Oncotype Test and your opinion

tlva

Hey Girls,

I am an oldie on the gynecologic cancer discussion board and and now a member of this board as well. Hooray???? I am Stage 1, Grade 1, ER/PR+, Her2-, Node- and will meet with the medical oncologist tomorrow. I chose to have a bilateral mastectomy 4 weeks ago,and my surgeon submitted my tumor for the Oncotype test. I have read a lot about the test and I am anxious to hear everything tomorrow, but want to hear from any of you who had the test and what role it played in your treatment decision.

Thanks,
Tammy

jakeca

Sorry
So sorry to meet you here. My oncologist used the Onco test to help determine my treatment. My number was a 32, which places me in the high risk category for recurrence, so even though I was considered a Stage 1 and at first was told "no chemo necessary" they changed their minds and highly recommended chemo. Major blow! But I wanted to leave no stone unturned in avoiding a recurrence, so chemo it was. I survived, both the chemo and radiation, and my hair is starting to grow back. I feel good that I did everything that modern science offers to protect myself.

Good luck.

Ltalcott

earlier discussion
Check out a thread that I started on 3/23 about this topic.

There's some information about the clinical trial that is going on, and I posted information I got from my oncologist (from the study) about when chemo is recommended.

My cancer looks about the same as yours, and I just today got my oncotype DX score back--9!

That means no chemo. There's always another shoe to drop--I had two cancer sites, and the 9 is the left breast. They just sent the right tumor/breast off today for a score. (Why not both at the same time, you are asking? Right!)

Anyway...I'm recovering from bilateral mastectomies and immediate reconstruction--looking at 5 years of hormonal treatment. No radiation, no chemo. (Unless the other breast comes back with a different score!)

Lisa

ohilly

I hate oncotype
this is just my personal view, but I got very upset at this test and did not see the point of it. The test is supposed to tell you whether or not you 'need' chemo (you can get a low, intermediate, or high score). My score was high intermediate, and the higher the score, the higher the chance of distant recurrence which is what tells you if you should have the chemo. In my case, I felt I would have had the chemo no matter what because I wanted to throw every weapon possible at my disease. So why did I have to hear that I have a high intermediate score? It only served to upset me and I would have done the chemo anyway.

I do realize, however, that not everyone feels this way.

best of luck,

Ohilly

pretty in pink

ohilly said:

I hate oncotype
this is just my personal view, but I got very upset at this test and did not see the point of it. The test is supposed to tell you whether or not you 'need' chemo (you can get a low, intermediate, or high score). My score was high intermediate, and the higher the score, the higher the chance of distant recurrence which is what tells you if you should have the chemo. In my case, I felt I would have had the chemo no matter what because I wanted to throw every weapon possible at my disease. So why did I have to hear that I have a high intermediate score? It only served to upset me and I would have done the chemo anyway.

I do realize, however, that not everyone feels this way.

best of luck,

Ohilly

Nervous Too
Tammy-
So far I am new in this battle and you are telling my story completely all of our results match to a tee-My Mom had her mastectomy 18 months ago and unbeknowst to me at the time I was supporting her I had a tumor which was also growing and not yet detected-All of my days have been a whirlwind since the mastectomy so at times there hasn't been much time to for me to dwell on much-but as things quiet down and I move forward it's getting more challenging-
I am also awaiting my oncotype test result which should be in on Friday-
Trying so hard to prepare myself-not sure for me anyway that is possible-
Still nervous and will be until I hear the results-So far I really try hard to take it all a day at a time and not to think too much (for me as a person this is tough my mind goes all the time)
I wish I had something to say-to help you feel better!
Please know I am with you and in your corner,hoping all goes well for you!
My focus now is on taking in everything positive/strong I can from all of the incredible people
on this board that is what is working for me! and keeping me focused-
All of the best to you-Please know you are not alone!
Pretty in Pink

