Well I had my meeting with oncology and was basically refused oncotype on the basis that under the NHS guidelines I didn’t meet their criteria for paying for it. I specifically asked if this was a local area criteria and he said no, NHS nationwide guidelines. I said I wasn’t happy because I know of at least one person with a smaller tumour than mine, same grade getting oncotype (you know who you are ?) and he said maybe some areas are bending the guidelines.
So, he said that because my tumour is under 2cm (it’s 18mm, 19 if you include DCIS) and “only” a grade 2 I can’t have it. If it had been 2 cm + of any size grade 3 I would have. If you have had or are having oncotype and are willing to share your stats please would you. I feel very unsettled by the decision to just refuse.
Hi Strudel,I think age may be a factor in the equation .I had almost identical diagnosis to lady diagnosed at same time as me ,we both had our ops same day same surgeon ,got our results at clinic on same day , both clear nodes under 2cm,she was offered test ,I wasn’t ,she is 10 years younger 51/41.She didn’t have chemo but had a week of booster rads ,I didn’t .
hi Strudel,
I wasn’t offerred it either, grade 2, smaller than yours, clear nodes, 55 at diagnosis. I’ve read somewhere that age is also considered on whether its offered. I didn’t even know about it before coming on here.
I was offered onco type testing I’m 41 invasive ductal carcinoma…hormone receptive…our trust send the cells after op to America…mine was 1.7cm came back as 13 which means I just need the radiotherapy…I went private for the op…and oncologist…having radiotherapy at rosemere at royal Preston hospital
I haven’t got personal input, since at grade 3 & HER+ I was always going to have chemo, but it’s worth looking at the NICE guidelines. Do you have your NPI figure? Or an equivalent protocol/ risk measure?
I was refused the oncotype testing, and that was despite my private insurance willing to pay for it - I felt the same as you strudel as I found people with very similar pathology to me that had a high oncotype score. I’ve had a few weeks to get used to the idea, but I have had a few melt downs over it. Still worrying a bit as my er status and her2 status wasn’t repeated post surgery like others have had - I keep wobbling in case it was wrong at biopsy stage.
The problem is that they are a lower threshold. Some CCCGs are clearly testing below that intermediate risk. I completely understand why you would prefer to have it, I would too.
Emily, it’s a pretty blunt instrument which gives a prognosis/survival rates. Not for the faint hearted if you’re grade three though. You can find it online, but be aware that it’s plain speaking, so no dressing it up nicely. Since my lymph node status is unknown I have a 5 year survival rate of between 69% & 17%. Not sure even the higher figure is particularly cheery!
Strudel - Don’t know whether this will reassure you a bit - it sometimes reassures me depending on my emotional state! but my son’s a doctor and said that the oncologist wouldn’t not test something that he should - if that makes sense. I think the trouble is we read so much, and compare ourselves to others, without the full story. Do you know what your ER+ score was mine was quite high at 7/8.
Jane x
My NPI was 3.94 & I was told that as it was grade 3 & a 3.7cm lump (4.7cm after surgery) I was always going to have chemo. But the other lady who was with me having a mx was also a grade 3 but a smaller lump & she is waiting for her onco report to see if she needs chemo - she was also 20 years older than me.
Ali, that does seem shocking! There doesn’t seem to be any standard practice for anything. I’m at a local hospital that falls under The Christie. So far every procedure I’ve been told by my surgeon and BCN that they are over cautious and probably do more than necessary. I’m not sure whether that is hospital policy or just my lovely surgeon. I have yet to meet my oncologist! Like you Strudel, I wish my surgeon would do it all.
Yup had it last week. I’m going to phone BCN tomorrow to find out about getting the results outside my normal clinic appointment.
I’m somwhat pessimistic about them but yes, do want to know. The surgeon is an arse, suspect he’s not too keen on over-informed patients. Still, I might switch before he gets his scalpel out. Surgery won’t be before July.
Is NPI considered to be accurate. I’ve heard talk about it but darent look it up. It seems to give poor prognosis yet my surgeon has always been very positive about breast cancer treatment at all stages. Perhaps I should forget about it!
Hi Strudel, just thought I would quickly share my story. I was 49 at diagnosis, 2cm plus some DCIS, grade 2, no nodes, er/pr+, HER-. I did have Oncotype done, came back as 28 which is high end of intermediate. No chemo, oncologist said he would have recommended chemo if it had come back as high risk. What is bizarre though is that the result also came back as er/pr-, so this was checked again and I am definately hormone positive. Therefore I don’t know if the negative hormone status affected my score. I did ask how I could get 2 different results and they said that the tissue sample sent must have not had any hormone receptors in it. It sounds like you fulfil all the criteria to have the test done, strange that they won’t do it. I was treated at The Royal Marsden Sutton. xx