That's great news Rosie & thankfully you do not have that 'borderline' decision to make.
I remember feeling the same about all the investigations. I found waiting for the MRI result the most stressful & sort of felt like I didn't want to go, but afterwards I was so glad it had been done as I had the reassurance of knowing that everything was done to get most accurate diagnosis to inform treatment plan.
You're right, there is criteria for the DX test as to whether it's offered or not. There is info on the main bcc site here.
Ann, one said she always expects the cancer to return. In fairness she said that before I got my diagnosis and I think she's had a few false alarms. The other person I don't know very well and didn't even know she'd had bc until recently. She seemed a very upbeat person. However when I spoke to her a few days ago she said she values each day (fair enough, we should all do) and doesn't plan far ahead unless she has to! Fortunately I did speak to a third person who made me feel much better and was very helpful! xx
Forgot to mention - I spent ages trying to second guess what aspects of the tumour would drive the score - Grade, size, etc. - but I really couldn't work it out. The test analyses 21 genes, so it is totally bespoke to your tumour (hence my failure at second-guessing!).
Slightly late to this thread. Yes I have had an Oncotype DX test done on a sample of my tumour. From the initial needle biopsy, my medical team thought I had a 2.5cm Grade 1 tumour, but after it was removed, it turned out to be 3.5cm Grade 2. Consultant said it was borderline for chemo, hence the test. If you do a Google search on it, you will find details about the test, plus how the various scores are ranked.
I wasn't due to get the result until Sept 5th, due to my consultant being on his summer hols next week (frustrating) - but he called me last night to say that my report was back and my score is 14, which falls into the Low category - great news. So I am now headed for hormone therapy treatment and possibly ovary removal (I would prefer this to the monthly injections).
I have to say that the wait for this test result has been one of the most stressful parts of this whole cancer journey so far - I came close to telling them to cancel it three days ago! - but now I have the result, I am really glad it was done. Think it can only be done for certain types of tumour (Community Champions - please correct me if I am wrong), but your medical team can tell you more.
Hi Jen & Rachy,
Honestly, loads of us get back to normal life after this & I'm surprised Jen, that your friends have been a bit negative about it all. I've known several friends as well as some at work, who are many years post diagnosis & are fine.
Not so long ago, I had a lovely chat with a colleague at work. She told me she'd had bc treatment including chemo 5 years previously when she was 40. I'd worked with her over the past few years & I never knew. She works full time, is never off sick, looks fab & has just passed her 5 year anniversary.
Thank you, that is so lovely to read because I've some friends who have had bc and although they're fine now, they made me feel quite negative in their attitudes. It felt like even though they'd had bc years ago, it was never far from their minds and I'm hoping I won't feel like that. I know of course I will at first, but I'm hoping over time bc won't dominate my thoughts the way it does now xxx
Lovely to read mrsorangecat, that you're 'out the other side', enjoying life and sounding so well and positive. Encouraging for the rest of us not starting treatment yet xx
Hi Munchkin. I was diagnosed April last year with 2.2cm lump in left breast which was IDC. Was going to have lumpectomy but after scan they found something suspicious behind nipple so I had left mastectomy. I was ER+, PR+ and Herceptin negative. They hadn't been expecting to find anything else, but when my path results came back there was a tiny bit of cancer on my sentinel node (if it had been any tinier it would have been classed negative - don't know how that works!) so then it looked like I would be having chemo instead of just rads. My surgeon was on holiday and my onc wanted me to go back to have other nodes taken out but while waiting for my surgeon to return he said he'd like me to have onco test. My score came back at a low 8. When my surgeon got back I had more surgery and 9 more nodes were taken which were all clear. So my onc decided that I would not need chemo, and he also decided against rads. So now I'm on anastrazole for the next 5 years at least. I was also having monthly injections of zoladex to suppress my ovaries as I'm peri menopausal, but I had my ovaries out 3 weeks ago so I don't need injections now. So, the onco test spared me chemo so it's good that you're having it. Hope that helps (bit complicated!). Sending hugs. xx
Hi Munchkin, I also had the Oncotype test done as I had a 2cm, invasive ductal grade 2, no lymph nodes, er/pr+, her2-. My result came back as 28 which is the higher end of intermediate. I was sure that chemo would be recommended but my oncologist felt that any benefit would be outweighed by the risk. But something else which may have been influential in the decision is that mine also came back as er-. My hospital therefore tested the hormone status again and it was definately positive ( the sample sent must have not had any receptors in it) so I can only assume that my Oncotype score was higher as it would be assumed that an er- cancer would not benefit from Tamoxifen which I believe is taken into account when calculating the score. Therefore I just had rads and have been on Tamoxifen for almost a year now. The Oncotyoe test is a great tool for helping to make such a major decision. I had also had my long hair cut to shoulder length in anticipation of having chemo and I sat and sobbed in the hairdressers chair as she cut it, everything was just so overwhelming at that point. Hope your score comes back low. Michelle xx
Hello Munchkin, I was borderline for chemo, stage 2 invasive lobular tumour, ER and PR positive, no lymph nodes affected, HER2 negative, however as my tumour was large, 7.5 cm and I'm young at 44 they did the oncotype test on me. (I had a single mastectomy in December).
Yes, you can't quite believe it has to go all the way to America for this test - sunny California as well. I remember joking with my husband saying that I'm glad iv been to USA as I'd be pretty peeved if my tumour got there first! 😂
My result came back as a 9 which was classed as low risk of recurrence, 6% apparently and chemotherapy was deemed to be of no benefit, so I was extremely fortunate to have this test available to me. When I met with the Oncologist he confirmed no chemo and I started radiotherapy and Tamoxifen this week. If you have any questions, I can get out the report they gave me?
I also had my hair cut short in preparation for possible chemo, everyone loves it so I shall keep it like this as its so easy to get dry! 😄
Big hugs Hxx
I have heard of this - I believe they look at the cancer cells in the tumour that they removed in order to decide whether you would benefit from chemo or not. I asked my oncologist earlier this week whether I had had this test and apparently they didn't send off for it for me because it was apparent without this test that I did not need chemo. (Hope they're right!!!) I had lumpectomy with clear margin and no lumph node involvement, and am ER+ too.
I would be reassured actually that they were doing an oncotype DX test, so that if they say you don't need chemo they can be absolutely sure, and if you do need chemo you can be assured that it is necessary. I wonder if Grade, Stage and type of cancer influences whether they send off for the test or not? Hope all goes well for you. x
Hi everyone, has anyone else heard of this test or had one, I got results back after my single mastectomy that no more cancer cells were found in breast tissue after tumour was removed and lymph nodes were clear, I was told no rads just chemo! Then a day later nurse called back and said they had another meeting discussing my results and are sending them off to America for this Ocnotype DX test, to find out if chemo would benefit me, because I am ER positive and nodes clear they can put me forward for it, have googled a lot about it, to try and get more info! They don't carry this test out in the UK! Go back to see oncologist at the end of the month to discuss their findings and what treatment plan, I know for sure I'll be on tamoxifen! More waiting again for results, getting myself prepared for chemo though, got haircut short yesterday so it won't be a shock! As my hair is long. Would love to hear from anyone regarding this test.Xxx Ps..I have invasive ductal cancer grade 3.