Hi, I was diagnosed with invasive ductile carcinoma a couple of months ago. Grade 3. HER2 negative and hormone positive. They said it’s T1N1M0. I’m 37.
They gave me my predict score the other day and it was 60-70% without treatment and 84% with treatment… and I don’t know how to feel about it because it’s all I can think about. I guess they give you it so that you can decide on having treatment after which I am going to have. But I just feel like I have this number over my head and I don’t know how to feel. I just wondered what everybody’s experiences were with it and how they look at things? I’m starting treatment soon and I just can’t stop crying.
Any advice would be great.
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Morning @321_cake I had exactly the same brand of cancer as you aged 39 so our predict scores would have been the same. I’m so sorry you are dealing with all this it really is awful.
I remember everytime I looked at my stats or heard them from the professionals I kept thinking how much I wish none of this was happening. How can it be happening to me 
Please know that those early days, where you are now are the worst. The news you’ve been given is a shock and you will feel that for a while. Cry as much as you need to. Once your treatment starts you’ll have a plan in place and be swept up in the process and you will feel a little better. Once I stopped crying I decided to take action for myself. I wanted to do everything possible to help myself through treatment and even beyond treatment. For me that was paying close attention to my diet, cooking more from scratch which I actually loved. Trying to fit in as much healthy food as I could instead of cutting loads out. And walking. I would put my earphones in, listen to songs and playlists that have me a boost and I marched. Infact before treatment started I felt the fittest physically I had done in years. What ever you think will be a positive for you right now do it. As often as you can. But getting outside is a great place to start. Once your treatment starts you’ll have lots of days you need to relax so make the most of your time now 
Keep using this site to reach out also. We are all here with you and you will get to know people at a very similar stage to you. It is a huge comfort knowing you arent in this alone
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Thankyou so much for your reply and advice. Think I’m just feeling a bit lost and terrified. I’m going to get out and have a walk I think.
It’s scary knowing numbers.
How long ago was your treatment?
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Yes get out for a nice walk you absolutely wont regret it
I was diagnosed on 3rd Nov last year, had my first lumpectomy in Dec, my 2nd in February then started 8 rounds of chemotherapy in March then on 23rd July I had a double mastectomy (I found out I was BRCA2 positive during treatment)
So really my treatment didnt end that long ago. My last chemotherapy was the 18th June I think. It is manageable @321_cake if you can make sure you are prepared you can get through it. I have 2 teenage girls and we still had lots of good days during my treatment. Sometimes my 13 year old even forgot I was having chemo.
Just take one day at a time you aren’t expected to get through everything in 1 day. The very fact that you found your cancer and can have treatment means you are already winning
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Bless you. Wow. Thankyou so much for your advice and kind words. Think having numbers just knocked the wind out of me a bit if that makes sense. It’s learning how to navigate things I think.
Thank you so much.
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Thats understandable. Some of us like the saying knowledge is power. But the flip side is sometimes we know too much haha
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So true! X
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Hello, just to reiterate what Foxgem said. It is all really hard but once treatment starts, it does get easier 
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Also - it is really important to remember that Predict scores are out date because they reflect outcomes from 5/10/15 years ago. Things are improving all the time and additional treatments offered are not included on the Predict tool. For example, I am on ribociclib and that has improved outcomes massively but it is not an option when filling out the form and so cannot truly predict outcomes because when the tool was created certain targetted therapies were not even available on the NHS for early breast cancer.
