ALL RECENTLY DIAGNOSED HORMONE POSITIVE, HER2 NEGATIVE, POST MENOPAUSAL, LYMPH NODE 1-3 POSITIVE WOMEN

Thank you, that’s really useful to know. Fingers crossed the tests will show where I am before I get to that bit of treatment Xx

I got asked which I wanted tamoxifen or letrozole. Thankfully I’d been ready up and requested letrozole.  I’m going to be on it fo 10 years apparently. I think that once they had the go ahead for up to 3 positive node cases, someone sent the samples off. For whatever reason it wasn’t in my notes that it had been done so my oncologist was very apologetic. It is mind blowing that last week without the test results I was preparing for chemo treatment which, with this knowledge about my particular cancer, would do more harm than good. If you don’t  me asking, what was your score?  

Hi Angua, not far off you - my score was 8. Yes it’s naughty (understatement) that this has been going on in our area. And as far as I know if you live in south Warwickshire and are under the care of Warwick hospital Oncotype is STILL not being funded for positive lymph node cases. I am writing to the highest level in the hospital- I’ve had a reply the issue is acknowledged but not solved yet  ….so it’s just not good enough. There could be a woman just like us being funnelled right now through to chemo unnecessarily. Sort for the rant - it makes me very angry 

Even lower than mine!  I took the decision to have my treatment at UHCW despite it not being particularly local. I’m in north Warwickshire and was shunted to George Eliot after biopsy but I told them I wanted UHCW. I don’t know how much the cost of chemo and all the other bits cost - I would have had a heart scan, port fitted in day surgery, wig appointment, injections for building up white blood cells, blood tests etc but there must be a case for doing a one off test for tailored treatment. I’m guessing Warwick hospital is not in the same trust as UHCW (although Rugby St Cross is).  Surely there are national guides?

No national guidelines apparently. But a NHS confidential business case exists in Warwickshire that people know about - calculating - surprise surprise- a net saving to the NHS for using the test. I have heard the problem might be cash upfront to pay for the test and/or NHS funding red tape. Not good. I’m planning to write to my MP as well as keep bothering the hospital about it.

Hi, 

Just to say I got my FSH level results and I am post menopausal.  Had my surgery as planned including sentinel lymph node removals on 14/12, results still not in, but I hope to get them by phone on 24/1. 

I was also wondering what hormone therapy you were on and how you are getting on with that?

Many thanks Mickey xx️

Mickey, I wish you well with your surgery recovery and with your results. Push for Oncotype Dx test if your surgery test results allow.  Xxxx 

When it was understood I didn’t need chemo and before my radiotherapy started my oncologist put me on Letrozole. I used the hospital pharmacy for the first packet and they gave me the Accord brand. Boots now stock this brand for me - my GP happily specified Accord brand only on the repeat prescription because I didn’t want a brand change. I am now in my 4th month. I take the tablet before I go to bed with Calcichew calcium tablets.  I had a bit of hair loss when I shampooed initially but that seems to have stopped. I had a sore foot for 3 weeks and my feet ache now a little in the morning. But I do 5 miles of walking now with no problem in one go and I think I can do more. I walk over 10 miles a week plus do pilates.  I don’t have any night sweats. So my side effects are mild. I am lucky - if you get letrozole maybe you will be too and it’s important we try to take it. Stay in touch Freddie xx

Thanks Freddie for your informed reply, really helps and very much appreciated.  I know we’re all different how we really t to things, but  I’m the sort of person that would rather be as prepared as I can be. 

We’re the calcium tablets recommended ? Do you think they are of benefit and where did you get them from? 

I know I need to take it, with so much cancer on that breast so soon after a clear mammogram, I’m not taking any risks. 

Have a lovely day and thanks again.  Will let you know how I get on. Mickey xx️

Mickey, You are so like me. The more you know - the more informed your choices and actions are; and you feel you have got some control back!  
my oncologist prescribed vitamin d and calcium supplements alongside Letrozole (for bone maintenance). My bone scan (DEXA) done on the Pelvis when you start Letrozole was normal.  But the oncologist gave me these to help protect my bones going forwards.  My GP then issued Calcichew tablets (they have these 2 ingredients - they are sweet lemon flavoured chalky tablets - 2 per day - I find them sickly sweet but no issue!). I also pay myself for cod liver oil tablets for my joints - again oncologist said this was ok.

something I forgot to say about Letrozole. I’ve had Bacterial vaginosis - Letrozole has dried me up and changed my PH levels underneath. I spoke to my oncologist and breast care nurses about this. Both recommended regularly using Replens moisturiser twice/three times a week to help with this side effect. You can’t use anything with hormones in it but Replens is ok. I’ve managed with a fight to get this on prescription too.  If you get these problems you might need some lubricant as well to get the Replens applicator up there. Sorry for detail here but I want help you and anyone else who is reading.    
please stay in touch Freddie x

Hi Freddie, 

Yes, I’m exactly the same, I try to deal with things one step at a time or I find it all gets too much. Having said that when I see something like your original post, but I’m not there yet, I clock it to see what I could do now and for future reference. In the case of your post, it hit home to me that I had to ensure my FSH levels were checked. Without that, they were assuming because I’d had a random bleed that I needed to go on tamoxifen for the first two years. I thought it was just stress personally. So, at my pre-op checks, I nicely asked them to check my FSH levels too because the BCN and I weren’t sure where I was and needed to know to get the right hormone therapy post op. Exactly, it gives us a little control back and heaven knows we need it. 

Definitely wasn’t too much detail, it is what it is and that’s the finer detail people don’t get warned of as potential side effects. Thank you, I’ll keep all that info. 

I know at my pre-op they took bloods to check for bone density, but obviously I haven’t been told about those results or what they mean and so I’ll ask at my results apt, even if it remains by phone. 

I can’t remember if I asked what surgery you had and if you had radiotherapy? (Sorry if I missed that).  I had a masectomy and diep reconstruction and so I’m still not sure about radiotherapy. 

Will do and you too - Mickey xx️