Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: GypsyRoseLee on January 31, 2020, 11:02:25 PM
-
So, because my invasive ductal carcinoma is oestrogen receptive I need to stop my HRT. I stopped it cold turkey yesterday. My surgery is in 2.5 weeks, then radiotherapy. It's been picked up very early.
What can I expect just stopping HRT cold? Physical symptoms were never a problem for me, it was all the psychological problems for me. I'm really hoping that my 100mg of sertraline will be enough to support me psychologically.
Anyone have any positive stories of stopping HRT, I would be very grateful to hear them x
-
Morning! I think it is dreadful that this wasn't discussed at your appt.. I think it is negligent to tell anyone to stop medication without support. Is there a Breast Care Nurse that you could talk with at the Hospital, were you offered one at the appt.? Maybe ring the Ward where you will be treated and ask the question? If they are less than helpful, I would go to see the Consultant again B4 surgery.
Have you spoken to your GP since the appt.? Maybe a trip to discuss a treatment plan for your mental health? :tulips:
Did U sleep? :-\
-
Bless you CLKD. My consultant just said to stop my HRT and then we can discuss alternatives after surgery. Though I cannot think what alternatives there can be? I think I will ring the nurse on Monday for advice. My main fear is stopping HRT, then starting Tamoxifen after surgery and my mood nose diving because of lack of any oestrogen.
I did sleep thank you, my sertraline + low dose of quetiapine help with that a lot. But I did wake feeling jittery, which hasn't happened for years. But not sure if this has at because of my shock at the diagnosis or due to no HRT since Thursday morning?
-
hi
so sorry to here sad news xx big hugs to u
i stopped hrt cold turkey and it has been 8 weeks i to be honest didn't feel great on the gel i was taking very up and down i took estrogen only .
symtoms nothing for 2 weeks and then as the weeks have progressed headaches sleep disturbance hot flushes at night zero energy but i had zero energy on estrogen and had headaches on estrogen although i stopped it for hairloss this has improved slightly but va i felt dryer but upped ovestin back to twice a week from once a week but not to dry anything was painful and in some ways a relief as i was getting quite wet down there whereby knickers were wet hence why i dropped ovestin to once a week and it improved and has stayed the same now . although i will be starting hrt again i think due my age of 40 just couldn't cope with feeling like crap with mood swings and bloating foggy head weight gain hairloss on it so the only way to see if it was causing hairloss was to stop it for 3 months due to hair cycle . the other thing though i've found is on estrogen i was craving carbs and sugar i think for energy and this has remained not all the time and then other times no appetite and feel a bit sick with headaches like today . hopefully u will be ok i guess it depends how long u have been on hrt ? my levels of estrogen have fell pretty quickly a sum rock bottom now under 37 pmol at about 5/6 weeks so for me i guess 'that's why i now feel slightly different wouldn't say worse but i know it nots a long term solution just hope i can find something that dosent cause my hair to all fall out x fingers crossed for you i hope it all goes ok
-
That's surely putting off what you should be told prior to surgery ......... :-\. Will the Consultant Surgeon discuss this or an oncologist? They have NO IDEA >:(.
Men. They won't have any idea how Hormones can impact :'(. Make that list GRL and ask, R U close enough to visit the Hospital and speak to the Secretary or Ward Sister? There's no joined up thinking it feels. B4 surgery the patient should be able to speak to all the Team/s to be involved. We came away feeling shocked but had an appt. the next week to discuss, to ask anything we felt we needed to know.
I would also be writing to the Consultant explaining that 'after' isn't good enough. Because we know what that discussion might well entail, no HRT at all ............ wish I lived closer ::)
-
I wish you were closer too, I think you'd be a formidable advocate for me!
I do have a meeting on the 10th to go through anything with the consultant. I shall make it very clear how seriously my mental could possibly be effected by no HRT and taking Tamoxifen.
I'm fully prepared to give that regime a try BUT if it all goes horribly wrong psychologically, then I will push for a double mastectomy, because that way I could continue with HRT plus I won't have to deal with the ever present fear it might come back.
My mind is terrible for worrying at things and brooding too much. My friend had a double mastectomy and her reconstruction is fantastic. Really it's a triple winner for me because I get to continue with HRT, get smaller/perkier boobs and won't have the fear of it coming back!
-
What relationship do you have with your breasts? I never worried about parting with mine until much later ::). However, if it meant being able to continue with medication I would opt for surgery and had said to DH "If he mentions the C word I will have them both off".
Would you send an e-mail to the Consultant prior to the meeting on the 10th? How long would you need to wait if your mental health were to deteriorate B4 you could have further surgery, maybe put that on the list? If he then offered double mastectomy instead of?
-
I am not remotely attached to my boobs, to be honest. I am an uncomfortable and droopy 34G cup, so would be very happy with a perky 34D!
I like the thought of never having to worry about the BC coming back too, because I know what I'm like and I know it will always haunt me. DH is very supportive either way, and I will just tell family/friends that I"m finally having the breast reduction I have wanted for years.
I shall speak to the breast nurse on Monday, as I want my concerns on record, and I will ask if I can email the consultant directly.
