@suzie19 Thanks for sharing your story. So important to let everyone know that we all have different experiences with these drugs. This forum is so good for venting especially as we post under a username. I hope you hear from your breast nurse soon and she is sympathetic to your situation.
@acantilados I hope you call with your surgeon was positive.
@carriel67 Welcome to the forum that nobody wants to join but when you do you have so much support. You have been suffering so much on Anastrozole. Many people say they feel ‘left’ ‘let down’ when they don’t hear from a doctor or nurse for a long time. Two months seems quite long, if I was you I would chase them up to talk everything through especially the abemaciclib as @entropy has said. Sometimes the NHS doesn’t work efficiently, I have had to chase up so many things, last year I had to chase me annual mammogram, I was told by a very grumpy breast nurse that they had sent the referral but the radiotherapy team didn’t have my name, I politely said ‘I need my mammogram, I don’t care about who did what where or when just book me a date’ I really wanted to shout at them! Well done for being proactive getting a Dexa scan, I was refused one, even though I asked for a baseline as I was told I was having the treatment (zoledronic acid/zometa) so I didn’t need one. I also had to chase my GP for a cholesterol test, to be told they weren’t aware one was needed!
@littlecaf I’m sorry to hear about your migraines caused by Tamoxifen. I pleased your oncologist was happy to listen and agree with you it was best to stop. Thanks for sharing the date re Herceptin and Phesgo as I was HER2+ too.
Well my surgeon was wonderful as usual. Took it to MDT and oncologist who doesn’t know me from Adam (never met one) basically said 5 years. ( done almost 1.5 years).
Surgeon doesn’t agree but hands are tied and said it’s up to me. Went through the side effects and that I’ve had a mastectomy and grade 1 tumours all tiny under 8mm. Predict score 0.2 0.5 and 0.8 benefit of hormone therapy 5/10/15 years
I’m taking the break now and I have no idea what I will choose at the end of the 6 week break but I am having a holiday that’s for sure .
Thanks as ever lovely people
(I meant to add how do I work out my recurrence stats if I haven’t been given an Oncotype - they won’t do one for Grade 1 tumours). I know the benefit is tiny (albeit for survival) but don’t know the recurrence?
You sound a bit more chilled after your meeting. I had a 6 week break from Letrozole and swapped to Exemestane, it much better but not without some side effects.
The NHS use the Predict tool see link below. They recommend you use it in consultation with a medical professional.
thanks naughty_boob - yup done the predict - benefits are tiny…
predict V2 0.5% at 10 years
predict V3 0.4% at 10 years and 0.6% at 15…
Hence the dilemma…
but this is survival rather than recurrence - I don’t have any recurrence scores.
x
Hi there
Could I ask how you got on with the Anastrazole? I’m on a 2 week break prior to seeing cons as Letrazole killing me!
Hoping Anastrozole may be better.
Thanks in advance
@acantilados I can’t understand why they’re pushing you with such a tiny benefit?
I was given my recurrence risk by my radiologist ahead of my radiotherapy. It was 3-4% without radiotherapy and 1-2% if I went ahead. She said it was entirely up to me whether I had it or not as the benefits were so low. I did have it, mainly because I wanted to stay on HRT and I thought I’d be more likely to be prescribed it if my risk was that low.
Can I recommend the book Oestrogen Matters by Avrum Bluming for anyone who hasn’t read it and is faced with decisions to make. He’s an oncologist and breast cancer surgeon and it’s very informative and well researched.
I told my BCN and surgeon that I wasn’t taking Tamoxifen when they tried to give me the prescription and we left it at that. I’ve not discussed it since and tbh I’m quite happy not to see anyone and put the whole thing behind me now and move on. I don’t really want to see anyone annually or do any follow ups other than my annual mammogram.
I just want to move on from it now and focus on my best quality of life that my HRT will give me such as protecting my bone health, heart health and reducing my risk of dementia
It does, on the face of it, appear that your predict scores are very low. The problem with Pedict though is that its a very imprecise and blunt tool. It lumps every tumour into grades and and takes no accout of type. Doesn’t ask if lobular or ductal, or a special type of fast or slow growing. Then what people would like is to see the back of cancer without a return, but it only gives mortality. More people are living longer with metastatic breast cancer, sometimes more than 10 years since original diagnosis, but anyone would ideally not want to be in that situation either, especially if those 10 or 15 years have been filled with morbidities from treatments to prolong life. Yet to statistcs, it looks like a success ( another person surpassing 10 or 15 years, but by any means possible with no measure on quality of life). Unfortunately, Predict is all there is as a tool but it’s far from great, only a vague indicator at best.
My prdict is 1.4% over 15 years, would seem not as low as yours, but was in 1 place, and such a rare type with rare receptors for type, I’ve not seen a case like it, so nothing to compare really. I doubt predict is meaningful for me.
I think on balance, if a person is trending low on predict and has bad side affects that impinge heavily on their life, then its fair to reconsider options. If we opt out of treatment, I think that naturally makes us possibly more vigilant for signs of recurrance, which is a good thing. Some people may blindly think they will be ok if they have taken everything offered, move on mentally, only to get caught out by a return regardless.
