Hello all, I hope it’s OK to post this. I am now 71 yeas old. However on Christmas Eve 2024 I received a diagnosis of Breast Cancer. Very traumatic time. However it turns out I had Stage 1 and it was very treatable. I did not hear those words just the dreaded C word.
I have had surgery, partial reconstruction, radiotherapy and now have l,ymphoedema in my right breast. I have been taking Letrozole.
I don’t want to make a fuss as I was so very lucky and feel guilty for still getting anxieties as so many others have undergone much later stages than me.
When I started with Letrozole I was OK, but about 5 months later I started getting severe joint, muscle and bone pains. I put it down to bad posture and too much computer work. I have undergone 4 weeks of an 8 week course for Alexander Therapy to help with this - another 4 to go starting in January.
However my Doctor did a series of blood tests for me and all came back “normal”. So I contacted my Breast Care team and these pains are a normal side effect to Letrozole.
I am now being put on Tamoxifen for a trial period. However I am assured that my “predicted” recurrence is very low so I want to stop I should be OK?? I prefer to take something because then I feel I am doing something to help myself? Is this “NORMAL”.
I’ve no idea about Tamoxifen so hope it is OK.
ALSO I am due to have my first mammorgram since Surgery on 22nd January and am feeling very anxious about that, especially as I have Lymphoedema. Is this “NORMAL” too?
One of the problems I have had is my age, every body I’ve meant on courses have all been at least 20 years younger than me so I feel really stupid for making any sort of fuss over a stage 1 diagnosis. I’ve no idea what Normal is any more!!
Hope this makes sense and that it’s OK to post these stupid anxieties of mine.
Hello @maureen4 It’s nice to meet you although the circumstances are a bit rubbish aren’t they
I’m very early in my journey so I can’t comment or offer advice I’m sorry. I just wanted to say that whatever you are feeling is normal. Cancer doesnt discriminate. Age, race, gender. It is life changing. We are all branded in one way or another with it. Physically and mentally. It gives us an opportunity to experience real dread and worry like nothing else. One thing I know now is that I used to worry an awful lot about nothing haha
The changes in your medication are sure to highten your anxiety as well as your first mammogram. Of course your feelings are completely normal and justified
Hi @maureen4 I’m now 70 and have recently gained agreement with the head onco to stop endocrine treatment after three years. I also had a Grade 1 tumour (with some low grade DCIS). I’m two years further on than you and can assure you that whilst your anxiety is completely natural and understandable, it does get better as time goes on. I’ve had three annual mammos since active treatment finished and each one has been stressful but thankfully, all three show no evidence of disease. Two more to go and then it will be elective mammos which I think I’ll do once every two years. You are only one year on so still quite early on in the “coming to terms with it” process. Please don’t beat yourself up about it, there is no set timeframe for moving on - if we ever do completely, which I very much doubt. Nor is it helpful to compare yourself with anyone else’s situation as there are as many individual stories as there are people diagnosed - differences in histology, differences in age, differences in personality, differences in comorbidities, differences in domestic set up, differences in past experiences - so you cannot be compared to anyone else really.
Might it be an idea to have a word with your GP about your anxiety to see if you can be given something to help? Are you aware of your Predict scores? Obviously they are a bit of a wet finger in the air but it is what the medics use so must have some value and may help you to take a decision about whether to continue with Tamoxifen or not. Do you think it might help to investigate the Moving Forward course here at Breast Cancer Now? You can find out more about it by pressing this pink link Moving Forward | Breast Cancer Now
I remember you from your diagnosis, Maureen, so am sending big hugs.
Sorry to find you here Maureen and how you feel is completely understandable. I’m a bit younger at 58 but my diagnosis was similar to yours four years ago, stage 1, low grade. Everyone in my breast clinic was very jolly saying everything would be fine, they weren’t worried about me and that I was lucky it was all found so early. Well, I didn’t feel lucky frankly being told I had breast cancer! Treatment was swift, trouble free, (I had a mastectomy due to extensive low grade DCIS, as well as a very small invasive). Healing was fine and then the anxiety hit when they sent me on my way with hormone therapy. Apart from yearly follow ups, in so far as they were concerned I was done! Any cancer diagnosis is devastating and you will probably need some talking therapy and counselling to help you through it. I did and it helped me enormously put into perspective what I’d just gone through. Talk to your nurse and Macmillan.
With regard to Letrozole. I’m on it for 3 years, currently 18 months in after starting on 2 years of Tamoxifen. Most people post menopause take Letrozole or other AI’s as they work differently to Tamoxifen. There can be a higher risk of uterine cancer and blood clots with Tamoxifen. There are side affects with both but I choose to press on. I figure even when the benefit of AI’s is deemed to be low on PREDICT scores, there is still benefit otherwise they wouldn’t prescribe them. The words of my surgeon constantly ring in my ears when she said you are low grade and low risk but occasionally she had seen low grade breast cancers “play up”. That did it for me, I was determined to take them for the full course. I understand when some people’s side affects are miserable that they want to stop, and it’s a very personal choice. However, there are things that can help like changing brands, taking at different times of the day and even keeping moving and pushing through the stiffness and pain, which is what I’ve done. Now, I have very few side affects and the ones I do have I ignore or hardly notice. I’m just too busy getting on with my life to bother thinking about them in the knowledge that I’m taking my meds and doing all I can to prevent recurrence.
I hope you feel better soon and that your anxiety can diminish with some counselling. It’s very real and very debilitating.
Thank you, all of that does make a lot of sense, thank you. I’m just panicking I think as it is the time of year I got diagnosed and my first mammogram is due. I have been to my GP and have upped my Citalopram a bit. I suffer with anxiety issues anyway so it just needed adjusting. My Predict score is apparently low, which is very reassuring. Funnily enough though I’m not overly concerned about it recurring in the affected breast, but do panuc a bit about theh other on. I did go on the Moving Forward course last year and it was a help. It was just that everyone else on the course was at leat 20 years younger than me, much further on and more advanced stages. They didn’t make me feel guilty at all, it was just me.
Your kind words help a lot and especially someone of a similar age with a similar diagnosis so you understand. Thank you for taking the time to reply it is so much appreciated and I feel better because of it. Thank you.
Thank you so much for taking the time to reply to me and your words do make a lot of sense, of course. I’m just having a few bad moments I think - largely due to the time of year is the same as when I received my diagnosis and the upcoming mammogram, which I’m very nervous about.
Thank you so much for taking the time to reply.
I felt exactly like you, when you get told that are very lucky as it’s only Grade 1 and treatable - I did NOT feel lucky to get cancer at all. Mind you those words weren’t said to me by a medical person it was people who had never had it. I was told once that it was only “mild” - that upset me a lot as it made me feel guilty for all the attention I was getting and took a while to get over that.
I think you are right I may well go for talking therapy.
I am taking the advice and switching from Letrozole because my aches and pains were very severe and debilitating. I’m not too keen on the tamoxifen but, like you, I feel I want to do as much as I can to prevent it coming back. I was told it was unlikely but not impossible but in a medic speak kind of way!!
Thank you so much again for taking the time to reply to me, it really does help.
