Anyone with an intermediate oncotype?

Lovelillian

I have an oncotype score of 24 and was getting a hard sell for chemotherapy from my oncologist. The clinical trial clearly stated that a 24 falls in the middle of the middle and that this group showed "no significant benefit of chemotherapy but it can't be ruled out." Having worked for a clinical trial org, I did a ton of research on both oncotype dx and TAILORx before making my decision.



Anyway, I wasn't buying what she was selling and chose not to do chemo. Anyone else out there that had to make this difficult decision? I feel like I am damned if I do and damned if I don't!

kira1234

Lovelillion, I am also a 24. I began chemo, but because of my reaction to it was told my chances of dying from the chemo were higher than my chances of getting BC again. The Onc. made the decision for me he said no more for me. I am taking Femara and will for the 5 years. I have also made changes in my life style which so far are diet, exercise, and taking suppliment recommended on the alternative board.

If it should come back I'm sure my Onc. will put me on some chemo regime, but will be watching me closely the entire time.

ScienceGirl

Lovelillian - I had a oncotype score of 25.  But I had some other issues, multifocal disease (6 places of cancer on the right) and bilateral tumors (one on left was oncotype 13).  Nodes were negative, but age was younger -44.  I saw 3 oncologists, 2 said they would recommend TCx4 mostly because of my young age, the other said (at MSK) do AC+  DD.  I was presented at the tumor board at my hospital, the consensus was do TCx4 but there were still a couple of oncs who thought no chemo. 

So i reluctantly agreed to the TCx4, even though my greatest benefit will come from Tamoxifen.  I've had one round, and it has been harder then expected.  My WBC went to zero, and I got a mild fever, luckily this was treated with antibiotics at home, but if my fever went up 0.2 degrees more I would be in the hospital with IV antibiotics.  From what I read there is 10% mortalitly in people hospitalized for neutropenic fever.  Now I have neuropathy in my hands, just from one treatment, I'm scared it might become permanent.  All this for a treatment that might not even benefit me?   We are all damned if we do and damned if we don't.  Make your decision and own it, then never question yourself.  recurrence or not

I'm learning more and more that all we can do is what is best for ourselves at any particular time.

Lovelillian

Thank you both for your replies. I am with you ScienceGir that "all we can do is what is best for ourselves at any particular time."

 Best wishes to you both!

MissTW

Got my Oncotype score last week, 22 low intermediate.

My Onc said that since I had NO vascular involvment he would not recommend chemo. In my case it would do more harm than good.

Since I am er+/pr+ and HER negative he recommended 5 years of Tamoxifen. Diagnosed with ILC, small tumor, o nodes.

Good luck to you!

fortunate1

I had a 20.5 score. My Onc said the benefit from chemo wasn't enough to recommend it. His convincing explanation.... if 100 women in your exact situation took chemo, only three would benefit. Femara is where the benefit lies for me. These are scary decisions to make. Especially when your Onc isn't in agreement. You must be one strong woman! 

momand2kids

had a 27-which was considered intermediate in 2008....so I went with it--- no nodes, no vascular invasion--pretty straightforward so the oncotype was  a bit of a surprise ....but I did it--- I have two kids, wanted to do it all while I could handle it... absolutely no regrets. Had radiation (had a lumpectomy) and am on lupron and femara..... all seems to be going well so far!!! 

Sharon789

I had an oncotype of 24 and chose to have chemo.  TC X 4 and I have finished 2 rounds.  I was able to get neulasta and have avoided problems with low WBC and have had no joint pain.

My thought was I don't want to do this later on, if it recurrs.  I would hate it if it recurs and I didn't do it.

I know it is a personal decision. Good luck.

raincitygirl

I did both.  First I got 4 opinions which didn't really help - one was you  must do chemo, one was you absolutely should not do chemo, and the other two were 50/50 and said it was really up to me. 

 So I chose CMF, I did half the treatments, kept reading and asking questions and met with my future (now current) rad onc.  He helped me look at it very clearly and added a new piece or two to my decision making process, for example my ki-67 was very low.  Anyway, after much internal drama, I decided that the benefit was less than the risk.  I stopped and am now doing rads and will then move to the dreadd pills that will help me be more manly

It is a wrenching decision, I completley sympathize with those who have to make it.  While my score was a 23, my recurrence was 14% - that, combined with rads, surgery, and pills makes my risk exactly the same as every woman on the street.  I feel mostly confident about my decision.

kira1234

raincitygirl, I think the ki-67 score has something to do with chemo or not. May I ask what your score was?

