Oncotype - advice and timing please

Lories

Hi, after my diagnosis on 12/19 I met with my surgeon on Tuesday.  He advised the standard treatment for IDC as lumpectomy and radiation and scheduled me for an MRI.  I had asked about Oncotype testing and he said that is an expensive test that he would likely not give, although I may qualify (mother and sister with BC).  He said that an Oncologist would likely not be involved unless I had nodes affected.

My note taker kind of dropped the ball at this point, so I am wondering from your experiences, is this something the Radiation Oncologist helps me with?  or, do I contact a regular oncologist now, even though he said I do not need one yet?   I just do not want this cancer to come back and want every opportunity to blast it out of my body.  I would love collective thoughts please. 

Surgery is scheduled for the 5th so I am feeling a bit rushed, but may push it back.  thanks, Lori 

Lories

My surgeon said he was comfortable with whatever choice I wanted, either lumpectomy or mast. I just thought I should start with less cause once its gone its gone.

So, the oncotype testing is done with the surgical pathology, ok, that rings a bell, I am just getting confused. 

 Should I be meeting with an oncologist now, so far he told me to go to a radiation oncologist, but he is at the cancer center so that makes sense to chat with him about it. 

klp

Before I was dx with BC I set up an appt. with a BS. I had already had a mammogram that showed something that looked suspicious. When the final determination was in after more digital views,US, stereotactic biopsy I had the appt. with my BS and we scheduled a lumpectomy. After surgery and after learning so much from this board I asked about the Oncotype DX. I told the lab to go ahead and send the tumor out for testing. I'm on Medicare so money wasn't a problem. Medicare covered the expense. Between my surgeon and I it was decided, no chemo. My score was a 5. Later I had an appt. with an oncologist, then started radiation for 33 tx. Have 20 more to go. I will go back to my oncologist when rads are finished to decide if I go on Arimidex or Tamoxifin.

Anonymous

Loris - I met with a surgeon, oncologist and a radiologist at two hospitals.  They seemed to work as a team.  They would not discuss chemo specifics with me until I had surgery to be staged (node involvement) but did tell me that if I was node negative they would send tumor to oncotype. Node positive - chemo.  Mine is the same as yours - IDC, er/pr+, her2- so you are a perfect candidate for oncotyping if your nodes are negative - which is a good possibility.  I had surgery on 12/1 (lumpectomy).  I am node negative, so my surgeon kind of gave me the option to oncotype, and I said HECK YEAH or something like that.  I am still waiting for my info.  Due to the holidays and the hospital seemed to take a week or so to get the sample out.  I have heard from Genomic Health so I know they expect the info back by 12/30.  Oncologist is out until 1/5 so I meet with her on 1/7 to get the info.

If I were you, for sure call the radiation oncologist and ask about oncotype.  If they seem unfamiliar then ask for a referral to an oncologist that does oncotyping.  I think it is an important tool and feel lucky that I have the type of cancer that can be analyzed this way.  Your surgery date should be fine because they need to get the surgery done to check your nodes.  

I kind of understand where your surgeon is coming from as mine was fairly dismissive about it once he knew my nodes were negative, but he did give me the option.  FYI - Genomic Health told me that if your insurance denies the claim they will fight it for you and have a very good record - most ins. covers it.  You have to approve the test and pretty much guarantee that you will pay for it if insurance rejects it.

Good luck with your surgery!

Susan

IDC, 1.6 cm, Stage 1, 0/3 nodes er/pr+, Her2-, oncotype? reexcision pending?

webwriter

You're a little like me, I think Lories. My surgeon knew about Oncotype DX and we discussed it before surgery. He said I was a likely candidate. I turned up node positive, which essentially disqualifies me, even if premenopause doesn't--but we didn't know that until after surgery. You're doing the right thing by going ahead with it.

After that, you should be turned over to the brilliant Oncologist of your choosing. He's the guy that actually orders the test. He's the guy that sort of co-ordinates your plan of attack. You'll see a radiologist too, but that's later. After surgery, you've got to figure out the big picture plan for you.

After that, you see whatever doc is appropriate for your plan. Radiologist in there somewhere, probably, if you go lumpectomy. Your Onco will tell you when it's time.

First things first tho. Don't forget to breathe.

I'm 11 days out of lump/SNB and 8 days out of ALND. Meeting with my new (1st try anyway) Oncologist 1/6, so I'm just ahead of you in this process, I think. Drop me a line if you need to bend an ear for awhile. I'm movin' a little slow. But I'm movin'.

