SUFFERING STOPPING HORMONE TREATMENT FOR MENOPAUSE

JodieMaree

Hi. Diagnosed two weeks ago yesterday, can’t believe it’s only been two weeks seems so much longer. Daughter is currently in the middle of HSC, so I haven’t told family yet, which sort of makes it seem like it’s not real. 

I’ve been reading a lot of posts and like a lot of women, I was blind sided getting a call back from Breast Screen Australia, even then thought, nah, not me. One out of twenty, my odds are good. I’ve been to the surgeon and McGrath nurse and now need to make a decision.

It would be so much easier if I could get a good nights sleep. As the tumour is hormone positive, I’ve had to go off my happy gel (Estrogel). For the past week the night sweets are back. Anyone with the same dilemma? Any suggestions? TIA

Aska

Hi @Jod@jodiem
Sorry you're in this group, it takes a while to sink in.  I am finished hospital based treatment and am now on hormone blockers.  I'm 50  and my rumours were also hormone positive. So I was put into medical induced menopause, the hot flushes at night the worst symptom due to affect on sleep. But my oncologist has recommended acupuncture. I've had 1 session.  The acupuncturist is confident it will help me.  I'm also taking evening primrose oil.
Good luck

JodieMaree

Hi @Aska (not sure how to tag) thanks for your reply. I really don’t want menopause symptoms again, I was only on the gel for 5 months and was feeling like my old self again. 

Aska

I understand.  I'm struggling with the symptoms at the moment. But it's better than the alternative

JodieMaree

Yes, very true.

Blossom1961

They have tablets that are not hormone based. The one I am on was designed for people with depression but after a time they worked out it also works to reduce hot flushes. So they put me on it. They are called Citalopram. Safe to use for hormone positive cancer. It has more than halved my hot flushes.

June1952

Whilst I am needle-phobic Acupuncture is often my first point of call for issues as many years ago it worked for symptoms of menopause - and I mean that I was like a waterfall and slept little !
Since then it has helped with other 'lady' issues .....
Worth a go.

Cindi

Hi JodieMarie,

I'm sorry you're suffering and about your diagnosis, it's so hard I know.

I was taking HRT for many years as my menopause affected me so badly and I willingly went on the HRT, ....really wish I hadn't now.

I stopped as soon as I was diagnosed with breast cancer caused from the HRT, that was back in mid September and I do sweat a lot more, but find doing a LOT of exercise does help, and I'm sure the acupunture would help.

I hope it settles down for you soon, the most important thing now is to eradicate the cancer!

xx

JJM

I'm sorry that you've received the news that you have. I was diagnosed with an invasive carcinoma that's hormone positive two weeks ago and I'm scheduled for surgery within a fortnight. I have twins sitting their final exams. One knows, because he overheard me talking about it on the telephone, but the other one doesn't know. I've decided not to tell him, because he's far more sensitive than his twin and his exams go on for another fortnight. I have been on HRTs and visited the doctor who prescribed them and presented her with the reports regarding my diagnosis. She is weaning me off oestrogen and progesterone, with the view to me being off both of them within three months. My surgeon had also mentioned that I needed to stop the HRTs, but he said that I shouldn't be stopping them cold turkey, but rather that I needed to be weaned off them.

arpie

Sorry to see you both join our exclusive little club, @JodieMaree & @JJM - the one no one wants to join   

The lack of sleep is debilitating .....  Melatonin tablets work for some .... chat with your GP - they may suggest a low dose sleeping tablet too, like Temase (it gives about 4hrs of sleep) & the hope is that once asleep, you stay asleep for longer than the 4hrs!  Even taking 1/2 a one, can help you nod off ....

The whole thing is a real roller coaster ride after you get your diagnosis - especially for your brain & emotions - disbelief too xx. 

I was on HRT 20 years ago & got an 'abnormal reading' & was called back 3 times - it seems the testosterone component of the HRT was causing the abnormal readings, so I had to go off it too    
15 years later, just months after a clear Breastscreen NSW mammogram, my GP found my lump during a routine visit .... and the start of my own BC experience!  grrr 

Feel free to jump onto this thread (lots of general info on the forum, including suggestions of what to take to hospital with you, and 'tick sheets' for self assessing how you are going.)   Also links to some of our 'off topic' threads, where we can show off our gardens, pets, crafts & cooking skills!   
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest

Make sure you take a trusted friend/partner with you to your appointments & also consider recording your meetings, as it is almost impossible to remember everything that was said xx

take care & all the best for your upcoming procedures xx

JJM

Thank you for your comment and the info and I hope that you've been okay on your BC journey. I can understand how you felt with receiving a clear breast screen, only to have a lump found soon afterwards. I had a mammogram and ultrasound in January and they were 'clear'. I then found quite an obvious lump when applying body moisturiser. The surgeon said about this that I have such dense breast tissue that those tests wouldn't catch a lot of issues and that moving forward I'd need to have different screening. Which makes me wonder whether women with dense breast tissue shouldn't be directed to undergo more sensitive routine breast screening! 
Thank you for your kind thoughts.

arpie

Thank you @JJM - I am going OK.  But sadly, Breastscreen NSW still refuses to advise their clients of their breast density (altho Breastscreen Sth Aust and Western Australia do!)   This really needs to be changed, as adding an Ultrasound to the screening for women with dense breasts, might pick up cancers a lot earlier.

They can SEE that you have dense breast tissue when you have your mammogram .... and they KNOW that dense breast tissue shows as 'white', as does the tumour!  'White on white' = invisible!!  

If there is ONE THING to change re breast screening, this is it.  We need to be told that we need additional testing to be more certain of no tumours.

Check out this thread .... there are many of us who were not advised of their breast density ... 

https://onlinenetwork.bcna.org.au/discussion/25725/dr-sandy-minck-has-advocated-for-dense-breast-tissue-women-to-be-advised-at-breastscreen-level#latest

JJM

Wow! I thought that it was just me having a thought bubble! Goodness. It's not just during screening that they'd have known about the denseness of mine. I've had docs do physical checks for years and comment on what dense breast tissue I have and so I've known that, I just didn't understand the implications of that! The only thing that I've ever been told is that implants (which I don't have) make it difficult for screeners to see everything. Of course, now it makes sense that dense breast tissue would be a big problem for many. I cannot believe why every doctor isn't told to send patients for additional screening if they have dense breast tissue. It could prevent so much suffering and additional medical fees.

iserbrown

https://www.bcna.org.au/resource-hub/articles/breast-density-and-screening/#:~:text=Breast density (also called mammographic,clinical examination by a doctor.

A link from BCNA website 
Unfortunately awareness comes after diagnosis for some

JodieMaree

JJM (Can’t figure out how to tag on this platform) I told my family on Thursday night as it was my daughters last exam. I feel so much lighter now. Hugs for the next two weeks until you can tell your son and your surgery. Is your surgery after the last exam?

iserbrown

If you want to tag put @JodieMaree