Hello Jolamine.

thank you for your reply. I sent a letter to the Breast care nurse outlining all the issues and explained to her my reluctance to call the service due to her colleagues rudeness. She has called me now and made an appointment for me to see her and the surgeon on Jan 2nd. It's a while off but in the meantime I will have to put up with the issues I guess, it seems you are left without support when you have all these horrible side effects going on. I have been discharged from Oncology as I was furtunate not to need chemo or radiotherapy on both occasions,  I am seeing my GP next week and hope he may do some blood tests to check out  if there is anything else going on. Thank you for replying and I wi keep you posted. I hope you are now keeping well. EveCarol

Hi EveCarol,

I am glad to hear that you have an appointment to see your surgeon in the New Year. It's a pity that they couldn't fit you in sooner.

Good on you for  writing to the nurse outlining your didsatisfaction with the other nurse. If you do have bloods taken next week, I hope that they don't show up anything untoward.

Write down a list of your side-effects to take with you to your appointment.

Kind regards,

Jolamine xx

Thank Jolamine

Thank you

Yes  I put all the side effects in my letter some bedtime reading for them !! Not sure what they will be able too do but hopefully may have some answers.

regards EveCarol

Hi EveCarol,

There are several different hormone related medicines. Some people respond to one more than the other. Have you tried taking Letrozole tablets from a different manufacturer? This can help too.

Kind regards,

Jolamine xx

I am 80 and have been on letrozole for five months during which I get nauseous nearly every day sometimes hot flushes but that’s about it I regret going on it but if it gets rid of the cancer it must be worthwhile

I'm sorry to hear that. I've not been taking it so long so may have more side-effects to come but so far the main thing i notice is my hair one side seems not to be growing thouh it hasn't fallen out. I think it is helping me, the lump feels less and I have my lumpectony next month. Not looking forward to back and fore for radiotherapy, not sure I'll have the strength! But if it does the trick... 

Hope your side-effect lesson soon. Could you try a different make?

Hi Judpet,

I am sorry to hear that you are feeling nauseous almost every day and sometimes have hot flushes. I have had these problems with both Tamoxifen and Letrozole. As I said to EveCarol above, there are several different hormone related medicines. Some people respond better to one more than the other. Have you tried taking Letrozole tablets from a different manufacturer? This can help too.

It is certainly worth talking to your consultant about this to see what can be done. I took Tamoxifen for 1 year, then changed to Letrozole. I stopped taking these after 6 years. That was in July 2017. My breast care nurse suggested something to help the night sweats. It didn't stop them, but they weren't as bad as they had been previously. My consultant prescribed a tablet to combat the nausea.

I agree that if it gets rid of the cancer it must be worthwhile, but there is no need to suffer when there are other medications out there.

I sincerely hope that you find something to help. Please let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

Thank you for your help wonder if you could tell me how soon after taking letrozole do you see a consultant and what to expect when your do do you have another scan or what

Some on here have said "if it gets rid of the cancer".  My understanding of these drugs (Letrozole, Anastrozole, Tamoxifen, etc) is that they are hormone therapy, ie., the opposite of HRT.  They suppress oestrogen (Tamoxifen lets a bit through to the bones/joints, hence why I'm feeling better on it), which in my case, fed the cancer.  They're also meant to bind up any stray cancer cells so that our own immune systems can deal with them.
I know some people are prescribed them to shrink a tumour before surgery too.  I would think most of us have been down the route of surgery, radiotherapy and/or chemo and then these hormone therapy drugs.  My understanding is the drugs don't get rid of the cancer, they inhibit ideal conditions for cancer to develop.

Judpet, if you've been put on Letrozole & don't know what happens next, I'd get in touch with your breast care nurse or consultant to find out.  I'm wondering if your age has made it more appropriate not to have other treatment, in which case, if you're suffering on Letrozole, you have to consider your quality of life & perhaps get moved onto something better or stop it altogether.  One thing I do know is, the side effects didn't improve with time, they got worse, in my case.

Hi Judpet,

I suspect that my experience may be different from the norm, as I had already been taking Tamoxifen for a year before I started on Letrozole.  I started it immediately after my double mastectomy and saw the surgeon a week after surgery and then 3 months later. After that it was 6 months and now I am reviewed annually. If however, you have been left and are not happy with the Letrozole, that is what your breast care nurse is there for. Give her a phone. Chances are that she will give you an appointment to see the oncologist again.

I hope that she can do something to help you out. Please let us know how you get on.

Kind regards,

Jolamine xx