Hello High2K,
So sorry to hear that you are having such discomfort whist taking Letrozole. Really glad that you enjoyed your cycling and camping trip. What a shame that you had to come off the tablets to do it and feel more like you again.
I cannot answer your specific questions - not enough medical and chemistry knowledge for that. However, what would it really tell you if you had your oestrogen levels measured (every day, week, month??) What is deemed a “safe level”? I really would not think that the NHS would conduct such tests. If there was a “safe level”, then imagine the scandal if this came out - and they had al of us poor women on either aromatase inhibitors or tamoxifen for all these years when we could have just tested ourselves every so often like a diabetic testing blood sugars.
Post menapause our oestrogen levels are pretty low compared to what they were. Rather than the ovaries producing oestrogens, they are now mainly derived by the aromatase enzyme converting adrenal androgens (mainly androstendione and testosterone) to oestrogens (estrone and estradiol). Letrozole will inhibit the aromatase enzyme and stop the conversion to oestrogens in body tissues and in any cancer tissue itself so reducing the chance of recurrence of oestrogen sensitive tumours through the body or new primary oestrogen sensitive tumours.
Regarding whether high levels of oestrogen go hand in hand with a high level of recurrence, well it would depend if the recurrence was oestrogen sensitive. However, you were prescribed letrozole, so I am assuming your tumour was oestrogen positive. Taking tamoxifen or an aromatase inhibitor like letrozole will not totally protect against recurrence but it certainly can improve your odds. That’s the thing in my opinion, it’s a bit of a lottery and in the end you have to weigh up the pros and cons for yourself and make your own decision about your quality of life.
My tumour was very oestrogen sensitive at ER8 - so I am giving the aromatase inhibitor I was prescribed a really good go. I have been on it for over a year and at the moment I have just got some creaky joints but nothing major just yet. I had more issues with excrutiating leg pains and cramps as well as locking thumbs and fingers in the early days. This very rarely happens now and seemed to reduce when I took 2 calcium/magnesium supplements a day rather than one. Also, like you, I am on a bishphosphonate - I have an infusion every 6 months - hopefully this will help regenerate the lost bone mineral density as well as decrease risk for bone spread.
If you do not know already, then perhaps it would help you to find out if your tumour was strongly or weakly hormone sensitive (it should say this on your pathology report if you have a copy). You say your Oncologist said it woud benefit you by 12%. Perhaps ask them how they got to this figue. Was this from NHS Predict or some other prognostic index? Is this 12% over so many years? What does this 12% actually mean? 12% seems relatively high and could indicate quite a potential benefit for you.
My opinion is this. The medical profession should be working with us in order to support us to maintain a decent quality of life whilst continuing to take potentially life saving medication. When you say your “consultant” , do you mean Oncologist, as this is the person I would be asking and holding them down for a full discussion. How insensitive and ignorant to just expect you to take painkillers - for how long? No doubt you will end up with bleeding problems from the painkillers!!
I am surprised that since you are finding it so debilitating that they did not suggest a short break anyway. I am also surprised that they did not suggest trying another type of aromatase inhibitor. This has sometimes worked for people. Where postmenopausal women cannot tolerate aromatase inhibitors or there is low risk of recurrence, then Tamoxifen can be prescribed (unless medical conditons dictate otherwise). So before you throw in the towel, maybe give something else a try. Tamoxifen works a bit differnently and some people (but not all) have found it kinder on the joints and bones). Some women have even tried a tablet every 2 days or other ways of varying dosage. Perhaps some is better than none!!
If you decide to go “au naturel” then there have been a number of Threads and posts on the forum from people who have done this so you could easily do a search. You could always easily do an internet search and look up ways to reduce oestrogen for post menapausal women. Healthy diet and a healthy weight no doubt will go some way whether we take the tablets of not.
Before you do give up, if that is what you decide, then ask yourself this - if you stopped and you got a recurrence in your body, would you beat yourself up about it and torture yourself with the “what if I had just continued?” etc. I am not saying this to put you off or scare you. It is more about me - this was one of my tests and I decided I would have to give it a good go because I would not be able to cope with the What Ifs!You have to be comfortable with the decision you make.
All the best to you,
Chick X