Duration of endocrine therapy in premenopausal Australian patients

youngdogmum

Hello all
Very long time since I’ve poked my head into this discussion forum. 

I’d like to hear what other younger pre-menopausal patients around the country are being recommend regarding duration of total
endocrine therapy. 

I myself am now onto year 6 of ovarian suppression and AI, a choice I have continued although I could have switched to tamoxifen alone. 

Please comment with your doctors advice and your stage/diagnosis. Are you doing:

5 years ovarian suppression and aromatase inhibitor 

7 years ovarian suppression and aromatase inhibitor 

10 years ovarian suppression and aromatase inhibitor 

5 years tamoxifen +/- ovarian suppression and then further 5 years ovarian suppression and aromatase inhibitor 

10 years tamoxifen alone  

Suki

Hi @youngdogmum

I was 47 (premenopausal) and diagnosed with stage 2 triple positive.  I had neoadjuvant chemo which put me into chemical menopause, with pCR at surgery.  I have been on Tamoxifen since July and will continue for two years (to confirm I stay in menopause) and may then switch to an AI for a minimum of three years.

I haven't yet discussed anything further than 5 years with my oncologist.

Aska

Grade 2 Stage 1, 10years Tam

cactusk

Grade 2B, Stage 2, 10 years AI (letrozole) and (at least) 5 years ovarian suppression 

youngdogmum

cactusk said:

Grade 2B, Stage 2, 10 years AI (letrozole) and (at least) 5 years ovarian suppression 

@cactusk can I ask
why 10 years of AI for you when the studies say 5 for most? (I am genuinely interested to hear the recommendation from your onc)

what Is your plan for ovarian suppression beyond the 5 years? An oopherectomy?

cactusk

Hi there,
I was peri-menopausal when I was diagnosed. My onc has said that although 5 years is standard at present, studies will come through within the next 5 years that make it more likely that I'll be on the AI's for at least 7, but more likely 10 years.
For the ovarian suppression, I was surprised that I would need to be on this for more than 2 - 3 years, given i was near to (but not quite) menopausal, hence my understanding that at least 3-5 years for the Zoladex, and that could be extended. I'm not sure what tests would need to happen for this to cease.
I can choose an oophorectomy at any stage to cease the monthly injections, but I'm not keen for another procedure just yet.
Have you discussed Ribociclib with your onc too? 
i'm also on Zometa (as 6 monthly infusions) and I"m not sure how long that will go on for - i assume as long as the AI's do.
K

youngdogmum

cactusk said:

Hi there,
I was peri-menopausal when I was diagnosed. My onc has said that although 5 years is standard at present, studies will come through within the next 5 years that make it more likely that I'll be on the AI's for at least 7, but more likely 10 years.
For the ovarian suppression, I was surprised that I would need to be on this for more than 2 - 3 years, given i was near to (but not quite) menopausal, hence my understanding that at least 3-5 years for the Zoladex, and that could be extended. I'm not sure what tests would need to happen for this to cease.
I can choose an oophorectomy at any stage to cease the monthly injections, but I'm not keen for another procedure just yet.
Have you discussed Ribociclib with your onc too? 
i'm also on Zometa (as 6 monthly infusions) and I"m not sure how long that will go on for - i assume as long as the AI's do.
K

Interesting, there are a couple of studies already that show a small group benefit from 7 years but very few do benefit from 10 years of AI. 

I struggle internally with the decision to continue on these or switch to tamoxifen… 

I’ve long missed the boat for ribo, I believe it’s only approved for the first two years of endocrine therapy (it was still a trial when I was diagnosed and I chose to not enrol) .
I am still child bearing age/haven’t had children yet (I am now 33, was 27) and tbh I am not keen on further treatment if I can avoid it.  I did 2 years of Zometa infusions but have stopped, as a new study showed 2 were just as beneficial as 3 and my bone density has stayed fine so far, it’s declined but is still normal.

I pay for an annual BMD to check. 

Esjay

Hello @ youngdogmum,  this is an interesting question. 

I don't really think there is a 'one size fits all unfortunately.'  

My age @ diagnosis 41 yrs Jan '23

Stage 2 IDC & DCIS

HR+, HER2- 

After 3 initial surgeries including mastectomy & implant reconstruction I was put on 5 years 20mg tamoxifen.

Due to severe side effects ie shut my brain down, I ceased treatment but had a dcis recurrence.

After 2 more surgeries,back on Tamoxifen 10 mg. It caused stage 4 endometriosis and extensive hemoragging & fibroids. Resulting in a hysterectomy & ceased tamoxifen.  

Another recurrence 4 months later...this time 6 tumours on chest wall of non invasive papillary carcinoma. 

After 2 more surgeries and radiotherapy..

Back on 5mg Tamoxifen until further notice...Time will tell what's next!

Afraser

I was on Letrozole, initially for five years but before that time was up my oncologist suggested that recent research showed better results for ten years. I remember looking at some research papers at the time. I was also advised (may have changed in the intervening six years) that there was no reliable research on the benefits of seven or eight years. I completed ten years on Letrozole. I’m NED, my bone density (originally terrific for my age) is now pretty average for my age but then, I’m ten years older and 79! No aches, joint issues while on Letrozole.

Katie46

I wad IDC stage 2 Grade 3 1 lymph node involved. I had AC chemo, paclitaxel, radiation. I am 52. I was not in menopause at the time of diagnosis in 2023, and my oncologist said my oestrogen levels were high. I have monthly zoladex injections, daily letrozole, six monthly zoledronic acid and abemaciclib for 2 years, I qualify for abemaciclib because of the high grade, and lymph node involved.

My oncologist told me that I will be getting the zoladex injections for 3-4 years and will then be reassessed. I'm seriously considering ovary removal, which my oncologist supports. 

I was told I'd be taking Letrozole for 10 years.

I have minimal side effects from the medication, hot flushes from time to time, mold muscle stiffness and super dry eyes. Hot flushes and dry eyes started with chemo. I'm blaming letrozole for the muscle stiffness, and daily stretches helps a lot. The side effects have very little impact on my daily life.

CRM

I was stage 1 grade 2 ER+ PR+ and I was prescribed tamoxifen for 5 years alongside zoladex for 2 years. 

I ended up stopping tamoxifen after 3 years to have a baby. Baby girl is now almost 9 months old and I haven't bothered to go back on it.

lrb_03

I was 49 and pre-menopausal at diagnosis. Er+, Her-. Neoadjuvant chemo put me into menopause.  I did 7 years of AI. My oncologist said the evidence suggested that for me, the risks and side effect outweighed any potential benefit of continuing as the AI had already caused osteopaenia

MicheleR

Hi @youngdogmum,

Did you reach any conclusions on this? I had stage2b ilc grade 2 (no lymph node, just big tumour) . Have had 45/60 zolodex and on exemestane. Originally i was supposed to have 10 years ai and 5 years zolodex. Onc now saying 5 years ai. I think you cant be on ai if you havent been through menopause, and as there is no easy way to tell im not sure what the actual plan was re ovarian suppression. Ive been complaining more recently about symptoms. I dont want my ovaries out as concerned ill be stuck forever with the symptoms. I was 48 at diagnosis. Id be surprised if my ovaries are still functional but obviously i want to keep cancer away.

 

youngdogmum

MicheleR Hi Michele 
No..I’ve come to my own conclusion that there simply isn’t the data to support taking Zoladex beyond 5 years but some people are choosing to continue. 

I’m no closer to a decision about how long I want to stay on for.