In 2021 when I was 57 I was diagnosed with bilateral DCIS diagnosed and after surgery and radiation treatment, started taking Letrozole. In my care plan it said I should take Letrozole for ‘5 to 10 years’ and in one letter from my surgeon it just said 10 years.
I’ve just had my final mammogram and received a letter to say it was all ok (phew) and I could now finish taking Letrozole and was being referred back to my GP.
I telephoned the OAFU helpdesk to ask if it was ok for me to stop taking Letrozole after only 5 years bearing in mind what my care plan said and was told by the nurse that as my tumours were only 10mm and 12mm and no lymph nodes were affected, the protocol was now for Letrozole to be given for only 5 years. She said there would be no benefit to me of taking Letrozole for 10 years, particularly given the potential side effects of osteoporosis etc.
So I’m concerned that this seems to contradict what I was originally told and I haven’t had a proper consultation with an oncologist. Is this usual? I would have thought that at the very least I would have a proper discussion with a specialist and be reassured that this is the right thing for me.
Also I will now only get mammograms every 3 years. I asked for annual mammograms and was told this wasn’t possible and she suggested paying for private mammograms in between the NHS mammograms. I thought I’d read somewhere that you can still have annual mammograms if you’ve had cancer.
I feel like I’ve been abandoned but then for the whole 5 years I’ve never had any catch ups with an oncologist to check how I’m getting on. My GP never seemed interested that my cholesterol had gone up and my hair was getting thin so I guess it might be best to keep away from the NHS, reduce alcohol and do more exercise to try and avoid the cancer returning.
Im in the same position as you. 5 years are up end Feb and only saw oncologist once in 5 years ago. Pharmacist said stop Letrozole at 5 years, consultant letter said 10 years and GP is on the fence.
Personally can’t wait to stop though.
Im continuing with annual mammograms privately. The money is worth the peace of mind.
Unfortunately after five years we all go back into the routine NHS 3 yearly screening programme - I was told this from the outset in 2021 and again a month ago. I am also intending to pay to have at least one more in between .
As regards the Letrozole many people are on it for 5 years only and it’s only in the last few years I think that they have upped it to 10 years for some patients so with the history you have given I would have thought that the risk of side effects from the medication would be greater than the potential benefit after 5 years . I understand that you feel that your Oncologist should be the one delivering this information , if you can’t get a consultation then perhaps you could ask either your BCN or GP to write / speak to them so that they could then send you a letter to confirm . It must be strange just stopping it like that and being discharged when you have had the reassurance of the service and medication for so long - I’m wondering if there’s a local support group you can join ? I’m in two - one is informal but the other is four times per year with BCN input and anybody can ask a question or speak to the BCN one to one not just those still on the books . You might also get some reassurance from speaking to the Nurses on the helpline 0808 800 6000 . Take care xx
I’m four years in and was told from the start that I would be on hormone therapy for only 5 years. I had two years on Tamoxifen so I’m only getting Letrozole for 3 years. I’m so worried about stopping early next year, it feels like my safety net. Things change and when diagnosed I was told I was HER2 negative. Now apparently that has been upgraded to HER2 low. My last yearly mammogram will be in December this year so it feels like being set adrift. Like others have said I’m committed to private mammograms in between NHS ones. Pricey, but worth the reassurance. It will be hard to afford them actually as we are currently spending a fortune paying for our son’s uni costs. I certainly feel yearly mammograms should continue on the NHS after BC. I’ve never seen an oncologist, just my surgeon and clinic nurses. The nurses are amazing but I’ve only seen the surgeon once since my mastectomy for IDC AND DCIS. I didn’t have any lymph or vascular spread and the IDC was 10mm so they said only 5 years of treatment. Looks like if I want to have a consultation with an oncologist I’ll have to pay for that as well!
Poor you that’s a horrid feeling … I have similar cancer to u but 2025 and I have been told 5 years letrazole …I guess as learning advances they realise no benefit for taking longer the 5 years ? I am dreading the side effects as only stayed letrazole 6 days ago
I am nearing the end of my 5 year stint with Letrozole and my next mammogram is scheduled to be my last one. My original letter said take Letrozole for 5-7 years. I have never had any communications from my surgeon or any from the hospital as to how I was getting on. I believe I can request mammograms via my GP. I felt abandoned and have been going it alone as far as the hospital is concerned for nearly 5 years. I am hoping that my sleep will improve when I stop taking Letrozole. It’s all very confusing. Good luck to you all.
Thanks so much everyone, it really makes a difference to not feel so alone about this.
Thanks Joanne, I will look for a support group to join, will also see if my GP can do something about annual mammograms (you never know!) but if not I will definitely pay. My mum died of breast cancer at 53 so 3 years is just too big a gap.
