Oncotype-DX Test & Tailor X Test

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mcjane
Regular Member


Date Joined Jun 2009
Total Posts : 285
   Posted 9/27/2009 10:24 AM (GMT -7)   
Read about these tests on breastcancer.org
Expensive, about 3900.00 Medicare will pay and some insurance Companies will...so check first.
If ins. says no your onc will contact them and let them know the test is much cheaper than years of chemo, ususally changes their mind.
 
What I'm getting from it is that the test will be able to let your onc know if you need chemo or not.
 
For Tailor X I  think you have to be HER2/NEU-Neg that has not spread to your LN...not 100% sure.
 
Anyone have this test done?
 
If my LN are cancer free which the biopsy says they are and pathology confirms I'm thinking of asking my onc if it would be a good idea for me.
I'm HER2 minus   E 100% R +, P 60% R +
 
Need to go back and read again to try to sort it out to be sure. So confused.
But am interested to see if anyone has experience with either test.
 
Jane

LdyJane
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Date Joined Jun 2008
Total Posts : 903
   Posted 9/27/2009 10:39 AM (GMT -7)   
Hi Jane, I'm stuck in some sort of limbo with mine. My mastectomy was done on July 29th; I had switched surgeons and the new Dr.'s anticipated only extensive DCIS, which I had, but they also found IDC; they didn't do sentinel node.

The oncologist ordered the oncotype and it came back inconclusive...wasn't expecting that one. Found out that the sample that was sent didn't have enough of the cancer cells to test. Now it seems that the pathology lab/dept. whatever, can't find my other tissue samples! They've talked about doing an axillary node dissection, but I'm sitting here, almost 9 weeks out and we haven't started any treatment at all. Granted, compared to some of the other wonderful women here, mine is not that bad, but it is very frustrating and frankly, I am not sure what to do at all.

They have a very good website to get information on the on the oncotype and TailoRX www.oncotypedx.com

I hope you have better luck than I!
Janice

mcjane
Regular Member


Date Joined Jun 2009
Total Posts : 285
   Posted 9/27/2009 10:51 AM (GMT -7)   
Hi Janice, doubt it about better luck. That's why I come here usually someone can break it down for me.
Marisa Weiss, pres & founder of BC.org is my onco so will have a talk with her. Haven't had surgery yet, all testing & 2 biopsies done. Diagnosed 4/26
Expect a call anyday and anxious to get started.
With lumpectomy I know I have to have rads, trying to duck out of chemo or any meds. I have idc too if that matters, don't know.

Understand very well what your going through waiting.


Nine weeks out and no treatment started...WHY, sounds unreasonable.

LdyJane
Veteran Member


Date Joined Jun 2008
Total Posts : 903
   Posted 9/27/2009 11:33 AM (GMT -7)   
Jane, I'm so frustrated and tired...we started with a phased reconstruction at the time of mastectomy using a tissue expander. The plan was to keep this in place until a later date when I could do the full reconstruction. I've developed capsular contracture and I have excessive lymphatic drainage too. The drain from the mastectomy wasn't removed until 6 weeks and only because they had to remove it, I was still draining a lot. Now with the excessive scar tissue build up I have to have the tissue expander removed in about a month. I'm truly wondering why I went for reconstruction in the first place!! (and just to help matters, I had shoulder surgery last Thursday...I'm truly ready to jump ship!)

I see my breast surgeon on the 6th and the oncologist the same day...I'm not sure how to address my questions about why and could use some advice there!
Janice

mcjane
Regular Member


Date Joined Jun 2009
Total Posts : 285
   Posted 9/27/2009 5:38 PM (GMT -7)   
Janice, sounds extremely painfull....tissue expander, capsular contractures, excessive drainage
OMG way too much and what can be done about it?

I would feel victimized and that is what we are when doctors suggest choices that might not be right or have so many possible problems lurking. I certainly hope that all this gets resolved. Never liked when I hear tissue expanders...sounds painfull.

Hope my choice works out better, lumpectomy, and surgical repair including a much needed breast lift all at the same time. Overnight stay. Forgot probably a lymph node or two for pathology.

Have no idea what to say to your doc & onc except how can we fix this and soon.

I'm new at all this BC stuff, just diagnosed Aug. 26th. Maybe someone with experience will post...lots of very savy posters here that can help more than I can.

If no answers then start a new topic it will catch someones interest that has been through this or knows something about it.

How about breastcancer.org fantastic site and a message board too...please check it out.

Will be watching to see if you get help.

Jane

mcjane
Regular Member


Date Joined Jun 2009
Total Posts : 285
   Posted 9/27/2009 5:44 PM (GMT -7)   
have to say my biopsy says nothing in my nodes, but doc says she will remove one...no doubt sentinel just to be sure. I also have IDC

So why didn;t they remove your sentinel node for pathology...can't understand that one.

How do you feel about your doctors, happy with them?

LdyJane
Veteran Member


Date Joined Jun 2008
Total Posts : 903
   Posted 9/27/2009 6:56 PM (GMT -7)   
The mammogram showed nothing but a small cluster of microcalcifications and the pathology from the first surgeon/wide excision biopsy didn't indicate anything but the DCIS. What was odd, was when I started asking too many questions of the first surgeon...she got quite angry..which is why we searched for someone new.
After the mastectomy, my new surgeon was fairly upset..not at me mind you, she said it was an impossibility for the first pathology to have not shown invasive...an impossibility. I don't know why that is, but there you have it just the same. It was because of the mammo and the pathology that they didn't feel that there would be anything other than DCIS. She did come upon 1 node during the mast., and that was negative, but was that a sentinel node? I haven't a clue.

