Is the oncotype dx test even necessary for me?

Halah

I am not sure if I even need this test and wanted to get y'alls feedback. I know that from the web site for the test I am a candidate, but is there ever a situation where it is just not needed?

My IDC tumor is 0.6cm (zero dot six), grade 1, and er+/pr+/her2-. There were also two DCIS tumors of intermediate grade. After a BMX, we got clean margins with no node involvement. So I am just thinking I don't need chemo. My onco said he didn't think I needed chemo either but he still wants to do the test anyway.

I'm sorry but I don't trust my medical team because I am on a medicare advantage HMO plan and I take what I get. I trust you guys more than my BS or med onco. If it isn't even necessary then I don't want to wait 4 weeks before taking the next step. And the next step I don't know if I want to do, either (tamoxifen).

I'd love to hear from you. Thx...

Mindy

MaryNY

I think it would be a good idea for you to have the test. Ultimately, the decision to have chemo will be up to you, but the OncotypeDX result will give you more information on the tumor. If you get a low score, it will validate your decision not to have chemo. If you get a high score, you might want to reconsider.

Halah

I understand. I read the oncotype dx test site's pages again and yea, it is a good idea. I am just lacking confidence in my treatment team, afraid of chemo and other hormone blocking treatments due to current health issues, yet also concerned about recurrence. It's all so overwhelming. I just wish it would all be over and not have to wait, AGAIN.

Thanks Mary.

Mindy

CHRISCPA

I had a stage 1, grade 1 tumor and expected to do radiation and be done.  My oncotype came back in a gray area and I am now doing chemo.  Better to be safe.

LuvRVing

Mindy,

I think your doctor is following "standard of care" protocol by ordering the Onco test for you.    I am assuming you are over 65.  Even if the Onco score comes back in the mid or high range, would you really do chemo?    Mine came back around 50 and I still declined chemo due to potential side effects interacting with diabetes. 

Remember that just because you do chemo there is no guarantee that you won't still have a recurrence.  Just ask the Stage IV ladies or my friend who is now battling BC for the third time.  And she threw the book at it 12 years ago.  Such a nasty disease!

Michelle

dlb823

Mindy, is there anyway you can switch medical teams?  It's a shame you're not happy with yours.  Like the other gals have said, oncotype scores can be surprising, and I would hate to have you assume yours is low, when factors beyond the basic ones in our signature lines can paint an entirely different picture of what's going on on the cellular level.  Knowledge is power, and by doing the Oncotype, I think your medical team has your best interests at heart.     Deanna

kira1234

Mindy, I agree get the Oncotype test. As you can see my stats a similar to yours. I had the test and my score was 24. After much thought i decided to do chemo. Now in my caase I needed to stop my chemo because of health issues, but I would be still doing chemo if I could.

Karen

Halah

Hello ladies,

Karen, why are you a stage 1b instead of 1a like me? I staged myself based on my path and acs's website.

Deanna, I have a medicare advantage plan (HMO) so my options are limited. I am on disability so I have no money. I take what I get so oh well...

Michelle, what made you think I was 65! I am 50 lol. My med onco says there is no standard of care. I have diabetes as well. How did chemo effect that? What problems did you run into? You see, this is why I am afraid of with any kind of treatment because I have other stuff going on already. It's damned if I do and damned if I don't.

One step at a time, left right left, right?

LuvRVing

Mindy - sorry...you said you were on a Medicare Advantage plan and I assumed that you were over 65 because of that.

There are a couple issues with diabetes and chemo.  The taxols cause neuropathy in 70% of patients.  It goes away eventually for most people, but not for everyone.  I believe I read that diabetics tend to be in the group for whom the neuropathy does not go away.    During chemo, you will be on mass doses of steroids to help with nausea and allergic reactions.  As you probably know, steroids tend to send a diabetic's glucose levels into the ozone layer and that is not a good thing.  My doctor said that I could go on insulin if that happened, but then excess insulin levels feed cancer cells.  So somehow that did not seem like a good solution, in my opinion.  Diabetics tend to have more serious side effects and are hospitalized more often than non-diabetics undergoing chemo.  Sharon Giordano of MD Anderson has published some research on this topic.    I asked two oncos about this, and both "dismissed" the notion until I showed them the research.  I asked for some research indicating diabetics do OK on chemo and neither was able to offer anything.  I couldn't find anything, either.  So I made my decision to skip chemo.

