Need help, trying to read oncotype dx

GreenEyes81 · October 2017

I have known my score for awhile, but FINALLY got a copy in the mail Friday. (Went of state for treatment.) I have a 15 but I know that is based on taking Tamoxifen. I can not for the life of me see what my score is without taking Tamoxifen.

Am I missing it or do they not provide that? I went to the website, couldn't see anything there either.

TIA

Lisey · October 2017

it's typically double. All results are based on hormonals. I had a 20 score and a 14% reccurance rate, if I'm remembering correctly. If I didn't take hormonzls I'd have a 28% recurrence rate

GreenEyes81 · October 2017

Thanks Lasey. You had a huge difference in taking the tamox or not! Mine is a 4% reduction in reocurrance if I took it. I was curious what it would due to the over all dx score. Thanks again!

Kath1228 · October 2017

the Oncotype Dx score is only done based on taking hormonal therapy. There isnt a different score if you don’t take therapy. My Oncotype was 11 with a 7% recurrence risk assuming hormonal therapy is taken for 5 years. That 7% would double to 14% if I didn’t take hormonal therapy. No separate score for not taking it - just the higher risk of recurrence.

I’m not sure - but I’m guessing the 4% you are referring to might be the benefit of doing chemotherapy vs. not doing it. My benefit of chemo was only around 1-2% with a score of 11 - so I didn’t do chemo.

I’m guessing your risk of recurrence might be a tiny bit higher than mine with a score of 15. It might be somewhere around 10 or 11% with hormonal therapy and double that without it. But I really wouldn’t know for sure without seeing the report.

I hope this helps, but speak to your doctors office and have them explain it you in detail. That’s what they should have done so you understand the differences in treatment.

Best wishes

GreenEyes81 · October 2017

Since I am out of state, I just got a phone call with my score. I didn't really mind the lack of indepth detail then...it was emotional enough. lol And I am a visual person, without the report in front of me it wouldn't have made since anyways. I am expecting a call next week from my doctor though. He was out of the office this week and had to update them I was not going to take the tamoxifen.

Before my oncotype came back, my chance of reocurrance was 19%, if I took tamoxifen it went to 15%. For sure not related to chemo, the oncotype just confirmed no chemo as no one was really expecting it to come back high.

I kept reading tamoxifen cut risk in half...now I am wondering why the 4% reduction in my case. I will have to ask.

Kath1228 · October 2017

I would speak to the doctor about that in more detail. Everything I’ve ever heard, and as Lisey said above, is that taking the tamoxifen does cutyour risk of recurrence in half. That is, from 19% to about 9-10%. There is a pretty big benefit to taking hormonal therapy for ER/PR+cancers. I don’t know what your % positivity was on the ER and PR though. The more highly positive, the more the benefit of hormonal therapy.

There is a graph on the Oncotype report which shows the % of benefit of doing chemo vs. not doing it. (In fact, I think I’m remembering that the graph on my report showed chemo would do more harm than good based on my score - no benefit at all).

There are also ER and PR scores on the report as well. So you would be able to see where you fall in the positivity range.

Glad to hear you will be speaking to your doctor next week. He will be able to clear things up for you.

Lisey · October 2017

Here are the reports for a 20 score. Mine is 13% with Tam alone. It goes to 26% without Tam. If yours says 4% with Tam alone, then if you don't take Tamoxifen it is doubled to 8%. I highly doubt a score of 15 would show 4% for Tam Alone.. Can you post the image of the scans.

.

beach2beach · October 2017

Hi,

My score was a 9. The result showed 6% with tamoxifen alone of 10 year risk of distant recurrence. My 2nd page, my Onco did not fill in the percentages. I have only been to the Onc once. When I go back I will ask for the exact numbers for benefit with Chemo. If I remember correctllyall she said to me was that the side effects would be greater than any benefit. Believe she said it would be of 1-2%.

I'm very happy that we have gene studies like the OnoctypeDx.

GreenEyes81 · October 2017

Thanks, I actually have nothing written on mine! Might be part of my problem. lol The 19% down to 15% with Tamoxifen was well before my oncotype came back. I really have no idea how my doctor came up with that percent. Sorry for the sideways pics, can't figure out how to turn them.

EastcoastTS · October 2017

Greeneyes:

My score of 14 had a 9% recurrence rate attached to it. That should be very close to yours, I'm guessing, at 15.

Lisey · October 2017

I wrote those numbers myself using the graph. Here's what you do. The solid line is Tamox alone, and you just see where it falls with you score. (You'll see how I drew lines in mine) the dotted line is chemo.. the bigger the oncotype, the more chemo keeps you at lower return levels. Chemo only brought me a 3% drop in rates, so it wasn't worth it to me. You can draw a line as well and see how much chemo will help. Chemo probably lowers your rate about 2%

It says Tamox gives you a 10% recurrence rate. If you don't take hormonals your rate jumps to 20%.

Peregrinelady · October 2017

Greeneyes, what Lisey is saying is exactly how my onc explained it to me. Is there a particular reason that you do not want to take Tamoxifen?

