This is such an interesting chain. I have just had surgery but am very fortunate to need no further treatment except Letrizole. But my predict score shows only tiny benefit and even 15 years is only 1%. I think I’m better looking after my fitness and diet than taking a pill with minimal benefit with side effects that might reduce the things I do to keep me healthy! But then I’ve seen people saying Predict prediction aren’t that useful - not sure where to go now…any thoughts?
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Hello and nice to hear from you.
You don’t say your age and family circumstances, both of which play a big part in this sort of decision making. I think I would probably try the Letrozole because there are quite a few people out there who don’t seem to have any side effects. You can then gauge the best way forward.
Wishing you luck
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Good to hear there are quite a few people without side effects. Thanks for the reply 
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I don’t know how you can possibly know how you will feel if/when breast cancer comes back. At my age 50% of people are supposed to be likely to develop some kind of cancer. That’s cos at 68 I have a lifespan of approx 20 years according to actuarial tables predicting age at death by your age now. So I’m not looking long term. I smoked for a while so lung cancer is a distinct possibility. I could have pancreatic cancer which someone I know died of, similarly ovarian cancer or skin cancer. Two friends of mine had these cancers, one died the other is still alive with lymphoedema in her leg (from melanoma op). Life is more at risk the older you are. So when nurses ask this question they really can’t know the answer any more than we can. A 3% reduction in risk isn’t that great, and the biggest killers of women are heart disease and Alzheimer’s now. I could get either of these or both of them as my 96.75 year old mum has. She didn’t look well when I saw her in hospital a few days ago. She has not had breast cancer. Cheers Seagulls
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Hi everyone, I am in the same position. Back with consultant tomorrow to discuss Letrozole. First had bc 31 years ago, at 36. Had lumpectomy, radiotherapy and Tamoxifen which I hated so came off that after 6 months. It was so different in those days, I asked my consultant what my survival rate with Tamoxifen and without, 82.5% with 82% without, I remember being over the moon because I could come off the dreaded drug and risk just 1/2% of my survival rate! Now aged 68, just had a mastectomy due to multifocal Tumours, same breast and in lower inner quadrant. Oncotype test came back less than 1 so no chemo but Letrozle? I pretty much decided to take my chances again as quality of life over quanity. However being a digger, I have come across research that suggests tumours in the inner lower quadrant have much worse survival outcomes, and generally have highly favourable Pathology results. Lower inner quadrant tumours often spread through the inter mammary nodes which are not tested. But, there is also research that doesn’t agree? Also new research has suggested that that multifocal tumours are not measured right as they only take the measurements of the largest tumour which is also causing ripples. My tumours all over 2cm covering diameter of 6.4cm but size of tumour only registered on the largest? Before mastectomy grade 2, 4.1cm. Post mastectomy 2.4cm despite another 4cm which doesn’t exist lol! Anyway sorry for rambling, it’s late, cant sleep decisions to make tomorrow. Perhaps I am just going to deep with this, but, and is the trouble for all of us, there is always a but!
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I’m with you about multi focal tumours. I have grade 3 idc/dcis which appeared to be growing in a star shape, with the largest 25mm, overall diameter post mastectomy was 53mm. Yet they make decisions based on the largest.
Like most things there is research saying one thing, then other research says the opposite. We just have to put ourselves in the medical professionals’ hands and trust that they will do the right thing for us as individuals.
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Those people wearing masks and following restrictions probably didn’t want to die of Covid or infect vulnerable people. I know no one told me that lockdowns would mean I’d live forever just that lockdowns and mitigation techniques would mean fewer would suffer and die. I’m all for that. Beyond that, but related, we do have to make decisions that have consequences. Some of those consequences affect just us and some have consequences for others. You are so right that it is personal and individual and judging people for the decisions they make regarding their health is not right and all we can do is accept responsibility for our own actions. It is so hard because there are no guarantees and we each have to decide who and what we value most and make our decisions based on those values. Personally, I hate the Letrozole side effects and am contemplating stopping 2.5 years in.
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I get your dilemma. But it might be worth giving Letrozole a try as some people have barely noticeable side effects or find they can stand the downsides rather better than I did. It didn’t work for me because I hated feeling below par all the time but feel free to call me a wimp.
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This isn’t the forum for Covid but I felt I must respond to your comment.
