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Should an oncologist know about the Oncotype DX test?

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Posted 4/13/2005 1:01 PM (GMT 0)
I met with an oncologist yesterday, and it was very unpleasant. Both my DH and I left there wondering if the guy was competent or not. Several things were amiss, but we were especially concerned that he does not know about the Oncotype DX test. Is this so new that an oncologist would not know about it? He said he had never heard of it.

thanks!

Laure'
Posted 4/13/2005 2:46 PM (GMT 0)
Hi Laure'

 

It is a rather new test; having only become available Jan. '04.  And if you do a search for it online you won't find much info other than the company's website.  But my oncologist has done it for quite a while and recommended it to me right away before we talked about any treatment options.  I'm going to a branch of the Cleveland Clinic and they are notorious for being on top of all the medical advances.  So that may play into her using it when other oncologist don't even know of it.

 

But you say there were several things amiss during your appointment.  And you were left wondering if he was competent.  IMHO, I would find another oncologist; not just based on his lack of knowledge of the Oncotype test but on your unpleasant experience and gut feelings that something was missing.  You need to have every confidence in the persons who will oversee your treatments, you need to feel comfortable and satisfied that they are doing all that should be done for your particular case.  If not how are you going to have the mental fortitude to undergo all of this?

 

My team makes me feel proud that they are working for me.  They smile all the time, make every effort to let me know exactly what is going on at all times and keep my outlook positive.  The oncotype dx test was just one factor that assured me this was a knowledgable and trustworthy facility.  And there are specific criteria that your tumor must have to be able to use this test.  Were you estrogen receptor +, are you PRE-menopausal?  If so I would call around to oncologist in your area to find one who knows about and uses the test.  Having it done has saved me from having chemo.  If I hadn't had it done I would have pushed for having chemo regardless of how much it scared me.  Now I am 13 treatments from completing my radiation and happy.

 

Let me know what you decide to do.  I'll ask my team if they know how often the test is used by other clinics if you'd like.

 

Hugs,

Posted 4/13/2005 3:05 PM (GMT 0)
Hi Mia, Thanks for your note and information! How are you feeling? 13 more treatments - that's great!!!!!

I am seeing another oncologist next week. He's from a large group of 8 oncos and one of them was "the best in NJ" last year. They're with the Carol G. Simon Cancer Center which is part of Morristown Hospital in NJ. Like you, I want to find out if I'll need chemo. I'm er+/pr+ and the HER2 by FISH was not applified. No lymph node involvement, and no lymphovascular invasion identified. I had a 1.0cm x 0.7cm invasive carc. removed with clean margins, but I have extensive DCIS. My surgeon who did the (rather large) lumpectomy recommends a simple mastectomy because of the DCIS. I want a bilateral since DCIS doesn't show up so much on mammos and I don't want to go through this again.

The onco yesterday recommends TAC which is a heavy duty chemo regimen. I do want to do everything possible to cure myself, but I want to be sure heavy duty chemo is going to help. I'm hoping the new oncologists will be able to order the Oncotype DX. That would be wonderful if your group would know anything about the group here. I'm also trying to find names of good surgeons here in Northern NJ. Do you think they might have any recommendations for that as well? My surgeon in VA didn't have any recommendations here in the area (we just moved on Friday/Saturday). I really appreciate your help! You are such a great support here on the board - too bad you weren't closer!

Thanks so much!

L&H,
Laure'
Posted 4/13/2005 9:26 PM (GMT 0)
You know this is the second post in a row I have read today about a feeling the onc was not competent. I did not like the onc I saw one time and never went back. He made me feel like I was wasting his time and mine that my cancer was so insignificant. And maybe it was, but I was a lot older than you girls and as far as I can tell any breast cancer in a young woman is nastier than in an old lady. If you do not feel comfortable with a doctor, you need to find one that you will trust and be able to talk with. Please do not stop with second best, or maybe even tenth best. Go for the BEST period. Good luck. Hugs MK
Posted 4/13/2005 9:39 PM (GMT 0)

Laure: The most important thing is complete trust and confidence in your medical team. They need to be working for YOU and together for your best care and treatment. When my father was diagnosed with lung cancer, I called Richard Bloch (H & R Bloch) as I had read his book. He was wonderful and talked with me for over an hr. The one thing that I will never forget his telling me was this...."find an oncologist that believes that he/she can help you. If you get the feeling that he/she doesn't feel that way then get up and leave the office and never look back!" When I was diagnosed with bc, that was the one thing that I remembered. I used that thought when I met the first surgeon and decided he wouldn't touch me if he was the last surgeon on earth. Mia has given you wonderful advice. Please don't get so frustrated that you give up!