Michelle

kira1234

Mindy, My tumor was .6mm which made it a b if it had been .5 I would have been an a.

Michelle, I have a friend who had the same TC as I was getting a year ago. She wasn't diabetic when she started but was by the end. She is still having many SE due to her diabetics. I think you have done the right thing not getting it.

The other thing is you had the mammasite radiation like I did at about the same time. It is from the chemo that caused the radiation recall which has caused lots of trouble for me. You sure didn't need this being a diaberic either.

Karen

Halah

Hi Kira, My tumor was .6cm as well (you said .6mm but I think you meant .6cm?). Accordiing to The American Cancer Society I am a stage 1a because I had no metastases or micrometastases. With Stage 1b they are saying that there are 1-3 metastases in auxiliary lymph nodes. Did you have any micrometastases?

Michelle, I did not know that about steroids. But that sounds horrible about the complications with diabetes and chemo. I will address that with my med onco if we go that direction.

KC71579

Mindy

You were looking at the N when you staged yourself.  Tumor size is T, N refers to lymph node involvement.  6mm tumors are T1b, the fact that you don't have node involvement makes your stage T1b N0.   Anything 5mm (or .5cm or less) is T1a.

kira1234

Mindy, Yes .6cm. I looked at my report, and it does say 1b, but it also says no node invovment seen. I see what you say from the American Cancer Society. I went back and looked at the report from my talk with the Dr. He also said it was a 1b.  He said the tumor was .6cm and if it had been .5 it would have been a 1a. He also said no node involment.

Karen

kira1234

Thanks KC71579 you cleared that us for us.

Karen

Halah

Yes, I am going to get the test done if my insurance will cover it. I called my doctor's office and they said it could take up to 72 hours to find out if my insurance will cover it.

flopsy

Winterstorm,  If insurance covers the onco test go ahead and get it done.  Knowledge is power.

On the diabetes and chemo>>my sister is diabetic and had BR CA 2 yrs ago and did have chemo.   It did do bad things to her sugar levels during treatment but she is doing much better now after 2 yrs.  I just finished chemo and I monitored my sugar throughout tx because my onc said it could cause me to have diabetes.  My fasting never got above 180 but was never normal during treament but it is coming back down now.  This a.m. was 105.  I am now having rads.  The funny thing about my sugar being high was I did not take the steroids during chemo because of reaction to them.  I just toughed it out without them so I'm thinking that the steroids probably would have induced diabetes in my case.  Don't know if I would do them in your case but would still want to know my ONCA score.  Good luck and am sending you a ((((((CYBERHUG)))))).  LOL, Ginny

don23

Winterstorm - You should get the oncotype test done most definitely. Sometimes even the small tumors can have a high onco number and the large ones have a small number. It can't hurt to get the test done. It could give you peace of mind.

YramAL

Winterstorm-

The company that does the Oncotype test has a financial assistance program for people whose insurance won't cover the test. If you are on disability with not much money, you should fit well within the parameters of the program. When your doctor submits the test to the company, they will call you and discuss this with you. My insurance ended up covering the test, but I had already been told by the financial person there that I would be taken care of if my insurance didn't cover it.

In other words, don't let the lack of insurance or money keep you from having the Oncotype test.

Mary 

MaryNY

Mindy: Waiting to get insurance approval will delay the test. In my case, the onc went ahead and ordered the test and requested insurance approval at the same time. Aetna denied coverage for me but Genomic covered the test 100%. My understanding it that insurance would have covered it if I'd been node-negative. I suppose they figured that most oncs would advise me to have chemo anyway with my diagnosis. However, because of my health history and concerns about neuropathy, I was very concerned about the chemo regimen I would be on. My oncotype score came back in the grey area (18) so I did go ahead with chemo. I had AC x 4 followed by CMF x 4. While not pleasant it was doable. The oncotype score reassured me that the cancer wasn't as aggressive as I thought. So even though I did chemo, I did benefit from knowing my oncotype score.

As someone else said above, you need to know as much about your cancer as you can. Knowledge is power.

Halah

I just sent a message to my doctor online from their website. Hopefully it will rush things a bit. I hate the idea of waiting. I see him in 4 weeks which, in relation to cancer, is a long time. I had my BMX on August 30th! It all went so fast until I had surgery.

