Refused oncotype - input please!

[Strudel]

Thank you. See you on the other thread x

[Lexxy]

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 

[Strudel]

Hi Lexy.

That's interesting, never thought about Tamoxifen changing results if given pre surgery. All I was told was by my surgeon. Tamoxifen increases your risk of DVT so not a good idea before immediately before surgery or chemo which is why they make you stop it if you've started. I started taking it following my first onc appointment because they'd said no to oncotype, no need to delay further. However, when the onc phoned me to say he was sending it for oncotype he did ask me if I'd started taking the tamoxifen. I said, well yes you prescribed it for me. He didn't say anything else. We both thinking/hoping he's right about my likely score and that this is all a moot point as I won't need chemo anyway.

Have you asked about the likelihood of that treat,went changing your result?

[Lexxy]

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. 

[Moijan]

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

hugs, Moijanxx

[Silverlady]

Jane - that's excellent news, what a relief.

Thanks Ali - definitely swapping baddie pics.

Strudel - do you have to wait for the report to come back before you can start treatment?

[ann-m]

Hi Stru,
Thanks for your kind comment. I was quite straightforward really. My IDC was picked up on screening in Feb last year. I had no idea it was there, came home from holiday to find the recall letter with an appointment for the next day, so I did not go through the anxiety of finding a lump, getting referred etc.
Mine was a 7mm IDC, grade 2, er+, 'bog standard' in other words! No nodes, clear margins - had WLE, rads & now tamox. Now feeling back to normal, apart from posting on here if course.
I've certainly learnt a lot over the past year & its been so great meeting you all & chatting on here.
ann x

[Janey2]

That's really interesting, as it was the surgeon who pushed for Oncotype test rather than the oncologist and was suggesting I throw everything at it! I also felt a greater rapport with the surgeon, than the oncologist. Nice to meet you too! I spent a long time waiting for rads, so hung around there for a while. Must be feeling brighter, as I've popped back out of the hormone thread! Xx

[Strudel]

Jane,I think what threw me most was that my surgeon (who I absolutely trust) wouldn't give me tamoxifen because he said I needed the oncotype result. I went to the onc appointment at least expecting to have the discussion and was shot down in flames, straight no. That's probably why I got so belligerent. In my head I know the treatment plan's probably right, I just have this niggle. You are also right, the discrepancy between the authorities is a major factor.

Ann, I love your posts and had always wondered what your history was. I wouldn't have asked for it on your results either. It was the size of my tumour that did it, a hair's breadth off having a stage 2 cancer

Moijan - thank you for replying to one of my posts, you're one of my inspirations! As you say, it's a pros and cons thing but if I don't know what the game is I won't know how to play. Nobody in their right mind would actually want chemo, I just want to know if I should be having it. Worst case scenario would be a mid intermediate score I think.

Hello Janey, I don't think we've met. Yours is a very interesting result - a person who would have historically been over treated. This test has certainly been a useful development in the armoury.

Stru X

[Janey2]

Hi. Late to this thread but I'm glad to see you were finally put forward for the test.
I was 51 at diagnosis last year and initially told a small 1.5 cm invasive tumour. I asked about Oncotype when told this but was told I wouldn't be eligible. I had two lumpectomies and the tumour was in fact 3.6, at which point the surgeon suggested chemo and rads but said I was now eligible for the Oncotype DX test, having used the NICE calculation. The longest 2 weeks of my life pretty much, during which time my partner and I decided at what figure in the grey zone I would go for chemo. I ended up with a score of 17 , so below the grey area and didn't have chemo. I had 15 lots of radiotherapy and 5 boosters. The Oncotype report was very detailed with a graph showing the likely benefit of treatment. I asked for a copy. Adding chemo to the mix didn't show any benefit or change to the 20% chance of recurrence it showed me to have. As my tumour was highly hormonal I am on Anastrazole. I was already post menopausal following total hysterectomy. Good luck to anyone waiting xx

[ann-m]

well done, Stru, its a timely reminder to be as well informed as possible & to question borderline decisions.
I had a 7mm grade 2 er+ bc & was not offered the test, but I'm fine with that as I really don't think it would have changed anything.
ann x

[Moijan]

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,

hugs, Moijanxx

[EJM60]

Good news Strudel. I brought the subject up with my BCN again this week, and although my rads are starting on Monday she's going to have a conversation with the oncologist as she said having the test done might help my fragile emotional state at the moment. She went through the NICE guidelines and I wouldn't qualify on the NHS, but my insurNce are happy to pay for it. I just wish there was the same protocol at each health trust because the differences put so much doubt in our minds
Jane

[Strudel]

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.

[ali1961]

So, that's a result. Well played, Strudel. I suspect the 'almost acrow but not quite' played a part, but it's a testament to pushing anyway.

Ok I've thought quite hard about posting this but I'm going to. Strudel's point is an important one. Please don't think I dislike doctors or think that the NHS is a bad way of delivering healthcare. It's pretty good and mostly very fair. But medics are not always right and sometimes they make bad decisions. Or they make ok decisions but not the best. Or they've had a bad month and missed out on reading the latest research. Most of the time none of this will matter. Most of us will have 'big standard' breast cancer and they will be spot on with the treatments. But I think we should be prepared to question and sometime to push. So Strudel I salute you.

Silver, it's a good thing really & not always that bad. We can swap baldy pics and all your cancer friends will be there to hold your hand. And to pass around the tough pants!