H&P...Deb

Posted 4/14/2005 1:07 AM (GMT 0)
Thanks Laure' for the nice words and for asking how I'm feeling.  I was feeling pretty good until this last weekend.  With 15 treatments down and 15 to go I thought "yippee, I'm at the halfway point" but I am getting so tired now and my breast is painful.  Not horrible pain, just annoying and sometimes stabbing through the breast.  My skin is getting a little red under my arm and on the inside side of my breast.  The treatments are aimed at the underarm and then the machine is moved and aimed at the inside portion of my breast.  But all in all it's not that bad.  It's do-able and tolerable for the benefits.  I'm very fortunate I didn't have to have the chemo but I would have done that to in order to prevent it further spreading.

 

I had a partial and now wish I had known more about bi-lateral mast. and immediate reconstruction, cause I probably would've done that.  Only because I am the kind of person who worries endlessly over things.  I love the idea of having peace of mind with the bi-lateral and recon.  But this is the way I am going now and I'm not going to look back now.  I'm considering having a prophelactic mast of the other breast with recon just to get them to match.  But that will be much later, I want some time after radiation to heal emotionally and physically.

 

I'm so glad you have an appointment with another team, they sound good.  I will ask my onc. what he knows of them and let you know.  In the meantime hang in there and know that we are all with you in thought, prayer and spirit.

 

Love and hugs,

Posted 4/14/2005 3:28 AM (GMT 0)
Hi Laure',
I agree with all the other ladies about getting another oncologist. My husband and I just couldn't believe it when the doctor said I needed to have four chemo treatments, since everything we had learned prior to this was that I would just need radiation (I had a lumpectomy) and hormone therapy. We did get a second opinion by a doctor in another city, and he said the first doctor was probably within guidelines for recommending chemo, but that he would probably not do it. The first doctor had mentioned the Oncotype DX test, rather to placate us as we were so adament about not doing chemo. After a long three weeks of working to get my insurance company to pay for it, I had the test. As it turned out, I was in the low range which helped me to decide to forgo the chemo. The test is fairly new, but your oncologist should have known about it, I think. You can read about the test at the lab's website, Genomichealth.com. Or, just do a search for Oncotype DX. There is a lot of information out there, especially about the validation of the test by the New England Journal of Medicine and Kaiser Permamente at the San Antonio Breast Cancer Symposium last December. Good luck to you. I am now doing radiation, six down and 27 to go.
Take care,
Jean in WA
Posted 5/16/2005 7:25 AM (GMT 0)
Hi Jean,

Do you mind if I ask how you convinced your insurance company to pay for the test?  And which insurance company is it?  I had the test done, my insurance company has refused to pay but I am ready to fight them on it. 

Thanks in advance.

Marianne

Posted 5/16/2005 7:38 AM (GMT 0)
Has anyone had their insurance company pay for the OncotypeDX test?
If they refused at first how were you able to convince them to pay for it? And if you don't mind sharing, which insurance company did you have at the time.

Desperately looking for answers,

Marianne
Posted 5/16/2005 10:49 AM (GMT 0)
HI Marianne-
Welcome to our corner of the internet! I have no info for you regarding the oncotype testing, as my treatment was 5 years ago (ancient times in the life of cancer research!). Just a suggestion though, you may want to start a new thread and pose your question again, including part or all of it in the subject line. This will help it stand out for others to see.