mgm42

Oncotype Trial
I was part of the Oncotype trial because I did not want chemo if I could avoid it. Unfor tunately, my oncotype score came back a 36, which translated to a 24% chance of recurrence. I wasn't happy about my score, but I prefered having ALL of the information, bad as well as good. So, I had 4 rounds of taxotere/cytoxan, plus 33 radiation treatments (25 regular and 8 boost) and now am on Aromasin. I will be coming up on my fisrt year anniversary on June 26th. I survived the chemo and all of its side effects and the radiation and am surviving some joint and tendon pain from the AI. But, I have my hair, my eyebrows, and my finger nails and I feel GOOD! For me, the oncotype test, while an scarey score, made me go through with all of the treatments that my doctors suggested. And, I'm glad I did. Oh - because I had the chemo and radiation and am taking the AI, I have lowered the recurrence percentage to 14%. That's a significant improvement. Yes, it was worth it.!!!!!! Hugs, Marilynn

tlva

jakeca said:

Sorry
So sorry to meet you here. My oncologist used the Onco test to help determine my treatment. My number was a 32, which places me in the high risk category for recurrence, so even though I was considered a Stage 1 and at first was told "no chemo necessary" they changed their minds and highly recommended chemo. Major blow! But I wanted to leave no stone unturned in avoiding a recurrence, so chemo it was. I survived, both the chemo and radiation, and my hair is starting to grow back. I feel good that I did everything that modern science offers to protect myself.

Good luck.

Thank you
I feel the same way about the science and I want to know I've given it my all. But the test measures for risk of distant recurrence, and I'm not sure how valuable the results are for localized recurrence. I guess I'm just old school and can't get my head around anything else but chemo, so I'm praying for confidence in God's blessing of intelligence in His creatures!

tlva

pretty in pink said:

Nervous Too
Tammy-
So far I am new in this battle and you are telling my story completely all of our results match to a tee-My Mom had her mastectomy 18 months ago and unbeknowst to me at the time I was supporting her I had a tumor which was also growing and not yet detected-All of my days have been a whirlwind since the mastectomy so at times there hasn't been much time to for me to dwell on much-but as things quiet down and I move forward it's getting more challenging-
I am also awaiting my oncotype test result which should be in on Friday-
Trying so hard to prepare myself-not sure for me anyway that is possible-
Still nervous and will be until I hear the results-So far I really try hard to take it all a day at a time and not to think too much (for me as a person this is tough my mind goes all the time)
I wish I had something to say-to help you feel better!
Please know I am with you and in your corner,hoping all goes well for you!
My focus now is on taking in everything positive/strong I can from all of the incredible people
on this board that is what is working for me! and keeping me focused-
All of the best to you-Please know you are not alone!
Pretty in Pink

Hugs to you too...
Thanks Pretty!
I am actually at peace with this...it was not as bad as finding out about the endometrial cancer I had 4 years ago. I guess because I know I can get through anything. I am a constant thinker...my husband says I think too much as well as you! I am blessed that this was found as early as it was, and it is only because I felt the lump and told the tech when I had my mammogram. It did not show on the mammogram this year or last year. I have very dense breasts. It only appeared when they started doing more magnified views and on the ultrasound. What if I hadn't said anything?????
I went from mammogram on 2/13 to bilateral mastectomy on 3/16. The tumor was 1cm, grade 1, node negative and there was actually some DCIS in there as well that was not detected on the mammogram, ultrasound or MRI. So I'm glad they are gone!!!!
But in all honesty, I have had 2 girlfriends bury their children in the last year and there is no treatment for that pain. So if this is suffering, I'll take it any day over what they are going through. I'll keep you posted!
Feel the love.....

tlva

ohilly said:

I hate oncotype
this is just my personal view, but I got very upset at this test and did not see the point of it. The test is supposed to tell you whether or not you 'need' chemo (you can get a low, intermediate, or high score). My score was high intermediate, and the higher the score, the higher the chance of distant recurrence which is what tells you if you should have the chemo. In my case, I felt I would have had the chemo no matter what because I wanted to throw every weapon possible at my disease. So why did I have to hear that I have a high intermediate score? It only served to upset me and I would have done the chemo anyway.

