Have you put your details into the predict tool for breast cancer that is online? That is where most people get their prognosis, and that is what oncologists use too. I spoke about not taking tamoxifen to my oncologist based on side effects I got vs survival improvement after 15 years. Though I do suspect they may have a more detailed version, or know what to put in precisely, we got similar results of less than 2%, so she told me ot was a fair and reasonable not to take it. It doesn’t give any chances of a reoccurrence, but it will give survival rates at 5, 10 and 15 years if you want to know.
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Just a caveat on the Predict tool - once you know, you can’t unknow. The results aren’t definite, it is called Predict after all, not Cast Iron Certainty, but, for some women, the results can do more harm than good. Having said that, I am definitely someone who would want to know but if you suspect a poor outcome, it should be approached with caution.
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Hi
Have you used the nhs predict website? Just be sure you want to…. But it gives percentages up to 15 years
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I’m so sorry to hear about the anxiety you’re experiencing @kittycat11. It’s completely understandable in the circumstances, fear of recurrence is something a lot of people here will identify with.
Please know that our nurses are here to support you - with clinical questions or for a chat. You can get in touch with them here on the forum on the Ask our Nurses your questions board or over the phone 0808 800 6000 which is open Monday to Friday 9am-4pm and 9am-1pm Saturday.
Sending our warmest,
Lucy
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I had the same grade as you, lymph node involvement etc but didn’t get full pathological response - just partial. Prognosis of 5 years. That was 10 years ago. I’m still here. It’s really hard not to ask for certainties in a world where there are none and it makes you feel a bit mad. I spent hours scouring predict looking for different outcomes - it’s just a tool and we are real people - sadly a few of us won’t survive but lots of us will. It’s true what they say, live every day, love those around you and say *** to cancer!
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It is so difficult for us but the science tells us that no one can predict. There are general stats but nothing specific for us and our own physiology. Doctors have science in their pockets and great medical experience to apply that science, but not a crystal ball.
That doesn’t help but it’s the reality. The Moving On course is good and tackles these concerns we have.
We all have an end date and having cancer doesn’t help with the exact timings. I have mets and know it could be whenever but right now I’m fit, working, having fun. Tomorrow might be different - the preverbal bus or cancer. Who knows. But I’m enjoying today.
Not sure any of that helps x
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Hi there. Stage 3, grade 3, big tumour with lymphnode involvement here as well. I know my prognosis is “poor”, meaning I have a high-risk of recurrence (and that’s all my oncologist will say). Yours is probably considered “poor” as well (poor in comparison to other stages, etc.) It doesn’t mean it will come back. If we take all the treatment offered, we have a good chance. Our treatment is still curative, so we need to try and stay positive. If you look at Predict, use the 3rd version, as it is a bit more positive and takes newer treatments into account. xx
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Just wanted to pay tribute to your attitude and the way you are handling this. We could be twins in that I had exactly the same diagnosis as you in 2020 and went through exactly the same treatment. I also pushed for prognosis because although I don’t have children, I wanted to know what might be ahead so I could, as far as might be practical, make plans.
Like you I got the same waffle but in the end I sat down and wrote a very structured letter to my oncologist explaining my situation and emphasising that I am a very ‘need to know’ person and that I wasn’t going to collapse in hysterics if he said the game was up. I explained that although I was nearly 70, I lived a very full life and that I wanted to continue this way rather than eke out years and years all in the cause of longevity. I gave him time to digest the letter and then made another appointment. Okay, he didn’t exactly give me a timeline but he did say that recurrence was more likely early on and that the longer I stayed cancer free, the better my chances of having a good few years left. I should acknowledge that part of this was tied up with my abandoning zoledronic because I found the side effects intolerable, but we have had a much better relationship since that time. He also showed me the Predict tool which I have used a lot (presume you do?).
A little bit of positivity for you is that I have been cancer free. They have found a tumour in my brain which was a bit of a bummer, BUT so far it has remained the same size and so we are leaving it alone, although I have an MRI every six months. I have regained most of my health and a good part of my strength and lead a busy and fulfilling life.
May I wish you all the best and good luck.
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First off, don’t stress and take a deep breath. You’re not alone and you’re not doomed. No oncologist gives this kind of info, to no one. Her2-pos has about 25-30% of recurrence within 5 years but I know plenty of women who are 15 years out and cancer free.
Having a pathological complete response is also usually a good prognosis factor. Grade 3 is indeed more aggressive (faster-dividing cells) but again, doesn’t mean it will come back. It depends on many factors, including food, exercise and avoiding STRESS. So avoid getting into a panic mode and live your life to the fullest one day at a time. There’s a ton of info online and you can even use ChatGPT to ask questions with all your markers etc. To me, knowledge is power. Also, panic will get you nowhere- it’s counterproductive. So it might be a better strategy to not overthink this and certainly not read into what doctors are saying or not. Be your own advocate. Take your power back. Research what you need to research and don’t rely on others for responses. It’s because you’re putting your power in other people’s hands that you feel so scared. When you take it back, you’ll feel much more in control and at peace. All the best to you.
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Have you looked it up on the Predict breast cancer tool? It’s available online ( make sure you get the version with radiotherapy as that is the newest). It will give you the survival percentage odds at 5,10,15 years. BUT that is all it will give you. It’s something, but no one knows if you or any of us will be here tomorrow let alone in 20 years. But understanding if you have a 20% chance of being here in 10 years or a 90% one gives you something to base your decision making on. It just is really fucking scary!