Ali xxx

[Strudel]

Well I have had a result. The oncologist has phoned me this afternoon to tell me he's submitted a sample for oncotype. He said that the NHS guidelines were open to interpretation and he has "discussed" my case and has decided to interpret them differently. I don't know why he changed his mind and I didn't ask.

I don't necessarily agree that the onc wouldn't do something he should, not if you google my onc! Personal onc aside, it's a budgetary protection thing. The way he explained it to me is that at my hospital they only submit grade 3 tumours (no nodes) or very large grade 2s. Mine is on that horrible cusp of intermediate. I appreciate that if you put my stats into NHS predict it shows a low risk of benefit from chemo but that's the whole point of oncotype - it was showing that the generalised tools could be very wrong. Some grade 3 tumours were coming back with very low risks and some grade 1 and 2s with unexpected high results.

So, all of you who are planned for rads and tamoxifen have a think about oncotype. I would not have pushed if my tumour had been smaller but I fought for it because I have to know. I don't want to be in a position down the line where I'm musing, "if only."

Silver my darling - huge hugs. I don't want chemo, I so don't want it but I will bloody well have it if I need it. My onc told me that their practice is small grade 3s off for oncotype, any node involvement straight chemo, large lower grade tumour's oncotype and larger grade 3s chemo. Xx

[Silverlady]

Hi Moijan,

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.

[Moijan]

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

hugs, Moijan💚💚💚

[Jo C]

Thanks Strudel and Ann for putting my mind at rest. xx

[Strudel]

Hi Mum of Two, thanks for your input. That really is totally bizarre because you have to be ER+ for oncotype, it's the key criteria. If they continued the test believing you to be negative then I think you're right, it must affect your score because tamoxifen would, on their incorrect reckoning, be useless thus significantly increasing your recurrence risk.

I called my BCN and she has said that if the further enquiries by the onc result in confirmed refusal to let her know and she would see what she could do.

Jo, I agree with Ann, ignore it. The NPI is a baseline indicative tool on your pathology only. It doesn't take any account of the effect of actual treatments your team is planning and it is also decades old. I paid no attention to min at all until I realised that that was why I had been refused oncotype.

[Mumoftwo]

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

[ann-m]

Hi Jo,

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.

ann x

[Jo C]

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!

[Strudel]

Mine just insisted that it was under 2 cm therefore no. Mine is pretty much as big as you get without being stage 2. Also, the NICE approval guidelines say those with a NPI of 3.4 plus should have it. My NPI on the report is 3.36 but actually if you just use the online tool it's 3.4.

[Emily T]

It's strange isn't it, I mentioned it and it was agreed straight away

[EJM60]

Em - according to that criteria my diagnosis fitted too. I was a bit like a dog with a bone, printed off all the information and discussed it with both the surgeon and the oncologist, and they both tried to reassure me it wasn't necessary - it still plays on my mind though - and it wasn't going to cost the NHS anything as the insurance would have paid for it.
Jane

[Emily T]

https://www.breastcancercare.org.uk/oncotype-dx

I don't get this, the page from here says you fit 

[ali1961]

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.

[Jo C]

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.

[Strudel]

That's frankly shocking. Of course you'd want to know. I know I should know this but have you had the scan yet? I loved my surgeon, wish he did it all!

[ali1961]

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. 

Ali 

[Strudel]

Well it appears that everyone does it differently - it must have been the size for you Silver as my onc said I would have had oncotype if it had been a grade 3 as grade 3 isn't automatic chemo.

Congrats again on those clear nodes 😊

[Silverlady]

& that is after clear nodes & no vascular invasion on both of us.

[Strudel]

Jane, sorry your post wasn't there when I started my last reply. Mine's 8/8 so I do understand that tamoxifen is my main weapon it's just the inconsistency.

[Silverlady]

Hi Strudel,

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.

[Strudel]

Thanks Kim, that's interesting.

Ali the way it was left, after what was close to a row, was that we would start planning for rads and he would make enquiries in the meantime. I will be calling if I don't hear anything in a few days. I do of course have the option to pay for it privately.

[EJM60]

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

[Kimucoughdrop]

My tumour was 14mm 20mm with  dcis grade 3 no nodes clear margins oncotype 20 no chemo

[ali1961]

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! 

[ali1961]

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? 

Ali

[Emily T]

What is the npi score? I'm 41 and 11 months btw so nothat much younger you

[Strudel]

I found the approval guidelines, would approve NPI 3.4 or higher. Mine's 3.36.

[ali1961]

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. 

Ali

[ali1961]

Hmm, I may be wrong about whether NICE has formal guidelines, the BCC page says not. But they definitely produced some guidance in 2013. 

Ali

[Strudel]

Hi Ali, I did look at the NICE guidelines re my NPI score and I have to concede that he seems to be right but I struggle with the fact that others are getting it with my results or even lower results.

Jane I know how you feel, I really do. I have to try and remind myself that I am "lucky" as far as it goes and others here would love to be in my position. Problem is it doesn't make me feel better, just guilty!

[EJM60]

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.

jane X 

[ali1961]

Hi, Strudel,

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?

Ali 

[Strudel]

I'm only 45. I'm pretty p'd off. Trust me I don't want chemo, I just want to know that I shouldn't have had it. I thought the whole point of onco was that it was an individual test for you, onc just kept going on about low risk from NHS predict which I can access myself!

[Pam75]

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