You can do it too.

Best Wishes,

Webbie   

P.S. I'm reading that trials are being done on the possibility that it can help early stage node invasion recurrance predictions as well. Hubby and I may pay out of pocket if we think it will do some good.  

rockwell_girl

I think they might want to make sure your node negative and er+ before saying they will do the test for sure.  Boy I hope you get a score of 5 like the gal above.  Just so you know if you insurance tries to fight paying for the test.  They have funding to help pay for it if you qaulify which my husband and i easily did.  I think a family of 4 only has to make under $84,000.  But after doing 2 or 3 apeals we finally got the insurance to pay for it like they should.

Good luck on your surgery

dlb823

Hi, Lori ~  It sounds like you are getting good advice from both your surgeon and the other ladies here.  If I understand your scenario, once they have the MRI and are certain nothing else is going on in either breast, then your surgeon will proceed with surgery, which will probably include a SNB.  If the bc has not gone to your sentinel node and he gets clean margins on your lumpectomy, the chances of needing chemo will depend on factors about your bc that the surgical pathology will disclose.  If chemo is not recommended, once healed from your surgery, you would most likely move directly into radiation. 

Oncotype testing is done if the question of whether or not to do chemo is borderline or not clearly agreed on by all involved.  So, you will need to have your surgical patholgy results inhand to understand the recommendation(s) for or against chemo.

At this point, unless you are at a comprehensive breast center where all specialists are under one roof or at least one medical center, what you might do is start asking people for recommendations for both an oncologist and a radiation oncologist.  That way, when it's time to move ahead, you'll have the doc you want to interview in mind.  Unless you're in an extremely busy area, getting app'ts. with those docs is usually pretty quick, once you have all your reports and are ready to move into their area of expertise.

Good luck, and please keep us posted ~  Deanna

Lories

Hi Deanna, Sandy, Webby and Susan +, thanks so much for all the info. 

I will be seeing a radiation oncologist next week, as recommended by my surgeon, and he is in a cancer center, so I will start with him and move forward.  I really appreciate all the info and hearing your experiences.  thank you all. 

It seems that a main ingredient with cancer is waiting.  (and one wait is waiting until your 24 hours is up so you can post again on this site, ha ha) 

 all my best - Lori

Mush22

Hi, I have a question....... I was diagnosed with Leukemia 4 years ago and went through the horrible ritual of the intense chemo, etc. and have been in remission for the last 4 years. I have only been off all meds for the Leukemia only 6 months when i was diagnosed with Breast Cancer. It was classified as IDC and I had a lumpectomy and a sentinel node biopsy which turned out clean. I understand that I am estrogen receptor positive. My surgeon had referred me back to my original oncologist, whose specialty is Hematology, although he has treated breast cancer patients in the past. He is running the Oncotype DX test. I have to see the surgeon and my oncologist on Jan 6th and I have already met with a radiologist for radiation treatment. Haven't started that yet. My question is----- my oncologist seems to be up on the BC stuff but should I consider going to a Breast Cancer only oncologist, if there is such a thing, or if I have any doubts syggest to him that he/we consult another doctor?



He has mentioned Tamoxifen to me but I am post menopausal as I was forced into menopause from the radical chemo I had gone through. I haven't has my period since Sept 2004.

I am terrified of all this stuff, worse than with the Leukemia. Can anyone help elaborate on some of this stuff for me. I would be very appreciative of any help.

Thanks, Michele

dlb823

Hi, Michele ~  I can't believe you battled leukemia, only to be challenged now with bc!  That just doesn't seem fair!  I'm really sorry. 

As far as the best oncologist goes, you'll find that many of them don't agree on tx.  If I was in your situation, I would let your current oncologist give you an opinion after you get your onco type results, but then probably still go to a major breast center for a second opinion, which you can always take back to your original onc if he's more convenient.  It's not so much specializing  in bc that concerns me for you, it's the fact that you've already dealt with leukemia.  And, because the major breast centers see the most patients, your complex situation will be one they've no doubt come across before, and that experience might prove to be extremely valuable in treating you.  For example, one of the chemo drugs (Adriamycin) actually causes leukemia in a very small percentage of women.  This might not be a huge concern for the general population, but for you it could be a critical piece of information.  Good luck with whatever you decide to do, and please keep us posted ~   Deanna