Hello!
So, I’m 10 years post diagosis.
I’ve taken Letrazole 10 years and my bones are fairly ok.
However, given my diagnosis - strong hormonally driven / stage 3c / grade 3 / 13 nodes positive with (extracapsular) growth beyond the nodes, I desperately want to continue taking them, but Im hitting a brick wall with it.
There is very little research on the duration needed for anyone with a similar diagnosis- but what there is suggests a need to take an AI such as Letrozole LONGER than 10 years. Yet, the oncology team wont support me. I’ve done my homework and I feel this is a post code lottery. I know people in my situation who are being prescribed longer than 10 years - however, they are in London, Im in Yorkshire.
I’m currently trying to find a sympathetic oncologist in Yorkshire who I might be referred to for a second opinion.
Can anyone help?
Thanks, Angie
5 Likes
Hi Angie
I don’t know about getting them prescribed but there are herbal things you can order online e that are natural estrogen suppressors if you google. Also, exercise really helps get rid of excess hormones. Probsbly won’t fully help your fears but it’s something
X
1 Like
Hi there
Thank you so much. I hadnt even considered that as an option! Angie x
Welcome to the forum Angie , I can totally understand your feeling of unease . I hope you find an Oncologist who is willing to help . You could maybe ask about this in the Ask our Nurses your questions section and see if they can give you any further advice? Would your current oncologist consider a prescription for Tamoxifen or Raloxifene as an alternative ?
Thank you 
Ive actually spoken at length to one of your lovely nurses. Ill try a post though as you never know, someone may have some local knowledge.
I haven’t asked about Tamoxifen - i just assumed id get the same answer. I will though. Im very determined. Thank you!
1 Like
Go for it . Could you maybe get via private sector referral if GP or NHS won’t do it . If people elsewhere in country are getting extensions why not in Yorkshire ? Cannot be the cost it’s a very cheap drug . Pretty sure I would feel same I have another 5 years to go already hoping protocol will have changed by then . If cancer is a chronic condition no reason why we cannot choose to carry on with medication after all we are never absolutely sure it will not return . Good luck
1 Like
Raloxifene seems like a good alternative for me. Thanks again!
Total side note but thank you. My diagnosis is similar to yours but was downgraded to Grade 2. Your post gave me a whole load of hope! I’m through surgery and a third of the way through chemo before radiotherapy and then Tamoxifen. The fact that you’re doing so well at 10 years made me feel a million times better! I hope you succeed in finding your drugs. Two friends whose mothers died of BC are on lifelong Tamoxifen to prevent BC so it seems ludicrous that you aren’t being offered something for life, especially when they know E+ BC can lie dormant despite chemo and Tamoxifen and other drugs are key in preventing the recurrence!
1 Like
Im so pleased my post has helped you. Ive never felt ive received the best of our gealth care. Ive had to fight for bisphosphanates - i put myself on low dose aspirin and Pomi T. Even mammograms i have to chase. Some areas are better at keeping up with emergimg research, but not where i am.
Having a grandma and aunt pass away from this makes me super angst and prepared to do anything for it to not come back.
If you ever need to, pm me xxxx
Hi. I don’t think I can be of much help but I totally understand how you feel. This will be me in 3 years time! I’ve only been prescribed hormone therapy for 5 years and I’ve just started Letrozole which I’ll take for 3, after 2 years on Tamoxifen. The thought of finishing and taking nothing is terrifying so I’ll be interested how you get on.
Best of luck and I hope you manage to achieve what you want. Sometimes we just need to advocate for ourselves.
All I’ve heard is that there is research out there confirming that after finishing AI’s their affect continues to be protective but I’ve no idea why.
Also research suggests that staying very lean and slim and keeping muscle mass up by lifting weights can reduce recurrence in ER+ BC by up to 50%. I’ve heard of an Australian study whereby oncologists actually send their patients to the gym as part of the treatment.
If all else fails, I wonder if they would go with Tamoxifen.
Best of luck x
Thank you so much for your very kind words and understanding. Im going to make an appointment to doscuss with my ‘not very understanding’ GP and push for either Tamoxifen or ralexifene. Honestly, my husband and i would both be deceased if we werent so swutched on - sorry - not meant to sound big headed. Ive many examples but me attending my GP and telling him I had an ectopic pregnancy and him saying take Paracetamol and come back in a fornight resulted in emergency surgery that evening. My hubby went back in 1988 and said he was sure he had testicular cancer. We can read / had medical books (no internet) and he was laughed at. We paid to see a specialist and surgery snd a year of chemo followed. I just cant trust GP. Anyway? Rant over 
.
Id love to say i can be slender but unfortunately I never have been (i did lose 5 stone but im still not slender) and I hate gyms. I keep active gardening or walking etc. Have a slipped disc so weights i couldnt do anyhow. Ill keep you posted xxxx
1 Like
You can ask to be referred elsewhere. I insisted on going to a teaching hospital in Manchester for treatment although I live in Yorkshire . If we don’t fight for our rights as patients no one else will do it for us
1 Like
That’s an option I’m considering- except i could do with knowing where im likely to get the outcome I’m wanting.
Cudos to your final sentence 
2 Likes
Hi everyone
A quick update
Neither my GP, nor my local oncology team would support me continuing Letrazole. I tried alternative suggestions eg Raloxifene or Tamoxifen but hit a brick wall.
So, I managed to track down my original oncologist from my initial dx in 2013 and made an appointment to see him privately.
Thankfully, he is with me! He agrees due to my fairly unusual dx that I can continue taking Letrazole.
Result!
Don’t give in if you are like me!
5 Likes
Well done ! I can never understand women who don’t want to take it tbh …
2 Likes
So pleased for you what a great result. This will be me in 3 years time!!
1 Like
You’re awesome Angi. Way to fight for yourself. If I think I can tolerate in eight and half year’s time, like you, I will fight tooth and nail to stay on it. So far so good.
1 Like
Switching to Tamoxifen from Letrozole today.
Letrozole too daunting on serious side effects.