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Hey...sorry to hear your surgery has been cancelled for now. I know other ladies on this site that have been on letrozole first...what side effects are you worried about? I have been on Letrozole (after surgery, chemo, radiotherapy) for over a year, and yes I’m a bit creaky, particularly in my feet and ankles and I had hot flushes in the beginning but nothing that wasn’t doable.....perhaps if you let’s us know a little more about what specifically you are worried about....we can offer some reassurance....

Hi Clippy18                I am newly diagnosed so i know how you are feeling, the corona virus could not have come at worse time for us. I also just had a phone call and have been left in limbo. I decided i would have to sort this out myself, so this is what i did i hope it works for you.Firstly i rang consultants secretary and ask as many questions you need answers to , you might have to leave a message do it, i left one every 3 hours, then oncology department again speak to appointment secretary, consultant secretary, oncology manager,ALWAYS leave a message when they have time they will get back to you. There is also the breast care nurse and team who will help.You will like me spend a lot of time on the phone but its the only way to get the info you need.When you phone your hospitals main number they  will put you through automatically, always ask what the number of the department you are looking for and any extensions, because sometimes it just rings out and you have to go back to main reception and if you have the number you can try and try if necessary to get through. I hope this helps i know its frustrating but be patient and you will get through.Keep well and safe x

Hi Clippy18    forgot to sat your GP is someone you need to get on board and try to talk to him every week to see whats happening as all letters will go to him too best of luck x

Thank you so much for your reply Oh where do I start I already suffer from severe sweating and swollen ankles and I have high blood pressure I also have diverticulitis and I am on the toilet more times than not lol all of which are side effects of letrozole so I don't know how I am going to get through this 

Thank you

B

Talk about kicking us when we're down could not have come at a worst time I have been on to the surgeon secretary and she was very helpful but my GP is as useless as a chocolate teapot 

Has your sugey been cancelled to or is it still going you never said

Thank you stay safe

B

Hi Clippy18            I also suffer from diverticulitis and i know what you mean by always being on the loo, the toilet roll fiasco due to stockpiling was a real concern for me,and for you too i bet ha ha. I would not worry to much about the side effects of letrozole everybody reacts differently you might not have a problem with it and if you do there are things you can take to help.I was suppose to have a bone biopsy at a specialist hospital in Oswestry and they have written back to my hospital in the Midlands to ask if i really need it. I am being discussed this week in the MDT meeting so should no more Thursday.I do need it because i had breast cancer in 2004 and they need to see if this is the same type ( i have secondary bone cancer ) or a different one as its 16 years later.Nearly everyone on here hes been effected one way or another by the corona virus so we can all sympathise with your situation me included.You will get through this like we all will i have had plenty of very bad days and the very kind and caring people on this forum have helped me get through with all their advice and help and we will do the same for you. You just concentrate on finding out all you need to do to get the best treatment you can. Keep safe and well x

Owwwww stop, stop, calm down .... mind you I can't believe I am typing this.... with how scared I was when I first joined this Forum over 2 years ago (my the time has flown by).

I few things to think about and I hope more so 'calm you down'.

I was put on letrozole when I was first diagnosed, treatment was to be arranged so 'whilst waiting' they agreed to put me on Letrozole. The reason for this, if your BC is oestrogen receptive (my words.... your BC likes to eat live oestrogen to live) well you still make oestrogen in your body, it is made in fat cells. The letrozole takes out all or as much oestrogen as it can - hence we all have various effects on our body for having the oestrogen taken out along with side effects - I think they go hand in hand (for some it can be side effect for others it can be the effect of not having the oestrogen in our body (our lubricant, that greases all our joints for want of a better word) as the oestrogen supply in our bodies gets lower the more creakier our joints become.

Now then this said..... whilst this is happening the BC is not getting any food, so the BC in most cases 'starts to shrink' - to the point some people that have had large inoperable BC have had it think that much that they have gone on to have the BC removed.  I am sure some have even had their BC 'disappear' (others will be able to confirm this). I believe this is why that put a 'marker clip' on/in the area of where the BC is - so the Doctors/Consultants know where it is/was if this is the case.

So first of all being put onto Letrozole whilst waiting is in a way 'starting treatment'.

As for the side effects and other conditions, well, to be honest, I was so scared to start taking letrozole, I posted on here at first, it felt like I was taking a cyanide tablet.  I chose to take of an evening 'so I could sleep thought the dreaded side effects' - thinking I would wake the following morning like a two headed monster ..... it's not like that (well for me it wasn't), my worries were far worse - the side effects vary and change, even take time to build up.  If you have get prescribed Fermara - the original brand (I am sure they will given your circumstances) this will help so much.

