Hiya,
My onc said to start Letrozole after bone density scan which only happened a few days before starting rads - So I started the same time as rads.
Helen
I started on Tamoxifen straight after seeing the onc for the 1st time, which was three weeks after surgery, and two weeks before starting rads. I started on Zoladex a few weeks later, one week into rads.
Hi all
I started tamox 1 week after my rads had finished
Kaz x
well i had my first meeting with the onc and there was no mention of tamaximpan so perhaps they are going to wait. that would suit me, seems logical to get over one treatment with one set of side effects before you launch into another.
Hi,
I was told that I needed to start tamoxifen on or close to the day I started rads because I was only having 15 and it takes 3 weeks for the protective effect of tamoxifen to kick in. They aim for total cover with no gaps in your protection. The chemo effect would last until the next chemo dose but on the final one they like you to have the 3 week gap to rads and then the tablets are working by the time you finish.
However, new research shows up things all the time so that will no doubt change from future research trial data. The tricky bit is telling (and we don’t know) whether someone had cancer and thats it, or whether the trigger/s for cancer, whatever that is for each individual is still in place so it could start again. The no gap idea seems to take the approach that we might still be at risk of another cancer or of having strays cells left that need to be kept immobilised or destroyed. We also know that for most people a gap wouldn’t make any difference because they would be fine.Sadly we don’t know which camp we are in. My personal view was that i would exactly follow their best recommendations as they have so much more experience and having got this far, in for a penny in for a pound, as they say.
I think it might be worth asking as your post would indicate that this will be on your mind
Good luck everyone
Lily x
mmmm, perhaps that the clue. I am not having chemo, so perhaps its people who have chemo that start the tamoxifan early and those that dont start later?? I asked what grade I was, she said grade 3, but she did not have the report in fromt of her. It is still in the lab. It cannot be released until its signed off, And the man who signs them off is on holiday–can you believe it??
hiya oal , i didn`t have to have chemo but have been on tamoxifen 3 weeks this coming tuesday , started rads thurs 14 july , my onc said because my tumour was oestrogen receptive the tamoxifen was my " prevention " prior to rads starting xxx
Hi OAL
Not necessarily. I didn’t have chemo and started Tamoxifen several weeks before I started rads.
Can I ask a (perhaps) silly question OAL - why are they sticking you on Tamoxifen rather than aromatase inhibitors. I only ask because I know you’ve said elsewhere that you’re 64 and had a hysterectomy so if you’re not post-menopause it would be a medical miracle! I’ve been told I will switch to AIs once I’m post menopause, probably another year or so.
Sarah x
At 65 and having had a hysterectomy I too was prescribed tamoxifen for 2.5 years and then an aromatase inhibitor for another 2.5. It didn’t happen like that because of side effects.
I am guessing Aromatase inhibitors have such a devastating effect on the bones that they don’t like you to be on it too long.
hi, yes apparantly, according to my blood tests years ago i am post menopausal. did not believe the doctor at the time because I did not have one symptom. I had had a hystorectomy a few years before and they were doing the blood test because i was diagnosed with osteoporosis.
Anyway yes, they said tamoxifan for 2 years to build my bones up and then they would change to one of the newer drugs after that.
still no sign of them wanting me to start though. My hormone receptive score was 8. anyone know what that means—must look it up somewhere or post the question on here
Hi OAL & Surfie
Thanks for your replies, that makes sense about strengthening the bones first. I also read or heard somewhere that doing a couple of years on Tam then switching to AIs is more effective than a straight five years (or however long) on AIs.
OAL - re your hormone score of 8. That means 8 out of 8, usually expressed as 8/8 on your results. In other words very responsive to hormones - which is good because it means hormone therapy should work well for you.
Sarah x
oh, you sound knowledgable, I am sure he mentioned testostorone–was i dreaming it???
More like fantasising I should think!
It would have been oestrogen and/or progesterone that he would have mentioned. It appears that some places test for both, some only test for oestrogen. I got results for both - 8/8 for oestrogen, 3/8 for progesterone.
Sarah x
progestorone --that was it. Oh i do wish i could get hold of my path report. In fact I will feel better when my oncologist has seen it. so far all they are going on are telephone results from the lab. The person that releases path reports is on holiday so they cannot get hold of it. I have asked PALS to try and sort it, but its still not available. How can they plan my treatment properly with results dictated over the telephone.
It’s ridiculous that no one can get hold of your path report, not even the medical staff. Just a thought, but the hospital must know which laboratories they use for the pathology tests, can’t they get another copy off them?
Sarah x
no, they cannot get a copy until the person who is supposed to release it comes back off holiday–rediculous. My surgeion told me from his dictated notes that i had both invasive ductal and invasive lobular cancer but it was impossible to grade it.
my oncologist from her telephone conversation says no lobular cancer but it is grade 3.
wonder what version they will get next time they telephone? That it was all benign after all??
who says its bad to google. I have now discovered that if you are PR- then tomaxifan is not a good drug to start on, the recurrance is larger even if you switch to other inhibitors later, but if you are PR+ then it is better to start off on tomaxifin. The recurrance is slightly higher over the first two years, but if you then switch the recurrance rate after ten years is significantly better than if you did not have tomaxifan. Plus the advantage for my osteoporosis.
Bingo! Looks like you found useful info. Thank goodness for the internet! I know you have to be careful which sites you look at but the good ones are a mine of useful info when you’re heading off into the unknown with BC.
OAL,
I have no result for progesterone on my path report. I don’t think they bother to test if you’ve had a hysterectomy and ovaries removed. (I only had one removed.) I think the ovaries produce progesterone don’t they?
i have had a hysterectomy and am post menopausal so overies cant be producing much. I understand that not all hospitals test for progesterone though.