Anyone with an intermediate oncotype?

Another 21 here. With tamox and without chemo, risk is 13% over ten years. That's 87 women out of a 100 without recurrence in a decade and 13 with. 

 With chemo, MAYBE risk is improved to 91 women without recurrence out of a 100 over ten years and 9 women with.  And that's only a MAYBE because it is not known whether chemo will really change my risk by 4 or not. 

 Chances are better that I am already one of 87 rather than 1 of 13.

 First oncologist: "Doesn't matter how the oncotype comes back.  I'm trying to save your life.  You really  have to take the chemo.  It's not that bad."

Second oncologist: "You're on the edge of low / middle risk and we're not exactly sure where the lline is.  The chemo decision is up to you.  I'm OK if you decide to take it and I'm OK if you don't.  But you have to take the Tamox or Aromatase inhibitors because not taking those increases your risk to 25% and I don't like that number."

Third oncologist: "I'd feel better if you take the chemo.  Or at least try it.  You can always stop if the side effects are intolerable.  If you decide not to take the chemo, you really have to take the Tamox or the Aromatase inhibitors."

Me:  I've just been through hell to all of them.  I'm trying to get well again.  Why should I take the chemo when we don't know whether it will do me any good at all and I'll spend this entire year getting sick for five months and then trying to get at least as well as I am again after that.  That will take up the entire year.  For what?  I might be dead of something else well before the ten years expires. 

I'm not willing to give up a year of mostly decent health and everything that means in my life right now while I can enjoy it in the hopes that the chemo will be beneficial sometime over the next ten years.  If I'm already one of 87 ten years from now I will never know whether the chemo did me any good at all and I will have made myself sick as a dog for nothhing. 

"I'm not willing to waste a year of what I can do right now making myself sick and then trying to get over being sick from making myself sick.  If it comes back, I'll deal with it then.  No chemo for me.  Thanks all the same." 

First onco: blew up; insisted I'm putting my life in danger but unable to show that to me in a risk / benefit analysis that makes sense.  I know what the risks of chemo are and this MD cannot show me the benefit for taking that risk.

Second: OK: reasonable decision.

Third: disappointed that I would not try the chemo but OK with decision.

For the people in the middle, it's a damn minefield.

edwards750: The Oncotype DX score is based on Tamoxifen, but my oncologist told me that indications are that the numbers for Arimidex are actually a few percentage points better.  The test does look at your tumor, then makes predictions based on a database of other patients.  ER+ women who are pre-menopausal women are given Tamoxifen (an estrogen blocker) and post-menopausal women can take either Tamoxifen or Arimidex (an aromatase inhibitor).  They each have side effects so your doctor will help you decide based on other health factors.

by the way, going for 2nd opinion tomorrow. have a feeling it will be same, but maybe she will give me something else to think about...

The Onco score that you see first is the chance of a distance reacurance of the cancer. The second score is what your score is assuming you use some kind of estrogen reducing meds. In my case I had a 24% chance it would return somewhere else in my body. By taking some kind of an estrogen reducing medicine it brought my score down to 16. After that you see how much chemo will reduce your chance of getting cancer else where again. In my case it lowered my chances by 2%.

I know it's very confusing.

How do they determine the score? Is this from the actual tumor ?

rennasus, The ochotype test isn't looking at those factors it is looking at the DNA of the tumor itself. In my case and maybe yours as well my BS was sure he got everything, and the Onc. agreed, so in there opinion the Oncotype test ws wrong for me. Who know if they are right or not, we jsut have to go with who we trust.

My oncotype was 18 and I went forward with chemo, simply because I was afraid not to and might regret it years from now.  I don't know what the future holds, but for me I needed the serenity of not questioning myself if I had a recurrance.  It has been almost three years since dx and in spite of chemo and radiation I feel great and even though it was not a picnic, it was all doable.  The decision is individual for everyone.  Each of us just needs to be comfortable with our own decisions.

I do belive they look at the grade of the tumor along with the oncotype.   Chemo works on more aggressive tumors.   My oncotype was 16 (higher end of low risk) and my grade was 1.  No chemo and my Onc said no one would recommed chemo for me.   My sister in law had same stats grade 1 but intermediate oncotype grade 23 and no chemo either.

Kira your post: "The ochotype test isn't looking at those factors it is looking at the DNA of the tumor itself. In my case and maybe yours as well my BS was sure he got everything, and the Onc. agreed, so in there opinion the Oncotype test ws wrong for me. Who know if they are right or not, we jsut have to go with who we trust.

I had problems finding an oncologist that I trusted and refused chemo, and when I found someone I liked, although I had had a lumpectomy and the five-day radiation treatment, this doctor wanted an OncotypeDX test on my tumor.

