Oncotype DX score of 20 received today

Watercolor-The lab that does the testing had also called me before they did the Oncotype test. They told me that insurance might not pay for it and if they don't they can make financial arrangements (I have pretty good insurance). This test was so important to me it was worth the risk of having to pay for it myself. I would rather pay for it than have to do chemo if it wasn't going to benefit me. It turns out my oncotype score was 11 which meant no chemo for me (YEA!). My insurance company did pay for the test with no question. So I think it might be customary for the lab to call just to warn you that insurance might not pay.

Good AM Watercolor,

So glad your insurance is coming thru for the oncotype test.  It's not that it is the be all and end all but it does put an objective number to recurrence risk.  Mostly it just confirms what our doctors would do anyway but sometimes it tips the scale one way or the other.  

ARRRRRGGGGHHHHH.... the lung thing will never end!  When I had all those pre-op screening tests a little hazy spot showed up in one lung.  Everyone said not to worry, just follow it in three months... it would probably be gone.  So I had a repeat CAT scan 3 months later and the spot was very slightly larger... still just follow it, nothing to worry about.  So last Tuesday I had another (!) CAT scan and it is again slightly larger and now the pulmonologist wants to do a PET scan in early December.  I absolutely HATE being a nervous nellie, bordering on hypochondriac   I just don't want to worry about what might be... I have enough to worry over what is!  Intellectually I am sure it is nothing, emotionally it scares me to death.  

Ah well, it does lend a bit of excitement to an otherwise quiet life  

Wishing everyone a relaxed, no doctor weekend.

Pam 

HI Watercolor-Kay,

You certainly must be doctor-shy since your "almost brain surgery" experience!  Good Grief!  It is somewhat disappointing to learn modern medicine is fraught with errors and questions.  I know doctors are human but machines should be more consistent.  So, in the end, there was only one tumor?  BTW, what is the difference between partial mastectomy and lumpectomy?  Same thing? Are the terms interchangeable?

You are right, better to know sooner, I think.  BUT I believe the pulmonologist is only ordering the MRI because the radiology report keeps suggesting it and my PCP suggested it this last time.  The pulmonologist says malignancies have to be 1/2 cm to light up on an MRI and so far this suspicious area is not that big.  Has anyone else been told that?

So one reason to wait is to allow a little more time to see if it will get bigger.

Also I believe there is the prevailing opinion that just diagnosing a metatasis early, like screening and looking for bad things, is not any better as to outcome than waiting until the person is symptomatic.   My surgeon stressed that to me several times.  I don't mean pre-treatment when you are being staged but later, as years go by... no point in annual MRIs or bone scans looking for things until signs and symptoms show up.  That seems to fly in the face of early diagnosis + early treatment = cure.  But maybe the point is that once BC goes to mets there is no cure.  Now there is a blast of cold hard truth.

He actually would have waited a month longer but I wanted  to get things in during this calendar year before I have to start over on my large deductible.  Probably won't help but maybe next year won't be such a big medical exp's year.

This is "Bike Week" in Daytona and we get a lot of motorcycle spill over.  So we went out to lunch and they are like bees buzzing around your car.  Glad the weather is nice for them.

Pam 

Hi Linn,

The "gating" was part of the protocol for my radiation.  The technique is still considered investigational so my insurance  would not pay the full daily charge but the hospital does not charge the patient, rather writes off part of the fee.  I've copied a quote from the hospital's website:

  Intensity Modulated Radiation Therapy (IMRT) - IMRT combines the highest level of patient comofrt with fewer side effects than standard radiation therapy.  It is a highly precise radiation instrument that spares normal tissue, allows for superior dosing and treats tumors near critical areas.

It is more time consuming.  Every single day TX begins with a CT scan, followed by RT.  Some days it took 20 minutes, a few times it was close to an hour to get everything to line up right.  The gating or breathing meant they could monitor my chest movement and focus the beam appropriately.  When everything was right I would be told to "take a deep breath, let it out... take a deep breath and hold it.........................."  .that's when the machine would zap me.  Sometimes they would have me partially exhale which made me think it was pretty sensitive.  Radiation to the left breast is more risky for the heart, especially if the tumor is toward the midline.  I don't know that this eliminates the risk but at least they are trying.

My daily charge for RT was $1000.00, of which about $200 BC/BS denied as being investigational.  But the therapists told me they practice the "gating system" because they believe it is best for the pt and do not pass the charge on to the pt.  They did tell me that taking a deep breath moved the tumor up and away from the heart and out of the radiation field.

I hope they know what they are talking about!  The whole thing made me very anxious.  I would have stood on my head if they had said it made it safer.  

I did not go to a major cancer center... my local hospital is part of the Florida Hospital system.  But this is a competitive market so I feel like I have access to the latest technology.  I've thrown away all the literature they gave me when I started so can't be much more specific.  I imagine a Google search would turn up more info.  

 Best wishes for your course of treatment.  It seemed to last forever to me... but it did end one day and then I was nervous that it was over!  Go figure

Pam 

Hi Kay,

YOU all are here for me!!!  I have a good husband and loving grown children but I can only bombard them with the cancer cacophony so much.  My husband  takes it too much to heart, worries more about me than I do.  My children want the good news, the positive reports, and No Fear.  I don't blame them... that's what I want too. I have a couple good friends who want to be supportive but what I am learning is that only women who have lived it get it.  I get so much comfort from this site.... just reading and seeing people get stronger through the process... it makes me stronger.  I have learned to be a better person through this experience.

