Letrozole! Help!

Hi Eline, trying to decide whether to accept a treatment or not can be tricky.  I was also worried about starting hormone therapy especially as like you my risk of re occurrence was low. In the end I decided to take the tablets and see what if any side effects I had as I could always stop taking them.  I am early 50's so on Tamoxifen and so far no obvious side effects.

I don't know about when a DEXA scan is needed but hopefully someone else might now and respond to you.

Wishing you all the best x

Hi Eline

I felt exactly as you describe about the Letrozole which gets such bad press. Like Godwilling, after radiotherapy and having had the box of tablets for a few weeks I decided that I would start and see what effec,t if any, it had on me. Now just over three months in, I can honestly say that I am not aware of any specific side effects from it. I am still getting H&P every three weeks until March 2022. So far, so good.

Wishing you all the best

Wallydug

I was given a dexa scan because I had some osteoarthritis. I am in my early 70s. I was initially on letrozole but changed after 6 months plus to exemstane.  My osteoarthritis is made doubly worse and I now need to use a stick. I have joint pain in other areas than those originally affected by osteoarthritis. Weight gain is also a big problem. Some eyesight problems and urinary urgency. Having said that some people get little or even no side effects.

Since covid I have not had a face to face consultation with a doctor other than my surgeon. Post chemo, herceptin injections for 9 months and a double mastectomy I was told my breast pathology was clear bar a 9mm estrogen positive tumour. I was told over the phone my cancer journey in was over but that I would have letrozole for 5-7 years. I was given none of the percentages that you were given . I was told initially I had stage 2 increased to 3 (I learnt this from the letter sent to my GP. I have never been given an oncotype score, no idea what this is.

If you or anyone can enlighten me I would be grateful..

I think I need to ask some more questions but as my consultant has said I don't need to speak to anyone any more I am not sure how I will do this.

As for your situation why not try the letrozole07950 409163 but give it up if the side effects are too great. I read that once you stop the medication the side effects go.

1. Good luck ps sorry about typos am doing this on my phone.

Hi Rozalia

The Consultant's perception of your need and your actual need are two different things. If you feel that you need more information you should ask. I asked my GP who was responsible for monitoring the effects of the Letrozole longterm i.e. GP or Consultant, I was thinking about its potential effects like osteoporosis, cholesterol and blood pressure etc. She said that as Consultant had instructed her to prescribe it, it was the Consultant who was responsible for it long term. If your Lertrozole was instructed in the same way, I should think that it will also be the Consultant who should be responsible for it long term. If you cannot get direct access to the Consultant ask your GP to re-refer you.

Nothing to lose by asking.......

All the best Wallydug

Thanks for your reply GodWilling. I think if the hormone therapy was for a maximum of 1-2 years it would make the decision much easier.

Thanks Wallydug. What is H&P please?

(Btw, given your name, are you Scottish? )

Rozalia thanks for your reply. Sorry about your health problems.

The Oncotype test is to determine whether a patient needs chemotherapy or not, it’s only used for early invasive breast cancer so not everyone is eligible. The percentages I quoted are from the Predict tool which is available online and very easy to use. I was started on BP meds in June, my BP was very high after surgery and took hours to stabilise in recovery. My cholesterol is slightly above but I’ve refused statins the GP wanted me to take, I’ve seen at close hand the effects of statins. My reckoning is after going through surgery and radiotherapy is it any wonder my body is suffering! It seems to me like a slippery slope, I’ve never been on medication (apart from antibiotics) so a pill with side effects leads to more pills to counter said side effects. I was healthy until this year, (thanks cancer!) and apart from the usual screenings, hadn’t needed to see a GP since 2017, but turning 65 this year has been a shock to the system in more ways than one.

You can always try them and see how you get on? I made a point of reading only the 10/10 reviews of exemestane on drugs.com before I started taking it as I think there will be a lot more people seeking advice on bad side effects online than people who are having no issues - you don't tend to need to go online for that! My oncologist said if one hormone drug doesn't agree, then there are others to try.

They also told me to give it 6 months as most side effects calm down by then for the majority of people.

I wasn't given a bone scan as I am having zoledronic acid infusion every 6 months for 3 years. This will keep my bones strong but also help keep it from coming back in my bones. I'm younger than you (mid-40s) so that might not be routine for older age groups.

I was really worried about the hormone therapy - more worried than the chemo - but I am finding it manageable. I also had a medical menopause thrown in with zoladex which was intense at first but has significantly calmed and is getting better all the time.

I'd give it a go, you can always stop!

Thanks Beatthebreast

I too am more worried about the hormone therapy (5 years!) than I was about surgery and radiotherapy which are over and done with now. I guess I will bite the bullet so to speak and fingers crossed the letrozole will be gentle on me. 

No harm in giving it a go. For me, I want to make sure I do everything possible to stop it coming back. I was so worried about exemestane side effects that I started them on 1 every second day for a month to ease me in gently!