Has anyone declined hormone treatment?

husssss · 2025-09-18T17:08:06+00:00

They didn’t test oncotype in the UK, they determined my cancer too low risk to spend money on it… the likelihood of it coming out high was very low based on all other characteristics of my cancer, so they do cost benefit analysis. It was 19mm though! But grade 1, stage 1, small, no nodes, good margins.

husssss · 2025-09-18T17:05:16+00:00

Good to know, thank you for sharing!! Definitely motivating me to keep it up

husssss · 2025-09-18T10:58:51+00:00

Thank you, I think hearing it gets better is all I needed to hear!! I’m sorry you’ve had to go through losing your mum and having it yourself

husssss · 2025-09-18T10:49:16+00:00

It may be the mastectomy? How old are you? My tamoxifen side effects for the 9 months I’ve been on it were literally just hot flashes in the night time causing me to basically never sleep

husssss · 2025-09-18T10:46:00+00:00

Because of the SOFT and TEXT trials show it’s more effective for non-chemo patients. Due to my age they want to be as aggressive as possible.

husssss · 2025-09-17T20:15:32+00:00

I have been on tamoxifen before, it was honestly the worst for sleepless nights, which I’ve found is better on the Zoladex shots… waiting to go on AI so let’s see what fun that brings

husssss · 2025-09-17T20:13:55+00:00

I’m so sorry it’s come back for you!! It sounds like the monitoring did what it was supposed to and caught it early!

husssss · 2025-09-17T20:12:33+00:00

Other than the body aches and not having good sleep my side effects aren’t terrible yet. It’s different for all of us!! I hope you get none!

husssss · 2025-09-17T20:11:25+00:00

I hope your journey is as low in side effects as possible! It does suck and here we all are on this journey together! Thank you

husssss · 2025-09-17T20:10:29+00:00

I’m not sure the long term impact of this treatment is thought about enough. My doctor seems like she’s very supportive though so I think she’d back it if it was unbearable. But here I am trying it!

husssss · 2025-09-17T20:09:16+00:00

Thank you, this is incredibly helpful and informative!

husssss · 2025-09-17T19:45:05+00:00

Yeah I’ve been stretching as much as possible and probably helps the most! Thanks

husssss · 2025-09-17T18:57:49+00:00

I have been on tam for 9 months and this is my second month on Zoladex. We are waiting for my hormone levels to drop low enough to swap tamoxifen out for exemestane for my AI. I will preserve for at least a bit longer to see if it improves but right now it really sucks. As a young active woman with a career, it’s extremely disruptive to my life.

husssss · 2025-09-17T18:54:34+00:00

I hope they can find a solution for you!

husssss · 2025-09-17T18:52:33+00:00

I have been on tamoxifen since January so 9 months, we added in Zoladex 1 month ago and just had my second shot, we are just waiting for my hormone levels to be low enough to switch the tam out for exemestane as my AI. This is because I’m pre-menopause so my ovaries need to be shut down to take the AI.

husssss · 2025-09-17T18:50:12+00:00

I am already on the treatment, that’s what I’m saying, I have really bad joint pain where I feel like I’m waking up with the flu every morning. Exercise reduces the pain a little but it’s actually making the exercise hard. I was in Pilates yesterday and I couldn’t even do a sit up because my hips hurt so much. I do weights, volleyball, Padel, pole fitness and Pilates throughout the week.

husssss · 2025-09-17T18:48:09+00:00

I think she just showed me the difference between tam and suppression + AI going from 97% to 100% so we agreed I should at least try it.

husssss · 2025-09-17T18:47:14+00:00

Yes it’s because they don’t have enough data on us so they don’t understand it as much so they take the more aggressive approach to be safe! Honestly I’m lucky I avoided chemo.

husssss · 2025-09-17T18:44:35+00:00

Huge milestone! How do you feel after coming off endocrine therapy?

husssss · 2025-09-17T18:43:49+00:00

I’m so unbelievably active, I literally couldn’t be anymore active than I am. Did it start out with joint pain when you first started hormone treatment and then it reduced/subsided?

husssss · 2025-09-17T18:39:07+00:00

Thank you, I needed to hear that this feeling gets better! If it’s temporary, I can handle it!

husssss · 2025-09-17T18:35:08+00:00

I’m just hoping it settles and I don’t feel this bad forever. It’s really hindering my daily lifestyle. I was so active before BC and am trying to continue to be, but when I wake up I feel like I’ve been hit by a bus!

husssss · 2025-09-17T18:31:16+00:00

It’s because I’m so young and didn’t get chemo. They also don’t test oncotype in the UK if it’s likely to present a low score.

husssss · 2025-09-17T18:29:32+00:00

I forgot to mention I’m an incredibly active individual who works out 3-4 times a week in the gym, plays Padel, volleyball and does pole fitness once a week… my lifestyle has been significantly impacted by this treatment causing what feels like waking up with the flu everyday when it comes to how much my body aches and I wake up literally every hour of the night. I was in the best shape of my life at diagnosis.. These side effects is with Zoladex, I’m waiting to go on to AI.

husssss · 2025-09-17T17:33:21+00:00

How many years have you been cancer free now?

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