I should think long and hard before having chemo.it depends on the drugs they want to give you.ive had 4 cycles of docetaxel and its horrid stuff.
Hi, the V3 has not yet been approved for use on NHS to my understanding.
Try V2 to see what you get from that.
Good luck,
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But V3 is based on more data and much more up to date. I am a statistician by occupation and I trust the analysis behind the tool. NICE guidelines take forever to update, but it makes sense to use V3 to base decisions on as opposed to V2 which is out of date now.
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Yes I agree. Such an important decision to make.
They want me to do 6 sessions The regime they are suggesting something called EC-T chemotherapy, it is a combination of 3 chemotherapy drugs,
E – epirubicin
C – cyclophosphamide
T – [docetaxel].
I wouldn’t hesitate to agree if the stats came out in excess of 5% but the new data suggests much lower.
I’ll get a second opinion from a different oncologist that can answer all my questions and see where I get to.
X
Yes i had 4 cycles of docetaxel and found it hard going as i had a lot of side effects.
I had my first cycle of ec nearly two weeks ago still feeling fatigued they have to monitor my heart as this drug can be hard on it so had an ecg and having a heart echo done.
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When considering predict, given your young age, the 15 year survival is the figure to look at. However, even then, it has its limitations, as it doesn’t go beyond 15 years - which most people around 50 would hope to double those years really. Also, its a measure of mortality, not recurance and chemo prevents spread. The progress, recent times, that has been made, has resulted in more women living with metastatic cancers for a long time, but anyone would hope to avoid it progressing to that if possible. Unfortunately, there are no measures or predictions of recurance as there are too many individual variables.
I’m premenopausal, despite being 53, if I had any cells in 1 lymph node I’d be insisting on chemo to reduce likelihood of recurance. By how much, nobody will ever know. It occurs to me that predict can only be based on data collected from what has already happened, so it would be the prior 15 years data, however, with treatment changes, those figures will change for the future 15 years, which are the years that matter most to us. Its a blunt tool, its the only thing we have that measures, but it’s also arrived at from past data, so limited in its ability to predict the next 10 or 15 years, despite its name ( perhaps it should be changed to ‘chances of death for people in the last 15 years’ - it’s less catchy though).
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I was premenopausal and had the oncotype test done. I didn’t have any nodes involved and my score was 18 so they gave me the choice to have chemo if I wanted. As I wanted to do everything I could to hopefully prevent a recurrence I did chemo. Seems like my body is defying me though as despite having chemo, doing radiotherapy and 5.5 months of hormone therapy I still had a recurrence. 
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I just posted on a different thread about the RxPonder trial, which shows 5% benefit for node positive premenopausal women Oncotype test low risk but premenopausal - #2 by flower5
I was pre menopausal with a similar size grade 2 tumour and only 1 lymph node involved amd I was told that Chemo would be of benefit. I went with the professionals advice because I wanted to give myself the best chance. I wasnt exactly relishing chemo but its super important to note that not everyone reacts the same. Some people will tolerate chemo really well and others less so. Unfortunately its the negative experiences that tend to stand out.
Predict V3 isnt recommended for use at the moment and while there may be sound logic behind how it has been compiled the reluctance to launch it as the go to tool does suggest to me that there are still enough concerns. Otherwise it would have been adopted. I personally can’t reconcile how my 15 year prognosis has leapt from 78% to apparently over 90%. I mean, it’s amazing if true but it does seem a too good to be true leap so maybe there is some nuance missing in the new model?
Theres more info to put in on the v3, but I do wonder, if some of details asked for, are just because the data is easy to collect rather than significant. It strikes me as odd that risk comes out different on the basis of if the tumour was spotted by mammogram, or found yourself. Seemingly better via mammogram. Seems odd that if you are a person who checks themself and spots it early, its any better for a mammogram to spot the same size tumour thats the same grade and stage. It doesn’t make sense. How is it relevant? My tumour was less obvious on mammogram, slow growing allegedly, so likely there on previous mammogram, just lucky it was high up where there is less tissue so easier to feel. But if I’d waited till the following month when next mammo was due, and it got spotted by it, the figures would be given as better, despite a month going by, plus another month waiting for the callback, whereas I had my biopsy results and a plan about 2 months or so earlier than if a machine found it the month after. Glad I saw my GP the next day after finding it.
I also have a letter stating that the reason I was not offered chemo was because predict gave it a 1.9 % improvement which wasn’t deemed big enough. So that suggest that yes, oncologists do use predict to decide on treatment plans - though I certainly hope it’s really more individual and nuanced than that.
