Hormone Therapy - this counts as hard!

hope2025

Shared with gratitude to the original author, Kylie Dahl. Expressing what so many of us feel but aren’t always able to put into words.

“No one warned me that this part could hurt like hell.
I’m on Herceptin and a hormone blocker, and the joint pain is relentless. Hands, hips, knees, shoulders, back, feet stiff, aching, screaming first thing in the morning like my body’s been hijacked overnight.
And here’s the part that messes with your head
People think treatment gets easier once chemo ends.
It doesn’t. It just changes.
There’s no drip, no chair, no obvious “proof” you’re still in it just a body that feels older, slower, heavier, and angry for no clear reason.
This pain isn’t weakness.
It isn’t complaining.
It isn’t me being dramatic.
It’s what happens when you rip hormones away from a body that’s relied on them for decades and expect it to just cope.
Some days I move because I have to.
Some days I rest because I need to.
And some days I’m just bloody over it.
I’m told it can get better with time and I’m holding onto that.
But until then, I’m done pretending this part is “fine”.
If you’re on hormone therapy and silently struggling, hear this
You’re not imagining it.
You’re not failing.
And you don’t have to suffer quietly.
This counts as hard.
And I’m saying it out loud.”

💛

missymoo

So true. The dirty little secret no one talks about :(

marshy1

So true Hope2025. I had to stop Tamoxifen, joints, my head, eye pain was beyond awful.

missymoo

@marchy1

Sorry about your difficulties. It's interesting to me that you had eye pain as well. My eyes went super dry and it felt like someone was pressing their thumbs into my eyeballs. I also experienced extreme photosensitivity to the point that I had to wear sunglasses indoors if any lights were on. All this after only 5 days on the drug.

hope2025

@marchy1, Powerful drugs do powerful things— I have dry eyes & sometimes blurred vision, too.

I'm all about sunglasses!!!

💛

orleans

Yes! Thank you!!!! Most people don't get it, but breast cancer is just never really over! Has anyone experienced cranial/facial nerve sensitivity/pain on AIs? I'm five years post-diagnosis. Tamoxifen for 3 years, then hysterectomy due to hyperplasia from Tamoxifen. Switched to Letrozole. Terrible fatigue, muscle and joint pain, etc. Now, in the last five months have also developed ocular migraine (I think), occipital nerve pain, facial and cranial nerve sensitivity/pain. I think it's due to the Letrozole and/or lymphedema in my face/head (which I think can happen as well as in arm after axillary node dissection). Scheduled for head MRI next week. Anyone experience anything like this? I just joined in here but sending strong thoughts to all of you, who I know will understand the range of the impacts of BC. Thank you!

abridgerstoofar

Hello. I thought that after surgery and radiation I would take an AI and life would carry on as usual. Wrong. I have so many side effects from Letrozole. I can't continue it - I have given it 7 months of my life hoping my body would adjust, even trying an every other day dosing. I asked my oncologist about trying one of the other AI's and she said that they were all the same so there was no reason to try either of the others. She prescribed Tamoxifen. Tamoxifen terrifies me more than Letrozole for many reasons. Also, I read that it is contraindicated with Wellbutrin because Tamoxifen's effectiveness will be reduced. My oncologist did not mention this. (I have taken Wellbutrin for years) Stroke and heart disease runs rampant among the women in my family and Tamoxifen has a higher risk of causing these than does Letrozole. And, 20 years ago, I had a LEEP procedure due to pre-cancerous changes on my cervix. I am so confused and overwhelmed by all the what ifs and wherefores that I cannot make an intelligent decision regarding adjuvant meds. There seems to be no obvious correct choice.

Any insight, help, advice, would be gratefully appreciated. I'm 67 and long time post-menopausal.

Invasive Ductal Carcinoma, ER/PR+, HER2 negative; Grade 1; Stage 1; No node involvement; 7mm tumor; lumpectomy followed by whole breast radiation.

PS: my surgical oncologist and medical oncologist have given me differing rates of recurrence…???

july31

@hope2025 I read this and actually started crying. I've pretty much quit coming to this site because I find so many people just seem so complacent about what these drugs are doing to our bodies and I am just so f'ing angry about it. They say talk to your doctor, so first after the initial treatment how often do you actually see the doctor? Even if you do tell the doctor, PA, or NP, they just shrug say they can pause it, after terrifying you about the cancer coming back, or offer you anther equally bad drug. I am having terrible issues with my hands, my thumbs have pretty much quit working and the other fingers ache constantly. Only solution, after a couple of shots offered, is surgery, but if it is the Anastrozole that is causing it and I'm suppose to be on it for almost another 9 years then will it come back? Orthopedists says he has no idea. Watched a presentation on this site by a doctor on the AIs and carpal tunnel and trigger thumb where he admits AIs can cause these issues but they don't know why and acts like the whole thing is no biggie. Well how about f'ing find out why and fix it? Throw in other joint pain, stomach issues, changes in my cholesterol levels and I can understand why almost 50% of the people offered these drugs don't take it, quit, or pause. They would rather risk a reoccurance of cancer than endure it. Now because of the AI they want me to take something for bone loss and the side effects of it read even more terrifying. I personally know 3 people who have had femur breaks after starting it but they don't seem to do any real testing before hand to see how likly this it to happen. With the billions of dollars they are making off of us there should be more research into these side effects. Sorry, sorry, like I said just so angry. I was reminded by a cashier today that it is Breast Cancer Awareness month. I told her I had already made a contribution, heck half the stuff I was buying was for pain relief. Maybe we should not only make people aware of breast cancer detection but of what it like after the surgeries and treatments and put some research money into helping us. Again sorry for the rant.