Question about the "intermediate range" on OncotypeDX

AllieM

Got my first chemo today (TC), so far ok. Thanks for the well wishes.

Hope everyone is doing well.

Jude123

When is this test usually done? Before or after surgery?  Also I am reading people talk about MO (Med Oncologist) when do you seek that out. Right now I saw the Surgeon (sched for 4-30-13) and I have an appt with the RO (Rad Oncologist) on 4-15-13.

Is this the test that decides whether you proceed with removing the other nodes? Just so confusing and I am trying to get this straight. I am writing a whole list questions to ask, however which Dr do I ask now is another question?

I have learned so much from all the various forums I would be totally lost if I had not found this. Thank you all for sharing!

ReneeinOH

Jude.  Test is done after surgery.  The send the tumor that they've removed at the time of surgery to the place that does this testing.  I think they wait to see if you have node involvement--if you do, it is assumed that the cancer has gone beyond the breast and chemo is needed (so, no need to run this expensive test).  You also have to have the right stats (looks like you do).

I didn't meet with an oncologist until after surgery, after my oncotype test result came back.  Node removal comes at the time of surgery.  They will start with your sentinel node to see if cancer is in that; if all clear (which happened to me), then they don't remove more.  If positive, they keep working their way up through the other nodes.  (I'm sure your dr. can explain this better than me.  Also, the resources on this site offer good explanations: http://www.breastcancer.org/treatment/surgery/lymph_node_removal, http://www.breastcancer.org/symptoms/diagnosis/genomic_assays)

I can't tell by your signature--did you have surgery?  I'm thinking you must have since you had staging.  Did you have, or are you having a lumpectomy (that's why you're meeting with an RO)?

Jude123

Thanks for your response Renee, no I have not had surgery it is scheduled for 4-30-13 (LX). I saw the surgeon on 4-3 and when she was discussing everything (actual alittle fast for my comphrehesion) It was just so overwhelming. I have been reading the forums and trying to put everything to together.  

During the appt, she discussed the sentinel node biopsy and the procedure. I indicated that if it is the standard protocol (persay) to continue to take out all the others (to not have to go thru another surgery). However after reading about this test, I am wondering if I should wait to see the test result of the Oncotype before removing them all (or do they only remove the bad ones)? Am I understanding this correctly?

I can not express enough how grateful I am for finding this forum.

ReneeinOH

Please read this link Jude: http://www.breastcancer.org/treatment/surgery/lymph_node_removal

Your doctor will know if and how many nodes need to be removed.  Removal of all lymph nodes will not avoid future surgery, if determined.  You really don't want them removed, if can be helped--they serve a great purpose, and your risk for lymphedema is greater the more nodes that are removed.  

There is no connection between lymph nodes and oncotype.  Looking at your lymph nodes tells the doctor the possibility of whether the cancer could have spread to other parts of your body.  The oncotype looks at your cancer tumor (does 21 genetic tests) to predict the likelihood of recurrence--and that helps them figure out whether chemotherapy would be a benefit to you (to reduce likelihood of recurrence).

voraciousreader

Jude....Are you premenopausal?  If so, AnniceMD started a thread for us premenopausal, Grade 1, Stage 1 gals.   Come join us...her thread is PACKED with helpful information......

http://community.breastcancer.org/topic_post?forum_id=108&id=773534&page=1

Jude123

ReneinOH thank you for clarifying the two. I spoke with the nurse navigator to express my concerns about removal of the nodes and she stated that based on my DX and that I am a candidate to do RT via MammaSite that it is highly unlikely it has spread to the nodes. But you just never know and praying that it does not change. Based on your bio, I see you recently had surgery and I hope all went well with that?

Voraciousreader: Yep still having those monthly . @51 yrs old. The nurse navigator indicated the ER/EP+ was a good thing? Am I ER/EP+ because I am pre-menousal?  Thanks for link I will check it out

kira1234

Jude yes being ER/PR+ is a good thing, but has nothing to do with still having your period. Even after we stop that we still have estrogen in our bodies. It comes from the fat we have around our waists. I was 57 when the cancer was found, and hadn't had a period for several years.

