High Oncotype Horror

mbutterfly

Hi all, I just received my Oncotype and am feeling dazed to say the least. My measly 6mm node neg tumor came in with an astronomical 51 score. I've spent two months researching HER2 and I don't think in all the posts I've ever seen a score remotely that high. It's completely off the charts, with a 1:3 chance of distant recurrence. I start TC and Herceptin in July, but any words of encouragement would be great, oh right about now. I had been relatively optimistic before, now I feel a bit more shaky. My surgeon's office was kind enough to fax me the report at 5:00pm with no phone call. Ugh. Anyone else have a crazy high score like this?

stacey2930

HI Mbutterfly,

                     I know that is very scary but it's only a number. You caught the cancer so early. I believe the oncotype is elevated due the grade of the tumor and I think I have read that ER/PR- tend to be aggressive so if someone else had a 2 or 3 cm tumor and had the same pathology they would receive a high score too. I guess what I am trying to say is dont so much focus on the score rather look at the positives of your diagnosis. 6MM WOW I wish my tumor was only 6 mm, mine was 1.5 CM. Your going to treat it aggressively, beat it, and move on with your life! Hugs to you my friend. Stacey

mbutterfly

Thanks Stacey, that encouragement means so much. My onc was expecting it to be intermediate/high due but I feel like a freak of nature. I do feel insanely lucky that it was found so early and thank God for Herceptin or I really would be a basket case. It's funny, at every turn I've been told positive things: "It's only DCIS" - "With mastectomy you'll be done - no chemo, no rads" - "It's so small, we're just being conservative treating the HER2" and then an anvil drops on my head. Those are wise words about not focusing on score. And in the end the chances are really either 0 or 100% for each person. I just wanna be in the first category....

wyldeflower

This is my first post to this board, but wanted to let you know you're not alone!  My cancer was grade 1, 1.3cm er+/pr-/her2++ and my oncotype came back at 56.  My oncologist kindly informed me that she'd not seen one that high before.  I just have faith that we are doing all we can to prevent recurrence.  I had 6 rounds of TCH and will continue to get H until February.

mbutterfly

Wyldeflower, thank you for sharing your score and for letting me know I'm not out there by myself. But I sure wish I didn't have the company. How was your experience with TCH? My first is coming up July 11th and I have the usual nerves.

wyldeflower

I was really nervous about my first treatment too!  I know everyone is different, but I did surprisingly well.  I started back to work after my second treatment.  I never had any vomiting and only occasional light twinges of nausea, but Kytril easily took care of it.  They gave me Dexamethasone (a steroid to reduce/prevent reactions), Aloxi (an anti-nausea medication that works for 96 hours) and Emend (an anti-nausea pill) before the infusion and then I took Emend the two days following.  I have read that a lot of people take the steroid by mouth for 3 days before and for 3 days after, but I didn't (not sure why, I think it was just an oversight) and didn't encounter any problems.  I felt good the day of chemo and the day after but by the third day I was tired.  I would take 2 or 3 naps a day on days 3 and 4, but felt like myself again by day 5 and would be back at work...just got tired easier.  By day 7, my mouth would be sore and that lasted a few days too.  I took treatment on Fridays so that I could be back to work by Tuesday and that worked out pretty well. 

 I would recommend having Miralax (for constipation), Immodium (for diarrhea) , and a mouthwash called 'Prevention' (in case your mouth gets sore) on hand because you can go from constipated to diarrhea in no time flat, lol! 

 Now I go every 3rd Friday for Herceptin alone, and it doesn't require any premedication.  So far so good!

 I know you are probably already worried about your hair, that was the first thing I thought of.  It causes a lot of angst when you realize there's no way to avoid it but once it's out it's almost a relief because you don't have to worry about it anymore.  I'll be honest, I bought 2 wigs before I started treatment but haven't worn them a single time!  I like to look at the bright side of things, and let me tell ya, it's nice to sleep in longer in the morning because I can be ready for work in 5 minutes now!!  Of coarse I'm looking forward to getting my hair back, but am enjoying the 'freedom' of not having to worry about styling and the extra time it takes.  My last treatment was on 5/23 and I have about 1/2 to 3/4 of an inch growth so far.

SecretCancer

Hi girls!  -

I'll be right behind you in treatment...probably starting around July 14th.  6x TCH....followed by rads and tamoxifan (I'm 42 yrs. old)   My tumor was 7mm (<1cm), Grade 3, ER+/PR-, HER2+.  I am still waiting for my onco score....I'll post it as soon as it comes back.  I'm expecting to be high based on what I've read/heard.

Have any of you recieved your adjuvanentonline statistics?

