Oncotype DX test and chemo questions?

julia2

I just wanted to add my experience, I am stage 1, grade 1, 0.7cm, ki-67 22%, with an Oncotype of 33!  Huge surprise, and one that I wouldn't even know about if I hadn't insisted on the test as my onc felt it wasn't worth testing as I was clearly going to be low risk!  It would appear that what is driving my score is my low ER+, it has been reported as 35%, 36%, 25%, and by Oncotype as 7.1, so pretty weak.  My understanding is that you have to remember that oncotype is looking at risk with tamoxifen versus risk with tamoxifen plus chemo.  Tamoxifen isn't going to help me nearly as much as you lucky ladies who are 80% or 90% ER+.  

Julia

kira1234

Julia,

Your score is much higher than mine, but I was also suprised by my score of 24. I also have a high ER score, so not sure why. On another note I spoke to the oncologist today, and was only told how much chemo could help me which is about 2.5%, but not pushed either way, so now it is left up to me to decide. I have 2 weeks till the next visit, which leads me to think chemo might not be so important for me.

Karen

llswong

Julia and Karen,

I also did an Onco test.  Apparently, they give a heavy weighting for the proliferation group of genes, followed by the HER2 group.  Both will push up the score.  On the other hand, the ER and PR group will reduce the score.  In my case, my Ki-67 index is 9% and my onco score is 8.  I have high ER and PR scores too:  10 and 9.8 on the Oncotype scale.

kira1234

liswong,

The KI-67 for me was 13, which is a little high, I also had a 4 on the p53 which I was told was a negative as well. My ER is high at 9.5, but oddly in their test my PR was negative. In my other 2 tests it came back positive my oncologist felt that was more than likely wrong. I was asked to join the TAILORX research, but can't with a small tumor they only want high risk people, which I'm not. Well still must decide chemo yes or no over the next 2 weeks.
Karen

marlenet

My ER score 69% PR 83. her--Chemo is a though decision. It was left up to me to decide.  I too could not join the TAILORX due to a small tumor. I did chemo because of my age. Being 44 I decided to go for it. I am happy with my decision.  Chemo is doable and I did it. For me , and I am only speaking for myself-i have to regrets doing chemo.  Good luck with your decision.

kira1234

Marlenet,

What chemo did you Dr. put you on? Mine is suggesting the TC regime. She say's the side effets aren't as bad a some of the others. This was when we were thinking I would be able to be in the TAILORX study. It's a shame we couldn't be part of it because of the tumor size, and grade 1 or 2, but if we were grade 3 I guess we could have been.

Karen

Karen

marlenet

Karen

That is the same chemo I was on Taxotere and Cytoxan 4 treatments.  I worked almost the entire time.  The few days I missed were because i picked up a bug, so I was out for 2 days of work.  The only other days I missed were treatment days.  It wasn't all that bad.  I listened to my body, got  a lot of rest , did a lot of water drinking and walking.  I know it is a hard decision and everyone has a different option about chemo.  Go with whats in your heart.  I will be thinking of you and sending you good vibes.  I am leaving for vacation and will not be by a computer until Sunday.  Know you are in my prayers.  Good luck and keep us posted.

BeverlyMillers

I remember my aunt talking about her tumor. Actually I do have 2 aunts who have breast cancer but one died last 2 years. So my other aunt talked about chemo. She already had her chemo and it makes her feel weaker. We do encourage her to have faith and we know she can make it. Our prayers to all womens who have breast cancer.

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windcolour

Navygirl,

 Here, my oncotye score even higher than you - 51.

I'm ER/PR + 90% very strongly positive. Her2 +1 - still negative

I really don't know why my score is so high.:-(

llswong

Hi windcolour,  the Oncotype gives a heavy weighting on the proliferation group of genes.  What is your Ki-67 score?

windcolour

IIswrong,

I don't have Ki-67 score? Do you know how I could get my Ki-67 information?

Actually, I feel so sad these days after I knew my oncotype score is 51. My Dr. has been practiced for more than 20 years, he told me he never saw such a high score. Sometimes, I'm thinking if I should countdown my days. Sorry,,, I know I'm much emotional these days.

llswong

windcolour,

 Pl, please don't be overcome by despair.  I am not a doctor but I do not believe this is the end of the world.  Regarding the Ki-67 score, it is part of the list of markers (others will include for example the ER and PR scores, grading, etc) that the pathologist produces based on your tumour.  You should ask your doctor.

llswong

Seabee

It isn't time yet to conclude that Tailor X has "changed the risk ranges" of the Oncotype DX test. The designers of the trial just included a wider range of scores in the trial to be sure they were covering all "intermediate" cases. Maybe it will change the boundaries Oncotype presently uses, and maybe it won't. Maybe it will help people make decisions, and maybe it won't. What it will do is increase the database on which the boundaries are set.

acoustica

Hi everyone, It's been such a help to stumble across this forum and read what you all have to say. My mom just had a lumpectomy for a tumor of about 1cm and got an oncotype recurrence score of 19, which has pretty much made the decision of whether or not to do the chemo even more difficult. Her's is grade 1 and ER+/PR+ and she just turned 50 this year.

