Hello again @Geeps . I am doing quite well thank you and enjoyed another fun day on Centre Court at Wimbledon yesterday.
Yes, I do think your understanding of what Predict scores mean with regard to risk is the right one but there could be other explanations, an example of which I mentioned further up the thread but won’t bother going in to all that again. I have always understood Predict to refer to survival which is why it refers to deaths from metastatic cancer and deaths from all other causes. The salient point being, in my opinion, how many deaths there are from metastatic cancer in my subset of the data. It has gone down in this new version, which is encouraging. How the percentage equates to actual numbers of people is not clear, though. If it is in the hundreds, which surely it must be across all age groups with around 27.5k women in the Uk developing Er+ BC each year, or potentially thousands, then I can see why individuals would take every available measure to prevent the growth of stray cells at an indeterminate point in the future. I read testimony from those who are implacably against endocrine treatment and from those who are equally trenchant in favour of it. I’m a reed in the wind, not sure what to do, so have a little break then panic due to someone’s story I’ve read and scrabble back in to it. I have my second annual mammogram in August and if all clear, I will ask to have another conversation with the oncologist to try to understand the value of it for me but I don’t expect to hear anything I haven’t already heard. The next milestone will be in January 2025 when I have the next DEXA scan. The first scan showed no sign of osteopenia/osteoporosis at all so if there is in January, it would make up my mind. I suspect that this is a subject we’ll all
continue to mull over during the next few years.
I had an oncotype ( didn’t qualify on NHS but insurance paid - low risk on Predict). . Showed a 5% chance if recurrence , if I take AIs for 5 years .
I was on a low dose of HRT when diagnosed . DEXA also showed mild osteopenia ( I have always run and lifted weights ) but have an autoimmune disease . So , I’m going to see how it goes on AIs, which I can live with on Amarox brand . I’m only 4 months in .
Oh I absolutely agree with you!
And that message to the GP that you were making a fuss is appalling!! With people like that on your side, who needs enemies?! I’d have been fuming!!
That lady surgeon who got BC and wrote a book, said that doctors never read forums and that perhaps they should! Judging by the length of this thread there are a lot of confused, worried and suffering women out there. I keep hearing ‘Ah but most people are OK and don’t need to post!’
Really? And there are enough who ARE posting to show that there are live and ongoing issues that could be explained a lot better.
I sometimes got the impression that I was being told stuff on a ‘need to know’ basis. Not told too much to avoid worry? I can see that point, and it must be difficult given there’s so little time available and we don’t get to form any sort of relationship with our doctors, but perhaps we’re getting a ‘one size fits all’ kind of standard approach which is designed to keep the conveyer belt moving. My friend in the US gets to see the same doctor and consultant every time and they get to know each other. Bliss! Can you imagine!
Baseline for the NHS is: save money by avoiding few hundred operations every year by medicating thousands of women with a relatively cheap drug. That’s why NICE approves it - it’s a cost effective approach (And relatively cheap side-effect drugs)
Trouble is, the patient is not given enough time and/or properly brought into the decision making, - we’re a superstitious species and find it hard to be rational about our chances/choices. Cold percentages frighten and befuddle us!
(And it doesn’t matter to NICE that some women suffer side-effects - not their remit!)
With an insurance based system, is it different? I don’t know - but I DO know they allow more time for you to understand more about it all!
I don’t now fret about it all - although like you, I feel strongly about it. I’ve made my decision and this morning I was feeling grateful for not having any creaky joints at 69 when I was slithering down a steep hill in pursuit of sheep!
I do though, like to check in occasionally with my friends here!
I wish you every good bit of luck going and don’t take any more s…t - you deserve to get your proper grown-up discussion!
Check out Menopause and Cancer podcast . Episode 105 is an interview with a medical oncologist . She says that she had to treat 100 women for only a few to benefit BUT she doesn’t know which few will .
The flip side of this is that , before tamoxifen and then AIs, deaths from breast cancer were much higher .
Are you actually at Wimbledon or enjoying it from a comfy chair??! I’ve never had the patience to watch for long and anyway, I always want to root for the losing side because I feel sorry for them!
As for numbers, I think the total number of women is irrelevant, it’s just the number out of 100 that matters - 1 in 100, or 50 per 100 or 80 per 100 etc etc. That’s what brings it down to an imaginable level of risk. For example, a 50% chance is an evens chance whatever the population of the country you’re living in - whether there are 10,000, or 50,000 or 500,000 women out there. But of course, the more thousands of women’s data that’s used, the more reliable the percentages are.
Looking at it another way, If you had some kind of test that said you personally had a .01% or a scary 90% chance of getting an incredibly rare condition that only 50 people had in the country, it being so rare doesn’t affect your given percentage risk - it’s still .01% or that scary 90%!
I hope you get some more satisfactory answers to your questions from your doctors - it’s good but also difficult to have choices!!