Kim

SecretCancer

Oh and I forgot to add....I was node negative.

Kim

lisa39

mbutterfly,

I bet part of the reason you're feeling shaky now is because it's sounds like your medical team initially led you to believe you'd be able to avoid chemo - ("it's just dcis...").  I had a similar experience.  My surgeon told me that mine was small 1.5 cm and I'd be on my way after a lumpectomy and rads.  Well... turned out it was HER 2 + and that changed everything.  It made it so much worse for me, thinking my treatment would be relatively easy and finding out it would actually be 8 rounds of chemo, rads and Herceptin for a year.  But as wyldeflower says... somehow you get through it.  She gave good advice re: chemo side effects and how to manage them.  

Good luck.  You'll be ok. 

Lisa 

kalyla

I didn't get the onco type score, but my onco doc said my risk of reoccurance was 90% if I didn't have chemo, etc.... So they are throwing the pharmacy at me...

mbutterfly

Thanks for all the support! Wyldeflower, I hope to copy your experience. Breathing a little better today. My onc says this score won't change my treatment plan or outcome (which was supposed to get my risk down to 4-7% per adjuvantonline). They were expecting it to be high. I'm glad somebody's chilled about it.

Kim, we are so close in diagnosis. I had a 6mm tumor - the only difference is I'm PR pos. My prognosis is still super encouraging even with a high score, so I know you'll do great. I'm doing tamox too but no rads. I start July 11.

Lisa, I'm so sorry you had the same experience. I felt so blindsided especially since I really like my doctor. I suppose she was trying not to worry me with something she thought was unlikely (HER2) but then 2 out of every 10 women are getting the whammy they're unprepared for. I think "it's just DCIS" should be banned. 

Kalyla - I'm with ya on the pharmacy. I'm glad they've got em. I hope your chemo's going great.

LizM

I thought the oncotye DX score was only for ER/PR ++ her2 negative.  I read somewhere that it is not reliable for ER/PR negative breast cancer and should not be performed.  It is also my understanding that it should not be performed if you are her2++.  Chemo or targeted therapy is almost always in the picture for ER/PR neg and/or her2++ and the purpose of the test is to determine if chemo is necessary.

mbutterfly

Liz,

You're right - it's never given to ER/PR negative because the data is predicated on use of tamox which rules out ER/PR negs. My insurance paid for the test because I'm triple positive and had such a small IDC (6mm). I was told I fell into a very gray area as the benefits of chemo for tumors <1cm are not well understood.The benefits of chemo for tumors < 5mm are even less understood and I was just one click over the line there. Before the test came in, I was told that only HER2 made me a candidate for chemo - with my size tumor, and node negative, they would never give it otherwise and the choice was mine. Ha! Anyway, I was sort of waffling and looking for a way out before but the Oncotype has relieved my mind that chemo is necessary. 

otter

These are the prerequisites for Oncotype testing, according to the Genomic Health website (http://www.genomichealth.com/oncotype/about/hcp.aspx):

"Oncotype DX is validated for use in breast cancer patients whose disease is:  1) Newly diagnosed; 2) Stage I or II; 3) Node-negative [although this may change]; 4) Estrogen receptor-positive."

There is no requirement that the tumor be HER2 negative.  In fact, HER2 is one of the components that is tested in the Oncotype DX gene panel.  A tumor that is HER2 positive will have a higher Oncotype recurrence score than a tumor that is HER2 negative but otherwise identical.

Liz is correct, though, that a positive HER2 result usually means Herceptin will be recommended.  What other chemo drugs might be used, and the treatment schedule, would be based in part on the Oncotype recurrence score. 

otter

TwinkleToes

My oncotype score was 60, so I guess I win.   I had DCIS, along with an invasive component of 8 mm.  ER+/PR+/HER2+++.  I had the oncotype done because the invasive component was 8 mm, and my oncologist said that the rule of thumb is usually no chemo for an invasive component of less than 1 cm.

Uh, yeah.  With that oncotype score, I did 4 rounds of A/C and am on week 36 of Herceptin.  So far, so good, God willing.  Diagnosed in March 2007.

I know how you feel...I was terrified by my ugly score for a long time.  All we can do is pray that the chemo and Herceptin do the job.

swimangel72

mbutterfly - I'm so sorry you got such a high score. I too know that awful feeling of disappointment, first being told I'd probably only need Arimidex (after my mastectomy) only to find out later I was Her2+ - my oncotype score was only 22 though, so my oncologist just put me on Navelbine for 4 months (which doesn't cause hair loss) with Herceptin for a year. Still - I felt very down, almost as down as when I was first dx'd. It does get easier though - just be sure you like and trust your oncologist and the infusion nurses. Hang in there!

