Oncotype DX in Australia

AJ1
AJ1 Member Posts: 4
edited June 2014 in ILC (Invasive Lobular Carcinoma)

This is my first post on the board, my husband asked some questions for me after dx, but I'm starting to feel more comfortable with researching the issues myself now.  We arrrived in Australia back in February for my husband's job.  Unfortunately in early May, I was diagnosed with ILC.  After a lumpectormy and re-exceission to get clear margings, the path reports indicated a 15mm LCIS focus with an additional 15mm focus of ILC.  It is the 15mm ILC that seems to drive the staging with respect to size.  I'm 45, pre-menopausal and my dx is ILC, Stage 1, 1.5cm, Grade 2, ER+/PR+ and HER-  (T1CN0M0).  The nodes were clear based on sentinal node analysis (5 nodes clear).

I'm very lucky that I seem to have an excellent surgeon and I'm seeing an onc with a great reputation here in Australia.  I'm very happy with the advice and treatment I've received so far, but after my first onc appointment this last Monday, I did get some direction on chemo that I wasn't expecting.

The Oncotype DX test isn't offered here very often in Australia from what I can gather.  Based on my husband's research and from my dx, the Oncotype DX test seemed to be the ideal tool to help me decide whether chemo was right for me (Adjuvant Online suggests a 2 - 4% benefit).  We requested my surgeon arrange the test and the results are due next week.

However, my Oncologist has suggested that the results of the Oncotype DX might not be the best way to make a decision on chemo and is favouring a TC*4 treatment regardless of test outcome.  I'm now a little unsure of where I stand - is my onc right to put a low emphasis on the Oncotype DX score for my situation and let other drivers (e.g. age) be the deciding factor, or is this perhaps just a case of the test not being common over here in Australia and hence the docs don't have as much familiarity with it as a treatment tool.

Grateful for any feedback folks can give me - have any folks received similar guidance?  I've read a lot of similar posts on the forum which have given me food for thought, but it's nice to be able to get feedback on your own situation.

One day at a time.  Best wishes and prayers to all out there.

AJ1

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  • TokyoSing
    TokyoSing Member Posts: 140
    edited June 2010

    Hi AJ1, I was diagnosed with ILC 3 months after we moved from Chicago to Tokyo!  My Japanese surgeon also did not have too much faith in the Oncotype DX. He was going to let me do it, but insisted on chemo regardless.   But I have a genomics professor for a son and a medical doctor for a son-in-law.  I decided to go to my native Singapore where my surgeon encouraged me to do the test.  It came back with a low recurrent score and although I am T2N0M0, I did not have any chemo, only the surgery followed by arimidex.

    Subsequently , I went to Dana Farber for a 2nd opinion and the oncologist there said she concurred with everything my Singapore doctor recommended. Do your own research and make your own decisions.

     Stay strong... we are here if you need us.

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited June 2010

    I don't know much about ILC, but here in the US oncotype is driving more and more treatment decisions. Good Luck!

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  • mymountain
    mymountain Member Posts: 184
    edited June 2010

    AJ,

    Second (and third) opinions are one of the best tools along with your pathology and oncotype dx score to help make the chemo/rads/surgery decisions. Remember that your treatment decisions are yours, and when you are armed with as much information as possible, those decisions will become clear. I'm kind of surprised that your doc isn't willing to consider the oncotype score.  Please don't let them rush you into something you're not comfortable with, you have time. 

    My ILC was a bit smaller @1cm,node neg, and pre meno.  Score was 11, so no chemo.  We had talked about a score of around 20 to consider doing chemo.

    Wishing you well and a LOW score!

    MM

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  • julia2
    julia2 Member Posts: 183
    edited June 2010

    AJ,

    Here's my experience:  Diagnosed 4/7/10, lumpectomy surgery 4/28/10,  0.7cm IDC, grade 1, stage1, node negative, ER+/PR-, HER2/neu -.  I was told I'm the poster child for regular mammograms, caught early, great prognosis, etc etc etc.  Onc. said no need to do Oncotype test as there was really no chance I'd be high risk for recurrence and chemo had more risks for me than benefits.  I thought about it for a week, then said I wanted the test anyway for peace of mind (how ironic).  Score 33, high risk of recurrence (22%).  Genomic Health pathologist said I have 'a schizophrenic tumor'.  Get the test and value it's results above the pathology is my advice.  Cried when I got my score, started chemo this week, at least now if I have a recurrence I know I did everything I could to prevent it.

     Good luck.

    Julia 

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  • AJ1
    AJ1 Member Posts: 4
    edited June 2010

    Thanks so much for sharing your experiences.  I've pretty much made up my mind to go for the TC*4 if the Oncotype score is intermediate or high - for peace of mind if nothing else in the intermediate case.  If the score is low, then I'm going to have to think hard.  There seems to be too much data to support the Onctotype DX testing to dismiss it.  If I do take the chemo, TC does seem to be coming out as the preferred treatment for my dx - 4 cycles instead of 6 or 8 seems a little less daunting and the side effects seem manageable.  I've got my next onc appointment next Wednesday, so at least I should have a firm plan this time next week.  A second opinion may well be on the cards in the event of a low recurrent score.