This is such a hard decision because we couldn't get any real recommendations from professionals and we've been pretty much back and forth constantly.

 Also, for those who have been through the T/C chemo, how hard is it going to be? My sister and I are going to be off to college in a few weeks, and my dad and brother are pretty much gone the entire day due to work/school. Can my mom make it on her own, or does she need someone to be there? I want to try to come home on the weekends, but driving home one day and leaving for school the next is going to be tough. I don't know what to do. 

jblcsw10

Hi Acoustica - your mom & I have pretty similar stats - my tumors (2) were under 1cm, grade 1, er+/pr+...no lymph node involvment. My Oncotype was 24 - still in the middle of the "gray" area. It IS a really difficult decision to make and like your family, I have been back and forth. I am a little older than your mom, 56. I am in the process of seeing a new oncologist for a second opinion, but in the end for women like us we have to decide what is right for us. Listen to what everyone has to say, weigh the pros and cons, and then listen to our own inner voice - I am a strong believer in listening to your "gut"....

You are an awesome daughter to be so involved with your mom's treatment plan. I can imagine how hard this is for all of you but your mom is lucky to have you on her team.

shiramg

this is my first post and i'm very very torn about chemo.  my onco was 19, my tumor was tiny, but it was grade 3. i'm 26 years old.  i don't want to go through chemo if its not going to help me.  at the same time, i want to make sure that i've done everything i can as a prevention, so if G-d for bid i get cancer again, i can't blame myself.

 had anyone had this score? thanks in advance!

marlenet

I had the T & C chemo... It was doable.  I worked full-time.  I listened to my Dr.  Took the drugs they said too. I never got  sick, from the chemo.  I listened to my body- heck some days i went to bed at 6:00!     My score was 25 ( 16% recurrence)

My onco suggested chemo because of my age,,,, at the time 44 years old.  But did tell me if i decide not to go through it.... he was OK with it....

 Good luck with your decision...

Firni

 I also had TC chemo.  6 rounds.  The first 4 were pretty doable.  My hair fell out and food tasted like well, you know what.  The last 2 rounds were really hard for me with extreme muscle weakness and fatigue.  I was not working at the time so I was able to sleep alot.  I was 52 when I started chemo.  My oncotype score was 39, 27% chance of distance recurrence.  Chemo brought that down to 11% distant recurrence.  My Ki-67 was 40%.

Acoustica, How many rounds of chemo is your mom's Onc suggesting? 

kira1234

shiramg, I am going through TC right now. I had my first treatment 10 days ago. So far my SE's have been fairly mild. I had a migraine headache, but that was not caused by the SE's. My diagnois you can see below. That being said I am much older than you, with a similar Oncotype score. My Onchologis gave me the choice, and I have decided to fight this disease with all I have. My Dr. told me if I had been under 50 she would have recommended chemo. Good luck with your decision. By the way there is a forum for younger women I would suggest you look into.

Karen

somanywomen

About a year ago when first dx, I came across this wonderful website and did some research about the Oncotype DX before making my chemo decision..None of my Docs had even mentioned it and my Onco was surprised that I asked for it..He said that I was the first to ask for it, seems crazy since he is highly respected Onco in my area that this would not be in his included tests when we are first faced with so many decisions that we may or may not regret..My score was low gray area and would have only gave me an improvement of about 2-3% so I decided against chemo because I have always been so chemical sensitive, perfumes, cleaners, you name it makes me sick if I even smell them..I think that for those with the high scores chemo is a must!!..But for those of us in the gray, we really have to do some heavy consideration of the true benefit, I hope I chose correctly but with bc we just never know...I have tried to give myself a healthier body by changing my diet and getting rid of chemical influences in my daily life, I am hoping to make up that 2-3% benefit ..So far, I have lost about 15 lbs, have dropped 30 points off my cholesterol and raised my Vit D from 28 to 45....Good luck to all facing this gray area decision, make it and go with it no matter what you choose....

I also read on the Oncotypedx website this info on about the se's of chemo...Under the tab for "Managed Care Organizations", then on the left click "Unmet Need In Early Breast- Cancer"...I think anyone who is having to make this sometimes no-win decision of chemo should read this info, please visit the web-site so there is no reason to misinterpret... 