Thinking back on it though, we met with the radiation oncologist at that time, he said this wasn't your typical DCIS, but serious, angry stuff; the first surgeon blew that comment off completely...makes me wonder now.

We are actually quite comfortable with the new surgeon, even with this situation; it's the oncologist that I'm having an increasingly frustrating time. I have checked out breastcancer.org..
Janice

mcjane
Regular Member


Date Joined Jun 2009
Total Posts : 285
   Posted 9/27/2009 8:20 PM (GMT -7)   
Saw your "Fired My Surgeon" post and good for you.

Not understanding much about microcalcifications I'm wondering it that called for a mastectomy.
I was under the impression DCIS was a better diagnosis than IDC so why not a lumpectomy since the tumor had not spread.

As for finding out if a sentinal node was removed, ask or better still request a copy of your surgery report it should tell you. I always get copies of everything, you have a right to have them.

You should also get copies of every test you had done and see what you can figure out what they found.
I have copies of everything. I don't understand all of it, but enough to get by.

Glad your happy with your new surgeon that and confidence is half the battle.

Jane

LdyJane
Veteran Member


Date Joined Jun 2008
Total Posts : 903
   Posted 9/28/2009 5:01 AM (GMT -7)   

Hi Jane.  I had a stereotactic core biposy first which found the DCIS; after that I had the wide excision biopsy/lumpectomy.  In that I had extensive DCIS, grade 3 without clear margins and more at a second, distant site.  At that point she told me mastectomy because there was no guarantee of clear margins on a re-excision.  When I started asking questions is when she became angry and that's when I looked and found a new surgeon.

My new surgeon told us more in one hour than my old did in several visits, we're very comfortable with her and went with the mastectomy; the mastectomy showed residual DCIS and a section of < 1 cm IDC.  I hope to see her next week, maybe she can shed some light on this whole mess.

I agree with you, I get copies of everything!


LdyJane
Veteran Member


Date Joined Jun 2008
Total Posts : 903
   Posted 9/28/2009 10:22 AM (GMT -7)   

Hi Jane, I just spoke with a customer service rep at genomic health; they had conversations with the pathology section at the hospital on Friday and apparently there is another block.  This has been sent and GH is expecting it today or tomorrow; they hope they can get enough to test from this one...third time's the charm????

Janice


mcjane
Regular Member


Date Joined Jun 2009
Total Posts : 285
   Posted 9/28/2009 9:16 PM (GMT -7)   
Need you to explain "another block" Janice....don't understand.

Not sure if your surgery was done right,,,was it?
Wondering why your having so much trouble.

How can DCIS be extensive,,,thought it was contained.
Heard stereotactic biopsies are painfull is that true?

New to this you know, but I'll catch on.

Jane

LdyJane
Veteran Member


Date Joined Jun 2008
Total Posts : 903
   Posted 10/8/2009 4:21 PM (GMT -7)   
Hi Jane, I've been off for awhile, just had shoulder surgery..can't seem to stay away from Dr.'s & hospitals and still hurts to type. The biopsy, compared to shoulder surgery, is a walk in the park... but yes, there is discomfort, for some more than others.

DCIS is cancer that is in the milk ducts within the breast; these milk ducts are quite extensive throughout the breast and the DCIS I had covered about 40% of the ductal tissue; it looks and acts differently than a lump or a mass. Picture an department store with lots of aisles, these aisles are the milk ducts and the cancer is running down the aisles, but not leaving the aisles to go look at the clothes. It's when it decides to actually break free from the aisle and go look at the clothes that it becomes invasive.

When your tissue goes to pathology is segmented into "blocks", so depending on what is sent you can have many blocks are just a couple. Anyway, to update you on me; this final block had enough cancer cells for the Onco testing; my score?, a nice and cozy 14! So no chemo for me, just Arimidex..the postmenopausal version of Tamoxifen.

Was my surgery done correctly, I think so, yes. She called me her 1 in a million patients...not necessarily using that exact phrase, but I am very rarely "textbook", so it doesn't surprise me.

I still have to have surgery to have the tissue expander and scar tissue removed; the visit with that Dr. is next Tuesday.

Janice

mcjane
Regular Member


Date Joined Jun 2009
Total Posts : 285
   Posted 11/14/2009 6:51 PM (GMT -7)   
Hi Janice,
So sorry for the long delay replying.
 
Great oncotype score 14, I'm 15 and happy with that so it's Arimidex for me too. Dr. told me side effect was hot flashes...she forgot to mention about 20 more !
 
Margin was not clear so a waiting for another surgery to be scheduled.  I had a choice surgery or hope rads will get the rest. Posted here for opinions and all say surgery...so that's my choice.
 
Wondering how your shoulder is as well as tissue expander, capsular contractures, excessive drainage.
Sounds rough.
Really appreciate the very easy to understand way you explained DCIS. That;s the way to do it.
 
Hoping the new surgery does not mess up my breast lift, but am assured the Plastic surgeon will fix it if necessary.
 
So, how are you doing.
 
Jane
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