    Tokyo Sing - here was me thinking I was all by myself in having been diagnosed 3 months after moving to the other side of the world.  I'm sad that you faced a similar situation, but I don't feel quite so lonely now.  I admire the way you have taken control of your treatment - getting a thumbs up on your treatment from the folks at Dana Farber must have been a big boost.

    Thanks for the support everyone.

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  • trying2Bpositiv
    trying2Bpositiv Member Posts: 18
    edited June 2010

    I have the same stage, ILC, no node, and Grade. My tumor size is 1.8 cm. The first oncologist in my town tried to dismiss the oncotype dx test so I went to UCSF the breast cancer center and got a second opinion. Since my oncotype score is 14. Meaning a 9% recurrence rate. Which puts me in the low range. The oncologist at the breast center said no chemotherapy. Said I would not benefit from chemotherapy put would from hormonal therapy. He also said that there is no way to tell if a person's cancer would be affected by chemotherapy. Any possible benefits from chemotherapy would not out weigh the side effects.

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  • TokyoSing
    TokyoSing Member Posts: 140
    edited June 2010

    AJ1, keeping my fingers crossed, in Tokyo,  for a low Oncotype  score for you.  I have almost the exact same stats are trying2Bpositiv.  My Dana Farber onc said that chemo would do me more harm than good. Let us know how else we can help!

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  • LtotheK
    LtotheK Member Posts: 2,095
    edited July 2010

    Hi Nancy,

    I wanted to share my experience, I'm part of the July chemo girls.

    Apparently, although Oncotype is a great new tool, it is big grey area.  I have one doctor saying absolutely to chemo on the grounds of a grade 3 tumor.  My Oncotype is 12, all other signs for my BC are great.  Another doctor said, "Why would I do Oncotype if I don't trust it? 12 means you won't benefit from chemo."

    I'm getting a third opinion.  I think the hard part of this is, we are all making decisions with one eye shut. They just don't know enough about this disease.  I can tell you in my case, unless you had lymphovascular invasion, you wouldn't get chemo with a grade 2 at my "aggressive" doc's office.  So, see, it's not all one way or another.

    The Oncotype's job is to tell you the chances of your cancer coming back "in your liver and bones", as in, fatal, distant recurrence.  Sounds like your doctor is saying the test is bunk.  I've not heard that from anyone yet, but he is at UCLA, and that's not a slouchy institution.  On the other hand, they can say "do chemo", but my test is literally saying that I won't benefit from it even if I do it.  Now, logically, why would I do it even if there is a question I won't benefit?  Unless I think the test is useless--and I don't--I've got questions. 

    Because they all don't know for sure.  So I'm probably diving in, next week.  I'm not totally comfortable with it. But BC is teaching me that on some level, when it comes to treatment, we will always be questioning until they find a cure.

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  • Isla
    Isla Member Posts: 82
    edited July 2010
    Hi from just over the Tasman Nancy, no oncotype DX here in NZ either but in many ways I'm actually glad that is the case. With all the availability of statistics, life span predictions etc I found that, at times I was focussing too much on 9% this, 15% that.  My son opened my eyes when he said, "but it isn't really that Mum, it's really a binary choice - you live or you die " It is immaterial if the odds on you dying from a specific type or grade of cancer is only a small %age, if you happen to be the wrong side of the goalposts.  I'm not denigrating the statistics - currently they are about the best tool for management choices but I do think that sometimes Drs get too hung up on them.For me the bottom line was being able to say that , at this point in time I did everything possible to maximise my survival.  In Dr Susan Love's Breast book she writes of patients who will undergo chemotherapy for a 1% increase in their survival rate - the decision in incredibly personal.  I am currently undergoing chemotherapy ( AC which is often referred to as one of the nastier regimes)  For me it is very do-able.  There have been huge advances over the past 5 years in the treatment and management of side effects of chemotherapy.  The days of kneeling in front of the little white throne for hours (apart from a very unlucky few) are over - anti nausea medication is excellent.  Yes, there are side effects of chemotherapy - many and varied and just when you think you've heard them all along comes someone whose experienced a new one.  My knees swelled up for goodness sake! However the focus of the medical profession is on preventing managing and treating the SE and as soon as you produce a marvellous 'new' one, they'll have something you can try to put it right!Sorry I'm rambling on .... what I'm trying to say is that FIRST OF ALL you and your medical team should  decide if chemotherapy is appropriate for you.  DON"T let fear and apprehension about 'coping' with the chemo. influence that critical choice.Then, should you elect to embark on the chemo I promise YOU WILL COPE.  It may not be easy but you will manage.   Good luck <<hugs>>
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  • LtotheK
    LtotheK Member Posts: 2,095
    edited July 2010

    I'm so happy if I helped, Nancy--trying to contribute to the good karma wheel.  BTW, I'm 39--the younger set have so much more to deal with in terms of early menopause and QOL, in my opinion.

