I have posted about my experience of letrozole on the wrong part of the forum so I thought I would try again. I had low grade but multi focal hormone receptive tumours and opted for a mastectomy and reconstruction. No chemo or radio. All went well until I was prescribed letrozole - feelling weepy, lack of sleep, vaginal dryness (which led to a bladder infection) and hot flushes to power a town! The hormone therapy has delayed my return to work and I cannot think how I would manage with a commute and actually having to use my brain for my job. My bone density scan highlighted that my bone density is just below normal so some risks to my bone density over time. My risk for reaccurance is low - I have used the NHS predict tool and my oncologist agrees that he would think about the value of the drugs in my position but still prescribed for 5 yrs and did not mention our discussion of risk when he wrote up our meeting to my GP! Overall cancer nurses also have encouraged me to stick with the hormone treatment and I find it very hard to engage with the medical team responsible for my care to discuss risk. I of course do not want to put myself in unneccessary danger of reaccurance but hormone only minimally reduces risk. I also think that feeling unwell does not help with doing other healthy things like exercise and eating well - which might be a better at reducing my risks.
How have others assessed risk. I am interested in whether the oncotype test might give greater clarity to risk of reaccurance than the NHS tool (currently offered to those with intermediate risk as a way of assessing whether they need chemo)? Have others found other tools or ways of assessing risk in their decision making about hormone treatment? If people have decided to come off hormone treatment are there other ways that they have introduced to reduce their risk - incluing a change or diet or increase in exercise?
Has your oncologist suggested trying you on other hormone therapies as Letrozole is causing such a problem?
Anastrozole is another reversible aromatase inhibitor, like Letrozole. Exemestane is an irreversible aromatase inhibitor. Tamoxifen has a different action from the AIs. Different women have different side effects with different drugs - it’s a matter of trying out what works for the individual. It also seems to be the case that different brands of the same drug can have different side effects.
Hi Bella,
It maybe worth asking about tamoxifen as it is protective of bones if post menopausal. I have the option of moving to AIs, but have stuck with tamox as I’ve been fine on it. Both the oncologist & surgeon were happy with this when we discussed it.
Being the right weight & excercise has been shown to be beneficial & it’s something I have been working on since diagnosis.
As I’ve mentioned before, Predict only looks at survival not recurrence & my understanding is there is a recurrence risk generally of 10-40%ish. Hormone treatment can then give further protection of up to 50%, I believe.
Wishing you well with it all.
ann x
glad to see that you have posted this as I too had exactly the same worries of being able to function in my quite stressful job with the rotten side effects to. I think it would be too late for Oncotype DX testing of my tumour now as it would have been thrown away. I do remember the radiographer saying that I am a very low risk when I went for my first rads treatment.
As you also said drugs only reduce the risk not get rid of it completely. Rock and hard place springs to mind. I have my husband asking if I have made the right decision re not wanting to take the medication but when I told him of all the other potential,problems he did agree with me. Life in itself is a risk. Yes I could take the medication but end up on a raft of other drugs to combat the side effects. Seeing the surgeon Friday and will see what he says. Guess I am in for the disapproving looks.
Thanks also for your reply in my thread. Let me know how you get on with the 2nd opinion please x
I’m pretty sure that the Oncotype DX test gives an indication of whether chemo will be of benefit by estimating how likely a cancer is to recur whilst taking hormone therapy. The Predict tool will give the added benefit of hormone therapy vs no hormone therapy. At the end of the day, the choice is yours. If you find the side effects so debilitating, how high a chance of recurrence would make that worth it? Your quality of life is everything. One of the hardest things I’ve found about this disease is that there are no guarantees, no one can tell me it’s gone for good, that it won’t come back, it’s all ‘best guesses’ based on the available evidence. I do genuinely believe that the overwhelming majority of health professionals want the best for us, they prescribe the treatments they know work because they want us to get better, they aren’t trying to make us unwell. BUT we are all individuals, all our cancers are too, how we react to to drugs is.