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

Hello everyone, so my consultant has sent off my samples for the test but I’ve been told it will take 2 weeks urgh! It really does make me worry the more I read about the data being mainly post menopausal. I asked my breast cancer nurse and she said that due to the node involvement they would still be able to use the test. I think that if I’d been on the NHS route they definitely would have just given me chemo. So now more waiting. I haven’t read about the different types of chemo yet as it all sounds scary. However like you guys you then worry that if you don’t have it what will happen in the future. I hope you are OK and that you really do have minimal side effects xx

The waiting is the worst part....so hard....try and keep yourself busy and i'm keeping everything firmly crossed that the result is low and that you feel happy/comfortable with the next treatment plan. I figure the more info they have on the tumor the better as they can make more informed decisions..so i do think it's worth doing the test if you can....Mine was sent off late on Friday night and my oncologist called me 13 days later on the Thursday morning. Really hope they get back to you soon. Look after yourself and let us know how you get on. Sending positive thoughts your way. xx

Hi again,

Thanks for your message.

Firstly regarding Oncotype they only had 5mm to go off. And it was too small to measure so no score and when that’s the case the decision is no to chemo. So maybe I was unlucky in some ways that if I had more I would have had an actual score.  My Surgeon was shocked at the recurrence given margins all clear minimal IDC found and taking Mx route. This latest one was picked up following annual mammogram which was clear but ultrasound showed enlarged lymph node on side of mx. Got biopsy, cat scan and MRI. Would advise all if you have had an MX ask for an ultrasound every year or when you are followed up. This is because mammograms only check the good breast and nothing is checked for the breast you had surgery on. If this wasn’t done I would have been carrying on as I had no symptoms and when surgeon checked nodes in physical exam there was nothing felt! 

I am pre menopausal and age 50. I don’t have chemo treatment plan yet waiting for this when my pathology is back. In ways I think having a high score protects you better as you will have left no stone unturned. I don’t think the pre menopause  status affects the result, it’s just that maybe it is that we have oestrogen and so they apply a stricter scoring if that makes sense. 

Think when there is no decision it’s a lot easier in ways as it leaves no option. But v hard to get your head around it mentally.  When do you find out re chemo plan?

best xxx

I meant to ask if there was a lymph node involvement did they suggest full axillary node clearance? 

Also it’s very hard to wrap your head around chemo but think of it like taking all the medicine at once and in 6-8 months time you will out the other side! Also there is great information on cold capping and products that can help as for me I would do anything to keep my hair. Scariest part! Once you have your plan and get started I am hoping it will get easier xxx 

Hi!

Thanks so much for your message. That's interesting that they don't check the boob you had the op on..thanks for the heads up on that. You would think they would routinely check both?? I'm so sorry you're finding yourself back here again but glad that there are still tons of options for you. When are you hoping to get your results back? Have you gone privately? Really hope you get your results back soon.

I was weirdly worrying about a low score and the decision being put back on me so i totally agree that when it's pretty clear and definitive it weirdly feels a bit more reassuring??..obviously i didn't want the score to be as high as it was as i really don't want it to come back but now at least i know i'm chucking everything i can at it...and that chemo will be of benefit and totally worth putting my body through. 

I didn't have lymph clearance as an option - they only ever took 4 lymph nodes out when i had my lumpectomy as from ultrasound etc my lymph nodes all looked fine so they just took 4 sentinal nodes and then biopsied those and then sadly one came back with cancer...it was macro metastasis. They were still unsure how effective chemo would be so i went down the prosigna test which i had done privately and from that it came back pretty high (62) so chemo is definitely going to benefit me...I start on the 19th March. Have my port fitted on Monday...i'll have 3 rounds of EC and then 3 rounds of Docetaxel...debating whether to do cold cap but think i'll give it a go for the first one and see how it goes! My hair is already super fine so i'm not holding my breath!!!!

xx

Hi there! 
I am getting results next week so the big thing for me is to find out what grade it is which will determine the strength of chemo but I reckon they will go with heavy chemo given it returned so fast. Interestingly my surgeon said that even if the enlarged node came back benign he would take it out. So worth checking this too for you, but expect there’s a good reason they are not doing the clearance. I always think these forums are great for helping get more info to discuss with medical team.

On the mammogram they don’t do the other breast as the tissue is gone but for me that is the side that is the most dangerous so the way they can check is looking for enlarged nodes. I do think looking at the forums in the states they have way more tests done and things like cat scans can give more comfort and protection.

 
It is a lot to get your head around with chemo but will be worth it. I don’t fear the operations as much as I do losing my hair. They feel like a walk in the park in comparison! The good news is that there is a lot of info on the Breast cancer now forum on cold cap and lots of positive results. Also worth booking in a consultation (free) with Daniel Field who specialises in products to make the paxman more effective. https://www.danielfieldclinic.co.uk/
 There is also a website that you can input your chemo drugs in and it will give you the odds for keeping your hair and D.Field will also advise you on this. Like throwing everything at cancer I sm going to throw as much at keeping my hair! Who knows if it will work but the cold cap also is very good for regrowth too apparently. Oh and one more bit of good news fine hair works well with the cold cap as it can get through better! Glass half full! Best of luck with the start of treatment sooner it starts the sooner it’s over.  Xxx

Here is the link I mentioned https://coldcap.com/scalp-cooling-outcomes-calculator/

Hope everything goes well xx 

I’ve just been reading your messages, good luck with the chemo. I’m desperate to know my results so I can plan the next bit of my life! I had all my lymph nodes removed so I don’t even know if that makes a difference. Let me know how you get on with the cold cap, I’ve got long hair but superfine too! Sending you a big hug H x

I’ve been reading all your messages and I just wanted to say good luck for your next stage of treatment. Thank you for putting all that information up as well regarding the cold cap. I’m waiting for my pro signa test to come back so not sure which way it’s going to go. I had 2 tumours one invasive lobular and the other ductual. They did find out before that I had a lymph node cancerous so I had a full clearance at the same time. I think that if I had been going down the nhs route they would have just offered me chemo. Part of me worries though like you i want to throw everything at it and get rid of it once and for all. Sending you a big hug H x

Oh you're amazing! thanks so much for all the info! Super helpful.

Weirdly i wasn't too worried about losing my hair, it's never been my best asset!!!!!!... but now it's getting closer and a little more real i'm definitely worried about how i'm going to react when it starts thinning or. if i get random patches....but yes like you say i've read that actually cold capping is good for fine hair as it can reach the scalp better and have also heard about regrowth so i'll give it a go first time and see how we go! I"ll keep you posted. Thanks so much for all the info and the websites, just had a look at the calculator and will take a look at the Daniel Field website too...amazing, thank you so much. 

It's sad that we're all here on this forum but i'm just discovering what a lovely, supportive community it is   

Sending you masses of luck for the results next week. Hope you can have a lovely weekend this weekend to distract yourself and hope they come back soon and that there is a good treatment plan in place for you whatever the outcome. Thinking of you.

xx