sending you a big hug and know that things will get easier xxxxxx
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Thank you so much. I think when you’re given a percentage over your head it just knocks the wind out of you sails and I don’t know if it’s a good number or not. Thankyou so much for your advice I really appreciate it x
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Hello, the bit where you are right now is the hardest, as others are saying. When you get a chance, get your team to talk you through how Predict works. It is just algorithms based on statistics of past outcomes for thousands of women. So, it is trying to indicate your chances of disease free survival over 5 or 10 years with or without the various treatments. It doesn’t make it that much easier to make your decisions because it can’t tell you whether you are one of the few in 100 that will benefit from the drugs. Surgery is the main thing (chemo and radiotherapy too if recommended). Focus on that and then you will have the luxury of time and more information to understand and consider your other treatment options. It is important to remember that Predict is just a tool to aid decision making, not a fortune teller. Try not to think about statistics if you find them scary. Good luck x
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Hi @321_cake,
I’m so sorry to hear of your diagnosis and that you’re feeling so upset. Please know that you can reach our nurses on our free helpline 0808 800 600 - they’re here to answer any questions or even just to be a shoulder to cry on.
Some information about Predict as well that you might find useful:
Predict uses individual information about the person and their breast cancer alongside data from large research studies. However, this version of Predict doesn’t include variables such as radiotherapy treatment and the impact these may have on prognosis. There is a newer version of Predict (version 3), which does include other factors, however this newer tool hasn’t been externally validated yet through large studies, and the UK Breast Cancer Group (UKBCG) is currently not endorsing this version it until it has been validated against international data.
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Thankyou so much for your reply and advice. I think I just don’t know how to feel about the numbers. I just feel so anxious. I will speak to them soon and ask about it.
Thankyou so much.
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Thankyou for your reply, I said to them about another version so will ask the dr about it when I next have an appointment. I just know know how to feel about the numbers if it’s a good prognosis or not. It’s like I’ve been winded kind of thing.
Thank you so much for you advice.
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Hi
I wasn’t even told my Predict scores so ended up looking myself. The newer version tends to give a more favourable outcome with new treatments included but it does take time to get the full data over the 5/10/20 years.
An oncologist Dr Claire MacCauley discussed Predict on this podcast/video with the charity menopause and cancer, which will be helpful being hormone positive. At approx 27 minutes in.
Some BCN links you might find helpful. The nurses have more time to talk than your breast nurse in clinic.
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Helpline: 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm). Speak to our trained helpline team. No questions are too big or too small.
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Ask Our Nurses: You can message our nurses here on the forum, or confidentially. Whatever you prefer.
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Someone Like Me: Will match you with a trained volunteer who’s had a similar experience to you. They’ll be a phone call or email away to answer your questions, offer support, or simply listen. Call on 0800 138 6551 or contact our email volunteers
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Younger Women Together: For people 45 and under. You can choose the support that suits you: online, one day or 2 day residential events. Find an event.
Take care and take it one day at a time. There is no one right way to deal with a cancer diagnosis.
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Thankyou so much. I really appreciate it x
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my 19 yr old daughter was diagnosed with invasive ductal breast cancer grade 3 on 23rd July. We were not given a predict score just so not sure what this is. We were just told she needed to have weekly chemotherapy and immunotherapy treatment. We are on week 7 and she has been so strong and brave. She Just keeps saying it’s a “huv to” and so far it looks like it’s working. We had our first face to face review with consultant last week and she said it felt like it was shrinking this has given us all such a boost. You will get through this xx
Please reach out when your crying, I’ve found the messages and support all the lovely people on here have provided when I’ve hit a wall xxx
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Bless her, I’m so sorry that you’re all going through this. I’m glad she is responding well bless her. Thankyou for reaching out. Think all the uncertainty just hits you hard.
Thankyou and hope everything goes well for her x
Hi @321_cake , we have the same type of breast cancer. I’m 39 and was diagnosed on 29th April this year. It is very scary to hear and we all can fully relate to how you’re feeling. It’s such a shock but this community is amazing. If you need to cry, then cry. It is a lot to take in and there is so much information given to you, sometimes it’s hard to keep up! I never got my predict score, but my treatment has started and I’m trying to remain positive. I’ve had a lumpectomy with LICAP flap reconstruction back in June & am waiting to move onto chemotherapy.
Hopefully once your treatment starts, you’ll feel more at ease with the numbers. Please stay positive and reach out to the community when you need Xx
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