Look I don’t mind admitting how strongly opposed I was to Lockdowns. I feel they have reduced our country to a shadow of its former self and were cruel and utterly inhumane. Any ‘cure’ that repeatedly demonstrates that it simply doesn’t work but lays waste to normal human interaction in my book should never be considered let alone sanctioned. However, that does NOT mean I had any problem with people who preferred to cut themselves off from life or spend their time behind a mask. Not my choice but I would campaign for peoples rights to do what they feel best for themselves and their families. I should also add that I was genuinely surprised that so many elderly people (I am one) felt it appropriate that the country should plunge itself into unfathomable debt and be downright cruel to children and the sick, in order that they might live a little longer. It was shocking to realise that so many cared only for their own longevity rather than the future of the next generation. Where I had a problem was a government proscribing behaviour as if people were unable to make informed choices and act accordingly.
As for lockdowns supposedly meaning fewer would suffer, ALL the evidence is to the contrary regarding Covid and the collateral damage of those denied urgent medical treatment for non-Covid related conditions way surpasses those who died ‘with’ Covid. I should know, I was one of them. If I had not used my life savings to pay for surgery and chemo, I would be dead. So, yes, I do feel short-changed that my life was considered expendable so that others (overwhelmingly 82+ and with other underlying health conditions) might enjoy a few more months.
It was an appalling way to run a country and I will vote for the next Party that promises NEVER EVER to inflict such unjustified and authoritarian rules.
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I’m sorry I offended you. That was not my intention. Be well.
You absolutely didn’t offend me. I was just airing on a topic that consumes me with rage. I wish you well and keep posting - most people don’t bark like me!
All the best
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Dear laneycass and everyone who has contributed thus far, just wanted to share my views/experience as I have been prescribed biphosphonate, and letrozole for 10 years and have been debating what to do as quality of life is more important to me than quantity. I am a 66 yr old widow with no children and no dependents. I had 24mm IDC er 8/8, PR 0, HER2+. I only had EC chemo and refused Paclitaxol as couldn’t risk peripheral neuropathy. Six weeks ago I had mastectomy with no reconstruction. Re Letrozole I have agreed to try it and will take every other day as the drug leaflet (SmPC) says that 0.5mg reduces oestrogen by 78% the same reduction achieved by 2.5mg. I’ve said that if the side effects are intolerable then I will stop taking it but I recognise that I might be one of those people who have bad symptoms at the start which may reduce so will give it about 4 months. As for biphosphonates I have agreed to start but only on a weekly tablet and not a six monthly infusion as this is less harsh on the body. I asked for certain scans and blood tests as pre-requisites for starting everything. As for Predict I found that it was useless in my case because my EC chemo was ineffective and I refused the Paclitaxol, It is not based on cases where chemo is given before surgery, It takes no account of co-morbidities (I have Type 1 diabetes), There is no way of knowing whether deaths from other causes could have been attributed to damage caused by previous cancer treatments. I therefore used other sources and, having been told I was high risk of recurrence, used 20% as my risk factor. Of course no-one can really know as every ‘body’ is different. It’s been hard work but I have finally convinced my oncologist that quality of life is my goal here and we need to work together to achieve this. She is also very aware that I understand my risk factors and potential impact of non-adherence to the ‘standard’ treatment. There are certainly no easy decisions here and I wish everyone well with whatever they decide - just think carefully and do what is right for you. Love Tulip xxx
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I am somebody who was very careful during the pandemic due to health problems but I was never denied any treatment or access to healthcare under the NHS. I was redeployed due to my risk and my occupation working in a school. I was diagnosed with a heart issue in November 2020.
I’m sorry you were denied treatment, this was not my experience the NHS called me in within 2 weeks of an abnormal ECG recorded at the GP.
I would love to know what evidence you have to say lockdowns don’t work? The Covid enquiry is showing so much evidence that we were too late and that BJ wanted 3M vulnerable to die as they were old or ill anyway.
I still continue to be careful wearing FFP2 respirator mask as I’m having chemo and target treatment for a year and will be immune compromised for a year. I’m 54 and have a life to live and hopefully many more after my treatment finishes. I have elderly in-laws in their 80s who feel very different as they have lived their life. But we need to be considerate to everyone and protect our vulnerable.
I just felt I would put my point across after your comments.
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Totally agree. I continue to be cautious as I’m having chemo and target treatment for a year that puts me at risk. I also have other underlying health conditions.
Just wanted to wish you well and hope things are good for you. You are doing what works for you, we just have different views of what life should be about.
