aromatase inhibitors - ashamed to ask

edge_of_no_return

honorable fellow warriors -

it is with great shame that i'm putting out this query to see if anyone else has had a mindset similar to what i'm experiencing - i'd be surprised if there isn't a thread somewhere in this incredible community that touches on at least some of what i'm feeling. i say shame because, quietly walking through the topics, i'm blown away by the bravery, ferocity, intelligence, and sisterhood that i see from all of you. just blown away.

context for the question: i was diagnosed in late 2016 two tiny tumours, stage 1 grade 3, ER+ PR+ Her2-. a lumpectomy and rads was and has been successful until a freak medical emergency with a CT scan this past summer showed a lesion on my spine (+2 possible other tumours) that turned out to be the bc metastasized. Which is all manageable, and while my onco at LA Kaiser frustrates me, i gather he's the best of the lot. my concern deals with starting down the path of taking the aromatase inhibitors. just prior to the diagnosis in 2016, i had been hospitalized 3 times for suicidal ideation and was also physically a wreck. i found a personal trainer who specializes in nutrition and had been working with her for 3 months when i got the dx. we've now been working together for 5 years. after rads were complete, i made the decision to not take the inhibitors because i was, and still am, terrified of the anticipated side effects. besides the lifelong depression, for a very long time been coping with GAD general anxiety disorder, terrible IBS, fibromyalgia with its pains and crushing fatigue, ongoing TMJ, restless leg (used to regularly turn the bottom sheets into rags due to the holes worn in them), and overheating + hyperhidrosis (makes "hot flashes" seem like a walk in the park). in other words, a hot ugly mess LOL. i am much more concerned with quality of life than i am with quantity; there was no way in hell i was going to take meds that made me feel worse than i already did - it was hard enough at the time to get to work (a very good job, *great* boss, great benefits including healthcare). big nope then.

so - i'm much healthier and stronger now (diet is now 90% plant based), but am still terrified at the thought of taking the meds. again, quality of life vs quantity - feel like i'll be throwing away my gains by wading into the pharmacological stew. i dearly appreciate the maintenance meds i take to keep my head on straight and my blood pressure down, so it's not meds per se. i am going to start taking them after the first week in December because i cannot say i didn't try, but am crying like the big fat baby i am even as i write this. so - the question: has anybody had a similar experience and if so how did you navigate? the shame is admitting my fear in the face of the bravery you all display each and every day. thank you to anyone who is reading this. namaste

exbrnxgrl

edge,

I'm sorry that you find yourself here. Let me start off by dispelling your illusion that many of us are brave, strong, etc. We are mostly just normal folks who got bc. We are doing nothing extraordinary but as adults we find various ways to cope and carry on. That being said, I understand your concerns given your co-morbidities. Is there any way that a psychiatrist can coordinate with your mo to come up with a plan for an AI plus appropriate psych meds? My medical facility refers patients to a psych who specializes in cancer patients so psych meds and cancer meds are coordinated.

You mention anticipated side effects but please be aware that not everyone experiences all, some or any se's. Please make sure that your mo is aware of your concerns so he/she can work around those things. I have tried all of the AI's and deal with bone/joint pain which I manage. I have also been NEAD (single bone met to femur) for ten years and live a relatively normal life and that's the best se. I know your situation is different from mine but working with your mo may help and if things start to go south, you can quit. Take care.

PS: You have nothing to be ashamed of! You made a decision that you knew came with risks and unfortunately you landed on the wrong side of those risks. You are not the first and you won’t be the last. We make the best decisions we can at the time and that is all we can do. You can’t change the past so put your energy into dealing with the present.

moth

Hi, I'm sorry you find yourself here with a metastatic recurrence.

I'm going to take a step back here & pull out into the big picture.

You have incurable metastatic disease. This is now a known thing. It is real. It is not immediately life threatening but this is an incurable condition.

One of the treatments which potentially will buy you more time here has a small chance of causing more severe side effects. It might, it might not. (I'm not going to say no side effects because most people have some). It is not real yet. It is not a known thing for you.

I think cognitively, it is important to reorient on the knowns.

The AI line of treatment gives many people with ER+ mets years of stable disease. Years to live. WIthout it, you need to jump to next line treatments - maybe a CDK4/6 inhibitor (though usually they want it with an estrogen antagonist). If you don't do that, then it's chemo, either oral or IV. There is no escaping the pharmacological stew. I'm sorry, but we're in treatment for life now.

My suggestions for a proactive approach would be

-ensure that your psychiatrist and oncolgist communicate.

-check in with the mental health team very frequently during the initial phases of starting the AI. Maybe weekly?

-keep a daily log of mood, starting now, right now if you haven't been so far. When you start you want days/weeks of earlier to compare to & see if it's really different. Give a scale for how you feel, & if you can id some specific thoughts that triggered it.