You may also talk to someone at the lab company to see if they have any advice. They may know of the buzzwords and key facts or statistics to include. Find out about "return on investment"....by doing this test, how much $$ might they save in costs for chemo? And what other costs may be saved by doing this test?

Good luck-
Lori
Posted 5/16/2005 1:06 PM (GMT 0)
Hi Marianne,

Genomic Health (the lab who does the Oncotype DX) is dealing directly with my insurance company, so I don't know the status yet. They sent me a non-bill telling me this. I have Aetna. However, there are two other women here who I know had the test and got their insurance companies to pay. I agree with Lori, post a New Topic asking this question and I'm sure you will get info. I know that one of the women, I think it was Jean in Washington State or maybe Mia in Ohio?, fought with her insurance company until they finally agreed and has paved the way for other women in that state with that insurance. I wish you the best of luck. The test is well worth the money ($3500) since I found out it wouldn't really pay to take chemo, which is a huge relief!

Take care!
Laure'
Posted 5/16/2005 1:38 PM (GMT 0)

Hi Marianne,

My insurance company paid for it with no questions asked.  (United Healthcare)  But I'm sure they are glad they did after seeing the results.  Like Laure' I would have had no use for the chemo since I scored a 3 out of 100.  The lower the number the lower your chances of a recurrence.  And my number was the lowest the Cleveland Clinic has seen.  So they saved a ton of money (sounds like a Geico commercial) on not paying for unnecessary chemo.  Heck they saved up to $1,000 just in not having to pay for a wig.  (They have a "scalp prothesis" coverage of up to $1,000!)  So in the long run I'm sure chemo with all it's side effects and additional meds would have cost WAY more than the $3,500 for Oncotype DX.

So if you are trying to get your insurance company to pay for it, I'd have your onc. office call them and give them the low-down on comparison costs.  They will most likely jump at the opportunity to pay for the test.  That is what my onc. office was going to do if my insurance company had balked.

Good luck and let us know how things turn out.

Hugs,

Posted 5/16/2005 10:02 PM (GMT 0)

Thank you Mia!  I also have United Healthcare but I'm in Florida. 

I have already had the test and came back with a low recurrence score.  I'd rather have your "3" though!  Even if I do have to pay for it, I feel it was well worth having the test done.

United has already sent me a letter saying they are not going to cover the cost of the test.  I will, of course, appeal it.  I also know that Genomic Health is also fighting on my behalf. 

The fact that United has paid for it in your state is great ammo for me.  Can't thank you enough for your help,

Marianne

Posted 5/16/2005 10:06 PM (GMT 0)
Laure and Lori,

Thanks for your input. I will start a new thread with this topic if I can figure out how to do it.

Marianne
Posted 5/17/2005 1:03 PM (GMT 0)
Marianne, I would think just the posts above would be a good point for your insurance company to consider. Not having to pay for a wig and especially not having to pay for chemo. Since Mia has the same insurance and was able to get them to pay for the test, that set precedence. Maybe if they still fight you after you try a little more to get it paid, she can provide you with a copy of the statement that they paid for her test. Insurance companies and the government are famous for turning down payment of health issues the first couple of times through. Getting disability from Uncle Sam is an automatic turn down at least twice no matter what. I have only known two people who did not get turned down and they were not expected to live long. Good luck in getting approval. We are here behind you. This test sounds like a great one. I am interested in seeing the effect it has long term. So many have had chemo and had ill effects, others seem to breeze through without problems. But why put your body through it if not necessary? Hugs MK
Posted 5/17/2005 11:10 PM (GMT 0)

MK,

You're right, the posts bring up some great points that I can use with the insurance company.  I'm taking very detailed notes.

There are so many studies out there that say chemo isn't necessarily for everyone.  I think the Oncotype DX test is at least a step in the right direction to help women with treatment decisions.  I used it to justify my decision not to have chemo.  Had it come back with a high recurrence score I probably would have changed my mind and done the chemo. 

Thanks for the good wishes and for sharing your thoughts.