 P.S.  For more information about Her2+ cancer, you can check out the following web site:

http://her2support.org/

kimbly

I asked my onc about the oncotype and scoring and she said that seeing that I was her+ I wasnt even a candidate for this as the score would be high JUST because of this.  So i reiterate what others have said, it's only a number.  Herceptin is a wonderful drug.  I completed 6 rounds to TCH at the end of March and am continuing on with just herceptin for the full year.  My onc said that for me Herceptin is THE MOST important drug. I had IDC 1.2 and 1.8 connected tumor plus DCIS and the herceptin totally shrunk the IDC.  So again only a number... we are survivors here!!

talbrig13

Hi Butterfly...

I had a 1.2 cm tumer, of which only 30% ws invasive ( 4 mm).  My onc was against doing chemo and even Herceptin.  UNTIL my oncotype came back at 47.   My surgeon called me herself to tell me.  Needless to say, this knocked the onc off of his "fence" and I was in teh chemo room within a week.  I did 10 rounds of TCH biweekly and then Herceptin every 3 weeks for a year.  I finished on Jan 31, 08. 

I worked the entire time...about half way thru chemo I did take the day after off.   I was tired, mild nausea and had hot flashes.   But I really did not feel as poorly as I was geared up for. 

Just be sure to take the steroids and anti-nausea meds, whether you think you need them or not.  Drink lots and lots of water.  Rest when you need to.  Stay out of the sun.    Get some Biotene mouthwash and toothpaste for sore and dry mouth.   

I thougt I was the winner of the oncotype score, until now my 47 was the highest I have seen.  My oncologist did say that he felt the test put more weight on the HER2 factor than maybe it should, but I am glad we have the test and the chemo and Herceptin.

 I wish you luck...if you need anything, PM me!

Love to you,

skyedivine

Hi MButterfly,

I had a 2.1 cm tumor, ER+, PR-,HER2+ so I had AC, Taxol, radiation and then a year of Herceptin which ended about 2 months ago. I have actually forgotten my onco score but trust me, it was high. My oncologist told me that the most important thing was finishing all treatments, and my radiation onc said in his opinion it was most important that I was node negative. I'm now on aromasin and that is scheduled for 7 years.



I think other things are also being proved very important to help avoid recurrence. Consistent exercise, good vitamin D intake (I take 2000-4000 units/day) and doing whatever you need to to get adequate sleep are all huge.



It's also great to know Tykerb is now available.



I also was given my dx in decreasingly positive segments before they put the hammer down. In so me ways I think it eased me into things and may have helped in a strange way. Please feel free to PM me anytime, and just hang in there in the meantime. It's scarey, yes, but not so much when you know you're not alone. - Skye

SecretCancer

Sorry, girls....I am the official contest winner here.  My tumor was 7mm, grade 3, ER+/PR-,   HER2+, negative nodes, clear margins.  My oncotype score is a whopping 65!  (I always was an overachiever!)  My surgeon said that he'd never seen one that high, but then again, he NEVER sends out for oncotype with HER2 positive patients, because the high number is a given.  He only did so because I insisted. 

SuzinLA

Have been posting in a different forum. Just saw this. Yep, got a 53 score. That's why we're doing all this chemo et al. To try to knock those percentages down.  All we can really do is say "one day at a time" and be in the present.  I'm just really appreciating that my second round of chemo (out of 6) is going so much better than my first... 

lisettemac

Count me in those who were led to believe this would be no big deal and then came back with a higher than anticipated Oncotype score.  My onc and I were arguing over whether or not I'd do chemo.  I was stage 1, 1 cm, poorly differentiated, ER+.  I told him I wasn't sure the side effects of the chemo were worth the benefits.  He said if my Oncotype came back low, he could make the case for no chemo.  It came back 39 (okay, I can't boast a score in the 50's, but ...) and off to chemo I went.  I think it was the first time I really broke down.  Now I'm on the other side of it.  Finished the adriamycin, cytoxin, taxol, herceptin, radiation and am on year 2 of Tamoxifen.  I'm feeling better than ever.  You can do this!

TPPJ

Wow....  until I found this thread I had the highest score of anyone I'd ever heard of...a 44.  I agree so much w/Kimbly when you say that your onco. doesn't even order these tests done on her2neu patients, because duh..of course the score will be high.  I kind of recall feeling that way while awaiting my results.  We already knew I was her2/neu+ so I knew I was doing chemo and herceptin (you don't just do herceptin), so what was the oncotype result going to do for me?  Besides scare the crap out of me?

