Forum Discussion
Hormone Blocking Anxiety from Pain
In the last 12 months, I have had Tamoxifen, Letrozole and am now on Exemestane. I have had chronic side effects from them all. My oncologist has flat out denied my symptoms are caused by the meds. Hot flushes, the most painful aching joints, headaches, memory loss and I have blown up like the Michelin man! My legs are so bad now, the Physio and OT girls have put me in toe to knee compression stockings, that I have to wear 8-10 hours a day, I swell so much, sometimes I think my skin will tear. My oncologist told me I must have “incompetent veins”, over a phone consult….twice! I can’t sleep, because the burning in my joints wakes me up, and I have to get up and move around to take my mind off of it. I want to get a second opinion, but my confidence and self esteem have really taken a nose dive with my current oncologist and being shot down every time I speak with her. Any suggestions would be much appreciated, thanks.
11 Replies
- @arpie, Well that's good to know that the Anastrozole was not too bad for you. Thanks for that :)
- @Cindi - I have been on Anastrozole for over 4 years now and have found personally, that it is the best of the 3 I have tried. I hope it works better for you too.
@DAG192 - definitely mention it to your surgeon as well ... so that it is in HIS notes as well!
take care & all the best - @DAG192, I really hope your appointment goes well with your surgeon, and yes, tell him everything, he may get your Oncologist appointment moved to sooner, good luck. xx
- @Cindi, Thanks heaps for the update, I truly hope the new medication works for you….please let me know how you’re going. 🥰 I have an appt with the oncologist in June and yup, hubby will be there to watch my back, thanks. I’ve also got one with my surgeon next week, but wasn’t sure if I should talk to him about it or not. After reading your message I think I’ll give it a go! Thanks again. Hugs and good luck! ❤️
- Hi @DAG192, I hope you're not feeling too bad, I just wanted to update you, I've just seen my surgeon and wanted to let you know I bravely insisted on seeing an Oncologist for ongoing care with the hormone blocker drugs.
My husband came with me which helped me.
I am now starting on a different hormone blocker called Anastrozole which he said he hadn't heard anything bad about so hope that's right.
I have to stop my other one, wait a month, then start new one.
I hope you can see someone else, have you got anyone who could go with you to see your specialist, who could support you and have your back?
I find it helps if you have someone strong with you to give you the confidence to stick up for yourself.
I know it's hard sometimes, and my one wasn't impressed with me wanting to have my care taken over by an oncologist, but too bad, so glad I pushed.
Hope you can too.
You're paying for the appointment, you have the right to speak up.
Good luck.
Cindi xx - @cranky_granny @Tri @Cindi Thank you all so much for your suggestions and support. You are very kind 🥰
- Hi Dag192, I'm sorry you're having such a tuff time, and your specialist sounds not nice at all. I really think you need to see a different one. Maybe your GP can refer you to a " nice" one. I'm about to see my one tomorrow, and hoping to get him to refer me to an oncologist to sort out my hormone blockers as I'm also suffering bad sides. I'm not sure if I'm meant to see an Oncologist or not as I didn't have chemo or radiation, but I'd so much prefer to be dealing with someone with a bit of empathy. The thing that I find the worst is the brain confusion . It's getting worse and very distressing. Good luck to you, I really hope you can get your hormone blockers sorted out. I'll let you know how I go. Cindi x
- hi @DAG192 so sorry to hear about the painful side effects, your situation sounds next level tough ❤️
For the aching bones (in my ankles at night) I have been taking Panadol Osteo and it has helped a bit. Also Deep Heat. I also started taking vitamin D and calcium as my tests showed I was deficient.
Coincidentally I listened to the February BCNA podcast about persistent pain this morning and it might help you. Here’s the link
https://www.bcna.org.au/resource-hub/webcasts/persistent-pain-after-breast-cancer/
wishing you a more positive time of it and good support from your treating doctor. - Definitely 2nd opinion @DAG192 I am very fortunate with my oncologist and her registrar’s they listen and give me strategies to cope. And always ask if the side effects are any worse.You have to be able to have trust in your treating team. The rads oncologist I had at first was rude and brushed me off i never had to see him again and saw a different one after that.
I tried the tamoxifen it was awful Onc had hoped the side effects would settle but nope so went onto anastrozole the side effects are there but settled to tolerable Ive been on it now for 3 and half years combined with Ibrance. Best of luck searching for someone else. Maybe somebody over your way can point you in the right direction.
Your GP or if you have a nurse that you can ask names of other oncologists in the area - Thanks so much, I really appreciate your comment ☺️
