Hi, I was diagnosed with stage 3/grade 3 HER2+ ER- breast cancer in October 2021. Two very big tumours, inflamed skin, all my armpit lymph nodes involved & very aggressive. A complete shitshow! I’ve had mastectomy, lots of dense dose chemo, Phesgo, radiotherapy and Zolendronic acid. Treatment worked in that I had a complete pathological response which means there was no cancer in the tissue they removed or on the final scans, including no cancer left in my lymph nodes. I am now nearly finished treatment - one more Zolendronic acid left, I think. My problem is that I have asked and asked various medics what my prognosis is based on my diagnosis and response to treatment and they simply refuse to answer me. They look really evasive and say things like ‘I can’t say’ ‘We don’t have the data’. But everyone I know was given a prognosis and to be honest the fact that they won’t tell me anything makes me fear the worst and is causing me a huge amount of stress. If my prognosis was good, surely they’d be falling over themselves to reassure me? As it is, I feel panicky all the time about leaving my teenage kids. I could understand them not saying anything if I wasn’t asking, but I AM. If they think it is almost inevitable that my cancer will come back, I could get on with cashing in pensions and trying to make the most of what time I have left. How can I make them talk to me?? Any experiences/advice? TIA
My surgeon and oncologist don’t like giving prognoses. The party line for my Trust seems to be that each cancer is so individual that whilst there are statistics, they are very generalised and can’t be relied on to give an accurate picture to each patient. So they choose not to go into details as they say that they absolutely cannot predict, or give any potential possibility, as to what may happen.
That said, they’ve used words like ‘curative’ on occasion and keep repeating to me that the cancer has been removed from my body and what we are doing now is taking steps to ensure it doesn’t come back, with the caveat that we can’t guarantee it won’t! I think I’m going to have to learn to live with the uncertainty of recurrence, and I am hoping that I’ll get to a point where I don’t worry about it every waking second. At the minute, when things are still raw, I can’t imagine ever not being a nervous wreck about it…but we have to live our lives don’t we! Hopefully time will make things easier…
When I’m feeling less emotional about things I kind of feel sorry for the medics at times. In this day and age where they can get sued for giving out ‘wrong’ information it doesn’t surprise me that they remain tight lipped about something that seems so unpredictable and uncertain.
Maybe one of the nurses on the helpline would be able to give you some general stats which might help you to feel more informed?
Thank you. The fear of recurrence/spread is awful. I can’t help but think that the only reason they are so shifty and evasive is because they believe I’m a dead woman walking. That’s how I feel a lot of the time. As we don’t get any scans or tests I fear that I’m already riddled with secondaries. I’m interested that your doctors also refuse to give a prognosis. I know loads of women who were given one, so I’m suspicious as to why I haven’t been.
Hi kittycat
They (the medics) do like to focus on the positive news and dodge some of the negative bits in my opinion. Had I not done some research myself I probably wouldn’t have asked the extra questions which included things like recurrence etc…
My team liked to talk about the benefit of hormone therapy, and also quote survival statistics for 5 years. But being ER+ recurrence is more likely later on, say 10 years. I had to really dig to get some answers and even then they were vague. I don’t mean to sound critical, all the staff have been lovely, and of course they want to give hope and reassurance, but sometimes you need to know the unpleasant facts as well.
Take care x
Exactly this Sal! Mine won’t even give me any survival stats at all. I’ve asked and asked. This is terrifying me. They don’t give me any information and they don’t give me any hope.
Unfortunately, the bottom line is there are no guarantees, and they probably have to play it safe by being non-committal. Doesn’t necessarily mean your long term outcome is bad. I want a guarantee it’s not coming back, but no such thing exists 
You may not have asked or pushed for an answer when first diagnosed, as there is so much more going on. But now you’ve had time to digest and think, and you want some more answers, and quite rightly so. I would try get an appointment to see the oncologist and stand your ground until you are satisfied.
Best wishes x
I asked for stats in 2018 and was told 92% for living 5 years and 79% for 10 years as it comes back. I was hormone receptive last time. This time may be a new primary. I got another lump after 6 years. It’s also HER2 and in my axilla but not my lymph nodes. There is no test for a new primary or recurrence. Both on the same side. Not sure why they can’t give you percentages. I don’t know the stage this time. My cancer hasn’t read the book apparently. Is treatable but may or may not come back. The percentages are based on old info though although I did say I didn’t like the sound of 79% but I’m still here. I did say I wasn’t too concerned. It’s just something you have to put to the back of your mind.
I have never asked for a prognosis, despite having metastatic cancer. I fear it would sit like a huge ‘use by’ date over my head. The reality is they can’t really tell as there are so many variables. I know it’s easier to say than do, but please try to enjoy each day as it comes. Whilst you are well, you are well. If it comes to it, change won’t happen suddenly and you will have time to plan.
Dear Kittycat,
Sorry to hear about your diagnosis and all the worries that carry after the treatments are over with uncertain future. I was diagnosed in Nov 2020 with the same condition HER2 +++ ER- with 2.5cms tumour on the right breast and lymph node involvement. I was then 57 years. I got complete Pathological response like you and my oncology surgeon told my prognosis as 5 years which he said is normal time they would say. He also said it doesn’t mean that it will comeback it may stay clear after 5 years. Every year I am having a bone scan and CT of all the body along with routine mammograms. By god’s grace I am still clear and hope my immune system keeps the free floating cancer cells away if any! I am back working full time since last 3 years. Stay positive and you will be stay free like me.
All the best,
Sara
How did you get a CT scan of the whole body. Mine will only give me one at the end of treatment and not regularly. They will do specific scans if I get any symptoms.
I had a mild hip pain constantly which was bothering me for over a couple of months which made them to check for secondaries last year in November. They did both bone scan and CT
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.
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.
Hi
Have you used the nhs predict website? Just be sure you want to…. But it gives percentages up to 15 years
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
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!
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
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
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.