Lisette, I did all you did, tx wise, but rads.  I had a mastectomy instead.  My tumor was 1.1 cm.  If I had to do it over, I think I'd have gone w/lumpectomy and done rads...rads are just one more good weapon.  I had TRAM flap recon. and I am unhappy w/the results, not to mention the inch thich, hip to hip scar across my belly.  I look awful.  But I have hair again.  And I'm breathing. 

2KidMom

Hey there...my score was 81!!  Talk about freaking out...my tumor was only 4mm so they were not thinking of doing chemo....when that score came back things changed pretty quickly.  I did dense dose ACT and now I am just doing the Herceptin....my Onc always tells me that he expected the high score because of the HER2 also....

anneshirley

Hi--sorry for your anxiety.  As best I remember, a woman on the HER2 board with a very small tumor (5mm), node neg, had an onco score of 90, and as I also remember she is doing fine after her year on herceptin.  Also, and this is from memory, it was my understanding that it is not protocol to do  oncotype testing on women who are HER2+ because HER2+ in and of itself identifies you as someone who will benefit from chemotherapy.  I thought that was the purpose of doing the score to see if a woman will benefit from treatment.  Did they know you were HER2+ before they sent your specimen for oncotyping?  I'm HER2+, node negative, and didn't do onctotype for the reason stated above. I'm sure it would have been high and would have caused me even more anxiety, so I'm happy I didn't have this test.  Herceptin does work.

mimi1030

My mom was never tested for this back in 04 when she had her stage 1, 4mm IDC with node negative, mastectomy and chemo.  Didn't qualify for herceptin in 04, too early stage then.  We knew nothing of this oncotype score, is this new? It would have been nice to know that, as my mom had a distant reoccurance Sept 07 to bones and liver and we were not expecting that at all from a 4mm tumor.  But she was highly her2+++.

anneshirley

I believe the main reason to do oncotype testing is to help a woman determine if she needs additional treatment.  Some women with very low onctotype scores, which measure likelihood of recurrence, are able to forego chemotherapy based on these scores.  But if a woman has HER2+ she already knows that her likelihood of recurrence is higher than women who are HER2 negative (excepting, of course, women who are triple negative). When I was diagnosed two years ago it was not the protocol to do this testing on women who are HER2+.  This may have changed.  

It's good that women with small tumors can now get herceptin. I had a year of herceptin and I was very like your mother (5mm, node negative, Grade 2, no vascular invasion) and went through a year of herceptin.  I hope she's on herceptin now and that it's working for her.   

1OUgirl

I wanted to weigh in on this site regarding high onco scores.  I have been free and clear for 3 years and 4 months and I had an onco score of 52.  When I had my test done, my doc said the onco test had only been available for about 8 months.  I had a tumor size of 9mm and I was er positive with no lymph node involvement and clear margins.  All great prognostic signs.  When the onco test came back, it sent me into such a state of shock that I thought the doc said it was a score of 33.  So I went for 2 1/2 years believing it was a 33.  Then I happened to look at my file in my doc's office and saw the correct score.  I was so glad that I didn't know the true score at first because the score of 33 was scary enough.  I had dose dense of 4 rounds of AC and 4 rounds of taxotere then on to tamox.  My doc said that if they had not been using the onco test, she would have never done chemo on me.  Therefore, I am very fortunate that this test was available at the time.  I hope all goes great for you mbutterfly.

lisettemac

TPPJ -- sorry to hear you're unhappy with the mast, but I'm glad you have hair and you're still kicking!!  my hair is growing back too and I finally have enough for a real "style."  I think it looks kinda cute -- a little Victoria Beckham, but shorter.

karenann

And to think my onc and surgeon told me I didn't need Herceptin.  I thank god I listened to that, "little voice inside my head" and fought for it.

 The interesting thing is that I was dx right when all of the trials were ending for using Herceptin for early stage disease.  I wasn't even tested for Her2 until I went in and demanded the test and when my test came back positive, my onc still didn't want to give Herceptin to me (he felt the risk outweighed the benefit).  I then took all of my medical records to a tumor board and Stanford.  Needless to say, in the end I got my way... I would have found another onc had he not agreeded to give me the Herceptin.

 Here is the part I love.. when I was looking over my medical records my onc had written in the file:  node negative, high risk for recurrence.  Don't you just love it!!!

 You have to be your own advocate!!!

Karen 

Christianne

I thought I'd share my experience about the Oncotype.  I am ER+ PR+ and Her2++.  My onco ordered the oncotype test because he said my score could be anywhere from low to high.  My score came back at 20, with a 12% risk for distant recurrence.  He said chemo would only bring that down to 9%, so I did not choose to do chemo.

 So although Her2++ tends to give a higher score, it is not always indicative of chemo.