I have taken a step back from thinking about it all as much as I did. I’ve made my decision. I know it’s easier said than done! I’m fit at the moment and appreciating every minute of it! I guess that’s a positive outcome - appreciating the mundane that we used to take for granted!?
Wishing you (and ALL of us!) the the very best, as always…
Re the being told things on a " need to know basis " I’m quite sure that happens a lot . It hasn’t happened to me with BC but only because it happened to me previously with my retinal vein occlusion . It took 3 months and me having the courage to ask directly for one of the Drs. to have the courage to explain to me that even with treatment my vision wasn’t going to improve any further . I certainly wasn’t going to let that happen again I remember being told " oh you don’t need to think about that right now " which I found absolutely astonishing but I insisted on finding out anyway . Well done @MistyK but I’m sorry you didn’t get your answers .
Oh yes! Actually being told…’You don’t need to think about that right now’…!! No, you may not NEED to think about it now far as they’re concerned, but of course you WILL think about it - think and worry about it in ignorance until they deem it necessary for you to know!!! Been there!!
OMG I’m ranting! I’m grateful for everything really!! But there are frustrations…
I hope your sight has been at least stabilised? X
Yes thank you It was pretty traumatic for a few months and quite debilitating . There are a few things I have to be careful with or can’t do anymore but in the whole I’ve been lucky . Xx
Thanks, Geeps. Always good to hear from people who’ve been in the same boat. Venting now and again is good for us in its own right.
I have to cycle my ‘priority of the month’ through non-closure of post- breast cancer concerns, diabetes type 2, and lymphoedema. Currently spending almost every waking moment in the kitchen creating the very labour-intensive recipes of my health guru Michael Mosley (may he rest in peace) on his 8-week blood sugar diet
Sometimes I curse the sheep when the weather’s bad and the gates are heavy and fall off their hinges (something that happens more often than you might think except for people like Jeremy Clarkson who can afford new gates and fancy equipment!!) But I’d miss my lambs - sometimes I feel like Bo Peep…
I’m sorry to hear you have lymphedema - another thing I feel they don’t warn you about enough. It was an ex nurse work colleague who explained it to me before surgery. It was in all the leaflets they give you of course, but just mixed in with everything else. It’s something that warrants a proper discussion face to face beforehand.
I had chording after surgery which terrified me as I hadn’t even heard of it - not serious of course and maybe one of those things ‘ “not to worry me about beforehand”? But I wasn’t to know, and me describing it and a nurse trying to describe how to deal with it over the phone is almost funny now that it’s over. She begrudgingly finally said I could go in to see her but it was an offer so unwilling I didn’t want to go. I went to the district nurse - who had never seen it, so I resorted to an Australian BC physio podcast!! Which is very good incidentally.
Thinking of your unresolved non-closure issues - Have you done one of those ‘moving on’ courses? I wonder if they help. Or Maggie’s BC charity? That’s supposed to be very good? Worth travelling to if there isn’t one near you? I’m a great believer in face to face rather than phone, but sometimes a phone chat helps. I’ve been told that Worcester hospital has a drop-in cancer centre for anyone in its reception area. What a great idea. I haven’t found if that’s definitely for people out of county too though. Hereford has/had a drop-in for their own patients…but over the border in Wales, my hospital doesn’t offer that service! A new super cancer centre is being built in S Wales where that might happen but it’s b… miles away from me!! Please forgive me if you’ve already done all this stuff.
In the end, for me, once I’d understood that my prognosis without the nasty drug is good, and that the unlikely more than likely recurrence doesn’t mean instant death, then the present mobility and quality of life at 69 outweighs the small ‘maybes’ of the future. I’d love to have some certainties but we never can!
So, we can be armed with statistics and advice… but we’re wasting our time looking for certainties!!
I have more or less stopped thinking about it now, in order to keep sane! Let’s say it’s firmly at the very BACK of my mind rather than the forefront.
I too, love Dr Moseley’s tips and good luck with the diabetes. It’s amazing what we can do with new knowledge about diet and exercise! X
Yes, Geeps, cording was a pain for me too, both sides (although I was warned, albeit in passing) but luckily not for very long. The prescribed exercises kicked it into touch pretty promptly (2-3 weeks?). As you say, plenty of videos online demonstrating these. Bless the peeps who bother to put them up; so reassuring to be able to see how to get it right.
Thank you for the pointers; I do know of (but haven’t got around to ) the Moving On courses and Maggie’s (one near The Royal Marsden in Sutton which I keep meaning to trek out to, as I’m hoping I can get to see someone at that hospital). Absolutely no need to apologise as all info posted here is useful to others too.