I have read about the face down radiation TX.   Doesn't it make perfect sense?  How great that it is accessible to you!  The whole technology just moves along so fast and it must be so difficult for hospitals to keep up with new technology.  Will you have to travel far for TX?    Glad you are going to get your trip in before treatment begins.  Seven + weeks of daily commitment to therapy really ties you down.  

Wishing you smooth sailing, figuratively and maybe literally... are you going on a cruise?

Pam 

I feel kind of foolish asking this question, but I never received and Oncotype score, nor was I tested for Brac1/2.  How come?  Also, I'm 2 years out from diagnosis and am now going to have a biopsy for a 2 cm x 1.4 cm x .5 cm "homogenous subcutaneous mass" on my chest wall of good breast. (sigh)  I stopped taking Arimidex after a few months because of achy joints and atomic hot flashes.  Should I be concerned about this Oncotype thing?

Pam, thanks for posting the info on Gating. I'm one week into treatment so it's not an option now (IF it was anyway). But I'm wondering if I can "duplicate" it in an amateur way by holding my breath on the inhale or exhale!

carrolmcc, Pam, I don't have an oncotype score either. I did have BRCA testing. Only if you have a strong family history will they recommend it. In my case it was strong. Not my Mom but 3 out of 4 of her sisters. Plus prostate cancer and probable ovarian cancer in my Dad's family, which are governed by the same gene as breast cancer. In my case insurance paid, because of the family history. Without strong family history it doesn't. I am also in an ethnic group that has high rates of BRCA (Norwegians!). You can opt to have it done on your own if you can afford it. I believe it was a couple thousand. If the results will not change your treatment then they also may not pay. In my case, if I had been positive, I would have opted for a mastectomy instead of the lumpectomy I had. If, for example, you have already opted for a mastectomy and all other treatments are the same, then there is considered no point in doing it...in which case insurance also may not pay. They explained this pretty thoroughly at the place where I had it done (genetic counseling center). But only for what applied to my case. There is a "second rung" of genetic screening, called BART testing, which I opted for and paid out of pocket. It is newer and insurance never pays for that. That was $800. Negative for that too. The geneticist still says the pattern in my family is suspicious, but there is no gene identified yet for some of these familial cancers. They will contact me if such a test becomes available.... but nothing is expected for years. Hope this info is helpful.

Ivorymom and all,

I have spent much of the day reading thru all the posts on this Oncotype Score thread.  Last night my onc called to tell me that my result was 21.  After reading (and rereading) everyone's thoughts, I was delighted to read your input re: potential for regretting chemo decision due to SE's.  This was sort of in my thoughts but you expressed it so well and clarified things for me. 

I am not 100% sure of my decision (not to do chemo) at this time, but greatly appreciate all the input from all the others who have wrestled with this decision.  It really helps to know others have faced the same dilemma and what factors entered into their decision.

Kay  Onc 21 

PAM,  

Happy Birthday!!

Hope you enjoyed your day.  Bet the weather was better in Florida than WI.  It has been raining here the entire month of Oct.  Very unusual.  This is usually one of our most beautiful months.  Are any of those bikers riding Harleys from Milwaukee?

Suddenly getting older does not seem like such a bad thing! 

In June 2008,,like Mawhinny,received an oncotype score of 30 and had an IDC,<1cm,stage 1B,grade2,0/2 nodes,ER/PR-positive,HER2-. My margins were clear. It was a wrenching decision,but given my age (61) and the small percentage of risk of recurrence improvement,I chose not to do chemo. I felt the systemic toxicity was not worth it for me. Each person is different and the decision either way is awful. My thoughts and prayers are with anyone who has to face this choice.I will say my oncotype being so close to high-perhaps,according to new medical trials,in the high range,helps me to keep taking my Arimidex every day,although it makes me feel very stiff and sore.

Hi Ang 7,

Don't know about the chemo, but definitely Herceptin. It is a monthly IV drug.  One of the newer effective therapies.  I had a friend go thru with that and she said it was not too bad.

Others may feel differently.  Hope your appt goes well.  I felt relief after seeing the oncs and getting answers and developing a plan. Of course that didn't all happen in one visit.

Kay 

Hi Pam,

Yeah, if trouble sleeping this is a great site.  I find I come to it at night just to see how everyone is doing.  The week after my surgery I slept and slept.  Guess it was effect of anesthesia.  Then for 2 wks I would wake in the middle of the night completely disbelieving that I have cancer (that feeling that it must just be a bad dream).  That week I saw my surgeon and I was so anxious she prescribed some Xanax.  I have only taken 1/2 tab on four different occasions.  Now that I know the results of all my tests and no chemo, I feel much better.  Didn't realize how great my fear was.

Have gotten to do some normal things lately...saw my 3 mo old grandson today and there is no better therapy!!   Hopefully sweet dreams tonight! 

Kay

This is my first post.  You gals have been helping me through.  Waiting for Onco score....as you know, waiting is the worst part.  Nervous about chemo decision...

thanks MAGOB.  All the positive messages from those who understand makes it easier.. next week I should know my numbers and meet with onco for plan.   

Hope your meeting goes well on Thursday.  Ask lots of questions and take notes - there's a lot of info to take in.  Let us know if you have questions, we're here for you. 

Mary