Predict tool - is it ever used to agree treatment with onco?

[Seagulls]

I think it depends on working out your life expectancy with or without  breast cancer. If you are 67 as I am, and I am looking at whether I will be alive in 15 years time (the longest time interval Predict has) I will be 82 then if I survive that long.

But I could get all sorts of other conditions that could kill me off before 82 as it’s quite common for people to die aged over 70. The old idea was we live for three score years and ten, that is 70. If that is the case, I am near the time I should pop my clogs! From breast cancer or something else.

Seagulls

[Seagulls]

Well done for all the walking. I do loads as well plus I have joined a gym and am swimming now twice a week and doing some exercise classes and got an exercise programme now involving a lot of different machines which work on different muscle groups. But I am keen to get back to a sex life and that seems a bit more difficult with oestrogen reducing meds. 

Cheers

Seagulls

I am waiting for a phone call from my GP ref blood in urine test

[Susanmanchester]

I have been on Letrozole since August 2019 just had fourth clear mammogram. No side effects at all maybe slight joint pain to start but all fine now walk 20 miles a week eat well seriously - take it 

[Seagulls]

I just had another look at the predict tool and thought it might be worth looking at. The first time I did it, I think I put in 2 for the size of the tumour in cm, but it’s in millimetres so I should have put in 20.

It did look as if there are quite significant benefits in taking letrozole and biphosphonates for post menopausal women of my age i.e. 67, compared with surgery alone.

On the other hand the quality of the life you live may not be as good. Unfortunately being dead doesn’t give you a great quality of life either.

The juries out - that’s my latest prediction.

Seagulls

[Seagulls]

I was put off by the huge list of potential side effects but we shall see. The actual infusion was a doddle. I did feel tired and worried for a few days plus the twinging molars. But I am 67 so I have very old teeth. My dentist says they are fine. I think I made things worse for myself by changing my tooth brushing timetable. It’s best to clean your teeth as soon as you get up not after you eat, and clean them again last thing at night. You don’t want to take off your enamel by cleaning them without a nice layer of whatever builds up overnight and through the day. That’s my feeling now. I have also been madly flossing and sticking brushes in between and that does dislodge a lot of bits of nuts and yuck. So they do look good. But you definitely want to avoid cleaning them when the enamel is not at its strongest. American dental websites seem the best on cleaning and on when to do it. I trust them as English teeth are usually not of the finest…

[Tigress]

@Seagulls sounds deeply unpleasant.  I have my DEXA scan next week so am dreading them recommending I have bisphosphates.  Seeing the GP about VA tomorrow. There’s no bloody end to it, is there? 🤨

[Seagulls]

Dear tigress

shot of zeledronic acid had some side effects but I don’t know what the impact of these will be long term. I had some twinges in my molars over the week after. Now I wonder if I should ask my dentist to do some x ray photos to see if there’s any damage there. I am still getting these twinges now. I also found teeth cleaning a bind as USA advice is clean teeth an hour before eating whereas I have been cleaning my teeth after eating breakfast and after taking Adcal tablet in the evening as these tablets are full of sugar and I don’t want to chew them into my teeth and leave them there…

[Tigress]

Hi @Seagulls, I’ve read all of the Technical Data on the tool which still leaves me with the question, why does every result say “If death from breast cancer were excluded, n% would survive n years”?   Surely, to be useful, it should say “n% died of breast cancer and of those surviving n% would survive another [however many] years and n% would die of other causes”?  It’s pointless knowing the survival rate if you don’t know how large or small the numbers surviving are, surely.  

Chemo wasn’t even discussed with me so I’m guessing my grade wasn’t 3 and maybe not even have been 2, I just don’t know.  But I put in Grade 1 and then Grade 2 and the apparent benefit to me of hormone therapy of either is so negligible, I wonder why the conversation wasn’t had with me.  It’s only become relevant because of this awful VA brought about by Letrozole.  

Anyway, Predict seems to be sanctioned for use by the NHS, so, as per usual, I like to understand why and to know if it has been used F2F with anyone discussing their treatment.  If I can get some solution to the VA, I will continue with Letrozole even though I worry about my family history of both osteoporosis and dementia as the lack of oestrogen impacts both bone health and cognitive decline.  

How did your shot of Zoledronate go? 