Hi I was diagnosed aged 40, 11 years ago and had the oncotype test. I had 17mm tumour er+ her2 negative but no lymph node involvement. I was told that the tumour was 99% positive to estrogen and my score came back as 16 oncologist said chemo wouldn’t benefit so took tamoxifen for the following ten years
I had clear margins and no node involvement, Stage 2A, and was post-menopausal. I also had intraoperative radiation following the surgery. We thought that was all I’d need, but after my Oncotype results came back, my score was 43 - high risk for recurrence. My oncologist was surprised as was I. So, I went in for chemo - 4 rounds.
Hello - re Oncotype eligibility - NICE (the National Institute for Health and Care Excellence) which issues recommendations for treatment and care of people within NHS England and Wales approved use of Oncotype DX in May 2024 for post-menopausal node-positive patients with 1 to 3 positive nodes as the cutoff.
Here is a link to the announcement. I am in Scotland where different rules apply, so I have to pay privately for the test (£3K) even though I would be eligible in England or Wales. Perhaps discuss eligibility with whomever provides a second opinion? From what I read, in general (and it’s always best to get specific personal advice of course), there seems to be more chemo benefit for pre-menopausal patients, though less than 3% benefit may be worth a discussion of its merits in your own case. It’s a very hard time having to weigh up all the factors and feel confident that you’re getting the best treatment advice for you as an individual. Wishing you all the best. I’m currently waiting for results of Oncotype DX and trying to prepare mentally for whatever eventuality arises. Take care of yourself and I hope your second opinion doctor has better poeple skills - it’s so important! xx
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Hi there,
I had this test and am now in week 12 of chemotherapy. If you have any questions, and I can help at all… please let me know. I found decision to undergo treatment a really hard one and I went back for two more consultations to ask the many questions I had.
Take care,
Mags
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@roxie1 Interesting the rules are different here. I’m in Scotland was offered Oncotype testing (today!) I’m pre menopausal with a Grade 3 ER+ PR+ HER2- tumour with no node involvement. The nurse seemed a little unsure tbh. She mentioned chemo at first and I questioned it (was sure I’d be straight to rads, especially given tumour was actually smaller than they’d estimated at scans) When she checked she said I was right and my next step is supposed to be radio but I guess I’ll know for sure when the test results come back.
Best wishes for your results and treatment.
It would be wonderful if you can finish treatment earlier than expected and with fewer side effects.
The rules in NHS Scotland cover funding for Oncotype DX for node negative patients but not for node positive patients unfortunately. It was a ruling informed by the opinion of the Scottish Health Technologies Group.
By contrast, since May 2024, node positive patients (one to three positive nodes is the limit) can access the Oncotype DX test for free according to recommendations set by NICE which apply in NHS England and Wales but not in Scotland - so alas it is not a level playing field across the UK.
It’s costing me just over £3,000 including VAT.
Take care x
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In general, I think oncotesting is done for patients where its not obvious whether they should have chemo or not. Pemenopausal with any lymph node involvement, would usually be enough info to stear to chemo, so no test needed. Some post menopause cancers can be slower growing types, so if 1 or 2 lymph nodes are involved then ALND might be enoughb ut they need to know for who this could be the case, so the oncotype DX is useful.
If premenopausal, with 0 LN involvement, a test is useful as without it, some would not be offered chemo who actually have a high risk. I was on the other side of the coin where a genomic test wasn’t done as I was perceived to be too low risk, also complicated by not being able to have oncotype DX, due to being her2 + ( I think there are other genomic tests in that case available). It probably does come down to cost too, they don’t want to be wasting money when the treatment path is already obvious, which is understandable.
I was 53 and premenopausal, ER+, HER2-, 100mm tumour, 1 node. Chemo was recommended as I was perceived to be at high risk of recurrence. My Predict score showed an 9% benefit from chemo.
The eligibility for the Oncotype test was:
- newly diagnosed with early stage invasive breast cancer,
- have cancer cells that are ER+,
- have cancer cells that are HER2-negative,
- are either lymph node negative, 1-3 lymph node positive or have micrometastases in the lymph nodes
- have a large tumour size
I paid for my Oncotype test and it showed a 2.8% CT benefit, so very different to Predict’s 9%. The caveat in the report was that for premenopausal women over 50, it is “not known whether the benefit observed with CT is due to CT alone, ovarian function suppression or a combination of the two.” My treatment plan also included ovarian suppression.
I decided to go ahead due to my age and if I had a recurrence, didn’t want to regret that I hadn’t thrown everything at the cancer. In the end, I had an anaphylactic reaction to the paclitaxel in the first session and it had to be discontinued!
Hiiiii.
I had tumours that spread in size, had all my lymph nodes removed as cancer in all but one. Post menopause. Had both tumours tested with Onco, low results but due to size of cancer spread, it left my oncologist with a negative opinion on the option of chemo as I am high risk of recurrance, said it will rid me for a short term & I needed a longer length treatment. Not sure if this helps. Hope you are ok x