Prognosis anxiety

You are my prognosis twin. I was diagnosed in August 2022, and was ER+, 4 lymph positive lymph nodes, Grade 3. I am 50 now, 49 when I was diagnosed. I had a slightly smaller tumour, but my Predict score was pretty similar to yours, and I am on the same treatment. I finished radiotherapy in May and started hormone treatment in June, Abemaciclib in July. I have two teenage daughters. 

My oncologist wouldn't engage in any kind of discussion around prognosis, so no one ever talked me through Predict, but I know from what others have said on this and other forums that many oncologists now encourage people not to look at it, as the data is now so out of date. Plus as you say it doesn't take account of things like exercise which may make a difference. 

Nevertheless, my prognosis is clearly on the gloomier end of the spectrum, even if the actual numbers are too pessimistic. And I find it really hard too - I feel that any pleasure in planning for the future has been taken away. I feel like I can't anticipate ever retiring, or having grandchildren, or moving to a new area of the country as we had always vaguely planned to do once our children had properly left home. I have recently had an unexpected inheritance (I know I'm very 'lucky' that this has taken my immediate financial worries away, so I don't want to sound disrespectful of others not in this position) - but I find it very hard to know how much I should be sensible and stash it away in my pension and long term savings, and how much I should spend on nice experiences now. I am also a planner and find the absence of certainty hard. 

There is no answer to any of that, but one thing that has helped me is something I read online (I think it was on Liz O'Riordain's blog) is that the Predict results aren't your prognosis - they are the average prognosis of a group of patients with your characteristics. Really, your chance of recurrence is either 100% or 0%. It will either come back or it won't. You could have a statistical chance of recurrence of 5% and still be in that unlucky 5%, and vice versa. I know not everyone finds that helpful, but it has made me a little more fatalistic about it all, in a good way. I also sometimes find it helpful to remind myself that no one really knows what the future holds. I had a family member literally drop dead of an undiagnosed heart condition at my age, and they died in the middle of a dispute with another loved one. At least with cancer, you know your risk is higher, and you have the chance to think about how you want to change your life. (Again, that thought isn't helpful for everyone, but it is for me, a bit.)

You ask what changes other people have made. I try - don't always manage - to live a bit more in the moment. I do spend a bit more freely than I might have done previously on small things that make life easier but which I would have seen as extravagant before (having a cleaner, taking a taxi to the airport, for example). And I say no more readily to things I don't want to do and which won't give me pleasure. I am freelance and have turned down projects I knew were going to cause me stress or not bring satisfaction, even if I would have welcomed the income. 

Sorry for the essay. I've actually never posted on this forum before, but I was so struck by how similar our situations were. 

Hi, thank you so much for writing such an honest and worthwhile post. And also to Dorothea B for replying. I too was not given a prognosis, but I did have lymph node involvement. I was not grade 3 though. I agree with Liz O’Riordan that our prognosis is 50/50.
Someone who I met on in the chemotherapy unit died last year. She was 80, and had been diagnosed with BC when she was about 64. She had no lymph involvement, a smallish straightforward tumour, and following a full mastectomy she took Anastrazole for 5 years. She then metastasised, at 71, which was an huge shock, and she was stage 4 for nine years. Her original diagnosis, prognosis, and her death made me really think. 
There was a kind of recalibration of my life, what is important, and what wasn’t. So I came out of a dreadfully miserable relationship - that was long overdue and I am much, much happier without that. I had thought about retiring pre-diagnosis, but it was always ‘maybe next year’ and so on. So after my treatment, and at the suggestion of occupational health, I took flexible retirement, taking my private pension for 3 days a week, and a salary for two days a week (I am nearly 62). Again, this was a good decision, but I realise that not everyone can do that. Although I’m on less income, I spend a little more than I used to, and save less. Usually I focus on nice days out and going to cafes. I’m not interested in ‘things’ anymore, I am more interested in nice experiences. I have joined lots of clubs and do a little voluntary work that is of my interest.. This last couple of months I have felt that work gets in the way of things that I like doing, and so I’ve made the decision to fully retire next year. I will use some of my savings to support me until my state pension kicks in. 
So for me, it’s been a process made and decided on in stages. I dipped my toe into the ‘early retirement’ pond, and a year later found that I wanted to swim completely in it. I do live more for the day nowadays, and I do treat myself more. I haven’t had a complete personality change, so Im still not a massive spender, but Im certainly less rigid, and a bit softer around the edges. 
Sometimes not having a plan can be a blessing. It is still very soon post- diagnosis for you, but hopefully the mist will clear a little, and you will see something that lights up your eyes. Xx

Oh Dorothea, I’m delighted to have you as a prognosis twin! And thank you for posting as a result of my message. Your perspective is really helpful, especially the idea that my chance of recurrence is either 100% or 0% as it will keep me focused on all the good habits I have developed to reduce that risk as much as possible.
I think part of my disappointment at the prognosis is simply because we’ve had a tough 3 years as a family, losing my Mum to pancreatic cancer in 2020, then my Dad died suddenly in 2021 and I got my diagnosis in 2022. I feel as though all of us (not just me) have forgotten how to feel joy and how to make positive plans for the future. Hence wanting to put all this behind me and act like it never happened. Thank-you again for your message, I really appreciate it. Big hug, AnneL x

I'm sorry to hear all that, and again we are spookily similar. My mum died of cancer (bile duct, which spread to her pancreas) in 2019, and I've had a string of other bereavements in my extended family in the years since then, as well as my husband also being diagnosed with a serious and progressive illness in 2020. I feel so much has been taken away from me, and it's hard not to be able to look ahead with positivity. But your point about keeping focused on good habits is important. I need to learn to do this too. Big hugs to you too. xx

Dear Cloudier,

Thank-you for your thoughtful message - it has given me some things to consider as I begin navigating this strange new post-BC world. You're right that our original diagnosis does not necessarily predict a certain outcome; your friend from the chemotherapy unit could not have expected her BC to metastasise based on a "no lymph involvement" diagnosis and a seemingly robust treatment plan. It sounds like she was very unlucky. I have a friend who works at our local hospital and she shared that she meets women who've had axillary lymph node dissections and who are now coming in for knee replacements or hip replacements some 15-20 years later. I'm sure we all hope to be in that category! 

I agree that cancer helps to recalibrate your life and decide what's important and what isn't. For me, my work ambitions died overnight. Suddenly, achieving a promotion or leading a new team seemed utterly irrelevant. I enjoy my work, but I'll be happy to contribute on a part-time basis and watch others pass me by on the golden escalator. Spending time with friends & family, building memories and having new experiences are the priorities now. Like you, I'm not interested in things anymore and similar to Dorothea, I've become very good at saying "no" to people when I don't want to do something. I try to be grateful every day because I'm conscious that there are fellow cancer warriors who probably envy my prognosis. I am lucky to have a loving family, good friends and a supportive community at our Church. If I could spend less time doing chores and more time holidaying, then that would be a good start to my new, potentially limited, life!

Thanks again for your message, I really appreciate you taking the time to reply to me. AnneL xx