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Can I just ask pls ( and frightened ), I have same HER2 diagnosis and done 4 of 6 chemo cycles - why are we all talking just survival rates at 15 years or 10 or 5? Are we not expected to survive longer than 15 years - any of us ?
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That’s just the timelines the Predict tool uses, as far as I’m aware. Not sure why those numbers are chosen, but no, I’m pretty sure it doesn’t mean none of us will last beyond 15 years - I know women who have lasted 20+ years following diagnosis 
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Hi @lisalisa welcome to the forum. As @sharlou has said it’s just the timescales used on the Predict score. I know of a lady who had a mastectomy 34 years ago and she’s still here. Had it been now she may have had a lumpectomy and radiotherapy, Treatments have changed over the years and the Predict score has recently been updated to included bisphosphonates.
As you are HER2+ you may like to join the thread HER2+ and need some buddies, it’s been going for over a year with some of us finished active treatment, some on Phesgo/Herceptin/Kadcyla other like you having chemo.
Here’s the link if your interested
Are you on one of the monthly chemo starters group? It’s another supportive way to get through treatment with others in a similar position as you. This is the November thread as I you said you’ve had 4 cycles so far.
Take care 
Hi @lisalisa it’s mainly because survival data is based on research studies which track a cohort of women who have certain characteristics - maybe histology type, maybe treatment type, maybe the focus is on age banding etc etc. These studies may continue for decades depending on a number of factors like if the funding is still there, if the underlying thesis of the study is still relevant, if the individuals in the cohort are still traceable and many other things but they have a finite time period. NHS Predict has been mentioned as a prognostic tool that oncologists use to estimate survival and the data on which Predict is based draws in data from multiple studies internationally. All of this data is based on tens of thousands, even hundreds of thousands of individual stories and within those individuals stories are thousands upon thousands who go on to live a normal lifespan after the studies that include them are finished. The 5, 10 and 15 years model is just a framework used by scientists in research.
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When you say they haven’t given you a ‘prognosis’, what is it exactly that you are hoping for them to say? If they were to say ‘this is, precisely, how long you will live’ surely you might immediately think ‘Well how can they possibly know that’… they can’t give you that information because no-one has it, not because they know and are deliberately withholding it from you. Only if someone is very ill, with weeks or less to live, could they start to tell you that kind of information with any kind of precision. All they can do is to say ‘this is what typically happens’ and as others have said NHS Predict can be a useful general guide for this. The lack of knowing ‘for sure’ is really hard, but try to put aside the idea that they know and are keeping it secret. And if it helps, I said to my surgeon once ‘What do you think is going to happen’ and she said we can look at NHS Predict - she won’t tell me what is definitely going to happen to me because she doesn’t know. But I don’t think that she was doing that because she was being evasive, so I hope it to some extent reassures you that it is pretty common not to be given a definitive answer.
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Hi Coddfish, I have metastatic breast cancer too with mets in pelvis, spine, and ribs, more scans to follow. I have never been given a date either and I think its easier not to know and as you say live each day. I am on the Macmillan website and a lady always ends off by saying
Yesterday is history, tomorrow a mystery and today a blessing.
Lee x
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Thanks for sharing that quote. I think I may have to try it as a daily mantra.
I wish you the best with your treatment and long may it continue.
Yes, I am familiar with that lady too.
It’s two and a half years since I found I was metastatic. Most research papers gave a poor outlook for TNBC with liver mets - but all that evidence was before Pembrolizumab was approved for PD-L1 positive TNBC. I am enjoying my remission whilst I can. I don’t know what’s around the corner but there would certainly be limited targeted treatment options for me. Hopefully I will stay around long enough for more good treatment to emerge. Currently my next line is Trodelvy and that’s it other than trying other types of chemo I have not yet had.
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I have metastatic BC in lungs, plueral space, and 2 boney mets. One pall care doc i saw asked me 4 times in consult ’ what is your prognosis ’ …i was sure she wanted me dead… but my breast care nurse says that BC is such an evolving field. In a given 12 mth period new developments are made, new meds released she said not to look at the literature as it doesnt reflect the current medical services.
We need to keep being positive as im sure once you fall into depression things will get worse quicker…
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You don’t get a prognosis with a Primary Breast Cancer diagnosis as this cancer is treatable and ‘curable’, as I was told when I finished treatment for my Primary diagnosis in 2016.
As others have already said, the ‘predict tool’ is used to give patients an idea of what benefit will be gained from further treatment: in my case that was chemotherapy, radiotherapy and endocrine treatment following a WLE. If memory serves it gives the overall survival rate in percentages and the oncologist discusses what benefits would be gained before I decided which treatments I was prepared to have.
Against my better judgement I went for everything offered as I had already been told that I had been ‘cured’ and this was adjuvent treatment which would catch any stray cells.
I am now unfortunate in that I have Metastatic Breast Cancer that has spread to my bones (hip, rib and spine). I did ask my oncologist for a prognosis and was left speechless at what I was told. I was then advised that this was the prognosis they gave everyone and that there was no reason why I would not survive longer and that new treatments were becoming available all the time.
Unlike PBC, MBC does not have the same level of statistical information available for a more accurate prognosis but I believe this is now being addressed.
Hopefully in the future people will no longer dread the ‘living with cancer’ diagnosis as there will be even more advanced treatment to prolong life.
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