I do realize, however, that not everyone feels this way.

best of luck,

Ohilly

You are entitled...this is for Ohilly...it got out of order!
I don't blame you at all for your opinion. Even though I don't know my score yet, I have felt the same way...maybe it's a darned if you do...darned if you don't test! But my surgeon has said don't do chemo if it is not going to give you a real advantage over hormones alone.
Things have improved so much in the last few years and all the money going to breast cancer research has certainly helped. My sister had Stage 2b left breast nine years ago, lumpectomy, nodes positive, 2 rounds chemo, extensive radiation, and then this year DCIS in the right breast. So she had a mastectomy January 25 and I found a small lump in my breast while sitting with her in her hospital room...talk about wierd!
God bless you and I hope we can meet here for many years to come!

tlva

mgm42 said:

Oncotype Trial
I was part of the Oncotype trial because I did not want chemo if I could avoid it. Unfor tunately, my oncotype score came back a 36, which translated to a 24% chance of recurrence. I wasn't happy about my score, but I prefered having ALL of the information, bad as well as good. So, I had 4 rounds of taxotere/cytoxan, plus 33 radiation treatments (25 regular and 8 boost) and now am on Aromasin. I will be coming up on my fisrt year anniversary on June 26th. I survived the chemo and all of its side effects and the radiation and am surviving some joint and tendon pain from the AI. But, I have my hair, my eyebrows, and my finger nails and I feel GOOD! For me, the oncotype test, while an scarey score, made me go through with all of the treatments that my doctors suggested. And, I'm glad I did. Oh - because I had the chemo and radiation and am taking the AI, I have lowered the recurrence percentage to 14%. That's a significant improvement. Yes, it was worth it.!!!!!! Hugs, Marilynn

Let's Party June 26th!!!!
Thank you for your story. I'm trying to keep my expectations low...at least until my appointment at 1 today! I think I'll have a Xanax just in case, so I can pay attention to the doctor. I know I'll survive, it's just my family history is horrible. My sister is a 9 year survivor as well.
I just wish the test had been around a little longer to see the real effectiveness of the scores. Ask your doctor about Adjuvant. online. It gives real statistics about women within your parameters and their survival rates 10 years later, based on the treatments they received. I did not qualify for the Oncotype Tailor trial beacuse I had endometrial cancer 4 years ago and that knocked me out as a candidate.
I'll keep everyone posted after my appointment today...we girls gotta stick together!

Thanks again,
Tammy

tlva

Ltalcott said:

earlier discussion
Check out a thread that I started on 3/23 about this topic.

There's some information about the clinical trial that is going on, and I posted information I got from my oncologist (from the study) about when chemo is recommended.

My cancer looks about the same as yours, and I just today got my oncotype DX score back--9!

That means no chemo. There's always another shoe to drop--I had two cancer sites, and the 9 is the left breast. They just sent the right tumor/breast off today for a score. (Why not both at the same time, you are asking? Right!)

Anyway...I'm recovering from bilateral mastectomies and immediate reconstruction--looking at 5 years of hormonal treatment. No radiation, no chemo. (Unless the other breast comes back with a different score!)

Lisa

Congratulations!
I had been reading your thread and was wondering if anyone was in the same boat we are. I did not qualify for the Tailor study, because my endometrial cancer 4 years ago knocked me out as a candidate.

I chose the mastectomy without reconstruction to prevent any obscurring of a recurrence. I had very dense, lumpy, bumpy breasts and did not want to have to feel that all over again. My surgeon said a flat field is easier to feel anything suspicious in her opinion. And I love not wearing a bra now! I have the bras with the soft foam falsies now until I get a prosthetic and I have found I'm more comfortable being flat!!! I was a candidate for reconstruction, but I don't like surgery and have been married almost 30 years, and my husband was very supportive of my decision. It just wasn't for me, but I totally support any woman's decision.

