Cancer recurrence after low score Oncotype DX

hi

I've just been reading your profile, wow, you really have been through it, although I did chuckle at the idea of you and your twin sister being treated together and the doctors warned not to mix you up, what a nightmare, but sort of funny. 

I was just thinking how I'd start looking to help you and to be honest this is probably a question for the secondary breast group. ?

Statistically we all have a 30% chance of developing secondaries. I was scanning the Twitter feed of Bonnie Fox, who I'd met in parliament when we were campaigning for Kadcyla. With all the irony in the world she found that Kadcyla hadn't actually worked for her but she's on another combination at the moment and seems well. 

Thing is you might be given a statistic of 1 in 10, which is low but you can still be that 1.

I couldn't help myself looking up stats for the likelihood of being 'upgraded' to invasive cancer after my biopsy revealed 'only' DCIS.

It was 30% but actually the consultant had carefully and gently explained to me that due to size of my tumour, or suspicious area, 65mm, and we knew it had been there since 2012 but hadn't been reported, I was more than likely to be in that 30%, my own risk was more like 99%.

The post surgery pathology showed Her2+++ and I was whisked off for whole body scans and chemo proving he was right. 

I'd had pretty much a stand up fight with one of the breast care nurses who told me off for being over anxious because I was 'only' DCIS and I wasn't urgent, when the hospital blurb said "we treat all patients as urgent" or some such. 

Anyway. I'm trying to remember what was said in my path report about something not being able to be ruled out, might have been lymphoma ...

I'm going to have a quick search in the secondaries group.

Carolyn

xxx

Hi Amanda,

I had OncoType DX with a low score, then EndoPredict with High Risk score!  I have taken an interest in others on here who have had OncoType low scores and there are a few with recurrences or secondaries. Personally, I don't trust the OncoType, I've read stuff written by medics stating their have been recurrences/secondaries with low scores. 

Would you mind me asking how long it is since you had your first Cancer and Onco Test please?

Best Wishes.

Hi Carolyn, thank you so much for your response, apologies I have been away for the weekend so I have not had an opportunity to respond. Despite the Dr’s efforts they did mix us up in the Radiotherapy dept...  luckily my sister noticed and alerted them... she would have her treatment first then I was immediately afterwards!

Good suggestion about posting in the secondary group-thank you.

I completely understand your point regarding statistics! I think most of us believe that we will be in the % group!

Interesting to hear about your campaign for access to treatment for secondary cancer. Hope you are feeling fit and well.

warm regards 

Amanda

Hi Peterawake. 

Thank you for sharing your story. I am looking to gain more understanding about this and hoping I will find it within the secondary group.

i was diagnosed on the 20th June 2017 and my Onco test results were given to me approx mid September 2017.

my best regards 

Amanda xxx