I am now in week 3 off Letrazole and the joint/muscle pain that was so awful is ebbing away by the day. I haven’t told any medics I am off it, nobody to tell as don’t see anyone. I booked a GP appointment after reading some posts on here and so will tell my GP. My BP and Cholesterol were high, so i want to get those measured to see how things are without Letrozole. I am happy with my decision as my joint pain was so extreme and I hadn’t realised about it possibly being Letrozole until reading on here. It is certainly right for me to stop, I am just now working into my retirement and feel so much better about that as my energy and pain is lessoned immensely. XX
Hi @harr
I was never put on Letrozole - it was Anastrozole from the start. I was lucky in that I had a type of cancer that rarely spreads outside of the breast and it was caught very early . My risks on Predict were very low and I have other health conditions to consider so I stopped it after just under 5 months . It was a bit of a snap decision but then I took a long time to think about going back on it and decided against it . Initially I had a lot of " menopausal " side effects ( but much worse than I had during the menopause ) which did settle down after about 6 weeks . Unfortunately the joint pains then took over - at first it was mainly related to old injuries of which I have a fair few but by the time I stopped it was everywhere and I felt like an old woman ( I was 56 ) .I have heard some people say that their joints improved 6 to 12 months into therapy . I was taking Ibuprofen like sweets but it wasn’t working . My hair was brittle and thin as well though my hairdresser said that with hormonal changes that often sorts itself out after a few months - she knows what she’s talking about I was there earlier today and was her third client of the day with a history of breast cancer.
I’m in two support groups and have heard a couple of people say they’ve been a bit better on Anastrozole and others who have switched from either Letrozole or Anastrozole to Exemestane and been able to stick with it . People on Tamoxifen seem to have less joint pain but I’m not able to take that . I’m really sorry that you’re struggling with side effects - I did find some benefit from Yoga especially Somatic Yoga which I hadn’t done before I got breast cancer which was very gentle and helped to release tightness / stiffness and pain from my joints and muscles temporarily.
I don’t know your history but if my risks had been greater I would have tried to persevere maybe with a different brand or something . I have Pharmacy2 U and they only ever sent me Teva. If you’re thinking of stopping it’s a big decision so try other options and get as much j formation as you can then make the decision that you can live with. Xx
IME, I’d say that tamoxifen possibly improved my joints, maybe as on the cusp of menopause. I even think my hair was slightly thicker. I still would not trade it for not feeling mentally like me at all. The brain fog was better after 2 days, the depression that Ive never felt the like of prior, has not occurred since, and the multiple hot flushes day and night went after about 2 weeks. I have to fight harder not to put on weight now though as I don’t get daily dizziness and waves of nausea, so my appetite is higher. I have more energy for exercise and better stamina to do it, so that is a huge benefit.
Hi Josie;
My surgeon doesn’t agree with the oncologist but of course there are processes and procedures he has to go through so he took it to the mdt meeting . The first oncologist who said no to stopping has now left so he took it back to a new oncologist at mdt ( doesn’t know me , never seen me) who simply said “5 years”.
I am leaning towards stopping because at this stage my risk of being on the tablets is outweighing the risk of being on them 0.5% at 10 years…. I’m not usually a non conformist but hells bells this one is hard for me to decide!
Thank you so much. I’m very happy to try out other options in the first instance and from here appreciate everybody’s experience on these drugs are different so one other may work better for me.
I have certain autoimmune issues which complicates things and sometimes its the fillers and shell on meds which my body dislikes. I had to swap around on my thyroxine before and cannot take anything containing manitol - for example.
Good luck and thank again for the response, really helpful.
I’m a week into an agreed 2 weeks off to check it is the letrazole (ha ha!) And I’m feeling 100 times better already!
But there are other options and I’m keen to discuss as I dont want the BC back either, so do encourage you to explore with GP or consultant - contact your macmillan and ask to see them, they don’t come to you once discharged unfortunately.
Sometimes its the fillers and additives that cause the problem not the drug itself and other brands of the same thing eg accord or teva, makes a difference.
The ingredients in letrozole vs anastrazole vs the other one (name escapes me) are actually very different.
Good luck on the search
@acantilados I’m never a conformist, probably why I’m still on my HRT
My benefit was 0.1% on 5 years, 0.2% for 10 and 0.4% for 15 and they were still suggesting I take it for 5 years - madness! Sometimes I think they don’t look at the individual at all
I noticed a difference after being off for 48 hours though somethings did take months. The advice from the BCN at our support group was to try different brands and if you find one that suits you get your GP to put that brand on your prescription and go to a small independent Pharmacy who apparently are able to buy for individual patients more easily than the big chains . Even so some people have struggled to get the brand that suits them best . If there’s a Pharmacist at your surgery or a good local I dependent chemist they may sit down with and go through all the ingredients with you if you go with a list of what you can’t have plus your medical history . My hormone therapy was prescribed by my Surgeon initially - really nice man who thought an AI would be overkill for me but he prescribed Tamoxifen without really looking at my medical history and it wasn’t really suitable . Xx
Hi josie2 -Those are definitely low!
Predict v3 brings me down to 0.4 at 10 and 0.6 at 15 but v2 still seems to be the one used.
Do you mind me asking what size your tumour was? Mine was 4mm and 7mm lobular hence mastectomy x
I was high er ( and pr but I believe high pr is good)
