I love seeing the posts on social media showing “this is me now”…but… so many of these wonderful women are “now” stage 4. It’s completely freaking me out. I had stage 2, grade 2 IDC and coming up to my first year scans since diagnosis. Should I just be preparing myself for the inevitable; that they will tell me it’s back or a new primary? So many of the amazing women sharing their stories were of similar grades. Maybe I need to adjust my outlook? It just feels like this will be my path too, as it was theirs. Does anyone else feel so scared too? 
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@phoenix5 My heart goes out to you, so many of us feel the same as you, at the moment take one day at a time, be kind to yourself.
Appointment, surgery, ,treatment, take a very big toll on us, also we don’t always trust good news, waiting time is endless,
Time to relax, take small step and set goals, everyone cancer is different, not all treatment fits one size. Very easy for me to say please try to be positive.
Wishing you well, health and happiness going forward please keep posting letting us know how your getting on
With the biggest hugs Tili 
@phoenix5 no doubt it is a concern for anyone who has had any form of cancer, not just breast cancer, and it certainly occupied me for 12-18 months after diagnosis BUT it is pointless to live the whole of your life in fear about something that may not happen. There are no hard and fast facts about stage 4 incidence but I have seen 30% bandied around a lot, including by Liz O’Riordan. It probably isn’t quite that high these days due to more targeted therapies coming on stream however, if you take that as a wet finger in the air, that means 7 out of 10 women will not develop metastases, which are reasonable odds. On a personal level, were you given any indication of potential recurrence? If you had an Oncotype test, it gives a percentage estimate of recurrence but not every one gets an Oncotype test ( I didn’t qualify for example). Whilst Predict is about survival, not recurrence, it gives a percentage estimate of how many people of your age with your histology die of breast cancer within 15 years after diagnosis, which is another way of indicating your chances of not being one of them. But I think this sense of doom, which I shared too for a while, is really about the lack of control that we have over our own lives. Something unexpectated and frightening swoops in, turning our lives upside down, and it’s difficult to accept that we can ever be free of it, that we can ever truly relax. But that’s exactly what the vast majority of women who have had BC experience - it is dealt with and never comes back. It’s hard to process on your own, could you - if you haven’t already - discuss this with your GP who should have recommendations of counselling and support groups locally? Talking therapy would be the biggest help for you, I think. I am soon coming up to my four years anniversary of diagnosis (out of the blue after a routine mammogram) and, these days, I don’t think about it or recurrence that much. On the days that it flits in to my mind, I say to myself that if it happens I’ll deal with it then but I am not going to waste the precious time when it hasn’t happened, by worrying about it. I hope you can get some emotional equilibrium in due course.
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I appreciate your kind reply. I only had a prosigna test and I did the predict score for myself. Never given any recurrence stars but under 6 monthly appointments with the surgeon for review so I assume the risk is high. I had a very big tumour. I am seeing a therapist who has diagnosed me with PTSD so doing a lot of EMDR work. Sadly I have a useless GP who wanted to give me antidepressants that were contraindicated with tamoxifen. But I am medical myself so that sometimes makes things worse… too much background knowledge! I try to take things a day at a time and then sometimes I just get really wobbly. My first mammogram since diagnosis is next week so I am just hoping it won’t be another repeat of last year. Thank you for your support and kindness
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Too much knowledge can be a hindrance and they do say that ignorance is bliss. I was a lawyer in the City and, by nature, have to understand the detail and causal links otherwise I try to work them out for myself, usually misguidedly, so have a lot of empathy with your mindset. I feel that anything I might be able to say, as a layperson, would sound trite, however is there any value in trusting in the treatment plan devised by a team of experts to treat your precise diagnosis with express curative intent? I knew relatively little about cancer when diagnosed and didn’t understand about metastasis. When the penny dropped, I had a year of panic and doom, not helped by the fatigue from active treatment. A very dear person on the forum, with perfect American directness, told me that no-one, not the medics, not the diagnostic tools and certainly not us, knows who will get secondaries and the only way we’ll know we won’t is when we die of something else. That’s a long time to be in thrall to the fear. It does seem as if you are getting help and using techniques to mitigate the impact so well done for that. No doubt you’ve heard the term scanxiety? It is a very real thing and as each annual mammogram rolls round, it rears its head and never gets any easier. I go into it believing that it will confirm that I am still cancer-free - and so far it has - but it isn’t easy to be positive. I wish you an easy and successful first check and a still and quiet mind in the future.
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My guess would be that those with recurrences and metastases are more likely to continue to engage with breast cancer groups, so there will be a disproportionate number. Also, younger women are probably more likely to use Instagram and suchlike who do have higher recurrence rates.
I posted yesterday as someone who is now finished active treatment but still in the early stages of recovery. I don’t tend to worry about recurrence as such as the ongoing and lasting effects of treatment, including hormone treatment. That’s primarily why I shared, I do think people are unaware that treatment for cancer can go on way longer than just the hospital bit.
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Hey @phoenix5 it makes complete sense to worry about recurrence, especially when you’re surrounded by other people’s stories. The ones that get shared most loudly are usually the ones designed to tug at your heart, not the quiet, ordinary stories of people who go on to live long, healthy lives. As someone five years past diagnosis, those dramatic stories aren’t the ones I hold onto anymore.
When my mind starts drifting toward the “what ifs,” I think of my Great Aunt Frances. She was diagnosed at 40, had the same treatment I did, and she’s now 83—full of life, full of opinions, and absolutely thriving. She’s my reminder that survival isn’t rare; it just isn’t shouted about.
During my recovery, I started making little products for people going through cancer treatment and menopause. I’d bring them to wellbeing events, and people would open up about their own journeys. Hearing so many stories of recovery slowly softened my fears. It showed me how many of us come out the other side and keep going.
These days, I try to face the uncertainty with a bit of fire. If recurrence ever shows up, I’ll deal with it and kick its arse—because I’m strong and fierce. And so are you.
I wrote about all of this in my book Tits, Tears and Triumph. It isn’t a sad story; it’s full of humour, grit, and the voices of women who’ve survived and kept living boldly. My Great Aunt Frances makes an appearance too.
You’re not alone in feeling this way, and you’re stronger than you think. Stay steady, lovely. You’ve got this.
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