My 80 year old mum diagnosed with Grade 2 invasive lobular breast cancer ... prescribed Letrozole

Morning 

Warm welcome to the club no one wants to join, so sorry to read your mum has been diagnosed with BC :-/

Surprised you have had no replies as yet, but this is a busy group and sometimes a message can slip off the recent activity page.

I'm thinking that because of your mum's age and the higher risk of harm if she was to get Covid is why her hospital appointments are being kept to a minimum just now, hence the tablets.

The main course of treatment would be surgery as the primary treatment to remove it and chemotherapy and/or radiotherapy if deemed needed from the surgical pathology report.

Grade 2 is good (if that is the right word) well better than 3 or 4 anyway. You may feel just tablets are a bit of a fob off but be assured Letrozole is very good at reducing tumour size and keeping things stable until this Covid situation eases enough for a more normal standard practices to resume.

Some patients who for whatever reason are not given chemotherapy are put onto Letrozole for at least six months before surgery and in some cases the lumps have shrunk enough to enable a lumpectomy instead of a full mastectomy as the Letrozole starves the tumour of oestrogen which it is feeding on.

You could contact the dept who advised the tablets to ask how long she is expected to be taking these before surgery is considered. They may not have all the answers but will wait on further scan results later to see what effect the letrozole is having but could maybe give you a 'ball park' time frame ?

Don't know your mum's present health but Letrozole can cause a few joint aches after a month or so :-/

Hope this is of some help for now, any questions don't hesitate, the only silly question is the one that isn't asked.

Take care, G n' J

Hi G n J

Thanks so much for your informative reply.  Apologies for not replying sooner.  Your advice brought me some comfort and confidence in helping manage mum's treatment plan.  We've since had another scan to check the size of the lump.  It has decreased in size a teeny tiny bit.  Staying on Leterozole .. has been taking since March 2020.  Discussion with consultant. Mum has been offered surgery (mastectomy and removal of some nodes)  for September and is isolating from next week Weds 19th August.  

I'll skip onto some other forums to look and learn about the surgery, what to expect and how to manage post surgery. Mum doesn't do the internet etc so I've to try and regurgitate information into bite size chunks as her concentration isn't the best!

I'm sure I'll have more questions at the next step but feel confident I can ask them on here.  

Best wishes and massive thanks again.

Jools 

Hi, so sorry to hear about your Mum and I hope her treatment goes well. I found that  taking the generic brands of letrozole caused me huge amounts of joint pain to the point I struggled to climb stairs.  It doesn't affect everyone in the same way but if it does ask for the branded version  Femara by Novartis instead. After a year  of pain within 2 weeks of changing to Femara it had all but gone . 

Hello , 

I'm sorry to hear about your mum, but very pleased they are doing surgery.  You will find many of us may be able to guide you with surgery concerns, what to do and what not to do, what to ask etc.  I had lumpectomy with combined radiotherapy - so I'm not able to advise, however, other ladies on here will be able to help I am sure.  

I'd just like to add to what has posted this is very good to know this and can make a world of difference.  I say this because with your mum's age and all that is going on, it will be reassuring to know that any new pain will most probably be a side effect from the letrozole and not related to the BC itself .... meaning especially for your dear mum to know 'its a side effect' and nothing to worry about thinking the BC is affecting the whole body - if this makes sense (of course you should always get anything checked up).  Just that the side affects can be horrible and with your mum not on the internet she wouldn't know this is a normal side effect (I'm repeating myself and waffling sorry).

As I say there are many ladies on here what will be able to offer advice and support xxxxx

Wishing you dear mum all the very best and tell her, she is now a Fruit Loop and she will get through this.

Sending love and hugs  xxxx

Thanks Soniraeb, that's really good advice.  I'll shall make a note of that .  Mum's not complained of any joint pain as yet and has only been on Leterzole since March 2020.X

Hi WhatHappened,  thanks for the advice.  I'll be honest I feel concerned in mum going for this op at this time in her life and wondered if she would be able to stay on Leterzole without surgery intervention, which was what was discussed with the consultant at the beginning of March. This is probably due to the fact I feel an overwhelming responsibility to get the treatment right for her (my dad passed literally just 12 months ago, so it's been a lot for her and me and my sister to take in).

The consultant seemed keen to do the mastectomy as soon as it was safe to do so with the Covid situation complicating things.  We are guided by the consultant and I have to say she is a really super person and mum and myself do feel safe with her., which I feel says a lot.

Just to get a better understanding, am I correct in thinking as it's an invasive lobular, type they are best removed due to the potential to spread. It's been caught very early at a stage 1.  

Mum has mentioned that where the lump is can sometimes be painful. So my thought process is, if it's hurting, it's best not left there !

Apologies if I get the terminology etc incorrect, I'm new to cancer treatments and trying to gain an understanding of the ins and outs of it. I'm a bit like a fish out of water with it all .

Many thanks for any advice from all, truly grateful. 

Regards JoolsX

Hi Jools,

This is tricky, if you don't do anything and something bad was to happen then you might forever blame yourself.

I hope the other Fruit Loops, I mean, Ladies that have had a mastectomy will step forward and offer you help and advice.  I am not sure if you know the size of the BC etc - and I'm presuming a lumpectomy isn't an option?

Again, there is the worry with the Cover-19 - this is such a worry again, for the if your dear mum goes and has the operation as was to pick this up - well, this is the problem most of us are facing, which to do for the best.  Although, most have now set up certain produces to reduce risk and cover all bases.  

