I have been reading these boards off and on for 4 years now and am a little confused about the Hormone Treatment.
I am on Letrozole (after trying all the rest!) - last chance saloon my onc called it. I had side effects from the rest that she didn’t like so changed me from Anastrazole, to Exemestane, to Tamoxifen and finally Letrozole which I have had since last Autumn.
When I started out after diagnosis, I was told 5 years on AI. Here I read some ladies are on them for 10 years.
My oncologist reckons it’s actually the first 2 years that are the all important ones and that she wouldn’t argue with me if I wanted to stop now.
Alternatively, I know of a lady in her 90’s who has been on Tamoxifen for over 25 years with no hint of giving it up - she had surgery and rads at the time.
My BC was stage 1, 13mm and discovered after a mammogram. I had 3 ops to finally get rid of the blighter and it’s surrounds and no clearance as no signs of spread to the lymph system.
I know we are all different, from 2 years to 25 for AI treatment is a heck of a difference!
And despite what it says on the leaflets - the only monitoring I get is the annual mammogram and a dexa scan - no hint of being called for blood pressure or cholesterol testing (yes I realise we are in a pandemic…)
Can’t wait for my 5 years anniversary, when the aches and pains might diminish, the constipation end, the brain freeze defrost and the insomnia a distant memory… and if only the old sex drive might come back as well!
My advice would be to ring your breast care nurses’ service or the nurses at the number above - they provide a fantastic service and will help you understand.
My understanding is that HT is related to your three hormone scores. Your cancer was diagnosed very early and surgery alone might have resolved it. However, the additional precaution of HT is to prevent recurrence. In your case, the chances are lower. For some women, they score 8/8 for one or more hormones. This is when HT is prescribed for 10 years, rather than 5 (the norm). It’s worth following your oncologist’s advice because this is an additional protection against recurrence xx
My understanding (from Dr Liz O’Riordan who is a former breast cancer surgeon who herself had breast cancer) is that the 5 year/10 year prescription usually depends on size of tumour.
It is extremely unusual for anyone to be prescribed an AI or Tamoxifen for more than 10 years as the continuing negative affects on the body are thought to outweigh the risks of recurrence after the 5/10 year prescription. She also confirms that what you have been told in that the greatest risk of recurrence is in the first 2 or 3 years after the first occurrence (Dr O’Riordan herself had a primary recurrence after 3 years). I also understand from her that the ER score determines the how receptive the cancer is to oestrogen so a high score means oestrogen suppressing through taking Tamoxifen or an AI is likely to mean a lower risk of recurrence.
My onc advised 10 years for me ( letrozole).as my ER is 7/8 therefore very receptive to hormones… I manage ok on it so will definitely persevere to give myself my best chances.
I agree about lack of monitoring…I have hadcto be quite proactive…my cholesterol jumped to just over 5 after first 6 months …its now at 4.8 …I have 6 monthly blood tests…my vitamin D was low and I have needed 20,000 unit tablets to boost it…again…without the blood tests I wouldn’t know…I have my BP taken 6 monthly when I have bone infusions.
Im two years in, one year so far on Tamoxifen. I’m expecting to be on it for 5 years and then switch to Letrazole for the rest of my days.
I was HER2 positive, oestrogen and progesterone positive. The way I look at it, my cells are so enthusiastic they saw menopause coming and decide to make just one last thing! And they don’t just allow cancer in, they welcome it, throw a party and grow hydra like. Just far far too enthusiastic.
so, no more hormones for me. My hormones just want to make stuff and they aren’t allowed.
if it stops me getting cancer again, I can live with that - literally