-
Well done. Taking control will help. I wonder how many of his patients opt for mastectomy in a similar situation?
:tulips:
-
Morning. :tulips2:
-
Good morning CLKD. Have been doing some research and believe I might have a real fight on my hands to get a double mastectomy. I think doctors will think it a massive over treatment. I'm not even sure I would definitely want it, but it would be nice to think it was a viable option.
-
Worth discussing do you think? All our suggestions should be considered ......... I would also need to know how likely continuing with the regime which helps is likely to compromise my over-all health? Unless we are open to discussion prior to Surgery the prognosis will never move forwards? Unless we are given the option of taking a chance? I suppose it depends on what age we might be ...........
-
Dear GypseyRoseLee, my menopause journey has been similar to yours. When I started with the Hellish anxiety four years ago, I remember reading your posts and feeling relieved that I wasn't alone. I've always wanted to thank you for sharing your experiences. I'm sure you've helped many.
I am so sorry you now have to deal with bc. I will keep you in my prayers for peaceful healing.
Like you I was prescribed an antidepressant along with hrt. I started the hrt last January and stopped the first week of December. I did not wean off, just stopped. I too was worried about awful meno symptoms returning. It took about five weeks for hot flashes to return, but they are much less intense. The anxiety has not really returned. If I feel it bubbling up in the background, I just try to ignore it. I think after 4 years, my body has adjusted a lot. I'm sure yours has too.
-
Thank you Patience. I felt so dreadful this morning that I actually went back on my HRT. The dread and anxiety was too much to bear. I no I'm weak. But I can't face it again.
Have started reading Oestrogen Matters by Dr Avrum Banning and it's a revelation. Not just about how HRT doesn't cause cancer, but how even after BC that is oestrogen receptive you should still take HRT. Both his wife and daughter had oestrogen receptive BC and they've been on HRT ever since.
-
Hi GRL- sorry to hear about your diagnosis. I came off cold turkey a couple of years back and mentally I felt ? lighter ? off it. But I did have the return of physical symptoms such as flushes, joint and muscle pains etc.
I went back on it as I was losing quite a bit of hair so vanity prevailed as I thought the oestrogen would help. ( not sure about this at all. It is a growth promoter but progesterone can be an inhibitor)
It did take me a few weeks to start to feel better so if you can, maybe you should try and keep off it for a bit longer as your diagnosis alone would be enough to make you feel depressed and anxious.
I wish you well, let us know how you get on x
-
Thank you Michellemabelle. I really shouldn't have gone cold turkey like that. I do know I would be feeling pretty awful regardless following the diagnosis. But this is beyond normal anxiety (which I'm familiar with) I know this is the vile 'lack of oestrogen' anxiety. It's dangerous, frankly and leads to suicidal thoughts. I can't go there again.
Have been in touch with the lovely Diane Dzibranik (sp?) and she's getting some expert advice for me. She understands totally because her peri menopause drove her to suicide, I think.
-
Well done! See you are NOT weak! you are being proactive which will help others. Not enough is discussed about mental health anyway, add menopause to the mix and it can be a mine field.
The other group that helped me during my bad hormonal upheavals was the National Association for Pre-menstrual Syndrome [NAPS]. Might be worth asking there too?
-
Good luck GRL- I know these feelings. Mine were made worse by the HRT for quite a long time and moving to a continuous progesterone. Norethisterone is a real nasty as far as I was concerned.
Maybe you can try reducing your dosage to see how you go? My thoughts are with you x
-
In the early hours I did consider suggesting a PM to Dr Currie. Let us know if you get a good result!
-
Thank you Michelle, yes there's no reason why I can't work toward reducing my HRT in time. But clearly, at 49 my body/mind just needs it too much.
Interestingly, I have just read that you CAN take Tamoxifen alongside HRT because Tamoxifen only binds to the receptors in the breast tissue. The rest of your body benefits from it.
Kirsty Lang did a fascinating podcast with Liz Earle about how she takes HRT + Tamoxifen after having ER+ carcinoma.
-
Tnx. Another discussion on the list GRL ::). You'll be a Mine of Info after all this :tulips2:
-
You're welcome CLKD
In the same podcast they discuss the latest studies which show that cutting out alcohol and doing 40 mins of exercise per day is equally as protective against breast disease returning as taking Tamoxifen!
So I intend seeing how I go on Tamoxifen + we're going to order an exercise bike. So a two pronged defense.
-
Get exercising sooner rather than later ;-). I gave our tread mill away ;D. Swimming is supposedly good too but I can't be bothered to get undressed and I HATE standing in changing rooms where others have been :-\
-
So sorry to hear about your diagnosis GRL, how are you feeling now?
Hopefully not long to wait now for your surgery.
-
Morning! Well, it is somewhere in the World ::)
-
Hi GRL. How are you doing?
I'm sorry to hear what you are going through.
I have estrogen receptive BC in my family and my GP therefore point blank refused it for me.
I did get hold of it via a private meno man though, but it did not suit me at all. I came off it after nearly 3 months. That was immediately and I had no problems coming off it.
Hot flushes etc returned a bit after a couple of months, but I must say I don't miss it at all. My M symptoms have just got less and less since.
How long were you taking hrt for? X