I am so thankful that he ordered the test. My original pathology had my tumor at HER2 positive, and I was trying to find someone who would prescribe Herceptin without chemo.  The Oncotype test showed that not only were the ER results incorrect in the original lab report, the Oncotype showed that instead of HER2 + I was just barely on the low end of HER2 equivocal!  I know this is something that happens very infrequently, but I thank God it happened for me. He not only ordered the test, but his office contacted the Oncotype people and arranged that if my insurance refused payment, they would do it for free. 

My OncotypeDX score was 26,  in the high intermediate range, but I'm 71, and my age was a big factor in the chemo decision.

My onc said that since the Oncotype test was on the actual DNA and not some lab tech counting spots under a microscope, the Oncotype was in his opinion the more accurate and he believes EVERY tumor should be tested via the DNA.

I am on Tamoxifen, which he said in his 35 years of practice he has had good results with.  In February, he pronounced me NED.  I will see him again in May.

As you say, Kira.."we just have to go with who we trust."  I was uneasy with my lab results because the test from the biopsy was equivocal, but the FISH test after surgery was positive...and the same lab did both tests.

I  don't think I have seen your history...my, what you have suffered through!  I just knew that come what may, I wasn't going to put my ancient body through chemo.  Too many stories similar to yours from acquaintances and friends.

I, too had a Onc who refused to listen to me...that's why it took me from July to Feb. to finally begin with one that I trust.  I see SO many posts from ladies here about oncs that are just plain inflexible.

I had my surgery and Contura balloon rads within about six weeks, and even though both procedures were relatively incident free (they still took a lot out of my stamina),  I knew that quality of life meant too much for me to blindly accept the chemo that was recommended...taxoterre was part of the combo.

I hope that you are doing well now.

Kira,

It really is good to feel that trust in your doctor.  I think it makes all the difference when your mental attitude is OK with the treatments prescribed.  I'm happy you are feeling better now.

BTW, I just want to leave a note for those who are thinking about the Accelerated Radiation Treatments...I had the Contura procedure of five days with two treatments each day in late August, and now, eight months later I have had NO residual effects from the treatment.   I think that if one is careful that their radiologist is well versed and experienced it is a safe and effective alternative.

I also had an oncotype 24 with no positive nodes or vascular invasion.  I saw four oncs - got a "you must do chemo", "you definitely shouldn't do chemo", and 2 "you could go either way".   Originally I made a decision based in fear and started chemo, but I didn't stop reading, researching, and thinking about my decision.  I stopped just about halfway through.  I read more about the lack of benefit for ER+ patients without other involvement.  I learned about my ki-67 score.  I made a decision that I will now live with comfortably.  I did 5 of 12 CMF treatments, radiation and am now on Arimidex.

No need to feel lonely

TinaT:

Giving Tamoxifen to any woman that still has a uterus is a no-no.  Sets her up for a higher risk of developing endometial cancer.

I have a question about the scores you all refer to on your individual Oncotype test.  Which scores are you looking at.......the "Breast Cancer Recurrence Score" or the "Average Rate of Distant Recurrence"?  My Breast Recurrence Score was 100% w/o any.tmt and the Distant Recurrence Score was 34%. 

I did chemo due to my HERS2+  was literally off the chart. Knowing that there could be a few cancerous cells "floating around" in the blood stream from either the biospsy (more likely) or the surgery.  My Onco gave me 6 tmts of Taxotere, Carboplatin along with Herceptin (for 52 wks.).  Plus after the "combos" were finished I was put on Arimadex that caused too many SE so now am on Femara.  I even offered to have the other breast removed and was told it wouldn't change the tmt plan I needed to be on.

No matter what each of us decide to do, I believe that for most of us there will always be a question mark as to whether or not it was enough.  It truly is a personal decision to make for each & every one of us trying to fight this horrific & ugly disease that alters our life to some degree forever.  I for one have decided NO MORE CHEMO-LAND for me, will finish the 5 remaining tmts of the Herceptin (triple dose every 3 wks.now) and whatever amomatase inhibitor that works for me AND THAT IS ALL!!  I am so tired of slicing & dicing, poking & prodding, blood work & scans....... I simply want to live my life with peace & joy for the time God has left for me.  I have done what I could do, now it's in His hands.  I never wanted to live to be 90 or 100 !!!

Okay.  To clarify my Oncotype test results my Breast Cancer Recurrence SCORE is 100 and the distal recurrence was 34% (which on my copy is the second number listed).  Gee, sure wish my score was only in the 20's or30's.  Looking at my first page the percentage number does refer to Tamox use, but as I stated before Tamoxifin cannot be giving to EVERY woman.  I would venture a guess & say that statement by Genomic was in a general context, not a recommendation that applies to only women who take Tamox.  Tamoxfin is one of the first proven useful as adjuvant therapy to chemo.  Now we have more choices to apply to different dx of bc.

Sadly either way we are all in the same boat.

There is an endometrial risk with tamox but that risk is easily manageable. 

Get a baseline biopsy prior to tamox and then get REGULAR check ups with the gyn thereafter.

The women who get endometrial cancer are, generally speaking, women who did not have adequate reproductive health care, i.e., regular check ups.\