Like Rdz I’m actually looking forward to stopping and maybe getting my old self back. Side effects for me have mainly been low mood, lethargy and thinning hair. During the first year my joints ached a lot and i could hardly get down the stairs in the morning, but now t’s fine.
I will try not to dwell on this. Perhaps they know more now and 5 years may be long enough for me (I was HER2 negative which my surgeon said was ‘slow and lazy’). I really wish I’d pushed for an explanation at the time they said it would likely be 10 years. I wonder if they thought I had BRCA gene because of my mum but turned out I don’t.
I wonder if they consider that we are ‘cured’ so we don’t need to see an oncologist even during the 5 year stint on Letrozole? It’s not very reassuring though, especially when you just stop and there’s nobody to ask about it!
My last annual mammogram is on Friday. Then I’ll go back in the standard 3 year system - for which I am fuming as my NHS record said I’d refused my last (standard) invite; doh, because my annual ones are done in the breast clinic.
I am on Anastrozole for 10 years. This is clearly stated in the letter from my oncologist sent to my GP and the 2031 end shows in the prescription bit of my NHS app. Be worth referring to those and go back to your BCN to ask for 100% clarification with a letter from your onc. at least, f2f appointment or phone call with letter would be better if they are still adamant you stop taking Letrozole.
I spoke to my BCN team a week or so ago as my mammogram appointment hadn’t come through (was being ‘processed’), she assured me I can go direct to them if I have any concerns but they will ask me to see my GP and they’ll help close the loop to see someone as appropriate PDQ.
I never saw my surgeon after my op and only saw my onc twice - for that plan and when hospital treatment (chemo and rads) ended. I did see a resident doctor and had regular check-ins with a senior nurse practitioner during chemo to make sure I was fit for the next dose. I had a call with the SNP ahead of my Zometa infusions that finished in May to check I had no teeth trouble.
I was more bothered by the end of the hospital treatment, due to the care that came with it, than the ending of annual mammograms and back into the main system that’s coming up.
I think mammograms are a bit of a smoke screen. Why do they stop age 70 when the rate of breast cancer is at its highest aged 70 and above? The way I look at it you have an abnormal cell which keeps dividing over and over again. At some much later stage normally around 2cm diameter it becomes visible and palpable ie you can feel it. It might be years between day 1 and 2 cm size.
I had 19 years between diagnosis 1 and diagnosis 2. In that time I had no mammograms as diagnosis 1 was at 47 when I was below age to get mammograms. Diagnosis 2 was aged 67 but the first mammogram I had was after I found two lumps. I had very dense breast tissue as do a lot of women that get breast cancer.
Mine was ductal which does show up fairly well on mammograms but mine didn’t due to breast density so no good at all for detection.
Lobular is much harder to detect. I suppose what I am saying is - be breast aware re any changes in size, shape or lumpiness and don’t rely on mammograms.
If they were so great why stop them at peak time for breast cancer diagnosis? Cos by 70 you are going to die any way - main killer being heart disease not cancer.
Seagulls I feel I have to now write something in praise of the routine mammogram .
I thought peak time for diagnosis was mid fifties - I’m sure I remember looking at the poster with risk factors on at my second screening when I was diagnosed. I was 56 at the time and remember thinking that I hit just about every risk factor bang on . I agree that 70 is too young to stop having mammograms though so I will probably end up paying to have them for a bit longer if I’m still around which hopefully I will be .
My cancer was tubular which is a rare form of ductal and was found very early via routine mammogram - I couldn’t feel it and neither could the Breast Care Nurse so my routine mammogram did exactly what it was supposed to do by picking it up much more quickly than it would have been found otherwise . I have actually seen my original films - unlike my Radiologist I’m no expert but I have seen a fair few films of bones and various body parts during my long nursing career and I couldn’t tell that there was an 8mm cancer there.
One of my friends had a routine mammogram about 3 months after I was diagnosed and she was diagnosed with grade 2 breast cancer ( later downgraded to grade 1) and it was lobular . She was reassured by the Breast Cancer Nurse that she would have been unlikely to find it herself at that time as lobular doesn’t always present as a classic lump so can be more difficult to find on self- exam. In my case because my cancer was so slow growing the early diagnosis might not have made much difference but it might have been a different story for her. I have read stories on here about cancers especially lobular being missed on mammogram particularly due to dense breast tissue but they must pick up very many . I’m not sure that any diagnostic tool is 100% perfect.
