68.5K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Letrozole - how bad is the change from Tamoxifen to this?

4 REPLIES 4
Butterfly318
Member

Re: Letrozole - how bad is the change from Tamoxifen to this?

Dear Roadruner

 

Glad you're doing well 9 years on.  Sorry that you've had three different people, it's difficult when getting different opinions.  I have taken for granted, i guess, the continuity of care i have received.  Same Oncoplastic surgeon, I think she is late 30's?? and Same Oncologist I think he may be 30 ish (because he is a Consultant and heads up a Satalite centre) but looks about 20 (now i feel like my Nanna).  Hoping they stick around. I've got to have further reconstruction that she doesn't do (DIEP) so referral to a different hospital but he came highly recommended, i have seen quite a bit of his handywork..... 

I do think my se are different on Letrazole but tolerable with supplements and keeping mobile.  i know for some of the ladies going through treatment me being 3 years post diagnosis probably feels like a long time but to me is doesn't, still very raw, anxious and really glad to hear when people are doing good much further down the line. I am a Nurse which is sometimes helpful then other times not when i'm digging around looking for the research...

 

Take Care  Butterfly x 

RoadRunner
Member

Re: Letrozole - how bad is the change from Tamoxifen to this?

Butterfly,

 

I had three different oncs, as they kept on retiring on me, and each one had a different opinion!  When I got to the end of my five years, late in 2012, the research was out about five years being better than 10, and the newly diagnosed were being told they would be on tamoxifen for 10 years, but NICE guidelines hadn't been updated.  My onc then followed the guidelines and said I had to stop.  When the guidelines changed in 2014 I went back and asked to go back on tamoxifen.  A friend had died in the meantime and I didn't want to take any chances.

Butterfly318
Member

Re: Letrozole - how bad is the change from Tamoxifen to this?

Evening Flo

 

All different Oncs have different thoughts it seems.  I was post menopausal on testing immediately following surgery / chemo / rads etc.  However my Onc (Christie's) said 2 years on Tamoxifen which he advised was bone sparing !!! Then change onto Letrazole.  This was June 2013.  At that time NICE recomended 5 years hormone therapy but he said that huge research 22000 people over three countries was looking like 10 years would be the norm so i'm interested, Road Runner, your Onc must have known this already. I thought my guy was 'bang on trend'.  I changed June 2015 following a DEXA which already showed Osteopaenia so it has been prescribed with AdcalD3 and Glucosamine & Chondroitin and advise to try weight bearing exercises.  Despite having peripheral neuropathy i walk loads.  Well 4-8 miles 3/4 times per week (i think it's loads....)  It does cause bone pain, joint pain and some tendon pain but i would be too anxious about recurrance if i gave it up.  Also the side effects aren't much worse than tamoxifen.  Swimming really help the joint pain... Butterfly x  

RoadRunner
Member

Re: Letrozole - how bad is the change from Tamoxifen to this?

I am still on tamoxifen, nearly nine years on from diagnosis, will finish next year.  I'm definitely menopausal now tho' wasn't at the start.  There's no way I would do letrozole as it gives joint pains and I am a runner.  The evidence shows 10 years of tamoxifen is better than five. Letrozole may be better in post menopausal women but continuing with tamoxifen is a lot better than doing nothing,

Flo62
Member

Letrozole - how bad is the change from Tamoxifen to this?

Consultant wants me to go onto Letrozole after 6 years on Tamoxifen (as probably through menopause now) However, I have read and heard that it's not great for your bone denisty...aching joints and generally grim plus cholesterol increases...all grim!  I've already developed Osteopenia through Tamoxifen usage and tbh really don't want any more joint pain.  Can you stay on Tamoxifen or is this pointless?? any feedback would be gratefully received.