. I'm going to find Beesie's update and her citation. (and she always has a citation) What did her update mean to you?

HI Marigold,

So sorry you have had such a bad time on anastrazole. I hope the letrozole will be a better option for you.

I have been on the anastrazole for about 5 weeks now and have not noticed any joint pain even though I do have some osteoarthritis.

Kaywrite. like you, I have had a few hot flashes but nothing really troublesome. I did have concerns about weight gain initially, but am stable weight . I want to lose, but at least i am not gaining .

CTM, let me know if your friend has any reccomended exercises for bone strengthening . I walk 2 miles /day and work in my garden, but no other specific exercises. Perhaps I need to research what exercises would be beneficial to prevent osteoporosis.

I have noticed that I am more moody and irritable and I guess this is from decreased estrogen as i had similar feelings when I went through the natural menopause 15 years ago.

Kay - After reading Beesie's update, I am left gobsmacked by the lack of information, or conflicting information, we receive, yet again, on what seems to be pretty standard care. I am pre-menopausal (or rather, perimenopausal) so I figured Tamoxifen was the only choice I had in terms of follow up therapy. I will see my SO in August, so I'll ask her then. I kind of remember her saying that as soon as I entered menopause, she would switch me to an AI. Not sure why, now. I was never assigned an MO (maybe because it's "only" DCIS and my treatment is "only" Tamox). Do report back if you find out anything!

In other news, there is happily, none. Bottle 1 down as of this morning, 59 bottles of Tamox to go (cue the music). No SEs to report but maybe I'm just not noticing them. I frequently have unexplained aches and pains but I chalk them up to aging....

Happy Memorial Day weekend everybody!

Hi everyone! So happy to see this board and to meet new friends. I'm on day 7 of Femara (letrozole), finished radiation about a month ago. So far so good, nothing to report. Same number of hot flashes as usual (I'm 54--2 years into menopause). Most worried about cognitive and concentration problems in the next few months/years so trying to read lots every day; also working on Japanese. Requested the brand name because I'd read of greater SEs on the generics, and was surprised to find that Cigna covered Femara fully. Hearing next week if I'm in the Pallas trial, which would mean adding Ibrance for two years. I'm only 5% ER positive, but those 5% were strongly reactive; the MO says Ibrance will probably do more for preventing progression than the AI. Or the cancer will ignore it all and behave like triple-negative, go figure. Eating a low-methionine diet just in case. Inspired by ya'll's good eating. Getting used to being up in-the-air about everything. Anyway, fingers crossed for all of us to find ways to tolerate (and even thrive!) on this stuff.

hi everyone, I started tamoxifen about a week ago, around the same time I started radiation. No obvious side effects but I am generally tired and have stiff joints. That could be caused by a number of things.