Icietla · October 2017

The OncotypeDx recurrence risk indication assumes five years of adjuvant treatment with Tamoxifen.

For a good idea of all the recurrence risk difference adjuvant Tamoxifen makes (to study populations of ER+ breast cancer women) over not having any endocrine treatment (before Tamoxifen was available to treat ER+ breast cancer patients), read the first paragraph here in the Challenges In Diagnosis And Management section.

http://ascopubs.org/doi/full/10.1200/JCO.2012.46.6599

GreenEyes81 · October 2017

Thank you all, this was amazingly more informative than my googling and trying to read the oncotype website. It just was not clicking in my head!

Peregrinelady- there is a lot of factors for me that I considered. For me, its important I have a quality of life balance. Tamoxifin is a carcinogenic. I'm 36 and not willing to be thrown into menapause with no options for side affects other than hot flashes. To me, I weighed the benefit out just as chemo was, I do not see a reasonable leval of risk vrs quality of life.

Instead, what I am doing is getting a 2nd opinon regarding having a 2nd mastectomy to reduce risk and be hyper vigilant. In all honesty, I dont' feel that tamoxifen will do a thing in my situation. I think it will be back regardless. I have a very strong family history. I am ready to face that day when it happens and until then I don't want to have any regrets.

Everyones situation is different, for me, this is what is right for today.

Peregrinelady · October 2017

Tough decision. Not sure what I would do at your age, but I am glad you are getting a second opinion. Best wishes.

Lisey · October 2017

fyi, I've been on Tamox for 15 months and have regular normal periods. It does NOT throw you into menopause

GreenEyes81 · October 2017

Thanks for sharing Lisey, glad to hear it is working for you! A reduction in hormones is the same as what menopause does, you just maybe one of those people that woud have had little side affects of "normal" menopause.

I have some other health issue's that should I start taking Tamox, I would need to have a full hystro. I do not have a normal menstral cycle as I had an ablation several years ago and am now spotting. That would be full on menopause and as my ob said, it is not good or easy in anyway. If I took the Tamox and was not one of the lucky ones...I would have those side affects on top of it. Due to my age and how hard AI's are on your body and bones, my doctor would still have me take the Tamox even "after" menopause for 5 years, then switch to an AI.

Icietla · October 2017

GreenEyes81, of course we are going to support you in your treatment decisions. Please understand, this is not at all to argue.

I just want to point out that menopause is not a disease. My menopause was at age forty -- long overdue, in my opinion. Finally being done with menstruation is great -- kind of like a second childhood, but so much better than the first one. One can wear whatever one pleases, never having to worry about *that* again. So I have to wonder, why are you dreadful of menopause?

GreenEyes81 · October 2017

Lcietia--I am sorry if I came across argumentive. I in no way meant too, was a happy conversation for me. I wasn't thinking menopause was a disease. I think the biggest issue to me regarding menopause is that when it comes naturally, its more "gental", not overnight from a sergury. I don't mind menpause naturally, I think it will be tough enough with out having much options to deal with the side affects as is. Genetically, it is not a "non symtom/no side affects" expirence for the ladies in my family. My aunt is going through it right now and is having a very difficult time. She ended up getting hormanal treatment which has been a HUGE help, the thing is I can't get that myself due to my cancer type. Once I explained that to her when trying to weigh my options, she couldn't agree more. She is an ER charge nurse and been to every single one of my appointments with me, so she has some understanding past that too.

As for no menstration, couldn't agree with you more! I thought I was hemmorging every month! I had an ablation 3 or 4 years ago so I have no "real" cycle. They also had to remove one overy at the time and I noticed the difference over all just from that. I feel like I have a sensitive body and would not be one of those that it would be smooth sailing. I have a friend that had a full hystro at 32 I think...she had zero issues. Never needed hormone meds or anything. Saws it was the best thing in the world, I would LOVE that. Just don't beleive I would fall in that lucky.

Weird thing is, I'm already having crazy hot flashes, I can't figure out why! lol Wondering if my "body" is taking care of me on its own. I have a thyroid issue as well that I am getting checked out so it might be related to that..not sure though. I just know standing in 33 degree weather should not feel super refreshing with no jacket on just so I can breath. lol

Icietla · October 2017

No, you did not sound argumentative. You sounded like someone having an impression or misapprehension that menopause is a bad thing. Now that you have explained your thinking -- thank you for that--, I *get* your having concerns about it. I hope you get the hot flashes explained or sorted out and get comfortable enough. I wish for your menopause to be as easy as mine and your friend's.

GreenEyes81 · October 2017

Thanks, I will take your well wishes full heartedly!

Summer2016 · November 2017

Hi GreenEyes81. I had a BMX and a month after it I was having hot flashes (Sep 2016 BMX at age 49). I just thought it must be from the BMX since I was not having them prior to surgery. Sounds crazy.....

GreenEyes81 · November 2017

Thanks Summer, I was a bit before the surgery but not nearly as intense. Hard to say.

Need help, trying to read oncotype dx

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