    Just as another input, the lumpectomy is not unpopular, the studies are very clear that lump + radiation = mastectomy.  All of my doctors were categorical about that, and I'm going to an NCI ranked hospital.  Oncotype seems to be in a different category.

    I love polling your friends.  And I find it interesting they said do it.  I wish you a smooth journey!

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  • LtotheK
    LtotheK Member Posts: 2,095
    edited July 2010

    Nancy, no offense at all! You made a great choice, and I wanted to support that. THIS BOARD is how I find my arsenal of questions!  Otherwise, for instance, I'd be walking into chemo having no idea that I'll probably go into menopause.

    We'll see you in the July group.  You'll probably be on the exact same regimen as I am, so we can help each other from here.

    There are no easy answers in this game.  I think that is the thing we all struggle with the most.  To have the burden of decision making in addition to how tough our treatments are is just plain inhumane!

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  • rubenken
    rubenken Member Posts: 1
    edited December 2010

    Just wanted to point that there is an FDA-cleared alternative to Oncotype DX. Mammaprint was developed by Dutch co. Agendia, and is available as a kit for any lab to buy. Don't know value relative to Oncotype, but worth investigating. It's been around for years.

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  • IllinoisNancy
    IllinoisNancy Member Posts: 722
    edited December 2010

    Oncotypedx was a 9. Doctors said no chemo.  Here I am 4 years later with a local recurrence in the same breast.  I am doing 20 weeks of chemo now.  You can watch the little tumors shrink and go away.  Chemo is working for me.  Oncotypedx, Tamoxifen, radiation and lumpectomy all failed me.  This time I'm throwing everything at it. Breast cancer is a beast!

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  • suzieq60
    suzieq60 Member Posts: 6,059
    edited December 2010

    This oncotype test worries me - what if it's proven to be inaccurate years later. My onc has no faith in the BRCA test and didn't recommend doing it. Still, without the test they probably wouldn't have recommended chemo for you in the first place. Were you node negative?

    Glad to hear the chemo is kicking it's but!!!!

    Sue

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  • IllinoisNancy
    IllinoisNancy Member Posts: 722
    edited December 2010

    Hi Sue,

     Yes, I was node negative, BRCA negative, healthy, no side effects...full of energy.  I never even had a bad mammogram until I was 49 and it was a small 1 cm ILC.  I had a lumpectomy with clean margins, followed by 34 radiation treatments followed by Tamoxifen.  Everyone said that I would be fine and all of my reports were excellent. I was 96% assured that it would  never come back. I had both children in my 20's, and nursed both of them a full year.  I eat more fruits and veggies than any of my friends because I love them.  I have never been over weight. The only thing I did wrong was take birth control pills until the day i was dx at age 49.  I think that caused my cancer and the lack of chemo kept it in me. I think we all need to fight cancer with everything known to mankind.  I will never underestimate it again.  I thought it was all behind me and now I have a huge mountain to climb in the next 6 months. 

    Take Care,

    Nancy

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  • suzieq60
    suzieq60 Member Posts: 6,059
    edited December 2010

    Hi Nancy - you did the right thing the first time - you couldn't have known it would come back.

    I just got diagnosed with a new primary 7 months after finishing chemo. BUT it looks like it was there last year and it was missed. Just had it removed - grade 2 IDC. I don't need chemo again but have to do rads again. You would wonder why the chemo didn't kill it but it seems that lower grade cancers don't always respond. The main thing is it might have kept it under control as it turned out to be some weird agressive subtype of IDC that shows up in lots of nodes. It was only 5.8mm and node neg - so I can be thankful for that and be really glad it was so small.

    I took the pill until I was 52 - then HRT for four years so we don't need to question where mine came from - both were 90% ER receptive - which is indicative of HRT etc.

    You are SO lucky your surgeon got this investigated. The time will pass quickly and it's SO great to actually see the response. I am the same, throw everything you can at it!!!

    Sue

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  • JennyB100104
    JennyB100104 Member Posts: 237
    edited December 2010

    Hi, Friends.

    I just wanted to chime in with my experience. My Oncotype was 14...but considering *all the other factors*, I went ahead with chemo. It wasn't a joyride but I'm glad I did it.

    The point is that I think Oncotype is one thing to look at--certainly not the only tool to use in deciding whether to do chemo. 

    Nancy...I feel like you might be my neighbor (if that's your zip code). Funny, my stats are almost identical to yours and my onc is at UCLA too (she's a woman, though, and she's amazing). My onc was on the fence about me doing chemo and left the decision totally up to me. Anyway, I'd love to share info about our journeys. :)

    JennyB

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