raincitygirl

My score was given to me as between 5% and less than 10%.  This correlated with the mitotic rate of 1 that I had from the pathology report. My rad onc got my ki-67 score by calling the Oncotype folks - it is a portion of the test that they do but don't report as I understand it. With that and being told that I had a lumenal A tumor, negative nodes, no invasion, I made my decision.  I can only hope it is the right one but I felt the same way about doing chemo - that I could only hope it was a good choice and didn't do more damage than good.

kira1234

my ki-67 score was 13 and something called the p53 was 4. As I said I have no idea what they mean.

voraciousreader

  

 Cookiegal found this interesting abstract.  I haven't been able to find anything more.  The small study involving 32 tumors and were assessed for their Ki-67 score and what Oncotype DX recurrence score was associated with each.   It appears, that the higher the ki-67 score, the greater the Oncotype DX recurrence score.  HOWEVER, there were several tumors that while having LOW Oncotype DX scores, had higher Ki-67 scores, leading the researcher to the hypothesis that PERHAPS it is THOSE women who account for the recurrences in the low risk Oncotype DX category. Interesting theory.

  

Complementary Value of the Ki-67 Proliferation Index to the Oncotype DX Recurrence ScoreKatja Gwin, MD, PhDDepartment of Pathology, Yale University School of Medicine, New Haven, Connecticut, katja.gwin@uchospitals.eduMarguerite Pinto, MDDepartment of Pathology, Yale University School of Medicine, New Haven, ConnecticutFattaneh A Tavassoli, MDDepartment of Pathology, Yale University School of Medicine, New Haven, ConnecticutAbstractOncotype DX is a 21-gene assay that quantifies the recurrence risk in estrogen receptor-positive breast cancer, which is expressed                     as the recurrence score (RS). Studies have shown that patients with a high-risk RS will most likely benefit from adjuvant                     chemotherapy, but there is no proven advantage for patients with a low-risk RS who still face an average recurrence risk of                     7%. In this study, the relationship between the RS and the cell cycle-related antigen Ki-67 was assessed in 32 breast carcinomas                     and evaluated for a potential association. Comparison of the RS with tumor type, grade, and the Ki-67 proliferation index                     (PI) revealed an overall concordance. However, some tumors with a low RS revealed a surprisingly high Ki-67 PI. These cases                     may correspond to the 7% of low-risk RS carcinomas that recur. Therefore, the authors propose a combined evaluation of the                     RS and Ki-67 PI to identify tumors with high recurrence potential from the low-risk and intermediate-risk RS groups.                 

shelbytroy12

I had a score of 25 and chose to do chemo. Got 4 opinions - 2 were for it, 2 against.  A most heartwrenching decision.   All of these smart docs and not one could tell me if it would help me or not.  Making that decision was the hardest part of this cancer so far.  I mean how are we supposed to sift through all this medical information in a few weeks?  These people have had years of training.  An intermediate score is awful in some ways because there is no hard data yet.  On the other hand, I would rather have an intermediate score than a high score.

 I ended up deciding that if I did not do, I would always wonder if I should have.  So I chose chemo. Since it is possible it could help, I wanted to do everthing I can. Even though chemo sucks, at some point it will be a memory and I will feel I controlled as much as I could.  I am halfway through 4 treatments of TC.  With the Neulasta shot, the 2nd round was SO much better.  I can do this. I have not regretted my decision and am happy with the physician I chose. I definitely did not feel like he was jamming it down my throat.  It was totally up to me.  But if I was going to go for it, I had to choose a physician who believed in it so that's why I chose him.  As he says, this will be in my "rear-view mirror" very soon. 

jlee2511

Kira, Hello... my mom also has an oncotype score of 24. The grade of her tumor was 2. Her miotic rate was 1. We cant find anywhere on her path reoprt the KI-67. Would you know where to look? What was your miotic rate? Maybe that will help us guesstimate her KI-67. Thank you!!!!-Jenny

raincitygirl

Kira - I am guessing you don't have a copy of the oncotype report and I was told that though they test for it, they don't always include it.  My onc had to call them to get it.  In my case, it did correlate with my mitotic rate of 1.  I was also stage 2.

Shelbytroy - you are so right, I just wanted them to tell me what to do and be sure about it!

kira1234

yes I have a copy of the report it is 24 with a reacurrance of 16 with using an estrogen reducing drug. My grade is a 1. My miotic rate is 1.  I have the ki-67 in the report. My ki-67 is 13. I have no idea how to figure it  jlee. Mine was on the Oncotype test, but not on the original path report from the Dr.