But since my sister had a mastectomy on January 25 after 9 years cancer free, I knew I never wanted to see the darn things again! I'll keep you posted!

tasha_111

tlva said:

Let's Party June 26th!!!!
Thank you for your story. I'm trying to keep my expectations low...at least until my appointment at 1 today! I think I'll have a Xanax just in case, so I can pay attention to the doctor. I know I'll survive, it's just my family history is horrible. My sister is a 9 year survivor as well.
I just wish the test had been around a little longer to see the real effectiveness of the scores. Ask your doctor about Adjuvant. online. It gives real statistics about women within your parameters and their survival rates 10 years later, based on the treatments they received. I did not qualify for the Oncotype Tailor trial beacuse I had endometrial cancer 4 years ago and that knocked me out as a candidate.
I'll keep everyone posted after my appointment today...we girls gotta stick together!

Thanks again,
Tammy

???????
Really, THEY didn't tell me anything at all, I seem to remember st 4 being mentioned but apart from that I'm not sure what I had. Am I Deaf, Daft or Ignorant?...Maybe they gave me all the details and the chemo brain flushed them. It would be nice to know so I'm making notes of all these technical questions and I'm going to bring them up with "Dr Charisma-Bypass" next time I am summonsed to be in the great mans' presence! Thanks all Jxxxxxxxxxxx

Piggies

Oncotype
I was diagnosed with breast cancer in July 2008, early stage 1. My oncologist told me about the oncotype test and explained all the reasons why I should have it done. I'm glad I did. I had a lumpectomy and no lymph nodes were involved. My Oncotype score was an 11 which was a good number and means a low chance of recurrence. I had six weeks radiation and no chemo. Obviously I would have had chemo if it was deemed beneficial, but in my case there was no added benefit to having it. I'm now on Tamoxifen since October 2008 and am having minimal side effects like a few night sweats and some minor mood swings. I'm too young for menopause and was worried about menopause like symptons. I'm glad I had the Oncotpye done and in my opinion, if someone meets the criteria for the test they should have it. What they decide after getting the results is their own decision.

tlva

Piggies said:

Oncotype
I was diagnosed with breast cancer in July 2008, early stage 1. My oncologist told me about the oncotype test and explained all the reasons why I should have it done. I'm glad I did. I had a lumpectomy and no lymph nodes were involved. My Oncotype score was an 11 which was a good number and means a low chance of recurrence. I had six weeks radiation and no chemo. Obviously I would have had chemo if it was deemed beneficial, but in my case there was no added benefit to having it. I'm now on Tamoxifen since October 2008 and am having minimal side effects like a few night sweats and some minor mood swings. I'm too young for menopause and was worried about menopause like symptons. I'm glad I had the Oncotpye done and in my opinion, if someone meets the criteria for the test they should have it. What they decide after getting the results is their own decision.

Thanks!!!
My score came back at 13 which was also in the low risk group, so chemo was no benefit to me as well. Did they tell you Stage 1 has a 96% survival rate? I did have a hard time getting my head around all the information, but after researching the NCCN, it actually recommended no further treatment at all. But my onc has recommended, and I am taking, Arimidex because I am postmenopausal. I had uterine cancer 4 years ago, and when I went to visit my radiation onc, he looked over everything and did recommend some chest wall therapy. I had a bilateral mastectomy at my choice and I do not want reconstruction...I do not like surgery! They did find some DCIS that we did not expect, as well as the invasive ductal, so I'm happy that I had my radiation onc look over everything for me and make this recommendation. My falsies look great and I'm happy! Hope you are doing well and feeling better soon! And really...we're women...do we need an excuse for a good mood swing?????

djteach

Welcome Tammy,
I didn't have
Welcome Tammy,
I didn't have the onco type testing done because I was diagnosed from the beginning with stage IV. I hope your test comes back the way you want it. You'll be in my thoughts and prayers.

Love and Gentle Hugs,
Donna