Jude123

Oh boy I am trouble because right now I have alot of fat around my belly! I am told that i will have to start taking Tami...(spelling) for 5 years which will stop the estrogren and if I remember correctly I will then go into menopause?

kira1234

I'm also on Tami. Tried the Al's but the SE's we very suvier so Dr. took me off them. I also have lots of extra fat around the middle.

I think the meds continue till natural menopause. If you need chemo that quite often does stop it.

Jude123

I am being told right now that Chemo is likely not necessary which I am so happy about that. Researching the side effects of Tami is on my radar as I tend to be sensitive when it comes to side effects. However right now I don't think I can fit anymore new info in my brain as I am still trying to sort thru the information that I have obtained these past few weeks!

kira1234

I well remember the feeling of to much info, and sort of I've totally lost control of my life. This will last until you're final path report, and a plan is truly set in place. I'm almost 3 years past, and am enjoying my life again. You will find lots of support from others here. You will even find there are several groups of ladies that try to get together around the country. We have a very active group here in Tampa Fl. has had been great for me.

Jude123

That was what I am thinking that the final path report will be the deciding factor. I very interested about having the Oncotype test and will pursue getting done

Jazzygirl

Jude 123- my diagnosis is similar to yours in some respects. I only had the sentinel nodes biopsied and removed.   As I understood it from my surgery, they would check that one first and if it was positive, they would have gone further. But there were no issues there and it sounds like you are hearing the same. 

You are going to do the internal radiation which is much easier than the external radiation as I understand. I had something similar, but a series of catheters vs. the balloon. It was very do-able, but you may feel some fatigue afterwards.

Also, I had the oncotype tests too which will give you the risk of distant reoccurrence and help to determine if you may also need chemo (not always recommended for early stage cancers with no node involvement). Based on my results, the benefit of chemo was not going to be worth it. My med onc did suggest I consider taking Arimidex but for a longer period (10 years).

Also, there are better treatments available for those who are ER/PR positive. That is probably why your nurse said it was good that.

Good luck and keep us posted on how you are doing!

edwards750

Not exactly true Renee. I had a micromet in my SN and my ONC still ordered the Oncotype test done. Apparently if it is that small they consider it node-negative. My treatment plan was riding on the results of that test and I am ever so grateful BCBS paid for it. It is very pricey - like 5k but certainly worth it if you can get insurance to pay for it. My score came back at 11; recurrence of 8% with taking Tamo or Arimidex.

Cuetang

For my insurance company, if your lymph nodes come out positive, they won't cover the Oncotype because they assume that you will have chemo-- therefore to them, paying for the test would be pointless.

Lee7

I was able to get the Oncotype done and covered by BCBS with a macromet(>2mm) positive node and very glad to have the results.  The Onco was done on my actual tumor also where the other tests was only on my needle biopsy so I felt the Onco was more accurate.

Jazzygirl

Hi ladies- one thing to share with you about the Oncotype DX test with respect to insurance. My insurance approved it then denied it once they were billed. Genomic Health asked for my help to appeal it, which I did. This finally got resolved, but they did not get the full amount they were looking for (like half, which seems to be true of most things billed to insurance) so now they want me to go back and help them to appeal for more money. So this goes on and on, and just thought for some of you who get approvals, be ready for a hassle to get this test paid for.

ReneeinOH

To share my experience: With a 11 oncotype score and my other stats, chemo not recommended.  Would only reduce recurrence chance 2-3%, so MO said SE and risks outweigh any benefit.  She said one of the benefits that chemo would have on me (pre-menopausal) is chemopause--stopping my periods, so am doing chemical ovary suppression, as well as Tamoxifen=-be on that for 5 years, and then on an AI 5 years after that.  Also will get Zometa (every three months, I think?), which helps with bone density, and studies are showing that there's additional benefit (contribution?) to reducing recurrence.

