It was something i read in the booklet they gave me, but i didnt read it until after the appointment. I was planning to mention it when i meet the oncologist. I trust they know whats what so hopefully its nothing to worry about.
I hope your results come through quickly and its a low score for you x
Late to the party but so pleased they've said yes for you Strudel. Shame you that you had to push so hard for it though.
Its interesting you said about tamoxifen. Im concerned because i was given it and took it for 2 weeks, stopping a few days before surgery. Im sure that means the results could be wrong as you shouldnt have had any treatment before the sample is sent.
Yes, Silverlady, I too was wondering if Strudel has to wait for the result before having Tamox...but actually, now I come to think of it, they prob wouldnt give both at once.
Tamox, as you know, is an excellent drug and seems to work really well for most pre meno users. I was on a d/b trial between tamox and letro for about five years......before letro they gave tamox to all...now the aromatases are known to suit us meno ladies better.
best wishes Strudel, will be really interested to hear your results and choices xx
good luck to the rest of you too, especially those waitingxx
Strudel, I dont blame you at all, really I dont Xx and I do believe we should all fight our corner, its so important to be true to ourselves.xx
i would never wish to influence anyone to have treatment....or not to.
I guess its good to write down the pros and cons...and ask...'how will I feel after ive had chemo? how worried will that make me feel? '. And also, ' how will I be feelng later on if I dont have chemo? How worried might I be ' It boils down to trying to make the optimum decision...in the absence of sny certainty whatsoever.
a very difficult choice, best wishes for your desired outcome,
Ali I suspect you're right but I will make all the noise in the world to fight for my best outcome. Does the oncologist know more than me, absolutely. Does that mean I can't check to ensure I'm comfortable with his decisions, absolutely not. It's a personal thing. I'm certainly not suggesting that everyone not offered oncotype must fight for it or that anyone necessarily routinely question their treatment. I just wanted to say that if you're genuinely not comfortable with a decision question it and if needs be kick up a fuss.
That's what I am doing, taking everything they can throw at it. I was told I was going to have to have chemo at the time they gave me my biopsy results.
Although now, I keep thinking that why should I have chemo, they have told me it's not in my lymph nodes or my vascular system and that my lump was mobile and self contained. Are they being over cautious? Is it worth all this poison going into my body?
I think I just don't want to be ill again.
Hi Strudel et al,
i am very interested to hear/learn all about the oncotype testing on this thread...we didnt have this testing when I was diagnosed in 2001. Tho from the sound of it I would have been down for chemo anyway!
my tumour was lobular, E pos and 8x7 cms...and 12/13 lymph nodes cancerous with leakage into my armpit tissue. So when it was offered, i opted for 'extra' chemo after my orignal treatment as they thought it would be back pretty soon.!
this Oncotyping sounds like a great resource and am so glad you ladies have the option.
I agree with the lady who said that the onc wouldnt refuse if it should be given......they really have to do everything by the book these days and of course people would come back and poke them in the eye( or worse) if a mistake was found to have been made!
(Me, well I was quite happy to have chemo at the tIme...seized everything I could as I had a poor prognosis).
Very best of luck with everythingxx
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
I would say ignore it, it's only a numerical tool & go with what your team says, they will tell you what you need to know.
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.
That sounds good. It's wearing isn't it. Bad enough having cancer without all the battles. I don't like my surgeon but love my oncologist. He (surgeon) said they wouldn't bother with a ct scan, as it wouldn't change the treatment. She booked me in for one, saying if you've got secondaries, you probably want to know.
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!
Blimey, I do think that may be too close to call. I'd get back to him and pull him up on it. Ask for a written explanation. Maybe contact via his secretary?
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.
Hmm, I may be wrong about whether NICE has formal guidelines, the BCC page says not. But they definitely produced some guidance in 2013.
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.
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?