Forum Discussion
Locksley
5 years agoMember
When do I go onto Hormone Therapy Tablets (Not that I want to)
Hello, I've just finished 5 weeks of radiation last week. (12 February). At the moment I don't have an appointment booked with oncologist to talk about when I will go onto Hormone Therapy Tablets. When the oncologist told me what chemotherapy I would be having. He mentioned I would most likely go onto letrazole. Is there normally a few weeks rest time or is this something I should have soon. Just wondering if I need to follow up with oncologist or not?
24 Replies
- LocksleyMember@sister yes I did notice a little pn before tablets. I did ice therapy for as long as I could while having chemo. Sticker on pack says about driving. Seem to be doing ok so far by having tablets at night. But I have read it can take a few weeks for side effects to kick in.
- SisterMemberI can't say that I've seen the "can't drive" bit and certainly not been told it. For me, Letrozole exacerbates fatigue but in itself, doesn't make me drowsy. I take mine in the morning (only time I can be sure I'll remember) and don't have an issue - by the end of a day at work however, I am shattered. Had you noticed PN before starting the Letrozole? I was on something (who knows what it was) to help deal with the pain from the meds which had me dropping things all the time but the actual Letrozole hasn't caused it. Do check though.
- arpieMemberThanks @Garnet7 - we are ok where we are, but there is destruction & devastation all around us. :( Some businesses have lost up to $1 million in destroyed stock. The ongoing water coming down the rivers will impact our areas for some time yet..... it is just so sad, given how badly we've been impacted by the Drought, then Covid & now this :(
Take care xx - lrb_03Member@Garnet7, I've been on AI's for just over 5 years. My Onc initially said 5 years. As I approached 4 years I adked the question again and he said the evidence supported 7 years, but wasn't as clear cut beyond that. Last time I saw him, he went through an algorithm that put me in a high risk category and recommended 10years. It's been a moving feast. I agreed to aim for 8 years and reassess as I went.
They need to take in to account the potential risks and benefits. The AI's affect our bone health and increase our long term risk of cardiac events as oestrogen has a protective effect. The algorithm takes in to account tumour size, grade (I think) number of positive nodes, age at diagnosis.
Someone else I know sees a different Onc, was older at diagnosis smaller tumour and node negative. She's been told 5 years - arpieMember@Garnet7 ... decades ago, when pretty well everyone had radical mastectomies (no matter the size of the tumour and before radiation ...) it was 10 years of Tamoxifen (pretty well the only AI at the time.) Both my brothers’ Mother in Laws had this and are still here, 30+ years later, in their 90s!
Then, with more precise surgery being performed, with less collateral damage to the patient’s breasts - and more choices in AI meds ... the length of time for taking AIs was reduced to 5 years.
Unfortunately, up to 30% of all BC patients will have a recurrence (irrelevant of good surgery and follow up treatment) - so many Oncs are now recommending 10 years again on AIs .... a small price to pay for that little bit of added insurance, but sadly, it is still no guarantee that a recurrence WON’T occur :(
The fact is .... we all need to remain very vigilant of any changes in our bodies - lumps and bumps, or aches and pains that are just ‘different’ or ‘won’t go away’ ..... we need to demand bone scans, CTs, MRIs and PET Scans - and not accept anything less.
Take care, ladies xxx - LocksleyMemberThank you everyone. I will check out a massage for PN. I did ask why 10 years of medication for me and oncologist advised. I had aggressive cancer, large in size and quite a few lymph nodes removed so that all equals = 10 years.
- iserbrownMember@Garnet7
Five was the norm when I started out however further studies have concluded that ten years is a better option. As noted by @Afraser it may also depend on your type of cancer.
Here's a link from the BCNA website talking about the 5 and 10 year, maybe that will help you for questions for your Medical team
Hormone therapy | Breast Cancer Network Australia (bcna.org.au)
Best wishes with your ongoing treatment
Take care - AfraserMemberIt may also depend on your type of cancer and its speed of development. But always good to ask questions, no
point doing something without understanding why. - AfraserMemberWhen I started (eight years ago) the standard period for Letrozole was five years. However during that time, research indicated that ten years demonstrated better results. My oncologist referred to a particular study, with a very large sample, which he was clearly impressed by (and he’s a cautious chap, likes to see research results replicated) and so encouraged me to stay on longer. As side effects seem to have stabilised and I have never had joint pain, I probably will get to ten. Unfortunately there does not seem to be any research that says seven or eight years is better than five - it would be good to know if the benefit is incremental (ie better even if you can’t stick it for the full ten years) or there’s a sudden jump in effectiveness after eight or nine years. Best wishes.
- iserbrownMember
When I was first diagnosed by the Breast Surgeon he said you will be my patient for the next 10 years..........I became fixated on that statement and luckily my hubby was with me in the appointment to pick up on the couple of sentences I missed out on as 10 years was quite a shock as I was so green on what treatment and follow up was all about.Locksley said:Hi I have now started taking letrozeole tablets. One a day for 10 years. Goodness me. The packet says may cause drowsiness and not to drive. I decided to take these at night because I still want to be able to drive. Has anyone had any issues with driving. I feel I am Clumsier. Keep knocking over water glasses. Could be pn because i can't always feel the whole glass.
Yes the 10 year regime is a little hard to swallow in the beginning as the thought process is goodness, how old will I be then rather than oh okay! Initially I started on AI through my Oncologist and was told 5 years but less than 12 months in, the timeframe changed. On Monday I visited my Oncologist for review and I thought I would mention if there was any wriggle room on the 10 years...... he smiled and thoughtfully replied, 10 years it is...............
At first, like some on the forum, I thought my body was rebelling and it was never going to settle. I started taking it in the morning and then changed to lunchtime as it was the equalizer for me and allowed for good sleep in the evenings. Now 6 years on and a few changes of medication later I am back to taking it at night, probably around 9pm every night. I still have side effects, bone pain, leg cramps, however, they are nowhere near as bad as when I first started out and I have just over 4 years to go................not that I am counting, much!
I think others have already said it, suggest you get that PN checked out and as Blossom said a lymph drainage massage has helped - I am a strong advocate for same.
Best wishes
Take care