-if you experience problems, you might needs more supportive meds from the psychiatrist ..

-or you might want to switch brands of AIs as people respond differently. Also, there may be dosage alterations - loop a pharmacist into the treatment planning to figure out what dosage is effective in controlling your cancer while minimizing your symptoms.

-CBT can also help with not catastrophizing. The bad thing hasn't happened yet, it might not. If it does, you will find a way to deal with it then.

-Anticipate now that things will change. They have to. Nothing stays the same. It's ok. Some things in the new might be good, some might be bad but you'll figure it out as things come.

-Lastly, we know estrogen is important to many biological processes but also, we women are strong. Sometimes we need to stop giving estrogen too much power & take the power ourselves, kwim?

best wishes

terri-c

edge, if you are completely against AI's, then talk to your oncologist about it. It is VERY important that you explain how you are feeling, they can't know if you don't tell them. Communicating with your onco is one of the most important parts of your treatment regimen.

Like the others have said, the side effects of these meds are NOT in stone. Many people experience few to none. If you do experience side effects that you can't live with, then you tell your onco.

This is your life hun. You get a say in your treatment.

edge_of_no_return

exbrnxgrl, moth and terri-c - thank you so very much for your articulate, no BS responses. i've gotten great comfort and advice and am grateful.

exbrnxgrl - coincidentally, i have an appointment with a new psychiatrist next week. your recommendation of working with a psych that works with cancer patients is great and i am going to check right away to see if he does, if not, who they can recommend, wish me luck with *that*. you are so right that i made my past decision knowing the risks. i don't regret that decision, just gotta stand tall and deal with the now.

moth - love love love your list (i love lists anyway) and boy did you bullseye it with the CBT and mood log - i began CBT with a new therapist and she gave me the mood log assignment yesterday, *and* i just learned the term catastrophizing. wow!

terri-c - i have relayed my concerns to my oncologist and he seemed laissez-faire about it, but did say if i couldn't tolerate the side effects, that we would try something different. my overactive imagination saw months if not years of struggling and slogging through med after med - i've had that experience with meds for the other delightful maladies i have and know that misery. moth said "...take a step back here & pull out into the big picture." that's the drill / my marching orders and it is what it is.

ladies - thank you again. also, i stumbled upon Anne Loeser's Insider's Guide to Metastatic Breast Cancer in the bc community. so begins my learning about the path i'm on, that we are on. xo

Sadiesservant

Edge, one additional comment to add to the excellent advice you have already received. Not all AIs are created equal. Before my metastatic diagnosis I had three years on an AI. I started out on Femara but found it did make me very moody (I likened it to having permanent PMS!). When I spoke to my MO about it he switched me to Anastrozole. Problem solved. Hopefully you won’t have any side effects but don’t be afraid to switch if one causes problems.

ShetlandPony

No shame for questions here!

There are about seven anti-estrogens you could try. If one causes problems, a different one might not. Your onc really needs to consider your mental health treatment and your cancer treatment in a big picture, and be willing to coordinate with your mental health providers if you wish it. Here is a page about hormonal therapy:

https://www.breastcancer.org/treatment/hormonal

DivineMrsM

edge, sorry to hear all you've been through. My life experiences are different from yours and so my perspective on dealing with aromatase inhibitors is different from yours. I took Anastrozole for about eight years. Sure, I had joint pain. I adapted. I lived eight very full and satisfying years while on the drug. Extremely grateful it was effective for so long.

When it no longer worked, I was switched to another AI and Ibrance which sucked, then Verzenio which sucked even further. A whole year of these meds and I was worse off. Horrible side effects affecting my quality of life. It wasn't the AI, it was the CDK inhibitors that so many others get tremendous benefit from. Even tho they did zilch for me, I am glad I at least tried them.

Currently taking oral chemo and things are reasonably normal for now.

In my humble opinion, any kind of bravery or strength that I might look like I have is a result of the camaraderie, insight and information shared among the women on this forum dealing with mbc. Without them I'd be shakin in my boots all the time.

One thing I developed since mbc is perseverance. I've read hundreds of autobiographies by people from all walks of life and the big take away for me is there are countless and all kinds of obstacles and setbacks people work to overcome as they move forward in life. I draw inspiration from that.

I offer my best wishes as you figure out what's right for you.

edge_of_no_return

sadiesservant, ShetlandPony and DivineMrsM - thank you so much for adding to the excellent information i have received - better than i'd even hoped for. you are all divine and smart af. i'm happy to say the new psychiatrist i'll be working with has experience with cancer patients. i'm also trying to get my 2nd opinion with City of Hope in Duarte, last time i went to UCLA as a cash patient, but they don't do that anymore. i start the stuff at the end of this week and it will be riding it out as all of you have done. and superbly informed, thanks to you all as well. deeply appreciative. namaste