Tamoxifen or Letrozole???

Thank you all so much for taking the time to reply to my dilemma, really appreciate all your advise. Yesterday I think I was just overwhelmed with so many questions in my head. Today I'm feeling a little more positive, think that's because I've not been googling for hours!! I will definitely insist on having a bone density scan and then will take it from there x

I was 53 when I got bc. I had been on the pill, to keep my periods regular and yes they were perfect at that time. I was not menopausal. The doctor told me to go off the pill as it was feeding the cancer. I had only one more period and that was during chemo. I never had another one. My oncologist put me on Tamoxifen for two years and i have just started Letrozole.

Hi @dougal,
It’s good to have choices. I started off on Tamoxifen after active treatment at the age of 47. I was in chemo induced menopause but had not been menopausal before diagnosis and treatment. After 18 months on Tamoxifen my periods returned and,due to my particular circumstances, it was decided that having my ovaries removed was the best thing to do. I finished up my Tamoxifen scripts and then changed to Letrozole at the 2 year mark.

Letrozole does give a bit better protection against recurrence and this may vary according to your pathology and individual risk of recurrence. I had a few side effects that seemed to settle at the 6 month mark but bone density was a problem for me. The first 12 months on Letrozole resulted in my bone density plummeting to osteoporosis levels. I reversed that with a weightlifting program and was managing pretty well on Letrozole until recently.

After 3 years and 3 months on Letrozole my oncologist considered that my increasing side effects warranted a change back to Tamoxifen. She has given me a month off everything to let my body rest and recover a bit. I start back on Tamoxifen next week. 

I would definitely recommend having a bone density test to see where you are with that. My specialists had me undergo bone density tests at 12 month intervals because this was a problem for me. Tamoxifen will actually help this issue, along with a couple of others I have experienced with Letrozole. It still gives very good protection recurrence wise too.

The aim for me is 10 years anti hormone therapy. I am over halfway now and hopefully Tamoxifen will get me to that point, keeping me both cancer-free and in reasonable general health.

Good idea to find out all you can about your choices so that you can make the best choice for you. Good luck and take care. Deanne xxx

Waffle away @dougal!

Hi @dougal. My oncologist had me do a bone density scan before I started on Letrozole. I started on it two days before my 52nd birthday. I was shoved into menopause by chemo, and she said it was 50/50 whether I took Tamoxifen or Letrozole, gave me leaflets and asked me to choose! I said I couldn't possibly as I was not the expert and that I would do what she advised. She said Letrozole was fractionally better so that's how I went.

I now have a different oncologist (old one left private practice). She has me do a blood test every three months to check my hormone levels as she she's had more than a few women begin menstruating again on Letrozole, as late as 55 years old.

No grapefruit allowed while you're taking Letrozole! K xox

ooh, thank you for all comments, I had no idea vit c could be protecting nasty cells and hence stopping tamoxifen working properly, wow, before all of this (breast cancer) I never took any supplements, medicines anything so finding it a real struggle with all the conflicting information, think I will lay off the vit c now though. I really appreciate all your views on this topic. I joined an ENCORE program, not sure if they are over east as well as in Perth, basically exercises designed for after surgery breast cancer patients, can definitely recommend it but you get talking to other ladies and it does kind off overwhelm you how different all our stories are and treatment plans. It usually leaves me with so many questions. I'm thinking of booking a double appointment with GP just to go through all the pathology from mastectomy last July as there seems to be so much information there that I do not understand. The oncologist is obviously too busy to spend enough time to do this, anyway I seem to be waffling on, sorry, it is great to talk to others who have actually experienced so much too, thank you x

Confusing to say the least. Even the oncologists can't agree let alone GP's.  Tamoxifen is ok as far as the bones and cholesterol go @Sister at least there's a couple of things going for it right?  

Interesting regarding the hormone testing @dougal.  I questioned that on my last oncology visit.  His opinion was that as there were no signs of menopause prior to chemo (no cycle for two years now though)  there wasn't a lot of point until I had been on tamoxifen for about 3 years as it would not be completely accurate?????Who knows, every doctor has their own opinion.

You pee out most excess vitamin C but like anything, overdosing on it can cause issues I assume. There is also a theory that vit c can protect any nasty cells from Tamoxifen working properly and killing them.  Also why they don't like you to take it during chemo.

Probably best to follow the oncologist advice rather than the GP that's their specialty after all.

xoxoxo

Who knows why some of us get pain on Letrozole and some don't.  I think you can only give it a go and see.

As for the bone density issue, I'm surprised that your onc doesn't see it as an issue because it certainly is on Letrozole (not sure about Tamoxifen).  My onc was very concerned that I had a scan as a baseline before starting and it will be monitored.

Thank you for your quick response. Vaginal dryness seems to have happened anyway since chemo 
, definitely a pain in the vagina!! I'm seeing my GP next week and will ask about having a bone density scan as oncologist didn't seem to think necessary which seems crazy when you are taking a drug that could reduce bone density, so maybe if I have that and results are good, fingers crossed, then maybe I should try Letrozole. My oncologist is pretty laid back about everything and there seems to be so many contradictions in advise between GP and oncologist, an example, my GP said a aspirin every day (quarter of I think) and vitamin c both help protcect against breast cancer but my oncologist says vitamin c will give me kidney stones and doesn't recommend aspirin. Arhhh so hard who to trust and googling just makes it worse!!!

I also had herceptin (infusion) for a year and have been on letrozole for six years. I too was warned about arthritis type aches and pains. I have had none, but others have. No idea what makes the difference. There are two other notable side effects  - reduction in bone density and vaginal dryness. My bone density was excellent before starting and is still
on the right side of the ledger but is being closely monitored and may yet stop me going to ten years. 

Vaginal dryness is a pain in the vagina! I have just begun using oestrogen cream as I was very wary of doing something that seems completely against current treatment. It helps, but I am still cautious. 

Not everyone gets the dryness, so my usual advice is a) follow your oncologist's advice if you trust him/her b) if you try something and are really unhappy with it, you can always stop! Best wishes.