You are right, no diagnostic tool can be 100 per cent but I think there’s a lot to be said for TLC i.e. touch look and cop a feel. Mammograms at three yearly intervals? No. Breast aware, yes
Seagulls - an 8 mm cancer is tiny, but I am glad it was found. Mine wasn’t picked up on a mammogram as I was under 50 the first time I was diagnosed. I found the lump myself. I met quite a few young women when I attended a weekly group for breast cancer patients at St Thomas’ hospital in 2004, one was 26, several were in their early 40s. I was 48. I don’t remember one person diagnosed via a mammogram. Two of the younger patients died of breast cancer, a great shame. One bought a sports car on her credit card, got a caravan down in Hastings and dressed in amazing 60s style A line dresses. She knew credit card debt was unsecured so it would end if she died. Unfortunately she did, but she knew how to live. I don’t want to be too negative, but at least we don’t have to have the kind of treatment they gave out in the 1960s when a friend of mine was told she’d be put under general anaesthetic, they would test the lump and then they would do a mastectomy if they found cancer. She refused to sign the form and didn’t have the operation, and didn’t go back as she had the most lovely big breasts and they didn’t do any other kind of op in those days. They bullied people into agreeing to have a mastectomy because breast conservation/reconstruction/oncoplastic surgery wasn’t done.
My friend is now 86 or so, she has rheumatoid arthritis and alzheimers now but not breast cancer…and two breasts.
I just checked and the mammogram programme is a screening every three years for women aged 50-70, so it is not as likely to pick up cancers as quickly as self exam TLC
I don’t want to put you off. My friend in New Zealand had a mammogram when she was 40 something cos their programme starts earlier. She had breast conservation, did not die from secondary or primary breast cancer, but died from ovarian cancer aged 69, during covid lockdown. So sad…Seagulls
Whilst routine 3 yearly screening mammograms stop at 70, when we reach 71 we can request to have one by contacting our local breast screening service.
My routine screening mammogram picked mine up. I was 55. No lumps, puckered skin, no outward signs of cancer, however in the months before I thought there was something wrong. My sixth sense was right. x
Go by your gut - that was more reliable than a mammogram in this instance.
I only have one bosom to check now. So half the work now - in theory.
Being the relentless researcher I am I found out you can have a local recurrence in a diep recon - as they can never cut out every breast cell during mastectomy surgery.
I seem to remember there was once a trial of breast checking v mammograms and neither method was brilliant.
Checking regularly found more cancers but not the fast growing kind that pop up unexpectedly. Those are the most likely to kill us I imagine.
I wish I was born a boy but boys do (rarely) get breast cancer. We girls don’t get prostate cancer - no equal opps there.
I also have dense breasts and a mammogram 22 months prior to finding a breast lump missed any developing breast cancer. I found the lump and by then it was 25mm and in 2 lymph nodes so I don’t have confidence in mammograms. I plan to pay for a breast mri in between 3 yearly mammograms, although more expensive if paying I might as well go for a more accurate tool. I have been told after 70 I can still request 3 yearly mammograms on the NHS.
I have to say I worry more about distant recurrence than I do about a new cancer developing .
Yes dense breast tissue is annoying but it does become less dense as you get older. I was grade 1 the first time but had a very rare kind of cancer so I worried my self sick for a few years as everyone I read about died within 7 years.
It was a waste of time as the next cancer I had in the same breast was 19 years later and a bog standard one (I had breast conservation the first time).
So why waste time worrying I asked myself. It made me more aware that life is short and you are a long time dead.
So do it NOW
I am now 70 so the older you are the more you need to get going fast
I was wrong about the age - I knew the biggest risks were female and over 50 but I thought the peak was earlier . It does start to fall at 70 though according that graph on the link you sent . I think that there needs to be something better to help diagnose younger women or those with dense breast tissue - I’m sorry about the friends you lost back then . I never said self - examination wasn’t important because it is but lots of us wouldn’t have an early diagnosis without the routine mammogram . If a Breast Care Nurse who examines breasts day in and day out couldn’t feel anything there was not a hope in hell that myself or my friend could have found anything and neither of us had any external changes. I know there are women not going for their routine mammograms for various reasons - either they’re scared or it’s not convenient / they forget or they think they would know if something was wrong but the truth is that you don’t always.
Surely both are important? My BC was discovered by a routine mammo. The IDC was small, non-palpable and the radiologist said many rude words trying to find it during biopsy. It was 9mm but on extraction, 14mm as some DCIS was involved. Personally that seemed quite sizeable to me but I have learned since that it’s not. I have also learned that I do not have dense boobs, between A & B on the BIRADS scale. Was told by another radiologist that she was surprised I’d had breast cancer because they were so not-dense. Not sure where I’d be now had I not religiously turned up for the mammograms but I was just “lucky” it was ductal I guess. I have recently turned 70, which I’m well aware is a red flag, but have elected, with the agreement of the head oncologist, to stop Letrozole. I have two more annual mammos planned, after that I shall ask for elective scans on the NHS which I have been assured is possible. Having said all that, I agree that the onus is on me to check, through visual and tactile methods, to try and nip things in the bud, especially during the years in which I won’t have a mammogram. So, yeah, both are very important for ductal, aren’t they?