low oncotype score/still do chemo?

otter

LizC, you can send Kfalls a "private message" (pm) through the BCO system.  Look at the top of this page--there is a link under your login name that says "My Home".  Click on that link, and it will take you to a screen with a menu on the lefthand side.  One of the options on that menu is to check for, or send, messages.  It's pretty easy from there.

The advantage to using the pm system is that the messages are sent and received according to our BCO screen names (usernames).  We don't have to use email addresses to send or receive pm's.  Of course, you can always send someone your personal information (real name, address, phone, etc.) in the text of the pm if you wish.

Just a suggestion--it is probably not a good idea to put your email address in a post on these BCO boards.  These posts are public and can be retrieved through a Google search, so anybody with a laptop can see your email address.  If you decide it wasn't a good idea to post your email address, you can go back and "edit" that same post, deleting whatever you wish.

otter 

Kfalls

Hi Liz - I will -mail you today and then you should probably delete your e-mail from this site - just advice that others gave me before. I am in SouthCharlotte not far from TegaCay - Frenette is my oncologist and you will adore him! I will send you my phone number in an e-mail and I would love to talk to you.

Karen

janiceDC

Hi folks-- I am glad I found this site, as I wanted to talk more about this decision.  I am 49 and have bilateral bc, and had two lumpectomies (6 mm and 2 cm).  My Oncotype scores were 2 and 11 -- cancer behavin' (let's hope).  My oncologist recommended skipping chemo. She also mentioned that two years ago, the standard of care would have been chemo for my case.  Isn't this new test amazing!  I am starting radiation Monday and will do tamoxifen. Thanks for sharing your stories, I feel better informed.  Bless you all - my prayers are with you!

otter

OMG, JaniceDC, congratulations--I have never heard of an Oncotype score of "2"; and you got two very low scores!  While I was waiting for my Oncotype results, I had a bunch of women here chanting "low score, low score," and I was hoping for single-digits.  But, unfortunately, mine came back "26", so I'm getting chemo.

I'm glad some women benefit from the Oncotype testing the way you have.

otter 

Harley44

Wow, Janice!!  Oh, how I wish I had gotten a score of TWO!!!  But, alas, my score was 28! 

Good luck to you with the rest of your treatment!

God Bless,

Harley

janiceDC

Thanks for the encouragement Harley and Otter. You both are incredibly brave and admirable helping others. My prize-winning "2" score was on the left breast (and 11 on the right).  I was really scared about having bilateral breast cancer, but knowing that the left one was so low-scoring - has shifted my thinking to - heck that one wasn't going to do anything my entire life.  (It was found by MRI after the diagnosis on the right).  My onc said that MRI is so sensitive and finds every little thing -- they worry they are treating tiny cancers that would never cause a person a problem (and putting the person through the fear and all).  Well, all in all, I would rather know about it and treat it just in case.  I'm getting radiation both breasts starting Monday.

BTW, my radiation onc said she heard of a woman getting a "0" Oncotype score.  How would that be for good news! (what would that even mean anyway?)

To all in the conversation -- you are the intended recipients of my prayers and yoga practice offerings.  Peace.

Harley44

Janice,

I don't think I could trust a score of 0...  I didn't think there could be such a low score...

Anywho... good luck with the rads, girl!   

Good Luck!!

Harley

LizC

Congrats Janice on the low score. My surgery was 4/16 and still waiting for my Oncotype results. Should have them this week. Very scared, chemo is what is scaring me . But I will do it just like so many of you brave women before me.



The reason I don't have my results back yet is the nurse was to send off my tumor on the 19th. The day before her vacation.

But when I called two weeks later it still had not been sent. Anyway it is there now and should be done soon.



I need a path, I need to know what will be next. Everyone here understands. Glad I found this site. I will keep you all updated. Happy Mother's Day to all the Moms.

stacey2930

My onc score was an 8. I was diagnosed with 1.5 cm er/pr + node neg grade 1 tumor. I was 42 when diagnosed. No chemo for me just rads and tamoxifen:) scheduled to have an oophorectomy next month then onto Evista:)

Kfalls

Hey Liz - did you get my e-mail? Karen

janiceDC

Hey Liz -- I'm pulling for you.  I will visualize a low score.  Hang in there and know you will do great no matter what.   Janice

janiceDC

Hey Stacey -- sounds like you are doing well.  Can I ask you -- why did you do the oophorectomy and what was the timing of that about?  My onc has not brought that up.  I am still menstruating and will take tamoxifen after radiation.  thanks.

ekf

This is my first time on this board.  I'm so glad you all are out there.  I was diagnosed on March 17th with Stage 1 (0.9cm), Grade 3, node negative, ER/PR+, HER2-. I have since had a lumpectomy.  My Oncotype score is 18 (at the cusp of Low Risk category) and my oncologist says I can go either way with chemo...my choice!  I have been agonizing over it for days now, went to get a second opinion and was told the SAME thing!  The second oncologist said that because the benefit from chemo will only be under 4%, it is my decision...she says my case is in the "grey" area and she won't feel bad if I decide to forgo chemo, because the important thing is Tamoxifen...giving me a 50% boost.  I'm a journalist, so I was also able to pose this question to some of the top oncologists in the country (not as a patient) and they all pretty much say there is no guarantee either way...simply put, they really don't know if I would significantly benefit from chemo.  I have two kids and worry if I don't do it, I would be damned...but if I do it and suffer through the side effects and it still comes back, I would be crushed.  You are such brave women out there...can you please share your experiences and advise me? Thank you!!!!

