Hello. I was diagnosed with breast cancer in February aged 40. I’ve had a lumpectomy, a re-excision then a mastectomy and implant reconstruction as the breast was full of both IDC and DCIS. Consequently, I’m now waiting on results of a a test called Prosigna to guide the team to a decision on radiotherapy and/or chemotherapy. I was wondering if anyone has had this Prosigna test and what the outcome was and what advice you were given. Reading about it has made me none the wiser. Thank you. x
Is it a test to predict the likelihood of a recurrence or secondary breast cancer? I don’t seem to have had half the tests mentioned on this website, although I did ask my oncologist & radiotherapist the likelihood of a recurrence. If I’ve had them I don’t seem to know about it.
Welcome to the forum @coll123 . Breast cancer now has some information about this test that may be helpful Prosigna | Breast Cancer Now
You could also ring the nurses on the Breast Cancer Now helpline 0808 800 6000 when it opens again to ask questions and talk this through ? There are other posts about this if you put Prosigna in the search box , hopefully someone with first hand experience of this will respond post .
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I didn’t have prosigna but I’m waiting for Oncotype test result after double mastectomy. I think prosigna and Oncotype are only done for certain type - so estrogen positive and HER2 negative in my case, in cases where it’s not definitive chemo will be of benefit it gives the prediction of recurrence and from that the MDT can make a decision of future treatment. Hope this makes sense xx
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Hello. Yes, that’s what it is. From my reading, the result in itself doesn’t decide if you have chemo so I don’t really understand the purpose of categorising the result. You might not need the test yet, it was only just indicated to me after my third surgery. It’s a minefield. Sending lots of luck and love to you. x
Hello. Thank you, that makes perfect sense but I just don’t understand why there’s a low/intermediate/high result but chemo could be indicated in all of those. I will be patient and talk it through with my oncologist when I see her next month. Hope you’re ok. x
Thank you. I’ve read your Prosigna page many times, you have so much great information. I think I might contact your nurses, thanks again. x
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I was told a Prosigna/Oncotype test wouldn’t be any good for me as I am premenopausal (I’m 47). I was told that the outcomes for premenopausal women aren’t as clear cut as for postmenopausal women. That said, my experience on these forums is that a lot of women are given the tests irrespective of age so there seems to be varying opinions from oncologists! Actually, now that I think of it, I don’t remember seeing anyone say that they weren’t offered the test because they were premenopausal 
In my case, I am having chemotherapy based on my Predict outcome - I am stage 2, had positive nodes, and my mother was diagnosed aged 29, she died aged 38. So I guess I tick a few high risk boxes.
I was told a Prosigna/Oncotype test wouldn’t be any good for me as I am premenopausal (I’m 47). I was told that the outcomes for premenopausal women aren’t as clear cut as for postmenopausal women. That said, my experience on these forums is that a lot of women are given the tests irrespective of age so there seems to be varying opinions from oncologists! Actually, now that I think of it, I don’t remember seeing anyone say that they weren’t offered the test because they were premenopausal
In my case, I am having chemotherapy based on my Predict outcome - I am stage 2, had positive nodes, and my mother was diagnosed aged 29, she died aged 38. So I guess I tick a few high risk boxes.
Sorry for the duplication, my phone seems to be having a wobbler 
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Hi coll123, I am 42, was diagnosed last year, had 2 small IDC and a large area of DCIS, 2 positive nodes, plus BRAC2 gene mutation. I was given the prosigna test via the OPTIMA trial, which is looking at whether genomic tests (like prosigna, oncotype etc) can accurately predict if chemo would be beneficial or not for premenopausal women. My result was ‘low’ risk (for recurrence) so I didn’t have chemo and went straight to radio. OPTIMA is a large, multi-site RCT which is the sort of trial that can usually only be done if there is already some evidence that the intervention being tested is likely to work - so I wouldn’t be surprised if some doctors/Trusts are offering Prosigna on that basis.
Sorry you’re having to go through this and hope you get a confirmed treatment plan soon xx
Hello sharply. I’m so sorry to read about your mum. You’ve been through a lot even before your diagnosis and treatment. Thank you so much for sharing all you did.
I’m post-menopausal already as premature menopause runs in my family and it got me so I think that’s partly why they’re doing to prosigna test for me. I am just getting impatient I think and want to know what’s next now.
Wishing you the best of luck and as you embark on your chemotherapy. I will be thinking of you. x
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Hello sap1981. Thank you so much for your response. I’m pleased your result was low and you don’t need to have chemotherapy. How did you find the radiotherapy treatment? It’s very likely I’ll need that and I’m feeling positive about it whilst hoping it doesn’t harm the appearance of my pre-pectoral implant I had last month.
I’m seeing the oncologist on 4th September so not too long to wait now but I’m just fed up of waiting for results, it’s been one of the hardest parts. Unfortunately due to premature menopause I’m already post-menopausal so not sure what implications that’ll have with the prosigna test. Hoping these next few weeks fly by. Thanks again. x
Hello! I was diagnosed late December, I had 2 x tumours. One was Invasive Lobular cancer and the other tumour was Mixed ductal. I also had nodes positive. I was recommended the Prosigna as I had the 2 different cancers and node involvement. Unfortunately my test came back as a very high risk so Im just finishing chemo. At the time I spoke to other people and their results came back as low so try not to worry. I see it as a positive test as it can avoid you having treatment that you may not need. X
Hello hc1973. Thank you for your response. I’m sorry for all you’ve been through, I hope you’re as ok as you can be? That’s really helpful information, thank you and a really great way to frame the prosigna test. I’m of course hoping I’m low risk and don’t need the chemo but I’ll have to wait and see. You’ve made me feel much more positive, thank you, that’s so kind of you. x
It’s a hard time when your waiting isn’t it! I remember scouring all the message boards for people who had had a prosigna test! Even if you do need chemo it’s amazing how strong we can be and often the unknown is so much more frightening! Take care and please reach out if you have any questions or want to chat. Helen x
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Hi Coll123, I was really worried about the impact of radio on my implant as well. It has got very slightly tighter but seems to respond well to stretching. I have tissue expanders which are temporary and will be replaced with permanent implants hopefully early next year - is your implant permanent or temporary? I think even if permanent they can usually be replaced if radio affects them a lot.
Yes the waiting is awful, I agree it’s one of the worst bits. Hope you can find ways to manage/be distracted in the next week or so. Feel free to message me anytime xxx
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Thank you so much, that’s so kind of you.
My implant is permanent so I’m hoping it’ll be ok through the radiotherapy but I guess time will tell. I’m so distracted with the thought of potentially needing chemotherapy I’m all over the place, you’re right, the waiting is awful and I’m not as patient as I could be. Hope you’re ok. Coll. x
I just thought I’d add an update if anyone is interested. The prosigna test result came back as high risk so I start chemo next Friday. It’ll be 4 cycles of EC then 5 days of radio. I’m dreading chemo but hoping for the best. x
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I didn’t have chemo, but wish you all the best, I coped with itching and skin burn from the radiotherapy and only seem to be left with some fatigue, so it wasn’t as bad as I was expecting.
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Thank you. I’m glad the radio wasn’t as bad as you expected.