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Ocnotype DX test

24 REPLIES 24
Jencat
Member

Re: Ocnotype DX test

Ann, reassuring to read your message to Rosie as I'm finding it really stressful waiting for CT scan results xx

ann-m
Community Champion

Re: Ocnotype DX test

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 x

 

Jencat
Member

Re: Ocnotype DX test

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

mrsorangecat
Member

Re: Ocnotype DX test

Hi Rosie, really pleased for you and your low score. I agree, i almost drove myself crazy waiting for that result to know if id got to have chemo or not. I was terrified at the thought of chemo but a friend of mine had the chemo and her experience wasn't as bad as we both thought it was going to be, she had great support and meds to combat side effects. She's doing well now too. She's a strong lady xx
Jencat
Member

Re: Ocnotype DX test

Rosie, I'm so pleased that you've got your results and you can move forward now you know your treatment plan xxx

rosietd
Member

Re: Ocnotype DX test

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!).

mrsorangecat
Member

Re: Ocnotype DX test

Ahhh, It's really early days for you Rachy, I had my mastectomy in December, rads in March. I think i started to feel more like my old self last month, July time, so 6 months after surgery maybe? I was still having some nerve pain after rads and that got me down a bit but Amitriptyline prescribed by GP has sorted that all out and i feel really quite good now. I hope i don't sound too pollyanna? Iv definitely had some dark days and cried for Britain but i can honestly say I'm all right now 😀 xxxx
rosietd
Member

Re: Ocnotype DX test

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.

 

xxx

ann-m
Community Champion

Re: Ocnotype DX test

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. 

ann x

Rachy65
Member

Re: Ocnotype DX test

Hi Jencat,I'm hoping it doesn't dominate my thoughts too hun..I've become unrecognisable from the woman I was before,confidence and everything gone..but hoping I get it back xx
Rachy65
Member

Re: Ocnotype DX test

Aww thanks for that. .you have just given me so much more positivity. .I keep thinking daft things like is the onco accurate because of the size etc!..bit they tellnme time after time the size hasn't mattered. I think in the days before the onco they used to see the size as more as a prognostic indicator and we Def would have had to have chemo..How long after surgery did you start to feel yourself again hun? X mine was 2 months ago x
mrsorangecat
Member

Re: Ocnotype DX test

Hi Rach, no i didn't to be honest, i just put my faith in my surgeon and after my mastectomy he said its all gone now, we'll do some rads as a belt and braces approach then go and enjoy your life.... I didn't question any further! Xxx
Rachy65
Member

Re: Ocnotype DX test

You sound so positive hun,thanks so much for that...can I ask..did you ever discuss the size with the oncologist? It's always the size of mine that freaks me out xx Rachael xx
mrsorangecat
Member

Re: Ocnotype DX test

I think going back to work helped me loads, I've been back since Easter and I'm too busy to worry 😜 then I sleep like a log 😂. You sound like a very positive person Jen. Plan some nice things to look forward to and treat yourself regularly 😁 iv got a fantastic collection of lipsticks and nail varnishes now ha! Little things to make yourself feel good.... Take care and if i can help with anything please let me know Hxxc
Jencat
Member

Re: Ocnotype DX test

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

mrsorangecat
Member

Re: Ocnotype DX test

Thanks Jen, do u know there's some days where i don't even think about it now?! Never thought that would happen when i was first diagnosed. Just seems like a bad distant dream if that makes sense? I feel fitter than iv ever been now, back at gym 3 x weekly, walking every day in my lunch break and iv lost a good stone. There is life again after honestly xxx
Jencat
Member

Re: Ocnotype DX test

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

mrsorangecat
Member

Re: Ocnotype DX test

Hi Rachy 😀 yes, i suppose it's in the back of my mind, but i just think as i had a mastectomy it's all gone now with good margins and i also had 15 rads for good measure.

I paid for access to my medical records last week and they sent me a cd with my MRI on it. So, i sat eating my brekkie looking at it!!! Bit macabre i suppose. Very interesting though, more strandlike, than mass like. I think we could worry ourselves to death if we let it, I'm just getting on enjoying my life, taking the Tamoxifen daily, checking the other side monthly and counting my blessings 😀. Take care hun xxx
Rachy65
Member

Re: Ocnotype DX test

Hi Mrs orange cat. .hope you are well..I notice you had a large lobular like my 6.5 cm, I too had low onco and no chemo. .disc you ever worry about the size of yours? ..the docs have re assured me that the size makes mo difference . Rachael xx
Debbie61
Member

Re: Ocnotype DX test

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

Mumoftwo
Member

Re: Ocnotype DX test

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

mrsorangecat
Member

Re: Ocnotype DX test

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

Munchkin
Member

Re: Ocnotype DX test

Yes, I think you need to have invasive ductal cancer and be between stage 1 and 11.

Optimissy64
Member

Re: Ocnotype DX test

Hi Munchkin

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

Munchkin
Member

Ocnotype DX test

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.