Struggling coming off HRT -TERRIFIED AT THE THOUGHT OF HORMONE THERAPY

Hi Murraymint

Oh I feel yur pain!! I had a mastectomy and lymph node removal Nov 22. As cancer was oestrogen positive I was taken off my HRT. Feel anxious, always jittery cant sleep just as you said feell like SHIT. I dread going to work everyday. The hot flushes and nightsweats are horrendous.

I decided not to take the Anastrazole offered to me. Just felt I wouldnt be able to cope if my ostrogen was depleted further. 

I tried venlafaxine via my GP and I have recently been put on Lyrica via a gynaecologist. Helps me cope a wee bit better but not a magic pill like my HRT was. 

Hope this helps. Your GP is meant to help so I would put a complaint into your surgery. Menopause is horrendous on top of a BC diagnosis. 

I'm normally a tough cookie, and full of CBT and positive attitude, but seriously this is just such a pile on of shite!!

I'm kicking off with my GP today and the breast care nurses. I want some specialist support!! Maybe I'm ahead of myself but seriously not once has anyone asked about the impact of losing HRT in the past 3 months. 

GP full of false promises and zero appointments.

Private GP recommended I just stopped working, she wasn't impressed when I laughed and asked how I was supposed to pay for her if I did that!! 

They won't work together and that renders it all pointless. I can't afford to just keep paying for snake oil menopause suppliments and reiki etc. it doesn't work and you have to put up with the eye rolls from cancer staff. It's all so unprofessional and un patient centric. There's just nothing much is there. 

Can I ask how old you are and how long they wanted you on hormone treatment? 

Thanks again so much for sharing!

Hiya. 51 now. They recommended 5 years on Anastrazole. Just not for me. I feel I am existing now not living as it is.

I feel guilty complaining and I am thankful I didnt need radio or chemo. 

Hi Murraymint25

Welcome to the forum and I am sorry to hear that you have been diagnosed with breast cancer and that your GP is no help at all.  Your breast care nurse is probably the best person to ask about how to negate the effects of having to come off hrt

Wishing you the best of luck with whatever comes next for you and hopefully you'll get sorted soon.

Best wishes

Daisy53

hi there. Sorry to hear about all your problems. I was on HRT before I went for my breast cancer treatment. Last year. I’m 63 years old and we’re still on HRT at 62. It was marvellous felt on top of the world, then chemotherapy oh my God horrendous, felt like total shit then I lost all my long hair which was down to my waist. Then I had my surgery for a lumpectomy then radiotherapy then I was told chemotherapy had given me heart trouble. My fraction went from 71% to 36% so I have been on heart MEDS since May, but had good use yesterday that my heart fraction is up to 54 a normal person of my age is 55. I also got cataracts caused by chemo and had those removed so I can see at last happy days, but I had hot flushes which I have treated with venlafaxine starflower oil and black cohosh all okked by oncology I’ve also stopped the hormone blockers as they were making me feel ill. There was a 2% chance. Cancer would come back if I took them and if 5% chance it would come back if I didn’t feel a lot better now, but it’s been a hard journey venlafaxine really helped my anxiety I call them I couldn’t give a shit tablet. It makes your journey so much easier. I wish you well speak to your breast as they are so helpful. Mine were brilliant. The doctors were useless. All are very best X

Im off hrt for past 3 weeks - Im back to night sweats and the skin on my face is blotchy, perioral dermatitis back, itching. As expected and feel ridicilous complaining but Im not sleeping well, palpitations back like you, so feel that everything i went through an year and a half is back plus i now have breast cancer to double those palpitations.

So Im thinking of you and have such anger that your GP is that way. I think switching GP is a start. We have good nurse practitioners at ours - ond found the lump in my breast. I book in with them and they ring through to the GP if it needs more input.

Blimey, I mean this in a good way, but thank you for sharing, it means a lot!

Does the venlafexadine make you dopey/disconnected too? I'm wondering how I will work it I take it!! I'm keeping everything crossed that you feel you can function somehow too!! 

I take it you are off all HRT now? 

Your hair sounds beautiful, has it come back? 

It's all so bloody subjective and add in that it's impossible to trust medics these days, I can only imagine what it's been like.  

Why do I feel I'm being "managed" down into simple but stupid treatments?! 

I've just had an apology off the GP. She read my desperate email I sent last night, this morning... And actually called me. 

I'd already had a really cold and callous reply that I wasn't allowed to have an appointment via email and I needed to fill in the online form and they then repeated that I couldn't see her until 12 Jan.

I'm seeing her tomorrow for 30 minutes so sucks to the receptionists who are awful! However she directs the practice so it's on the GP Director! She did actually ask if I wanted to see her or not as she's cancelled so many times, problem is clinically she's good and it would take 30 minutes to explain my medical history to a new Dr. I am however taking my husband with me who is really unimpressed with all the shit going on!! 

And don't be mad on my behalf, although I really appreciate your support!! 

I think that writing everything you want to convey down in an email or letter is a good idea as you've done. Glad you got somewhere today with that