Anyone else not offered oncotype test?

Hi Sowa,

I'd like to follow this thread to learn more as I'm starting this journey with the same diagnosis.

I have been advised I need a mastectomy of right breast (only told Thursday, this is pretty fresh news and I'm positive 50% of the time, terrified the other).

They said from the MRI, my lymph nodes look 'unremarkable' (how rude!) But they'll remove 3 of them during the surgery and test them whilst im under. They mentioned removing all of them if anything looks a little odd within pathology, they'll do all of this in one op plus reconstruction.

They have confirmed I will be on hormone therapy for 5+years but cannot tell me what type yet until the operation and they suggested a few rounds of radio. The mastectomy is enough of a shock but I want this done and dusted to know next steps and prepare for what to expect.

I'd like to follow this thread and see what this oncoptype test is, it's not anything I have heard of or had mentioned. I'm in the South East.

Glad the healing is going well, sending you my thoughts and best wishes.

Hi ElBread

I’m sorry you’re also going through this. It’s pretty scary isn’t it? I think in this instance ‘unremarkable’ is good lol. Now that you’re aware of the oncotype test you can mention to to your breast team. I wish I’d known about it sooner. I have read on here that it costs the NHS £3,000 so maybe that’s why they don’t offer it to everyone. Can’t put a price on health though. 
Good luck with your surgery and thanks for your well wishes. I hope it goes as well as mine did x

Consuming scary! It has been a constant worry for 3 weeks since finding out biopsy results and MRI results... in that time I was convinced it had spread. Now I know it is contained in one breast, I am super grateful to catch it early but recurrence is already playing on my mind, in other parts of my body? The other one? 

I'm 35, I flit between worry, anger, disbelief and then overwhelming strength and determination. I do focus on the positive, I can see this treatment will remove it all and I am very lucky to be in this position.

Now I know this test exists, I'll ask about it and let you know, i agree- the expense should not be even be considered as a factor not to offer this to everyone. I can't have years of worrying about it turning up somewhere else. I'll let you know what they say, and if they provide any information on criteria: we all like a checklist to follow! 

Best wishes and thank you for this post, its good to know something out there has been designed to pre-empt recurrence probability.  X

Hi Sowa, if you Google NICE oncotype, you will find the criteria for the NHS to offer the oncotype test.  Not everyone is suitable due to cancer type and risk profile.  Maybe speak to your BC nurse about why you were not offered the test x

Hi Gardinia

Thanks for the info. I’ll have a look x

Hi, I paid just over £3k for my test as not offered at the hospital I am under, west Midlands, I defo was helpful for the oncologist to decide if chemo was needed

I would ask if it would be helpful in your situation & if so if it can be done 

Best wishes, good luck x

Thanks Kitty1. I had my surgery five weeks ago and thought it would need to be done pre op? I would imagine it would be too late now but I’ll certainly ask. I have my appointment with the oncologist on 21st so I’ll ask then. 

Hi Sowa

I wasn't offered the test because my lymph nodes were positive therefore chemo was needed regardless of test. 

Xxx

Hi I  believe they wait for results of the operation.  I only found out about the test from reading this forum.

I had 2 positive nodes and my hospital did the test.  My score was 17 so they said I did not need chemo  I am 63.  I think they take all different results when considering treatment