 "For each patient, this benefit must be weighed against the risk of adverse events. Chemotherapy-related adverse events occur in almost all patients and more than 1 in 10 women experience a serious or life-threatening event.⁴ Between 1 in 100 to 1 in 500 women actually die from side effects related to the administration of chemotherapy. Late adverse effects of chemotherapy also occur, including development of second primary cancers in more than 1 in 20 women and cognitive dysfunction, or so-called “chemo-fog.” Other adverse effects include ovarian failure, cardio-toxicity, nausea and hair loss. As Paik et al. concluded, “the likelihood of 10-year distant recurrence in patients treated with tamoxifen alone is about 15%, at least 85% of patients would be over-treated with chemotherapy if it were offered to everyone.”² 

1 in 2 women that receive adjuvant chemotherapy experience early and late adverse events without a clear sub-group defined with predicted benefit.⁵ 

Approximately 51% of chemotherapy patients visited the ER or were admitted to the hospital within the first 6 months of treatment compared to 23% of women not receiving chemotherapy. Chemotherapy-related adverse events occur in almost all chemotherapy patients and more than 1 in 10 women experience a serious or life-threatening event.⁴ 

Firni

Wow.

somanywomen

The info I gave in above post is right on the Oncotypedx website and is there for all to see and not meant to scare anyone, but all of this stuff that we have to do to fight bc is scary and shouldn't be taken lightly...I just think that for those of us in the gray group really need to weigh all the odds of benefit of chemo..Sometimes our doctors do not share this info with us and just make us choose without giving us some of the researched material findings that we really need to make such a decision....

Firni

somany.. you're right.  My onc never told me all that stuff.  Not that it would have made any difference.  I was not in a gray area.  I needed the chemo.  It probably would have scared the you know what out of me.  I wasn't thrilled as it was but I wasn't terrified. AND some oncs get kickbacks from the chemo they "sell".  So why tell women who have a choice all the scary stuff?  More women might opt out.  I'm not implying that all oncs are that way, but I'm sure there is a good number out there.

somanywomen

Firni, believe me, if my onco score had been higher, doing chemo would have been a no brainer, but with a 2-3% benefit, it was something that was tossed at me to make a decision with no real info from anyone. ..My docs just gave me the facts off the reports and offered no medical research of facts to me, just numbers...I was a BC mathematical equation to them and I believe a monetary factor (I agree with you about the chemo sell $$$$, why in the world is the mark-up on chemo and BS meds so excessive, what a money maker/taker!!!) they treat me different now when I see them than the nicer caring doc at the beginning...I still have a lot of soreness at lump side and down my arm, my BS seems insulted when I bring this up..He left about 8 surgical clips in my body and I believe I might be allergic to them and they are causing the slow heal and the arm nerve pain..He doesn't want to hear it!!..I can live with this pain, I just want to know that it won't get worse....Someday, I may regret no doing chemo, yet had I done chemo, someday, I may reget that also, sometimes these decisions thrown at us have nothing but a catch-22 answer...

gnut

I need to decide to get chemo or not soon since my oncotype score is low (8) but my tumor is multifocal and two positive nodes for .4mm.  I have 100% on er+ pr+ her2-.  My onc said I won't get benefit from chemo but other oncs told me to do it becasue I'm young (44 years old).  I try to make an appt with doctor from John Hopkins to make my final deciaion.  Anyone gone to JH and is it hard to make an appt? Also, do all need rads?  Who can skip it?

kira1234

gnut,

I have no idea what to tell you about chemo. This whole oncotype thing stumps me. You're stage IIa with 2 nodes, and a low score of 8. I'm grade 1 stage 1 with a ocotype 24 score. I'm not sure insurance will even cover the chost of chemo for you. I on the other hand have been told doing chemo is the protical for my score. I think radiation is standard for lumpectomy, but not always needed if you have a mastectomy.

Karen

gnut

hi hira1234,

Thank you so much for your comment.  I'm new and just join the group so I'm happy that I get comment.  I just made up my mind not to get Chemo because my Rads Onc told me getting Chemo will get about 5% of other types of cancer.  And my recurrence rate is about 6% so I really don't see the benefits of it.  And there is no guaranteed 0% recurrence even with Chemo. 

shiramg

i really did not want chemo, but it is highly recommended (by some of the greatest oncs in NY) bc of my age.  chemo will ower your recurrence rate.  its up to the patient whether or not that % is significant.  chemo will lower my rate from 13% ro 8%.  at first this did not seem like much to me, but the more i think about it, i want to do everything possible in my case to lower my risk.

gnut: what do you mean that chemo will get about 5% of other types of cancer?

gnut

My radiation oncologist told me that Chemo has risk of second cancer by 5% (like Leukemia).  I have paste the following from Washington Post when I search "Can Chemo cause cancer".

...NIOSH says in its alert, "the carcinogenicity of several [chemotherapy] drugs in animals was well established. Likewise, a number of researchers during this period linked the therapeutic use of [certain drugs] in humans to subsequent leukemia and other cancers. Many in health care began to question whether occupational exposure to these agents was hazardous." ....

Firni

I'm sure occupational exposure is hazardous.  Have you seen the protective wear the nurses wear when they mix our chemo?