As far as telling us gray area people what to do, my first Dr. was all for having the chemo done, but my second Onc. said with my personal situation he would never have said yes. It needs to be looked at by our health, age ect.

whitbyjet

My oncotype score was/is 25. My oncologist at first suggested chemo because of my age (41 at diagnosis) but he told me all about being in the grey area and that there was a chance it could do more harm than good. It was a most difficult decision , but I opted not to do chemo. Am taking Tamoxifen for five years. Good luck.

encoremom

Back in 2008 I also had an oncotype score of 24.  I was 52, postmenopausal and had a bilat masectomy due to family history.  I had two opinions -- one was to go into the TailorX trial which to me said it was a toss up.  The second opinion from the oncologist practice I'm with now at Hopkins said that they don't recommend chemo unless it is clearly indicated and considering all my other factors (size of tumor, no lymph nodes, my age, etc) the risks with chemo were the same as the benefits.  So, the recommendation was no chemo for me.  They said I could have it if I really wanted it, but I decided to trust them and go with no chemo.   It is a tough decision and one that each person has to make on their own and feel comfortable with.   Best wishes.

raincitygirl

I am not surprised it is not on the original path report as it is a very specific test. It is so hard when it is not clear what to do, I know and still think about.

encoremom - I know I would have not even considered it if I had been less than 1cm.

whitbyjet - I am so glad I am not the only one who made this decision.

kira - i didn't realize there is such a jump.  If my 23 is a 14% recurrance, it surprises me that a 24 is 16.  Your ki-67 is pretty low

skhartley

My score is a 16, but my doctors still want me to do chemo.  I'm going for a second opinion, but geez, this is so stressful.  I wonder what there magic number is that they don't push chemo.  I am 38 and in good health (besides the cancer!!), so I feel like that is driving the train more than anything else.  My Ki67 was 10%.  I had thought that any middle range score I would do chemo.  I am afraid of doing chemo and I am afraid of not doing chemo.  I hope you find some peace with your decision.  Keep us posted!

Anonymous

Skhartley - My score was 23, I was 44 and I did CMF chemo.  I think you will find that the younger you are and pre menopausal - the oncologists are more likely to recommend chemo...they were a bit antsy with my age of 44 so I can imagine your age of 38 has them doing the same.

I also had two opinions, and think a second opinion is great!  At this point we all just have to make the decision that works for us.  

In my case,  chemo was easy to tolerate and I am happy with my decision.  Good luck to all - I am thankful for the oncotype (so many of us can skip chemo) and thankful for BCO - it is so great to be able to have these discussions!

jw523

SKhartley - My Onco was also 16 and I did not do chemo.  I got a second opinion which also sided on the no chemo side.  I was glad not to do it but I think there is always a voice inside that questions. I'm 46.  My surgeon was the only one to say that 16 was on the line in a way that made me question not doing chemo. But in the end I am happy with my decision

I was glad to hear other people here with a higher score who also decided not to do chemo. Ultimately I think you have to choose for yourself what you feel comfortable with.

prcdbb81098

I was diagnosed with ILC in Nov. 2010.  Two tumors 0.9 and 2.2 cm confined to outer quadrant of breast.  Margins and lymph nodes negative.  ER and PR + HER2 neg.  Mastectomy 12/21.  Oncotype scores of 16 and 21.  Oncologist gave me two choices.  Four rounds of AC and tamoxifen or just tomoxifen.  I am getting a second opinion because since I fall within the immediate category for the onco test there isn't any evidence that chemo will benefit me.  I am hoping that by getting the second opinion I will be able to make a more informed decision.  I am leaning towards the tamoxifen alone since my recurrence rate is 13% verses 9% with AC and tamoxifen.  Not convinced that the benefits outweigh the risks.  No matter what decision I make I know I will wonder if it was the right one

mdg

My oncotype was 17 and I was told no chemo at first opinion.  Second opinion said chemo TCx4.  My concern is my path report angiolymphatic invasion meaning there was potential for my cancer to travel by blood or lymph routes though my SNB showed clear nodes.  I am doing chemo and going with the second opinion.  I am 45 and in excellent shape and health.  I have a 4 year old son and I want to do everything I can now so there is less chance of this coming back.  I realize there are no guarantees.  My second opinion onc also supports me using the cold caps to keep my hair.  This is a good compromise for me...chemo with the possibility of keeping my long hair and keeping my cancer to myself.  It is a personal decision. You will eventually know what you need to do.  Good luck!  I know how hard this is. 

dcgirl

I had an Oncotype of 24.  Before the test I had opinions ranging from no chemo to dose dense chemo, with most falling in the middle (4 x TC or 4 x AC).  Once I got the test results though I decided I'd always worry if I didn't do the chemo, so I did it - TC x 4.  I was lucky and didn't have terrible side effects.  It's a grey area though - factors leaning towards chemo were my age (40 at Dx) and the fact I had 4 tumors.  Even though they were all 1 cm or less and not supposed to be added together for staging, it was just a worrying factor.  Since this is such an unclear situation, I think the best thing is just to make a decision you know you won't second guess down the track.  For some that will be chemo, for others no chemo - just be at peace with your choice!

