Oncotype DX testing

caitblack

Hi. I was diagnosed with her2 negative oestrogen and progesterone positive LC in early Oct 24 and have had two surgeries to remove a 9cm tumour and lymph clearance with one lymph node having 9mm of tumour in it.
Im planning to do oncotype dx testing to inform if I should do chemo and wondered if anyone had any tips for dealing with results or advice re the test? 

Cath62

Hi @caitblack,  what is your oncologist advising? I had a small tumor caught early but no lymph involvement. My cells were grade 3 but I was stage one at that time and had chemo and radium. My advice is to throw everything at it.  Some people worry about chemo but I didn't find it too bad. If you want the test go for it, I am sure others will jump on to talk about the test. Best wishes for your decision.

StrongCoffee

I had a 35mm HR/PR+ IDC with no node involvement. My Ki67 was really low, which was one of the reasons my Onc suggested the testing. I had EndoPredict which is thankfully now a bit cheaper as Medicare now covers part of it (yay!!!). For me it was $3k but worth it because it meant less time off work in the end.

I did some of my own research on what the numbers would mean so that when I got the results I knew exactly what I wanted to do. I had decided if I was within 2 points of the 'cutoff' I would still get Chemo as the data showed the risks started to escalate slightly at that point. But that was just for my peace of mind. My results were well away from the cut-off, so I didn't have chemo.

Has your oncologist suggested this test? Do you know what your Ki67 is?

koalalala

I’m trying to decide if I should have this testing. I asked oncologist about Endpredict but she wants me to do oncotype DX. Says it’s the only test which can indicate whether chemo is needed….. my research says Endo does it as well. I’m confused…. 

iserbrown

https://myjourney.org.au/article/2181

@koalalala

The link above explains different types of testing 
Your Oncologist has a preferred choice.  Hopefully reading the above will give you clarity 

Best wishes 
Take care 

arpie

SO Sorry to see you both joining us here, @koalalala and @caitblack ... but you've found the best place for support from those who fully understand what you are going thru, as we've been thru it too.

You can use the 'search' function to check out specific terms ... (click on 'NEWEST' in the 'sort by' function.)

I was lucky & my BC was found 'early' and was small enough not to require chemo - so didn't need the test done re having chemo or not.   If your Onc has suggested Oncotype dx testing, maybe it is because it is more accurate?   Have you had surgery/biopsy that indicates what Stage your BC is, or as @strongcoffee has asked, your KI67 score, @koalalala?    You can read up a bit about it - @Julez1958 has explained it in easy English ...  here: https://onlinenetwork.bcna.org.au/discussion/comment/225035

In the meantime, check out this post that has a lot of info on the forum & different areas you may like to explore - your art & craft, garden, furkids - we even have some funny bits, to give you a laugh when you need it! 
Down the bottom, is a link to some 'tick sheets' where you can 'self assess' your physical & mental recovery as you go along xx Sometimes it is easier to print off the sheets & fill them in for your 'team' than to talk about it  
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-new-online-network-members#latest

take care & all the best with your decision making 

StrongCoffee

@koalalala that's really odd that they only suggest the Oncotype DX rather than EndoPredict. When deciding to test, I researched into both, including comparisons and both seemed to offer the same level of accuracy. EndoPredict, from memory, is slightly less 'broad' in what it tests for but the stats on its accuracy in determining chemo or not are still just as good.

I recently saw that EndoPredict has an amount of Medicare rebate with a very narrow criteria (this is a recent change) and it looks like, from googling, that OncotypeDX should too, but I can't find details on how much. Perhaps it qualifies for more rebate and this is also what your oncologist is considering.

I would definitely talk to your oncologist more about their reasons for their choice. I did my testing almost 4 years ago, so their may be new information now.

Wishing you all the best. The fact that they are recommending this test is a great sign, as it's not even an option for so many types of BC.

SC75

Hi! I can completely relate to your situation. I was diagnosed with lobular cancer in September and underwent a bilateral mastectomy in November. During the risk-benefit discussion regarding chemotherapy, I was told that I had only a 1% benefit from chemotherapy and that the oncologist's team only recommends proceeding if the benefit is at least 3%. This made my decision quite challenging.

The 1% figure is generated based on breast cancer in general, which often focuses more on ductal rather than lobular cancer, and it doesn't take my tumor's unique biological characteristics into account. I was also informed that it was unlikely my small tumor would have spread to my lymph nodes, yet one was involved, which surprised the medical team.

I didn't want to dismiss chemotherapy without fully understanding my options, so my surgeon suggested the Oncotype DX test. Unfortunately, I do not believe I will get any rebate from Medicare, but I plan to look into this further. The test cost me $5,000, and I'm currently awaiting the results. I'm feeling very torn; on one hand, I want to avoid chemotherapy if it's unnecessary, but on the other, what if I am in that 1% who would benefit? 

Thank you for sharing your experience; it helps to know I'm not alone in this. I wish you clarity and strength as you navigate your own decisions! I would love to hear how you progress with your decision and results. I will also happily share mine when I receive them which I am hoping is before the 22nd January which is when the oncologists want me to start treatment whether it be chemo or straight to radiation.

ElsieJ

I met the criteria for Oncotype Dx testing - it is not available for all types of breast cancer. It was the only test discussed with my specialists but I had knowledge of the test from many years ago so happy to go with this test even though it cost me $5000 with no rebates. 

It looks at your specific cancer tissue and determines the risks for you as an individual. 

I did not want to have chemotherapy if there was not going to be any benefit for me nor did I want to have the risk of side effects from chemotherapy some which may last for years (eg peripheral neuropathy).

My score came back very low so chemotherapy was going to be of no benefit to me and my recurrence risk is also low. Hormone therapy alone was the recommended treatment for my specific cancer. 

I think there should be funding for more women to have the option to have this test as surely the cost of chemotherapy and treatment and hospitalisations as a result of chemotherapy side effects must outweigh the cost of the test.

I recall seeing an article last year that the UK was going to fund this test for hormone positive post menopausal women - maybe the group most likely to be determined to not gain any benefit from chemotherapy.