I'm seeing my consultant tomorrow - annual review. He's not the easiest of people to talk to - he's in a rush (understandably) & very matter of fact. The status of my brain fog will dictate whether I'll be able to open up a reasoned discussion for ceasing Letrozole after 2.5 years (I'm on it for 10years). Please could I have a practice run here? Could anyone tell me how to be more concise or whether I'm wasting his valuable time by asking in the first place?
Brief history. 2014 Total hysterectomy -(repeated Cin1 cells & adenomyosis.) 2021 Right mastectomy Lobular 40mm ,ER+ grade 2 plus unsuccessful left lumpectomy for DCIS 13mm, ER+ grade 1 resulting in further mastectomy 6 weeks later. 3 lymph nodes removed either side - clear.
Protracted recovery from surgery due to infection & extreme sensitivity to all products, dressings etc. No reconstruction planned. No radiotherapy or chemo. Treatment: Letrozole 10 years with daily antihistamine & VitD .
Usual reactions to Letrozole - major hot flushes, anxiety, aches, pains, tiredness, brain fog, digestive issues etc . . Mood swings are pretty horrendous & I've just come out of a very bleak period & i'm not sure I can face another. I had a short period on antidepressants as breast cancer diagnosis & treatment conincided with a few of life's other curve balls but my body doesn't react well to any intervention, surgical or chemical. I've been told the Letrozole side effects I'm experiencing are similar to the menopause on steriods -some folk suffer worse that others but am I one of those or do most grin & bear it? I've always been at the mercy of my hormones & the horrors of PMT but II worry that endocrine treatment is going to tip me over the edge.
6 week trial period off Letrozole early last year eased joint pains & stiffness & hot flushes reduced. Lost my nerve though & started back on the Letrozole . Hot flushes came back with avengence.& mood swings & depression really hit hard. .
I've had a full set of bloods done via GP last month & everything clear so no underlying conditions.
So what do I ask ....
Believe my cancer was 'low grade'? I've had a double mastectomy with clear lymph nodes so if I stop endocrine treatment what is the % of risk of cancer re-occurence?
I just feel I need to be asking more but don't know what. ... any advice would be appreciated. Thank you. :)
Hi all, Apologies for the delay in replying but needed some time to process . Thank you so much for your support.
Held my own at consultation & he was both approachable & empathetic once I'd passed him a bullet-point list of concerns. . Breast nurse was called in & we tackled the conversation together. I also asked her to note things down.which lessened the anxiety!
Turns out both cancers were stage 2 which I queried having been told DCIS was stage 1. He checked notes & confirmed both stage 2 (assume possibly upgraded when lumpectomy failed) with no lymph node involvement . Explained why I wasn't offered radiotherapy as location & type of cancer etc. dictates who is a suitable candidate - I wasn't hence 10yrs Letrozole. If I stop Letrozole now he couldn't give me prognosis as 2 different cancers involved. Recurrence if it happens can be at 3 years or 7 years & if I get to 10years with no issues then it's thumbs up that I'm clear! Recommends I stick with Letrozole & he'll review again in 5 years. Venlaflaxine for depression & Oxybutyinin for hot flushes. CBT is also an option (but doesn't appeal to me) . Exercise for mindset & weight loss (I'm 5'5" 12st) to take the pressure off painful joints, improve mobility etc.
Understanding & sharing more about what, why & when & also realising I'm not on my own with these symptoms is helping me to reason things in my mind. Thank you, Standing shoulder to shoulder with you all. xx
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2025 © Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 3rd Floor, Bronze Building, The Forge, 105 Sumner Street, London, SE1 9HZ. VAT no: 668265007