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.
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.
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.
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.
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.
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.
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!
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 ?
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
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.
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.