I’m not going to clog up a Breast Cancer website with arguments about Covid. The evidence is legion that simply stopping society and hoping the virus would go away simply didn’t work - and that’s presuming that you don’t mind an impoverished country, disrupted education, inhumanity between families and friends, an authoritarian state that made it a criminal offence to hug your grandma and the creation of a workshy culture. A virus that overwhelmingly affects only those in late old age should not have resulted in closing society. Like yourself, anybody in the vulnerable category could and should have taken precautions and let the rest of the world continue. Indeed, much of it did, otherwise we would have just starved.
As for the NHS, just because you got your treatment, should not mean you are unaware of just how badly so many sick people were treated - or rather weren’t treated. The two people diagnosed alongside of me are both dead now because they lacked the funds to go private.
Good wishes to you but that’s it from me. Anything to do with Lockdown sends my blood pressure into orbit.
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Clearly you are doing exactly the right thing. But that does not mean the world should be closed down.
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Hi Tulil29
thanks for your post with interesting info, I had heard that you can take Letrozole every other day. I will ask about that, it may be that it is as effective but whether or not it stops side effects would be very individual. Certainly worth a try, I will discuss with my oncologist along with the pros and cons of Bisphosphonate as a tablet rather than an infusion. What do you mean by " drug leaflet (SmPC)" ? Just for info, I asked about the side effects calming down and the oncologist suggested giving it 6 months. The thing is, for me the side effects are tolerable but I can’t think why I should tolerate them for such minimal potential benefit. Plus, when we are talking about tolerating the daily discomfort and inconvenience we aren’t even factoring in the risk of osteoporosis (and for bisphosphonates JNC and spontaneous fractures). For me, quantifying risk/benefit in order to make a judgement call is just impossible!!
Keep on keeping on, Elaine xx
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Dear Elaine, If you visit the website www.medicines.org.uk one can download the patient information leaflet (PIL) and/or the information for Health Professionals (SmPC) for any drug licensed for use in the UK. Patients often prefer the 6 monthly infusion of biphosphonates because it is less hassle to go into hospital 6 times over 3 years rather than take a tablet once a week. There are many, mostly elderly folk, in the UK taking these alendronic acid tablets to prevent fractures (my late Mum being one of them) and they are usually very well tolerated. It was my dentist who warned me off the infusions but the oncologist was surprised at my choice. Incidentally I cannot swallow tablets but researched and found that a water soluble version is available. My oncologist, as would be expected, is against taking Letrozole every other day as that is the ‘standard treatment’ protocol but for patients with renal disease this is the recommendation. When I showed her the leaflet she pointed out that it says when tested on ‘healthy menopausal women’ and not in women who have cancer. I did point out that she had told me a few weeks earlier that my post mastectomy pathology results and scans enabled her to say that I no longer had cancer but she just ignored that! I also consulted the oncology pharmacist who said he could see why I would want to take every other day but it would be at my own risk. He also pointed out that if I was to get side effects they would take longer to show up. What I might do is take it every day to start with and then reduce to every other day - especially as I will have to chew them! One benefit I am hoping for is that the Letrozole will shrink my massive uterine fibroid so preventing the need for surgery. Anyway I’m going to try it and see. Re risks you can ask your surgeon what the risk of recurrence is in your particular breast unit as these are stats which have to be recorded. Also whether you are considered High, Medium, or Low risk of recurrence. I was told I am high because although node negative I had lymphovascular invasion, am HER2 positive, and did not have Paclitaxol or Phesgo. I was also told that the cancer is more likely to come back in the first two years. I would say don’t rely on Predict but gather as much info from other sources. It’s difficult but all depends on the diagnosis/pathology of each individual patient. Tulip x ( a former risk manager and a highly risk averse person!!!)
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I stopped taking Letrozole 2 weeks ago after being on it for 14 months. The side effects were unbearable and took it upon myself to stop it. Feeling almost like my old self again I Contacted my BCN who advised she will speak to consultant and oncologist who may prescribe something else or may not need to continue with anything as tumour was very small. I wish I had been told this before being prescribed this awful drug, I would definitely not have taken it. I am not willing to suffer another 4 years of these side effects and to enjoy my life and holidays.
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Ah thanks!! I too am very risk averse and I don’t trust what I am told just because of who is telling me it (eg. consultant). My BCN said I was low risk but they have prescribed Zoledronic acid infusion which, according to NICE guidelines, should only be ‘considered’ where there is a high risk of recurrence. I am building a list of questions for my next oncology appointment, helped by you and others. Sadly, I am not confident I will get many answers!
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