Pessa

I had an Onco score of 24.  The invasive part of my tumor was .9 cm but I also had 8 cm of DCIS , which was not seen on mammo/MRI/US.  I had a lumpectomy initially, but with the 8 cm DCIS discovered on path, I decided to be aggressive, since there was no way to follow this with scans.I had a bilat mastectomy (2 separate surgeries, no recon)and chemo (ACx4) and am on Arimidex.  Nodes were neg(3 removed).  I feel good that I was as aggressive as possible so will have no regrets.

sgreenarch

This was a tough one for me. Oncotype 17. I felt like i had to suddenly become an oncologist myself! How was i supposed to make treatmt decisions? I actually went to 3 oncologists who all were adamantly against chemo for me. One even said it would be a crime to give a person in my situation chemo, but I had a very hard time thinking that maybe I wasn't doing everything I could. I was 49 at dx, premenopausal, had a unilateral mx, no rads either. I am taking Zometa 2 times a year, though it's benefit in preventing recerrance is controversial. It's not so risky, so my onc thinks I should continue with it. I think the fact that I had lobular may have played a small part in the decision as well. Don't know. Here in Israel, where unfortunately breast cancer is common, they feel that US docs may tend to over prescribe chemo. More than Israeli or European docs. I made peace with my decision and am trying to feel like I'm aiding my treatment by eating right, exercising and relaxing more. And praying! Lots of love and try not to second guess yourself once you make this decision.

JunJun

My score was 23. I'm Japanese.
sgreenarch, my doc said "If Europian docs see your pathology, they will never, never recommend chemo. But if US docs, they will recommend chemo because of your age (41)".
I asked her "How will Japanese docs deal with?"  she said "I think we can take good sampling from both" -- but she couldn't give a concrete answer.
It was so tough time for me.
I opted not to do chemo. I will continue Lupron and Tamoxifen (it damaged me slight fatty liver!) for 5 years. I got Zometa, too (I think there are some evidence that Zometa will work under ovarian suppression).
A year and a half passed from my diagnosis. I'm spending ordinary life with my children.
Good luck for everyone!

Annabella58

Hi all, I had a score of 17, due to prior rads in the same breast, no radiation.  I had invasive DC, node negative, HER2N-, was 51, pre menopausal.

Due to these factors, they did CMF chemo, and I have had no regrets.  Not fun, but completely do able, and yes, I kept my hair, tho it thinned and continues to, due to arimidex.

I opted also for oopharectomy to lessen my odds as mine was heavily ER+.  I wonder if I should have had femara, but never suggested.  My onc was pushing zometa at me, but now it has been shown not to have any benefit other than bones.  My primary GP does not want me on a bone drug at all; says the risks far outweigh the benefits and that the bone they make is poor quality, leading to worse breaks down the road.

So, I strengthen the bones with calcium, D, magnesium and exercise.  Take arimidex and try not to worry too much.  I am going to go for a prophlyactic mastectomy on the remaining breast, as I am tired of worrying about it and the scans.

It is an intensely personal decision; however my onc was not even hesitant re: the chemo.  He is renowned cancer dr., so I felt comfortable about the decision and I wanted to throw everything at it.

Good luck to all

ch08567

Hi there.  I have an Onco score of 21, which is low intermediate, but the onc is recommending chemo due to the fact that I have lymphvascular invasion. She has also told me that chemo will improve my recurrence probability by 3-5%.  Pretty negligible in my eyes, especially since chemo only works on cells that are actively dividing at the time of infusion.  I am Stage 2, Grade 1, so it is not an aggressive cancer and maybe they are not actively doing anything. The problem is that it has also been three months since my lumpectomy and time is fleeting - who knows if any of these cells in the lymph vessels have travelled. My onc is recommending TCx4 - I really don't want to have chemo - feel risks out weigh benefits for me, but am frightened if I don't. Sooo confused