Oncotype DX test.

Hi

Nice guidelines

This is what I found online with regards to NICE guidelines.  I was diagnosed in one breast in June 2017 before the DX test was really around (it was around, but certainly not being used at my hospital at that time, it was 2018 that it became the norm).

I am wondering if it's because having BC in both breasts automatically suggest chemotherapy on some other NICE guidelines, whereas the DX test is for people who wouldn't normally have chemo. but it tests to see how ER+ they are.  For instance my ER/PR was 8/8 on normal biopsy, so automatically I was 'no chemo.' (although ER/PR- on the larger amount of DCIS I had) -  but it could have been completely different on the DX test on the tumour.  Whereas with you, they are actually saying have chemo. so perhaps it's not being offered to see if you need chemo. if that makes sense?

Hope my thoughts help, but obviously these are just my assumptions rather than actual knowledge.

Best wishes,

Thank you for your response.  What you say about cancer in both breasts does make sense.  I suppose what I am trying to do is to make sure I don't have chemo unless necessary.  I read all the information I could find on the DX test so I am hoping that the results will give me a better idea of what I should do. Obviously if the results do point towards chemo then that is what I will do but I am the kind of person who has to gather as much information as possible first.  I don't think I would be happy with thinking what if I had done this or that without exploring every option.

Thanks again lesleyhelen. I will post again when dx results are here.

I'm guessing that having it in both breasts would disqualify you from thr Optima Trial? To be honest,  as someone who didn't want chemo either and statistically only had a4% gain from it,  I can say that I'm glad I did it.  It wasn't nice,  but it was doable, and managed well by my oncologist.

You haven't said the size of thr tumors as that,  along with if there was any LVI or traces in the nodes would mean chemo would be thr best choice.  X

Thanks for your reply.  Both tumours were lobular invasive, 1 was 25mm the other 32mm and both sentinel nodes were positive.  What you say about only having a 4% gain from it was also in my mind as I was thinking would all the chemo side effects be worth a small gain.  It is reassuring thay you say chemo was doable, its not even losing my hair thats the issue, I am more scared of reduced immunity, risk of infections etc.

I know everyones experience is different and am grateful for you sharing your experience.

Thank you. 

Hi there , the 4% gain was based on my individual details (27mm, grade 2, clear margins,  no LVI, 1 node) I am also 8/8 ER+ and 8/8 PR+, so on Letrozole for thr next 5-10 years.  You need to check https://breast.predict.nhs.uk to find out your statistics,  adding the two tumors together for size (it's what the consultants do!). These are only statistics, and don't include whether LVI is present,  which raises the risk a little statistically.  It will show the average gain from chemo though ( for 5, 10 and 15 years) which might help you  decide.  Being in your nodes would imply chemo should be given as it increased your chance of a recurrence,  as does a size over 5cm. The other factors I was told are TNBC, LVI present, grade 3 and stage 3. Chemo doesn't guarantee it's gone,  as some women have a recurrence anyway,  but it makes it statistically less likely.  Ultimately the choice is yours,  but it works best within a 12 week time frame after surgery.

As your sentinel nodes were positive are you having staging scans and axillary clearance first? Good luck with the next stage:)  It's a really difficult time,  and looking back wouldn't want to go through the emotions you must be feeling again in a hurry!! I really wanted to avoid it,  but didn't want to regret not trying everything either.  If you do go ahead with it then the Chemo thread is absolutely brilliant for tips on things le Evonail, mouthwash,  eye gel,  the list is endless and the support and humor was priceless:) Would you be having EC and then Paclitaxel/Docetaxel? You will be carefully monitored,  and get fast tracked if toy get an infection.  I went to A&E a few times for other things during chemo but never had an infection, and the only time my blood tests were a bit off was when I'd had hummus during the listeria scare and my liver result was borderline. The hummus not chemo did it! Xx

Hi 

I didn't realise that you had sentinel nodes affected.- this is generally an automatic guidance for chemo because it has started to spread.

Here's a link to the NHS predict tool where you can put your own information in to see the % benefits.  But, it doesn't take into account the fact it was in both breasts.

I guess the one thing to think about would be is if it did recur and you hadn't had chemo, how would you feel?  It's an awful decision to try and make and I do feel for you.

Hi London Mum. I had a sentinel node removed from under each arm but am not having any more surgery. Both tumours were grade 2 and ER+, 1 was PR+ the other PR- with vascular invasion. LVI was not mentioned.  

If I do have chemo it will be FEC-T followed by radiotherapy & anastrozole.

I have a chemo appointment on 18 March (think this is just a fitness check) I have come to terms with having chemo but just waiting for the Oncotype test to confirm that I have no other option.  I am not vain about losing my hair, getting a good wig will save me some expensive hairdressing appointments, but I am worried about losing sensation in my fingers as I sew and knit all year round. 

Thanks for your comments, every opinion is valuable to me at this time.

Hi Lesley.  I did use the predict tool which is why I was wondering about % survival rates with or without chemo.  I have come to terms with having chemo now, just waiting for Oncotype results to confirm whether or not I have any option.

First chemo appointment on 18 March (thinks its a fitness for treatment check) and Oncotype results will be available just before then so it will be decision time.

I can't believe I have something so serious as cancer as I feel absolutely fine.

The  thing which convinced me the most was changing the percentage into numbers.  The 4% difference changed it from 9 women dying  in 10 years (1/11) to just under 6 women (1/17). I know which group I'd rather be in!

Hi Lesleyhelen,

Having lymph node involvement doesn't automatically guarantee Chemo, my Surgeon said if the cells are strongly ER and PR positive in the nodes chemo can be avoided, in fact I had 2 micromets meausuring 1mm  out of 4 removed, and had no chemo.  They usually give chemo if the lymph nodes have cancer 2mm and above. I don't personally believe all Surgeons/Teams strictly adhere to the NICE Guidelines regarding this because I've read on this site ladies having chemo or clearance.