Thanks so much for sharing your experiences and knowledge about the test and chemo.

Mindy

MaryNY

Mindy: the doctor can order the test without seeing you. It is done using a sample of tumor tissue from your surgery. Turnaround time for the test is about two weeks from when the lab receive the sample.

I know you're concerned about insurance coverage. You could call Genomic directly and ask them how they usually fare with your provider. I called them a couple of times about my test and they were really courteous and professional. 

From the Genomic site:

"The Medicare program and several other major insurance companies have agreed to cover the Oncotype DX test. According to Genomic Health, about 90% of insured people in the U.S. are members of a plan that covers the test. If you discover that your plan does not cover Oncotype DX, talk to your doctor: he or she may be able to work with your insurance company to get coverage. If you have a low Recurrence Score and you and your doctor decide you do not need to have chemotherapy, your insurance company can save much more than the cost of the test. 

For insurance- and payment-related questions, call 1-866-ONCOTYPE (1-888-662-6897)."

Halah

Hi Mary, thanks for that! I will call them.

For clarification, when I said I see my med onco in 4 weeks, that is when I'd get the results of the test which means it's still 4 weeks to wait. I plan on calling his office a couple of days before my appointment to be sure they have the results. Now that I think about it, I might just see if I can get the results over the phone.

Mindy 

barbe1958

Can I just ask? I was under the assumption that the Oncotype testing ASSUMES that you are, or will be, taking Tamoxifen. Right? So if you know you don't want chemo OR Tamoxifen Mindy.....

Halah

Barbe, I don't know if the test assumes one would be taking tamoxifen or not. I thought it was about whether or not one would benefit from chemo. But with regards to my not wanting chemo or tamoxifen, I may not want it (and I feel strongly against it), but I'll do what I need to do to avoid a recurrence. I really don't want a recurrence AT ALL. I want to be done with it. When it comes to it, I'll talk to my doctor about side effects and how it might effect my current health conditions.

I want to do what I can, which is why I started this thread. What I'm taking away from this thread is that there is indeed something to be gained from taking the test, regardless of the known characteristics of my cancer.

barbe1958

I hope someone pipes in who knows that fact about Tamoxifen. We can't do the test up here as it's a US based company and they take too long to benefit us 9+ months I've heard.

LuvRVing

From the Oncotype website:

 The Oncotype DX assay is recommended for use in newly diagnosed ER+, N- breast cancer patients to predict risk of recurrence. The assay can also be used to identify patients who may be successfully treated with tamoxifen and may not require adjuvant chemotherapy. "It has been suggested that tamoxifen-treated patients with an excellent estimated prognosis may be spared adjuvant chemotherapy."

In other words, it is used to estimate your risk of recurrence with the assumption that you will take tamoxifen or another anti-estrogen drug. 

I recently had the Oncotype test performed on my initial biopsy tissue specimen.  Once the lab received the tissue (in California), it took about 10 business days for the testing to be complete and the results faxed to my oncologist.  So you should plan on two full weeks from the time they receive the tissue specimen. 

Michelle

barbe1958

Thanks Michelle, that's the fact I was looking for!

Halah

Thanks, Michelle.

I plan on getting the results over the phone! I'm not waiting 4 weeks until my next appointment with my onco, that's for darn sure. I'll be the squeaky wheel.

With regards to having faith in my medical team, I think I'll talk to my med onco about it and voice my concerns. He is real nice and I am sure he is a good doctor. I just need to understand a few things. Like how familiar is he with the Nottingham Histologic Grading System and other things on the path report. That was the reason I lost faith in these guys, because they hardly read the report and were trying to explain things to me, things I already learned from you ladies. And a big THANK YOU to this site!

Halah

I called Genomic Health and a lady there said that all medicare advantage plans cover the test at 100%! I am so relieved!

Hope everyone has a great day today. Give your minds a vacation from cancer!

Mindy

rockwell_girl

Mindy looks like u got a good thread going... hope your score comes back low... ps I take  tomoxifin and don't get side effects... hope the same 4 u

Halah

Thanks Sandy! It was 1 week from last Thursday that the test was ordered so it's getting close. The waiting is killing me. Glad to hear you do not have bad side effects from tamoxifen!