Not sure if this is the correct forum to post. Just wondering if anyone has had this done with any node involvement. I’ve been advised as their was tiny amount in 1 node (half a mm) that i now don’t qualify for the test. I wonder if it’s worth my while to push it as really would like to know for certain if chemo will be of benefit to me, any answers please x
Hi Melisa. I had a left mastectomy a year ago. The histology showed I had a tiny amount (1.1mm, so bigger than yours) of cancer on my sentinel node. My onc then suggested that I had more nodes removed, but as my surgeon was on holiday I had to wait a couple of weeks to have the surgery. In the meantime my onc suggested I have the onco dx test (he wasn’t put off by my node). I had more surgery and 9 nodes were taken which were all clear. Then my onco dx result came back - it was 8 which is low. So my onc decided that I didn’t need chemo or even rads. I am now on anastrazole for the next 10 years. Debbie x
I dont know if this is any help, Melia, but there was some research mentioned on here recently, that outcomes are no different for those with completely clear nodes or ‘tiny’ or ‘micro met’ involvement as you describe. Maybe that’s where your team is coming from, but maybe it would be good to clarify with them
ann x
Wow really Debbie, I was told yesterday I would need to fund this myself. This was by my consultant and meeting with oncologist in 2 weeks. In definitely going to push for it. Can i ask how many or what size your tumour was, and also yiir age if you don’t mind. They want me to have it due to my age I think mainly (38) but I really want this test first. I had 5 tumours but very small biggest being 19mm x
Thanks ann yes I’m going to clarify as can’t see why I can’t have it when others have with more node involvement. And that’s fine Debbie I’ve been called worse haha xx
Where u pre or post menopausal as know the criteria is different x
Thanks Debbie useful info in ready for them now if they say no to the test xx
Oh thanks Debbie I assumed you had it on the nhs xx
Hi Melia. I had a micromet in 1 sentinel node (2cm tumour & wide DCIS hence mastectomy). Because I had private insurance I had the Oncotype test which came back as 15 meaning chemotherapy would be of no benefit to me. My oncologist told me that had I been on the NHS they would have given me chemo which would have done more harm than good. I hope you manage to get the test. Sonia x
Thanks Sonia, this is what worries me they are pushing towards chemo but because it was so minimal what they found I really want the reassurance of this test. I don’t think they will give it on nhs as I’ve looked at the guidelines and o don’t have private health insurance x
Hi Melia. My oncologist who also works on the NHS told me that when he has people in my situation (on the NHS) he will often suggest on the notes that there were no micromets present as he feels so strongly about over treating patients unnecessary. Have you thought about paying for the test? It is my understanding that if you have a highly oestrogen receptive tumour (mine was 100%) then Tamoxifen will be highly effective & your oncotype result is likely to be on the lower end of the scale. If I was in your situation I would do everything I could to get the test done. There is also another test (I forget the name) which is done in this country & is cheaper which you may want to research? S x
Hi!
I believe my nhs hospital automatically onco test!
I have just had an axillary clearance as a micromet was found on my sentinal node! My decision for peace of mind!
I am 57 had a grade 2 er+ her 2 - ( 3cm) lump removed with clear margin. I would like to avoid chemo…I know I will have radiotherapy and tablets for 10 years!
In a lots of countries micromets are classed as negative.
They think the biopsy or surgery splashed the micromet onto the node!
Sandra x
Sandra that didn’t even cross my mind about it coming from the surgery with it being so small that could really be the case. I’m still awaiting a meeting with the oncologist to discuss options. I spoke to my nurse yesterday and she said they have still not decided if I need chemo or not so therefore if they are unsure surely this test should help them decide. I know my age (38) is a big factor towards them probably wanting me to have it. I really don’t want to be left in a position where they say it’s up to me as I don’t know how i could make such a decision! I will look at the nice guidelines so I can go in prepared. Thanks x
Also I am er+ they said 6/8 So tamoxifen for 10 year. I’m her 2- grade 2. 5 small tumours largest being 2cm x
I didn’t like the choice I had to make either! My consultant/surgeon was going to refer me to oncology as there was no firm conclusion made at the meeting!
I chose the axillary clearance as I didn’t want to question myself in a years time!
I believe when it comes to it you will find it easy to make the right decision for you!
Ask them if it was a relation of theirs what would be their recommendation be!
Good Luck
Sandra x
I just had the results of this test at had a high oncotype score so Chemo is a certainty for me now. I was surprised by this given the high oestrogen receptors (7/8). From what I was told, this would have been the recommendation given my age (33) and grade 3 tumour. I was very skeptical about the need for chemo, however knowing the risk of recurrence is high, given the score, I am mentally armed to undergo this part of treatment. I was lucky to have clear lymph nodes otherwise the test wouldn’t have been available to me.
Wandenstrong I bet you feel relieved in a way though that you know now and you have had the reassurance of the test to know it’s the correct treatment. I’ve been to hospital today sandra for my boob pumped up ( don’t know if that’s the correct term) and I asked my nurse and she said if it was her sister she would be saying havw the chemo. I’ve also found out today that a couple of the tumours were definitely grade 3 so that definitely rules me out of the onco testing now. I’ve looked at nice guidelines. Still going to ask my oncologist when I eventually get my appointment but I’m pretty much prepared for having chemo now xx
Hi Melia!
At least you know which direction you are going in now! I have got to wait another 3 weeks for my answers. I can’t stand the waiting! Let me know how your onc appointment goes.
Take care
Sandra x