As for your other conditions.... I too have High Blood Pressure, Diverticulitis, borderline Diabetes (this is because I am avoiding the diagnosis), along with Macrocytic anaemia and a few other things.  I don't believe the letrozole has affected these - I think diet plays a very big roll in how these illness effect us .... with the diverticulitis... white bread has the toilet effect for me (sorry TMI - if I eat crisp-breads instead etc my toilet habbits completely change). 

I think given what is going on in the world at this moment, knowing what I know now..... the best option is to be taking the Letrozole - knowing it will actually be trying to stave and shrink the BC far outweighs the worry of side effects.  Remember most build up gradual and worst case scenario - you would ask to come off them.... but then you will be questioning 'which is worse the side effects or the BC '.

You will get though this - you really will.... Remember, you are not alone now, you have a group of nutters you can ask any questions to and we will always try and help as best we can.

Remember too.....  

It look's like I have come to the right place, they say things come in three's I am the sole carer of my two adult daughters and September last year my oldest daughter was diagnosed with breast cancer she sailed through surgery and radiotherapy and now on monthly injections she has taken it all in her stride she does not know the serious of it so in her case ignorance was bliss. So with that in mind I was going to take a page from her book. Have surgery radiotherapy hormone therapy and just get on with it but no covid19 put a stop to that. Two cancers and a bug no one can see all in six months it just got to me and I have lost the plot not hard in my case lol.

So thank you all I know where to come when I start to unravel

Every body stay safe

Bx

Just a quick one Clippy18 and to anyone else that is due to have a lumpectomy followed by daily radiotherapy to be given over the cause of 3 or 4 weeks or so..... 

It may be worth looking into a treatment called TARGIT IORT - this is a combined operation, consisting of lumpectomy followed directly afterwards of one dose of 'internal' radiotherapy (normal radiotherapy is given 'externally').  There are certain criteria for this, one of which is 'one' lump - however, I am thinking this could be 'one lump' per breast.  There are limited hospitals around the country that give this treatment, most are based around the London area, this treatment is available on the NHS, sadly though it is not readily offered (which is wrong all surgeons and consultants are suppose to tell us of 'every treatment available'.  This type of operation is amazing as everything is done there and then in one operation (this would depend on suitability and of course 'if' clear margins are taken - this thought is the same with any operation 'getting clear margins'). It does do away with having to commute daily to and from the hospital for a 3 to 4 week period.  

Due to the current circumstances, this operation 'may' be offered on a more readily basis (I can't see it though, as there is some much that has gone on behind the scenes that has stopped this treatment from been rolled out - namely radiologist listing this type of operation could put their jobs at risk (to me this is crazy, it would free them up to carry out more treatment on other patients).

It is well worth anyone currently waiting on treatment to look at this option, the reason I say this, most patients are normal sent on this journey without a moment to breath or time to even consider all the treatments available to them - this might just be a time when you can have a look.  The treatment is approved by NICE, there are certain criteria, the main one I believe is that you only have one lump in the breast - which leads me to thinking a lump in each breast might then allow for this treatment - this is just my thoughts, I would certainly recommend that you look into this option, if suitable.  

There are limited hospitals that do this treatment - you would have to weight up the pro's and con's of the distance that you may have to travel over the doing away with the daily journey for radiotherapy.

I think it is well worth having a look to see if you qualify - especially at this time, more information is here....

https://www.targit.org.uk/intrabeam-targit-iort-information

https://www.ucl.ac.uk/news/2018/feb/nhs-breast-cancer-patients-benefit-go-ahead-ucl-pioneered-treatment

I hope this proves helpful - I will shout about this treatment every time, it is available on the NHS - yet sadly (angrily) it is rarely discussed or even offered - this is so wrong, as all forms of treatment are suppose to be discussed.

Hi Clippy18,

Although the medication leaflet may list loads of possible side effects you may not get any of them.

I've been on Letrozole for 5 years and the only side-effect I had was a few weeks with trigger thumb which went away without any treatment. I've had various brands of Letrozole and not found any difference in their effect on me.

I know I may have been luck,y as there are many discussions on here with people reporting problems with side-effects, but the people who don't have problems don't tend to start a discussion to report that so possibly you don't get to hear the good-news stories as much ?

Hopefully you will be lucky as well.

Nic