I had my first oncologist appointment yesterday. I knew my treatment plan is to have radiotherapy and AIs and thought, as I was told to expect a 2 hr appointment, I might be whisked down to radiology to be measured up there and then and start on Monday. I was ready to confirm I could have the 15 sessions before starting the tablets BUT I was slightly blindsided by being told I would only have 5 days of radiotherapy sometime in November and then told to start the Letrozole today. I was so surprised about only 5 days and was about to ask why (stronger beam ? my diagnosis dictates it ? ) when WHAM! there was the Letrozole and the conversation moved on.
ANYWAY the point of the post is - does anyone take control of their own hormone therapy? It looks very much as if I’ve been given a generic (Sun Pharmaceuticals) so I’m expecting it to be utterly gross. So for example, it is my birthday in two days time so I am not starting the Letrozole until after then. Then I thought “what if I don’t start it until after the radiotherapy as that will be over in four weeks time” as the thought of doing both at the same time is horrific. Is this a slippery slope? I asked the oncologist at what time of day I should take the pill and she said to follow the instructions in the packet. The instructions in the packet say to follow instructions from the doctor ? so I’m going to have decide myself on that so why not other stuff? Please, someone talk me out of this state of mind!
It’s not great is it being told one thing then another it can all get very confusing can’t it?
I had my first annual check up last week and we talked through the fact that when it came down to the prescribing of my hormone therapy it all got a bit messy: I was asked “where are you with menopause” to which I said “my periods are less frequent and lighter (hurrah!) I assume it’s down to menopause as I’m definitely not pregnant”. The consultant then requested “the blood test” (which from all accounts is not in anyway definitive) which concluded that I was apparently post menopause and he then wrote to my GP saying please prescribe Letrozole, however I when I queried this with my BCN and I pointed out he hadn’t actually asked me when my last period was (I’d had one 3 months previously) and my understanding is that you are only post menopause on the 12 month anniversary of your last period, her response was she “fine if you want take Tamoxifen that’s upto you” not very helpful!
Fortunately I had my oncologist appointment the next day and I discussed it with her, she confirmed it’s not “upto me to decide” and wrote to the surgeon to recommend I was prescribed Tamoxifen
I waited (and waited) and it was only after I chased after my RT finished the letter finally landed with my GP saying “stop prescribing Letrozole and please prescribe Tamoxifen (at this point I hadn’t actually taken any tablets!)
A bit of a long story, but my point is when I was asked by the nurse what the outcome was and whether I had started taking Letrozole or not, her response was “good, the delay in getting it sorted shouldn’t have made any difference, but more importantly you took control and queried it and that was the right thing to do”
I felt like my nurse has essentially said your HT is upto you, the evidence points to the risk of recurrence being hugely reduced and they can’t force you to take it so taking control in that sense is very much down to you, but like everything in life nothing is guaranteed.
Tigress if you come away from your appointment with questions you are entitled to contact your BC nurse and ask for more clarification. You could also give the nurses on the helpline here a ring to talk it through ?
I started hormone therapy after my radiotherapy finished , my BC nurse said is was up to me whether I started before or after . I didn’t feel I could cope with both things at the same time .I had 3 weeks radiotherapy starting about 8 weeks after my surgery .
I completely agree with the confusion and concern and the questions that hormone treatment raises . All I can add in for information is that I have been on tamoxifen for 2 months . I have been tired and a bit hot at night but it’s been ok . I was on it for a month before my 5 day radiotherapy ,like you are having ,and to be honest the tiredness was consistent so I’m glad I started it before the radiotherapy . I don’t even know if I am menopausal as I have a mirena coil and the blood test indicated at 52 that I’m not quite there yet . The oncologist says it will be reviewed in due course but haven’t a follow up appointment . It’s strange but the hormone therapy has left me with more questions than the surgery and the radiotherapy . Forums and asking questions gives me much more peace of mind
‘If you are going to take a tablet once a day it makes sense to take it at the same time each day so you can remember when to take it. I think that’s the answer to when to take letrozole. So i have been taking it each day at 6 pm when I have my tea/dinner/evening meal whatever it may be called.
I have decided I am stopping taking it and all other meds soon as I am fed up with two AdCal3 tablets per day to stop osteoporosis caused by letrozole and/or breast cancer spread. I think my quality of life should come before the slim chance the extra meds will stop me getting secondary breast cancer
my diagnosis dictates it ?