Onco type dx tests

dak2

Hi, I'm a newbie and had breast surgery last week for 16mm tumour, er+, 2 lymph nodes which are all clear, no more surgery which is great.
Next step is they recomend short course chemo,  radiation and hormone treatment.  They also said I'm a good candidate for oncotpye testing.  I would love some feedback from anyone who has had the test done, what the results were and whether the cancer returned,, and the cost, I believe the test is $2500 I'm not sure about chemo and thinking the test might be worthwhile investing some of our limited funds.
Any feedback greatly appreciated 

Ann-Marie

Hi dak2 welcome to the online network. I will be back in the office on Monday and can have chat with our policy team around this test to find out some more information for you. I will also see if I can find a member that may have had this test done. Let me know if there is anything else you are needing some information on.
Ann-Marie

Ro10

Hi @dak2 , I'm interested to see what feedback you get on this. I have heard about these types of tests but none of these were offered to me before I started my chemo. I know they aren't covered my medicare so maybe that's why doctors don't mention them, assuming people can't afford it. Ill be following this post with interest! ☺️

dak2

It's now suggested I have the prosigna test at $2900, yes it will be interesting to see what the responses are, I prefer to invest some money into the test if it means I escape having chemo!!

socoda

Hi dak2, I am Eo+ Pr+, Her2- and clear nodes and clear margins. I had a unilateral mastectomy which came back as a grade 1 cancer and also had a benign lesion next to the 2.7cm tumor. I have not had chemotherapy or radiation therapy but am on Tamoxifen to block the hormones.  I was offered onco testing and was told that I was at a low risk of my cancer recurring but that for $5000-00 I could have the tissue sent to America to determine how high the risks were of it recurring and whether I should have chemotherapy. I was given a less than 2% chance of recurrence without this testing. So  I asked why if my percentage was so low what benefit was the testing. It was explained to me that there were one or two factors that might push me from low possibility to medium possibility of recurrence. I then confirmed that if my chances were high that I would be given chemotherapy - correct!! So what if the results come back as medium?? What treatment is then offered?? The reply was honest and it stunned me because they said they didn't know what they would do!!! So I opted to not have the testing done. My breast tissue did not go on holiday - I decided I would go instead and I would take the 2% possibility and be quite happy with that. You need to weigh up whether or not it is right for you and the benefits if you can derive from it if you have the testing done. Wishing you all the best. Xx Cath

em_24

HI, I am also a newbie, diagnosed 5 weeks ago. I just had the oncotype DX testing done and received my results on Friday. It cost me $4500, but I chose to do it because of my age (24) and wanted to access as much information as I could. I also choose to because they were unsure if chemo would be beneficial because I have a grade 1 tumour, but had a small amount of cancer in 1 lymph node. It is a lot of money, but I personally wanted to know if chemo may be more beneficial than what they were thinking, as the risks of infertility scared me. 
My testing came back with a low recurrence score of 9, and only a possible benefit of chemo being 2%, so at this stage I think they believe the benefits of chemo will not outweigh the risks. But I am still not sure! I think it is hard to decide because depending on the results of the test, will show if it is worth it or not. 
That's probably not that helpful, but hopefully you can weigh up what's best for you xxx
Emma. 

Ro10

Hi @em_24 , I am in a similar situation to you although my cancer was grade 2. I also had early signs of it in one lymph node. I was told that without chemo, I had a 96% chance of survival and if I do chemo, I'll have a 98% chance. It was such a hard decision to make but I decided to do the chemo, knowing that I can stop at any time if it gets too much. My oncologist basically told me that the risks and benefits are equal so he was completely leaving it up to me to decide. If I hadn't had any children yet, my decision may have been different though as I know the chemo may make me infertile. We just make the best decision at the time and hope it's the right one!

em_24

Hi @Ro10, thank you so much for sharing that. Sounds very similar, as mine only possibly gives that small benefit... but I feel the same. I worry that if I don't do chemo, if it comes back at some point in my life.. I will forever regret not doing it and not knowing if that would have made a difference. So I still feel really torn, and my oncologist said the risks of getting leukaemia/infertility from chemo are not worth it with only a small possible benefit. I am finding that everyone has different opinions. 
Yes we do. thank you for sharing that xxx

Ro10

@em_24, deciding to do the chemo was one of the hardest decisions I've had to make. I was faced with 2 options - don't do the chemo and accept the risk that the cancer had spread beyond the one lymph node and potentially into my bones or do the chemo and accept the risk of serious side effects like leukaemia. Both decisions come with major risks and I still wonder if I've made the right decision. I think what made me decide to do the chemo was that I'm still so young and have so much life to live and if my cancer has spread then hopefully the chemo will kill it and if I didn't do the chemo and my cancer returned elsewhere in my body, I would always be saying I wish I'd done the chemo! Aaaah! such hard decisions to make at such a young age. At 24, you should be loving life and having fun, not dealing with this awful stuff!

em_24

@Ro10, I can't imagine how hard that would have been. The doctors keep saying that because only a small amount had spread to only 1 lymph node it is highly unlikely that it could be anywhere else... but it was highly unlikely that I would get cancer... so that means very little to me. They are saying because of the cancer being highly er+ that tamoxifen and zoladex would be the treatment plan, rather than additional chemo, but I have kind of leant towards chemo... to make sure I have tried everything possible for it not to return... it is just so so so hard to know what to do, especially when the professionals are recommending against chemo... 
Ah yes I know, shouldn't we all though, so so unfair xxx

Ro10

@em_24 I just inboxed you so I'm not hyjacking someone's thread