Hi there ...

Your not alone ... there's lots of threads that come on here from letrozole and tamoxifen .... l am on the latter, and had horendious mood swings in the begining ... and now have mustle and bone ache in legs ..  and think others have said about energy levels etc ... 

I'm sure you'll get others with their expierance too ..  l wish I'd been prepaired before I started taking it, so I'd have known what was happening ...   Chrissie   : )) 

Hi Chrissie

Thank you for your comments. I know the side effects are very unpleasant and I appreciate the fact that these tablets can save lives. I just wondered if, after having a double mastectomy, they’re necessary. 

I also discovered yesterday that letrosole is an oral chemotherapy!  Shocked! 

Take me care and I hope to hear from other ladies who have had a bilateral mastectomy and whether they’re on letrosole. 

Hi there again ....

I'm tagging [@Jolamine]‍  as she's had a double masectomy .. and I think she was on that one too .. she has been really busy lately but I know if she pops on , she'll be able to help more ... 

Chrissie x

Hi Chrissie

Thank you very much for taking the trouble to do that for me. I wish you all the best.

Susan x

ps not sure how I got Sienaana! Must have pressed wrong keys! 

Hi Susan,

I see that you are fairly new to Cancer Chat, so welcome.

Your symptoms and subsequent treatment almost mirror my own. I discovered a small lump in my right breast which was cancerous and, had a lumpectomy prior to taking Tamoxifen for 1 year. I discovered a larger lump in my left breast 6 months later. Fortunately, this was benign. Forward another 6 months and I found another small lump in the original breast.  Unfortunately, this was cancerous, so I opted for a double mastectomy.

I followed this by taking Letrozole for 6 years and finished taking this in July 2017. I was told that my cancer was pure mucinous, grade 1 breast cancer. I also had 6 lymph nodes removed, but these were all clear.

I have had problems with both Tamoxifen and Letrozole, but found my care team very helpful in trying to work around these. Have you tried any different manufacturers of Letrozole? There are several different brands and, sometimes switching to a different brand can help. There are also other drugs that can be used instead of Letrozole, so it is well worth discussing this with your care team.

You do not say exactly what problems you are having, as there are some ‘fixes’ for individual problems too. The fact that we have had double mastectomies should reduce the chance of any further cancer returning, but, having had regrowth so quickly after my original operation, I was happy to go along with the side-effects to ensure that it didn’t come back again.

I hope that this is of some help for you. Please keep in touch and let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

Hi Jolamine

Thank you so much for taking the time to message me. My cancer was HER2 type, probably as a result of taking HRT for five years. I decided on a bilateral mastectomy from the moment I was diagnosed as I watched my mother suffer this dreadful disease. She passed away at age 46yrd. I did not want to take any chances and my consultant said that after I have a second mastectomy (which I now have had) she would reassess the need for me to be on letrosole, as it may not be necessary!  

My symptoms on letrosole are almost most all those which are listed except life threatening ones. In addition I have blurred vision! 

I will speak to my surgeon tomorrow about reassessment of taking letrosole (which i found out only yesterday that it is an oral chemotherapy). Did you know this? As no one told me. I was just told it it an oestrogen inhibitor! 

Thanks K’s again for you time. 

Susan x

Hi Susan,

We have another thing in common. I lost my mum to breast cancer too. She eventually developed secondary breast cancer in her liver, lungs, bone and brain. Your poor mum was very young when she was taken - that must have been very hard for you.

I developed bilateral catarracts while I was on Letrozole and 2 years later I developed Posterior capsule opacity (PCO).  I virtually lost the sight in one eye and almost lost it in the other. I had to wait 1½ years for laser surgery, but this has made a huge difference. I am back to driving again and, despite still having some floaters, I am not too bad now. I also had a lot of bother with my bones and joints and eventually had a double knee replacement. I also had horrendous sweats, fitting, sleeplessness (despite having excessive fatigue), dry mouth and nasal passages (this eventually led to a thrush infection in my mouth), nausea, nail problems, tooth decay, dry and itchy skin, loss of concentration, memory lapses, Liver damaged by medicines (non-alcoholic cirrhosis), weight gain. I perservered with the Letrozole despite all these problems and, as a result, count myself lucky to still be here after 10 years.

I hope that all goes well for you when you see your surgeon tomorrow and trust that your reassessment will come up trumps and that you'll no longer need the Letrozole. Nobody mentioned to me that Letrozole  was an oral chaemotherapy. Like you, I was just told that it is an oestrogen inhibitor. 

If you get a chance tonight why not draw up a list of your side-effects so that you can show it to your surgeon tomorrow. Please let us know how you get on.

Kind regards,

Jolamine xx

Hi again,

So today, I went to see my surgeon for a top up of my implant and took the opportunity to ask a few questions, one of which was is letrosole an oral chemotherapy? His reply was no letrosole is an endocrine suppressant! Now I’m confused as it is definitely listed as oral chemotherapy! Can anyone shed any light on this?! 

I also discussed the the possibility of stopping letrosole due to its many side effects and he told me yes I could, and he explained that because my cancer was tiny 6mm and stage 1-2 with clear lymph nodes, the risk was tiny especially as I have had a double mastectomy. He also told me that letrosole only increases the chance of a non recurrence of cancer by 2% - 3%! It’s such a small percentage!  I asked him whether Oestrogen positive cancer can recur else where in the body and he informed me that yes it can come back in the bones, lungs and liver. Not sure though, if he meant only if there are pre-existing cells in the system or or whether he meant new ones can form? He wasn’t clear. I was under the impression that excess oestrogen can only cause breast cance?  So confused!

Can anyone shed any light on this also please?

kind regards

Susan x

Hi Susan,

I'm glad to hear that you managed to have an in depth discussion with your surgeon yesterday. Where did you get the information you have about Letrozole? There are many inaccuracies on the internet and, I wonder whether this is one of them.

You must have been relieved when he agreed to you stopping the Letrozole. 2-3% is not that much in the bigger scheme of things, especially when it carries so many side-effects with it.

Unfortunately, there is always the possibility for any cancer to return and spread. My cancer (Mucinous Cancer) is oestrogen positive and supposed to be not very invasive, yet, I have had 2 new bouts of breast cancer a year apart. Fortunately, both were the same type of cancer and, were primary cancers and, I am still here 10 years on. My mum had 12 years of primary breast cancer before she developed secondary cancer in liver, lungs, brain and bones.

We all live with the fear of recurrence, but for our own sanity, have to think positive and refuse to dwell on the 'what ifs'.

Jolamine xx