When I asked my MO about longer term, where will I be with all of this, she was optimistic.  On top of me being statistically in good shape, she said I'd be on these estrogen suppressing treatments for the next 10 years, and 10 years from now we'll have that much more information about BC treatments.

edwards750

Jazzygirl...same thing happened to me. BCBS approved the test and then reneged. Genomic said that was typical of them but they didnt seem worried they could/would get it approved. They told me they were going to appeal the decision but they never asked me to help them. I would have to be sure because that test was my survival kit and besides they approved it and pulled the Charlie Brown stunt? I also know that Genomic, if you have to bear some of the burden of the cost, will work with you on a sliding scale. In addition, a radiologist who goes to our church, told us at a meeting the other night that the cost is coming down. Frankly we didnt have an extra 5k upfront, with all the other bc expenses that insurance paid a portion of, but we would have paid the sliding scale amount whatever that might have been. My ONC said this test is crucial when in doubt about a treatment decision and the radiologist I mentioned, agreed. She said it is an accurate barometer of your particular tumor and one that if you can qualify for, you should have. Over treatment and subjecting women to pain and financial stresses they dont need have made this test for some drs, a must have. diane

edwards750

Cuetang - I can understand the logic of the ins company if you have lymph nodes affected. Mine was approved because it was a micromet and my BS said they had to slice and dice to even find it. Had I not had the Oncotype test done I am positive I would have done chemo.

Jazzygirl

Hi Edwards750- yes, it was BSBC for me as well. I was glad that the appeal for payment was successful. I got a check and sent it off immediately to Genomic and they said they got it. So I was surprised they called this week and said they were going back for more. And that is fine too, I was just hoping it was done. They indicated they were not going to require me to pay anything- it is completely between them and BSBC. I went through the same thing with my BRACA test with another lab. These genetic tests were the only things I have had to work at to get paid.

I am glad I had the test as it resulted in a good discussion for me to not need to do chemo. I am not one who wants to be over treated for anything and know the stats around that with breast cancer. 

Appreciate knowing you had a similar experience and figured other women here might want to know about this financial aspect of this test.

AllieM

Hi all,

My ins. (Aetna) paid a good portion and the Oncotype people said I probably would not have to pay the remainder because I make less than 70,000/year. They are sending me some paperwork to fill out for that. Just FYI - you may be able to get a reduction in your portion if you are within the income guidelines. My lymph nodes were negative, so I don't know if that makes a difference. I know that some ins. companies like to deny just about everything the first time around. I think they hope that some people will just pay without questioning it.

bevin

I had BC/BS as well. They paid the majority of my bill and what they didnt pay, the Genomic health people waived. They (Genomic Health) have a program you can get for assistance to pay for the test.  Even with a 6 figure income we qualified and they waived the balance for me -which was a pretty sizable balance. They really want people to use this service and their test and as such are very helpful in getting bills paid and working with you on a financial solution. Most insurance companies will pay as it's cheaper for them to pay that bill and than to pay for Chemo.

Good luck. Call their customer service people and ask about financial assistance. Well worth the few minutes on the phone it took me.

Bevin

Jazzygirl

Hi folks- still trying to get the Genomic claims worked out. They are reappealing for more money as they got paid about half of the billed amount for the two tests that were done last year, and said that since I had auths for both, if they would not make me pay for anything the insurance company did not cover. Now I am getting different letters that say that if they are unsuccessful with the re-appeal process, that they will be billing me for the balance due (which may be well over $4000). I am assuming they cannot make you pay for the balance once they have been paid the contracted amount. I may call their customer service and discuss this with them tomorrow. Too many mixed messages here.

edwards750

Hey jazzygirl...I doubt they will bill you for the balance and wouldnt think they could force you to pay the difference either. Genomic Labs told me they would keep me posted when BCBS reneged but they never did. We have a 6 figure income too; have no idea what they would have had us pay based on our income. Thing is Genomic Labs called BCBS before they even accepted my tumor sample so really unfair to screw them over. I agree they are trying to encourage more people to do the test. Definitely worth it if you can. diane

Jacqie

So how are you now Jeneaubug? I am at the decision stage. My Onco score is 24...no cancer in the lymph nodes, stage 1, 1.2 cm lumpectomy done. I always thought I was a good decision maker...but I am really having a hard time deciding whether or not to do chemo. I am 64 so post menopausal. I just don't know what to do and am looking to find others who were in similar situations and what their outcome is.

Moderators

Hi Jacquie,

This topic is quite old, so we are suggesting that you start a new topic with your question in order to get more feedback.

Thanks for joining the community, and please let us know what you decide!

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