[Seagulls]

I am not sure if you can put links on this site but let’s try

https://breast.predict.nhs.uk/tool 

How Predict works

The estimates that Predict produces are based on scientific studies that have been conducted into how effective breast cancer treatments are. We know from studies involving many thousands of women that the benefit from treatment is affected by the size and type of the cancer at diagnosis, whether the cancer has spread to involve lymph nodes, and whether or not the cancer expresses markers such as the oestrogen receptor (ER), HER2 and KI67. By analysing the results of these studies, statisticians are able to say how these aspects of the cancer are likely to affect average survival and how much benefit might be gained on average from different treatment options.

Predict has been tested to make sure that the estimates it produces are as accurate as they can be given current knowledge. Predict was originally developed using data from over 5000 women with breast cancer. Its predictions were then tested on data from another 23,000 women from around the world to make sure that they gave as good an estimate as possible.

Although Predict produces good estimates, it cannot say whether an individual patient will survive their cancer or not. It can only provide the average survival rate for people in the past of a similar age and with similar cancers.

The technical section has more detail on how Predict was developed and tested.

It does suggest using the tool in conjunction with your doctors. I am going to have a chat with my oncologist on 15 February over the phone, I wonder how I will transmit my scores. I know the grade of my cancer. It’s grade 2. I know the size of my tumour 2 cm (the most common size apparently). It’s spread to one lymph node although my pathology report goes on about the lymph node having metastasised due to the amount of breast cancer in it. It looked like a second breast cancer tumour in fact. So I think it may be difficult to apply the tool in some instances e.g. mine where I have intramammary lymph nodes. They aren’t very common unlike my bog standard tumour size and average grade.

A computer model which is programmed with information is likely to be less subject to bias than something which involves human intervention and judgement. So I am willing to give it close consideration.

A good predictive model also needs to be continually updated with new data. I have looked and have seen that the Predict model has been updated with a lot of new data over the years to  ensure it is still reliable.

[Seagulls]

I am trying to make head or tail of it myself. Last time I had breast cancer I worked out the main treatment that I had i.e. Surgery and radiotherapy was the biggest life saver. Taking tamoxifen for five years would have had a marginal effect. So I decided not to take tamoxifen for more than two months I think it was. That was about May 2004. I got new breast cancer diagnosis in June 2022. With a new primary. I am still alive. But the Predict model does seem to look fairly short term. Most of these models assume you are cured once you live for maybe ten years. At 48 that’s not that great. At 78 or 88 it might be fine…

Seagulls

[horselover]

morning tigress, 

I have looked at the predict tool , you really need to know your grade to get a more accurate score . The way I read it is for example - it tells you, you have a 90% of survival at 10 years with surgery alone . If you add hormone therapy and bone stengheners this may increase to 92 %. Of these remaining 8%, 6 will die of something else in 10 years meaning you have 2% risk of dying from breast cancer in 10 years? ( These are just numbers as an example ) and of course all our cancers are unique and our lifestyles are different too , 

i will be starting radiotherapy next too . Best wishes x

[Tigress]

I’m a bit confused by the Predict tool and would welcome being set straight.  

First off, I know the Predict tool is based on data and I also know that we are not statistics and we have no idea on which side of the line we as individuals will land in reality, however I have seen a lot of posts on here in which people refer to their Predict score so I assume it is being used in discussions with oncologists. 

I had a very basic conversation with my oncologist regarding treatment as, I felt, the rads and Letrozole for 5 years was a standard package for her to dish out.  I had no idea that the Predict tool existed until I saw it on here much later, so I downloaded it and had a look.  

I filled it in with the info I know and guessed at the stuff I don’t know (basically the grade and the Ki-67) and the gain on 5yrs of endocrine treatment was between 0.3% and 0.9% so there must be more to it than that otherwise why would someone like me bother?

I see the data is based on women who took Tamoxifen, who presumably are going to be younger than people who are on AIs - are we comparable?

It doesn’t include your Allred score, so would being 6/8 be a different outcome to being 8/8?

After each result it says “If death from BC is excluded, (eg) 83% survive and 17% would die of other causes”.  So if there were 200 people and 100 died of breast cancer, 83 people survive and 17 die of other causes, it still means 100 people die of BC.  Surely the point is to know how many die from BC or am I just reading it wrong? 

Has anyone actually used this tool in a conversation with their onco and made actual treatment decisions on their results? Sorry for being intensely thick if I have got hold of the wrong end of the stick on this.