didle20Diane

Sorry you have to make this decision.  You tumor is a grade 3 I am surprised they thought that you wouldn't benefit from chemo....oh I see they say 4 percent....what chemo regimen did they recommend?  I just finished TC x 4 for insurance and it was all really doable.  I didn't have many issues.    Did they put your stats into adjuvant online?  Wishing you luck in your choice.....you do have good prognostics!  You can see my stats in my signature line. 

Harley44

ekf

funny, but we had about the same stats:

I had IDC, stage 1, .8cm,  lymph nodes negative, grade TWO,  ER+/PR+, HER2 negative... 

My Oncotype was 28!!   I was in that 'gray' area, and my onc said  it would be fine with him is I opted out of chemo...  But, in the end, I went ahead with chemo, cause the deciding factor for me was that I knew if I skipped chemo, and it came back, I would NEVER forgive myself... 
JUST MY OPINION...   

I'm surprised that you are grade 3 and I was only grade 2, but my oncotype was higher...   go figure...

I didn't have too much trouble with chemo.  I had 'only' 4 tx of Taxotere and Cytoxan.  It was definitely do able.  They do give you pre meds, that help with any se's you may get from your tx. 

Good Luck with your decision!

Hugs

Harley

ekf

Thank you Harley and Meg for your responses.  I was crying in bed last night trying to figure out what to do...I can't seem to decide either way!  I'm scared to do it and scared not to...scared more to do it though.  Have any of you altered your lifestyle, like switch to macrobiotic diet to keep body alcaline, reduce stress. etc? I believe that it's the whole approach that makes a differece, but how big of a difference, you know? No doctor seems to be able to give me that answer yet.  Oh, my tumor was 0.9 cm, and it was interesting because when they measured it on MRI and ultrasound it measured 1.5 cm...but I switched to macrobiotic immediately and when they took it out it was 3/4 smaller...I almost wonder...

HeidiSue

ekf,  I really sympathize with you.  I just recently went through the same dilemma and in the end decided to do the chemo.  I had surgery and radiation, then had to switch to a new oncologist who said she didn't agree with the previous doc's rec against chemo and urged me to have it.  My oncotype score was 22.  My oncologist said the reason she felt I should do chemo was because my path report showed "moderate lymphatic space invasion".  It's tough being in the grey area.  Because I was in the grey area she recommended CMF, which is better tolerated than TC and she thought it had the same effectiveness for my stats. 

I came very close to not doing chemo, mostly because I was terrified of the effects, but my daughters (who are in their 20's) told me in no uncertain terms that they would be very upset if I didn't do everything possible.  That is what clinched it for me, that and the fact that I knew I would have big regrets if I went on to have metastatic dz and hadn't done everything I could. I can tell you that so far it has been quite tolerable, although I just recently started.

I feel for you.  Everyone has to do what's right for them, but it's not easy to determine that.  Good luck.

Heidi

Daylily

I'm curious as to how everyone dealt with their insurance companies on covering the cost of the Oncotype DX.  Mine doesn't have a contract w/ them and has only paid an "out of network" rate of $2290, which is about $1500 below what Genomic charges for the test... and now I'm expected to pay that balance.  What have your ins. co's been paying (according to your EOB's) and are others having the pleasure of making up the difference?

rockwell_girl

daylily did you know u can file for finacial aid through the onco type folks

at 1st my insurance wasn't going to cover any of it

I found out if a family of 4 made less than appox 70,000 I won't have to pay a dime of it...

but glad to say after about 3 appeals I got the insurance co to pay

lisa-e

daylilly, my insurance paid 100% for two oncotype tests (two different tumors).  Even though they had pre-authorized the second test, they balked at paying.  Geonomic Health contested the denial and my insurance company paid.  Geonomic Health contacted me before they contested the denial and told me they would go through several levels of appeal before billing me.  If it came to billing me, they said they would work with me on payment.

Markjuarez2002

hello my wife was diagnosed with breast cancer and had a double mastectomy with 7 nodes taken out. Prior to surgery, about a month, she had testerone and amidex pellets put into her bottom which are estrogen and progesterone inhibitors. With these pellets she does not have to take tamoxifen because it does the same thing without the uglside effects. The Oncologist has heard of these pellets but has never seen anyone who has had them put in. You can only get these pellets at a hormone Dr. like Dr. Melissa Hernandez from San Antonio,

Georgia1

Hi Sharon and all. I am Oncotype DX 18 with recurrence score of 11 percent. Because of my age (59) and favorable characteristics (small tumor size, ER+, no node involvement) my MO said she wouldn't even consider chemo for me unless my score was 25. So I'm doing just radiation and Tamoxifen or an AI.

Getting a second opinion is always good.