Thanks for your good wishes; may we both be lucky, and all power to your elbow (knees, ankles, hips, shoulders). Farming’s a tough life. x
dear Geeps thank you for thinking of me. i think you are amazing doing all your farming whilectrying to recover from breast cancer and knowing that Wales is treated differently from just over the border. It’s not fair. The NHS cancer care is better in London than elsewhere as the teaching hospitals are mainly there despite there being proportionately more younger people. Well that’s how I remember it from living there from 1977 to 2014 when I upped sticks for Hastings
You flatter me - My life isn’t so hard! I was lucky to be diagnosed so early - at least Wales has got their regular mobile screening buses right!
Having lots of other things to think about is good and I have made a conscious decision to put BC as much as possible out of my mind (I catch up on here occasionally because there are nice people who have had similar experiences!) As we have no arable any more, there are quiet times on the farm so a few hours a week in a Hay bookshop keep my mind busy on interesting things - all good for mental health. A lady complemented me on my new multi-coloured glasses today (my new positive me😂) and I felt good! I try to remember to speak compliment to others now too, instead of just thinking them!
Of course, a BC diagnosis is never forgotten and always lurking in the back of my mind in that fear of recurrence, but so far I have sure been made to count my blessings and not be so complacent!
I hope you are doing well?x
hi, just signed up and saw your post. Newby. I am HR & PR Pos & HER2 Negative like you. State 1b Luminal Type A Cancer. I did mammaprint. 0.304. I am on Lexatrole by TEVA. Surgery was May 29, 2024 for a small tumor. 1 lymph node pos and 1 negative. (two lit up during surgery). Margins clear.
Age 62. I never heard of the Signatera Natura test? I went to KU Cancer center and spoke to Dr. O’Day if there was a blood test and she said no. So I am curious about that. Have you done any research about natural methods by the natural doctors such as Envita, Forsyth in CA, Buzinski in HOuston Texas with Peptides? What are your thoughts? I just started radiation Day 2 was today. I am not sure if this is even the right thing to do? Did you read Suzanne Sommers books? Jane in Missouri
I’m 76 and it’s good to read your comment. I had a lumpectomy, excision & 5 radiotherapy treatments, prescribed Tamoxifen which I won’t take. I am fit & healthy & do worry about getting secondary cancer, if it was the same as the first time & surgery would sort it out I wouldn’t worry at all. I can’t take something for 5 years which might make my quality of life lessen or do other things I don’t know about until it’s too late. So, for me at 76 I’ve gone for quality of life. I’ve got my 3 month check up appointment with my oncologist next week & will be telling her I’ve decided not to take the Tamoxifen. I hope we stay fit & well.
Hi cathy2023, I’m just trawling through this post & found your comment. I am 76 same as you except mine was grade 2. I was prescribed Tamoxifen 3 months ago, but have not taken it. After being on this website I don’t feel I have had any information, other than pamphlets, nothing about my own personal risks. I have my follow up appointment with my oncologist on the 21st when I’ll be telling her I did not start the Tamoxifen because my instinct told me not to & because I know nothing about my own personal risk of a recurrence. Do you suffer anxiety about a recurrence or secondary cancer?
From my research and after speaking to my oncologist I found that the potential risk of recurrence for me, after surgery and radio was around 1%. The anastrozole would reduce that 1% by a further 30 to 60%.
I had such an awful menopause I simply would rather die than go through worsening symptoms again. I do not have kids. It’s a risk I feel prepared to take. I have recently received my first post diagnosis ‘all clear’ mammogram result and I do feel more at ease.
Initially I felt a commitment to taking care of myself with good diet, exercise, sleep and meditation would give me the best chance to deal with whatever came my way.
I have really struggled with fatigue and have not been at all consistent with my efforts. I continue to recommit to my health goals, and after reorganising my shifts at work I feel more prepared to move forward again.
What I would suggest to you is not to base your decision on a gut feeling, but on research and personal enquiry. To speak to your oncologist about your risk of recurrence with and without the endocrine drug. Try to connect with your own power and resilience. All the statistics on recurrence are just that, statistics! If we happen to be the 1 in 100 or 600 or whatever then that’s just bad luck, and all the drugs in the world won’t change that. My personal view is taking the best care of our physical, emotional and spiritual self could increase our luck a bit. It might also increase our peace of mind, knowing we are honouring our bodies.
I did not hate my cancer, nor did I feel I wanted to fight it in a head-on combat. There seems to be much in the media about the personal battle against cancer. In my heart I absolutely want to support my body in healing and for me this means self love, forgiveness and gratitude. I’m far from where I would like to be with all of this but I get glimpses and continually reset my way and strive for improvement.
Anxiety is fear of the future. Yes I feel anxious sometimes, but if I am doing what I can to honour my body the anxiety goes.
What helps me is- having a project, spending time with uplifting people, being in nature and a bit of structure to my days. Saying no when I need a break and saying yes to new and interesting experiences.
I wish you the very best with your journey. It would be good to hear how you get on.
With love x
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I’m grateful for everything really!!
But there are frustrations…
x