Marianne

Posted 7/20/2005 11:45 AM (GMT 0)
I just found out my insurance will pay 1/2 of the oncotype test......I'm going to appeal still and see if they will pay more though. I should be find out the results in the next couple of days...I'll be glad to know my treatment for sure..........
Posted 7/20/2005 2:42 PM (GMT 0)
Welcome SAULTP. I am very glad I took the oncotype test. I'm in the appeals process with my insurance company now, but Genomic Health hasn't made me pay yet. They are seemingly very supportive in that regard. I hope your results are clear for you and that you don't have to do chemo. Please let us know!!!!
Posted 7/20/2005 5:46 PM (GMT 0)
Welcome saultp, hang in there and keep working on the insurance company. Have you done the testing yet or are you waiting to see if they will pay more first? If you learn you do not have to have chemo then you have a good reason for them to pay for the testing, sure would be less expensive than chemo treatments. Keep us informed. Hugs MK
Posted 7/21/2005 4:12 AM (GMT 0)
Hi Marianne,
Just saw your topic posted from an old one. Yes, I did have some success in getting my insurance company to pay for the Oncotype DX test. They are covering it as a non-preferred provider at 60%, so at least that only leaves about $1300 of the original $3450 to pay. I bombarded them with information that I found on the internet, mostly from the December 2004 Breast Cancer Symposium in San Antonio. Kaiser Permanente and the New England Journal of Medicine validated the studies done by Genomic Health, the lab that does the testing. Several insurance companies are now paying for the test, and I told my insurance company (through a case manager I was given) that they stood to save a lot of money if I didn't have to have chemo, and that they really couldn't continue to say this was an "investigational" test any longer, given the validations it had received.

Genomic Health still has not asked for my portion of the payment (a couple of months now), as they want to continue to "fight" with my insurance company, Premera Blue Cross of Washington and Alaska. By the way, I scored 16 on the test, just inside the 1-17 low range, but it was enough that I did not do chemo, just radiation.

I am feeling really well.... a little tired still, but now walking 6 1/2 miles every day and lifting my big two pound weights! There is life after breast cancer!!!

Good luck to you! Please let me know if I can be of any more help.
Take care, Jean in WA
Posted 7/21/2005 5:20 AM (GMT 0)
Jean,

Thanks for the info.  I'm still in the process of fighting with the insurance company (United) to pay for the test.  Genomic Health is doing their share as well, just like they promised.  My hope is that they will at least cover a portion of it.  Which insurance company are you with?

I scored a 17 on the test which still qualified me for the low risk category so I also chose not to do chemo.  Stage 1, Grade 2, 1.2 cm IDC, highly ER+ PR+, HER-, low S-phase, proliferation and KI-67.  Do you mind if I ask what your tumor stats were? 

Hearing someone that has been through the bc ordeal is doing well is always a bright spot in my day.  Glad to hear things are going well for you. 

Marianne

 

Post Edited (marianne2) : 7/21/2005 1:43:06 AM (GMT-6)

Posted 7/21/2005 11:29 AM (GMT 0)

Hi:

I go today to the oncologist to get my results of the oncotype test.  I'm hoping for once in my life to score low on a test!  I'll let you all know tomorrow.

Susan

i

Posted 7/21/2005 6:00 PM (GMT 0)
Hi Susan! Welcome. I sure hope that you have the lowest score on this test ever. Please let us know what you find out. Keeping my fingers crossed!

Hugs and prayers for low score..Deb

Posted 7/22/2005 6:34 PM (GMT 0)
Hi Marianne,
My tumor stats were very similar to yours, other than the actualy tumor being 1.3cm. Looks like we scored very similarily on the Oncotype test as well. My insurance is Premera Blue Cross of WA and Alaska. Have you had radiation yet?
Take care, Jean in WA
Posted 7/23/2005 1:41 AM (GMT 0)
Hi Jean in WA,

I just finished radiation three weeks ago. I now need to start the Tamoxifen but can't seem to open the bottle and start swallowing those little darn pills. I understand the premise of Tamoxifen yet I'm still a bit apprehensive. Are you on Tamoxifen or one of the other drugs?

Keeping my fingers crossed our OncotypeDX results prove true to their word.

Marianne
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