Prosigna Test - Pre-menopause - waiting results...

Hi Capemaal, I  have the same diagnosis apart from nothing in my lymph nodes. I don't need chemo but do need radiotherapy and haven't been offered any onco dx test or similar so can't answer your question in that respect. But I am having very similar worries about the hormone treatment and whether I should do it or not as I am so worried about the side effects and it only gives me a 2% better chance of surviving 15 years than if I don't take it. However as you say should I go belt and braces and I would obviously be gutted to get cancer again. I am currently reading everything I can - looking at NICE guidelines, reading about other people's experiences etc and plan to speak to my BC nurse, GP and see if I can find any independent people at Maggies or Macmillan locally to speak to so I can try and make the decision.  The Oncologist I saw a few days ago said if the side effects are too bad I could try a different one or opt not to take them as the benefit for me would be minimal. Not sure which one it'll be as waiting blood results as to whether I'm post menopausal or not as was taking HRT until diagnosis in January. It's really difficult trying to make these decisions isn't it? Good luck, sending positive thoughts xx

Hi!, Thank you so much for your reply! The decisions seem so hard don't they? You just want someone to tell you what to do! I guess you could try the hormone treatment and see how it goes...if like you say you only have 2% gain then if you do decide it's too much or the side effects are too great then maybe you can have some comfort that your percentage is super low if you decide to stop - and like your oncologist says there seem to be lots of different types of hormone treatment so it may be a case of trial and error for a bit? It definitely seems to be a toss up between peace of mind and doing eveything you can to reduce the risk vs side effects and quality of life but you may be lucky and you may not have many side effects? Sending positive thoughts your way too and good luck on your journey xx. 

Hi Capemaal, 
Im in a very similar situation to you. I’m 48 and waiting for Oncotype results. Same type, same 8/8 score for hormone receptors and one lymph node involved. I wonder why you are having Prosigna testing and I’m having Oncotype? I’m perimenopausal…
One minute I’m thinking I hope I don’t need chemo then I’m thinking maybe it would be better to have it…. To throw everything at it! 
How long is your wait? I’m hoping to find out this week. Waiting for a phone call…. 

wishing you all the best. Let us know what results you.get and what your oncologist says. I’ll do the same when I hear back…
A xx

Hello,

Another premenopausal here ER+ PR+ Her2-. WLE in Nov 2023.

Diagnosed at 48, IDC 18mm grade 3 KI67 40% LVI present, 0/4N. Oncotype score: 16 (less than 1% benefit ch).

Considering the patology of my tumour I was very worried about my ODX result and what if I did not have chemo, the Oncologist explained to me that they request the ODX test to be done when they have doubts -as it was in my situation- and the result meant chemo benefit was very low compared to SE. My current treatment is Tamoxifen and will change to AI when menopausal.

So far I've been on Tamoxifen for nearly 2 months and no SE of importance. I did 5 days radiotherapy that made me tired and was doable, still some pinky burn and swelling after +3 weeks and it seems to be improving slowly.

I agree that making decisions and the waiting times are the difficult, we need to learn about so many things that it can be overwhelming. I still get very anxious every now and then.

Wishing you all the best outcome and that you do well.

xx

YesIi feel exactly the same! Keep going round in circles in my head but until I have the results and the facts i guess there's no point worrying! Although putting it out of your head is hard! Really hope you get the results soon and that the oncologist can guide you into what's right for you treatment wise. I'm hoping to get the results back this week too...the waiting is so hard! I'm doing the prosigna test through private health care cover hence why i'm doing prosigna and not oncotype. I"m just worried with both tests that there isn't much evidence on pre-menopausal women but i think we have to trust the results and trust the oncologist to help make the correct decision....Good luck and really hope you hear soon..... please do keep me posted. Take care xx

Thanks so much for taking the time to respond! So happy to hear that you're doing well on Tamoxifen. It gets a bad rep so it's lovely to hear some positive feedback...i hope the side effects continue to be minimal...and glad that radiotherapy was ok too.

Take care and thank you again for your response xx

The ODX report says that my recurrence score is much lower with Tamoxifen /AI, I am thankfull every day that I am doing OK with it. It requires me to visit the gynecologist a little often for check ups, that is important too.

All best, xx.

Hi
Im getting the Oncotype via the NHS which I was grateful for and my consultant said she has a lot of faith in these tests. So fingers crossed! Just a shame they have to ship the specimen all the way to California for this! I’ve just read up and the Prosigna seems a very thorough test so hope you get some good news! 
keep me posted xx

Hi!

I got my results back today and sadly it now means i'm heading down the chemo path! My socre came back quite high...Just trying to take it all in and process it. I am so grateful that there is treatment available and actually feel good that we now have a plan in place...It just wasn't quite what i was wanting but just need to get my head into a good place, process and regroup then try and tackle it all head on! Positivity and one day at a time!

Have you heard back on your results yet? When do you think you'll hear? Keeping everything firmly crossed for you...and hope you don't have to wait too much longer, the waiting is the hardest!

Take care xx

Hey  - sorry to hear that your news wasn’t what you were hoping for. The more I have read about it all, the more I think that having chemo will rule out any doubts. I’m pretty sure I’ll be heading in that direction too. I’m hoping I will hear tomorrow and have lots of questions to ask them.
When they talk about pre-menopausal patients, where does Peri-menopausal fit into this? It’s all so confusing and conflicting. 
anyway, you now have a plan which is great and you can focus on getting through this next phase. Do you know what type of chemo you will be having, how long for and when it will start?
I feel like I’ve been waiting forever for these next steps. 
sending best wishes and positivity xxx