The letrozole is given to post-menopausal ladies, and given for different reasons along the journey, some ladies don't start on it till after operation, some can't have operation so given letrozole and others given letrozole to shrink BC to then have operation.

I'm on this, I started it before my lumpectomy, whilst I was looking into treatments and then had operation and followed on with this for either 5 or 10 years.  

A couple of thoughts.... your mum might not get too many side effects due to age... maybe your mums natural oestrogen is already low (letrozole given to reduce oestrogen ..... that is made up in the body, in the fat cells - hence taking the 'food' supply away.

I know my operation is nothing to compare, what I will say, I'd never been in hospital, never had an operation before this and I could not, I really could not get over how 'little .... virtual no pain'.  The most painful part to me relating to surgery was where the sentinel node (biopsy - I think it was a biopsy) this was sore like a 'stinging' sensation - but where the lumpectomy was carried out .... was pain free, I had a paracetamol when I was back home 'in case any pain was going to come.  It was awkward trying to wash hair - but these things were more of a nuisance.  Operation pain wise there was none.  Now of course I can't answer for a mastectomy, so I hope other ladies will jump on and let you know.   

One thing I feel sad about, is when people mention ages, it seems once you reach 80 people, doctors, etc stop talking to that person and talk to others.  My lovely mum is nearly 90 and is so young minded and a great laugh.... we had lost dad some 8 years ago and I am as mum says 'her life' and because of this ...  I couldn't tell my mum about my condition, operation, etc - I couldn't cause her the pain and upset. 

I'm starting to waffle, so, with this I wish you and your dear mum all the very best.

Please ask any questions you have and there will always be some kind soul that will try and help or offer advice.

xxxx

Hi WhatHappened 

Thanks for you super speedy response, very helpful once again.  The BC lump is 18mm .. so just today the first mention of a lumpectomy was discussed (telephone consult) but that would have to be followed up with 15 radiotherapy sessions. The option of having a mastectomy would remove the lump, some nodes and all being well no radiotherapy but to continue on Letrozole.  So mum has gone for that option with my full support (and sister's).  

She's a spritely 80 year old, independent and keen to keep that way (me too!).   Your mum at 90 is doing marvellous, but your right .. you can't tell them everything as it's too much for them.  Must have been terribly hard for you that. 

But then us females are strong :-)

I'll start a new a new post regarding surgery for advice from those lovely ladies that had undergone this type of surgery.  

I'm hopeful the op will be all straight forward, so fingers and toes crossed.

May you stay cancer flare up free, strong and positive X

There is a treatment called #TARGIT IORT, this is a combined lumpectomy/wide local excision and one off 'internal radiotherapy' - done at the same time.  Providing margins are clear that is it, treatment finished apart from the letrozole tablets.  I would guess this treatment has not been mentioned to you or your mum - it seems for most, sadly, it never does get mentioned (all due to behind the scene politics - that this treatment will cause Radiographers to loose there jobs as not needed for this kind of operation). This operation is amazing and saves 3 to 4 weeks of daily travelling to and from hospital, hospital time, the list goes on.

Most Consultants don't mention this treatment if it's not available at their hospital, however, we are all allowed to be referred.  There are criteria's to fit, main one I know if is 'one' lump, I suppose the area you live plays a part - as in travelling with how things are at the moment.

I only discovered this treatment by chance, the BC was on the left side, this led me to looking into the radiotherapy side of the treatment; I had concerns for my heart.... this lead to me discovering this treatment - I plucked up courage and stepped outside of the box and had this treatment.  A few weeks after my treatment NICE approved this for use on the NHS under certain conditions.  From my making contact, I had had my operation and treatment within 10 days!! whilst the NHS had said it would be about a month, then you have the healing before moving onto the radiotherapy.

The treatment is called TARGIT IORT" (Inter-Operative Radiotherapy Treatment). I went private and travelled to London for my treatment; not because we could afford it, because it was what felt right for me, I would go in have operation and radiotherapy, stay in overnight and travel home the next day..... my main concern, mum would be totally un-aware. Thankfully, this is how it went, I had good clear margins and a bonus I was given my results before going home.  Some people are lucky that they have insurance that will cover this, others have the money - my thought at that time was 'we have worked hard and saved - now is the time to use our savings, what's the point of having the money in the bank for something nice, when (at that time I was thinking.... I might not even be here to enjoy it) so, I treated it like a holiday , we travelled down the day before for various tests, etc, we travelled by rail... first class, stayed in a nice B&B near to the hospital.  I would not change this for the world.  I will shout out about this treatment forever, ladies should be offered this treatment, it is out there and it is amazing.

I have to mention this treatment as I would feel wrong not.  It might not be suitable - but, it just might well be.  

Here are a few links - for you to have a look at what I am talking about.

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

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

Have look, ask questions, at least you know you are covering all options.

"Thank You" for your kind words, these are very much appreciated.  

Thinking of you and your mum and sister at this time xxxx

Hi Joolsie, Just to let you know I had grade 2 lobular cancer last year.I had a mastectomy, 4 months of chemo and then more lymph nodes removed because they had found cancer in one at first op.The chemo was offered because of this.Im in my 60’s so have age on my side compared to your Mum but I’ve come through ok as has an 84yr old neighbour who also opted for a mastectomy but no further treatment.She was only in hospital for 1 night! Good luck to your Mum and I hope she recovers well.