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Onco dx scores- were they useful?

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Re: Onco dx scores- were they useful?

Yes, there's wiggle room with the chemo. Because of being post (or peri) meno and only one partial node infected they won't sway me either way. It's so hard to read them with their poker faces! But they're not putting any pressure on. They've invited me to do the Optima trial but I don't fancy that. I'd rather try and make an informed decision. With the liver disease risk I'm keen to try and be as clued up as I can. I'll keep you posted and thanks xx

 

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Re: Onco dx scores- were they useful?

Hi Posden

 

I just thought - and this might help you make up your mind: one of my more likeable oncologists (the type who sees you as a quivering mass of fear and listens) did tell my husband and me that he wasn’t convinced by the evidence that chemotherapy makes a significant difference but he was absolutely certain about radiotherapy. Oddly, this was partway through my chemo, when I’d had a bit of a crisis and we needed to decide whether to continue or not. He’d never make a salesman Smiley Wink I chose to continue because I’d had 19/21 nodes positive for cancer so the risk of something escaping into another part of my body was high and chemo seemed the only way to destroy any rogue cells the scans couldn’t pick up.

 

As I said, I do hope the test helps inform your decision but it is YOUR choice and, if they aren’t insisting (as they virtually did in my case) there is obviously room for manoeuvre. Best of luck. Let us know your decision? Xx

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Re: Onco dx scores- were they useful?

Thanks Jan,

I know exactly what you're saying. I do fear that the result could make things even more stressful. That's very much on my mind. 

They seem to be leaning toward the risk might outweigh the benefit (2% over 10 years) in my case. But as we know they won't say either way. Except they've repeated several times that chemo is no guarantee against recurrence. In desperation we decided to try and get some guidance from this test. It is the only thing I can do that might help me make such a difficult decision. I'm glad you're ok and hope you stay that way x

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Re: Onco dx scores- were they useful?

Hi Posden

 

One thing we can be certain of in this breast cancer circus is that nothing is certain and nothing will be certain ever again. Such is the nature of cancer. No tests will give you definitive information (yet - I read in today’s paper that they are working on a genome test that may). What difference will these results make to your outcomes?

 

Everyone is different. I adopted a completely different approach - the less I knew, the better it was for me. I couldn’t have told you the elements of my diagnosis - I never read my oncology letters and asked few questions. I would come on here and read posts specifying diagnoses with all the scientific terminology and think wtf. I’ve spent most of my life second-guessing experts and this time I decided to trust the ‘experts.’ I had the full menu of treatments, was very ill but never for a minute thought the awfulness of some of it wasn’t worthwhile. Last Friday, after 16 months, I was told I am fine. There’s been no metastasis despite being so heavily node-positive. For now.

 

Once the treatments had finished, I felt emotionally strong enough to ask about my diagnosis. I wish I hadn’t. It’s the only time I experienced ‘terror.’ Once you know, it can’t be undone. Now I know how high the risk of recurrence is and how helpless I am against it, I realise my initial instinct was right. Fortunately I’ve been able to opt for what will be will be and I’m not thinking about it. I hope I’ll be able to maintain this pragmatic outlook.

 

Just be very sure you want the information, that it can make a significant contribution to how you deal with the emotional aspect of breast cancer as well as the physical. Can the test give you the information you want about your liver weakness? Obviously, you are one who needs to know to feel in control, unlike my ostrich approach, but don’t expect any test to make everything ok because it seems to me that it doesn’t make a jot of difference in the end - no one knows where they sit on the line and no expert can tell them.

 

I hope you find the test useful and feel you can face your chosen treatments with confidence that they will make a difference. I wish you well.

Jan x

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Re: Onco dx scores- were they useful?

Oh my word, Sissy. There really is nothing easy about this journey is there? Thank you for taking the time to reply to me,  I know it's not easy to go back over it all. I had grade 2, stage 2, er+ her2- lobular tumour, with 1/19 lymph nodes partially infected.  As it stands they aren't advising chemo, but they've said the option is mine. Like most people,  I don't feel confident about making that decision without a bit of scientific weight behind it. It's a bit like a rock and a hard place, because I may have inherited my parents auto- immune. I recently lost my beloved mum to auto- immune liver disease. They aren't certain but they think it could've been triggered by medication. Therefore chemo could be extremely dangerous for me in that respect. What a choice 😟 I think I'll let the test be the deciding factor because I don't know how else to stay sane. X

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Re: Onco dx scores- were they useful?

Hi there... haven’t been on this site for a bit but I want to reply to you. I had a ‘straightforward’ breast cancer as in estrogen and no lymph nodes or vascular involvement. If I had been NHS I would not have had this test but I was private - so did. I got a score of 30. Was a big shock as was told I wouldn’t need chemo. For post meno it’s a score from 26 down that doesn’t need it but above they recommend it. It’s a grey area. Major one. They’ve done trials up to the 26 score (TailorX) but not for the intermediate of 26 to 30. I had an arrogant awful male oncologist who I changed. My husband and I embarked on major research. I had an instinct I didn’t need chemo... it’s a dangerous treatment and not to be done unless really needed. No doctor could tell me by how much my risk would go down. I had a 19pc chance of recurrence over 9 years so 81pc of not according to my result. Got utterly bogged down by stats and tbh I nearly lost my mind!! All I wanted to know was by how much my score went down If I did chemo. If it took it down to 10 pc risk I would do the treatment. Not one doctor could even give me an idea of that figure. My new onco told us to call Genomic Health who do this test. They said - sorry we don’t have data in that score! It’s intermediate. In the end I opted to do it... then in the nick of time we discovered proper recent data trial to show that me having chemo gave a 1.2pc difference of not. A cancer research pal said it was giving a fiver to get one back. The test is about gene expression. It is useful but certainly the pathology cannot be ignored. With the new data I felt confident not doing chemo, but had been through utter hell! When I told doc finally I wasn’t doing it she said, ‘Good, but we have to recommend it ‘. Says it all. If I had to go again I wouldn’t have had test and wouldn’t be as anxious as I am now - but then lots of women are not in grey area. I spoke to many American women who’ve had the test around much longer and many who had scores of 30 or more still said no to chemo as it has to take the rest of it into consideration. . As one woman told me her colleague had a very low score of 4 - yet her breast cancer recurred. Yet this woman had a score of 35 and had not. It’s a great addition to the decision process but there is a big grey area!!! This was hard for me to write all this as it was a year ago this month all this was going on... have my first year screening scan on Monday and am terrified - nothing to do with not having the chemo as I know that my decision was right for me and I just can’t go there anymore! I am so glad I went deep into research as the oncos really did not know. I was given three different percentages by three different doctors and they wondered why I was confused.  It’s all just a shock and bloody scary really!!! But life continues and we do too. Wishing you much luck and very best wishes - and hope this convoluted tale of woe has helped!!!

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Onco dx scores- were they useful?

Hello all,

I'm having the onco dx test, I'm funding it myself. I've opted to do this as a safety measure because of potential liver weakness (inherited).

I wondered whether those of you who had the test found it definitive, or whether it tends to be a grey area?