Feel like I am being treated "backwards"

Druanne

So......I find a lump in my left breast.......they biospy it and tell me I have BC.......they remove lump...HAPPY CLEAR MARGINS YAY!!...go to radiologist for my CT simulation and to make schedule.......visit my Oncologist afterwards and find out I don't need chemo.......YAY......so what was my Oncotype score?? She says........well I didn't have one done because of your excellent path report.......I say ok.......she tells me that she is using my case in a seminar that afternoon and will see what the other oncologists think......I tell her I have another "lump" in my left breast that I would like her to feel.......she checks it out and says........"feels like a cyst"............"but just to be safe, lets do an ultrasound".........so I go down and get an ultrasound.......they find nothing YAY!!!! So home I go........having a wonderful evening and then my oncologist calls me......."Hey, the other oncologists feel that you should have the test and a baseline MRI....." REALLY??? After all this?? So now I have to wait for results of yet another test........and am having an MRI of my breasts next Wednesday............I should be happy that we are being thorough.......but I am just so tired of waiting for results.............just wanted to get the rads started & over with and get on with life.....(but now that's been delayed).....and thought....well why didn't we do a "baseline MRI" before EVERYTHING ELSE!!.......:/ bummin.......She also told me that if my score comes back either in the low or medium range she is still not going to recommend chemo.......that is not what I am hearing from everyone else so far.......but she feels really strongly that the toxicity of the chemo is more detrimental than beneficial with pathology results like mine............hmmmmm......very interesting!! Well.....now begins my hour commute home from work!! Let the weekend begin!

NatsFan

Druanne - what a rotten turn of events!!  In any event, no matter what your onc's recommendation, you may want to get a second opinion, just to have a second set of eyes review your entire case from top to bottom. Also, sometimes doctors explain the same thing but in a different way, and that helps you understand better.  

Are you near an NCI-designated cancer center?  http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list.html  It might be worth getting a consult there - nothing like having your case reviewed thoroughly and completely by people who at the best centers.  You don't have to be treated there if you don't want, but at least you could have all your options explained to you and they could give you their treatment recommendations.

Good luck! 

dlb823

Let's just hope & pray your MRI is clear and your Oncotype score is extremely low!   Otherwise, you may want to consider getting a second opinion from a different onc.  Unfortunately, a stellar path report can't take the place of a Oncotype-DX, which measures 20+ individual biomarkers.  I'm very surprised your onc thinks it does.  And I'm equally surprised your BS didn't get an MRI before doing your lumpectomy.  Thank goodness someone's caught these two omissions!     Deanna

pj12

Well, in defense of your oncologist's position regarding chemo, you are stage 1, grade 1, ER/PR +. There is an increasing reliance on aromatase inhibitors (and the old stand by tamoxifen) instead of chemotherapy when all these other signs are so promising. A second opinion is always a good idea and the oncotype test is such an objective resource though so why not dot all the i's?

Druanne

Thank you so much everyone!!!! It is so wonderful to come in here and talk about this kind of stuff.....I always feel awkward bringing any of this up to family or friends....since my lumpectomy & clear margin results I have stopped talking about it to anyone...........

I am going to be positive and just be happy they are being thorough! Thank you again! You have all made me feel a bit better I am also going to look into the NCI-designated cancer center website that Mary suggested for more information & to see if there is one nearby!

peggy_j

My understanding is that the Oncotype also considers the grade and size of the tumor so that makes it more likely to be low or medium. Also, as others have said grade 1 is the slow growing kind, and the most like normal cells so the "benefit" from chemo tends to be less. I agree that a second opinion can be good if you want it and should be covered by insurance.

Druanne

Thank you Peggy!! I kinda did have 3 more opinions as my Oncologist brought my case to a seminar where 3 other oncs changed MY ONCS mind about doing the test and having me have an MRI! You and I have almost the same diagnosis! What does the small letter "a" mean?

coraleliz

I think I had everything you're having done but in a different order. I'd want the MRI & Oncotype done for peace of mind.

TwoHobbies

I think you are being treated backwards.  Doing an oncotype is standard practice now.    Hopefully the MRI will be all clear and your oncotype low and you will have more peace of mind.  If you find any surprises, I would seriously consider finding another doctor.  It doesn't sound like she is really up on the latest treatment. 

Druanne

It will give me peace of mind for sure!!! I just wish I would have had the MRI before my lumpectomy.......because now I am worried about having more and that it could have all been taken care of from the start Staying positive!!!

hawk

Hi Duanna, we were diagnosed a week apart. I don't know if this will help you but I had in order: MRI, lumpectomy with clear margins, oncotype text, RS of 14, no chemo, this Thursday I start 36 rx, then tomoxifen.



Prayers for you for a clean MRI and low onco RS.

jennywong88

Is oncotype is a standard practice? My breast surgeon asked to do since my tumor 1.2cm and 1 lymph node involvement but onco asked to do chemo. I'm in Malaysia . Anyone can share some light here. Many thanks.  

peggy_j

Druanne Good luck with your MRI.  As an FYI, I've heard that it sometimes has a few more "false positives" (areas that might be suspcious but turn out to be nothing) so just an FYI. Stage 1a is for small tumors. I forget the exact cut-off but my tumor turned out to be 0.5cm. (it was hard to see on the mammogram so they had estimated 0.7 or 0.8 cm) Glad you're staying positive. I swear that whole period of waiting for tests (and test results) is more stressful in some ways than treatment. The not knowing can be really stressful. (so my hubby helped me cope by introducing "distraction therapy." We'd go for hikes or other fun things to get my mind off it.) Good luck!!! We're with you, rooting for a clean MRI!

SleeplessIn

From what I understand, oncotype dx test is usually only done when it is not quite clear what the recommended treatment will be.  It's done for stage 1 or stage 2, node-negative, er-positive breast cancers, I believe.
I had a lympectomy and snb that showed a stage 1 cancer, with clear margins and the 2 sentinal nodes they removed were clear, too. That would have normally meant "just" rads, followed by tamoxifen. However, the grade of my cancer went up from 2 to 3, therefore my oncologist suggested the test. My onco score came back very high, so I am now having chemo.... Had my cancer grade been 1 or 2, I would have probably not done the test (given the clear margins and clear lymph nodes).

I've read several recent opinions in medical journals that reflect oncotype dx can be avoided, and/or the result can also be predicted by simpler (and much cheaper) tests done by the pathologist after surgery. This is important to note, as the test sometimes comes back inconclusive, but it costs about $4000!!!!