Low Oncotype but grade3, chemo or no chemo

Shizuka

Hello,I am new to this web site. I am a Japanese,age 45.

My tumor is 1.1cm/ ER+/PR+/HER2-/Grade3/node neg.

 My oncotype score was 12. It was in the low range. My doctor showed me the NCCN Guidelines and told me that I did not need to do chemo following it but it was up to me whether I do chemo or do not.

I know it is good that I am in the low range and chemo reduce the reccurre rate by only 1-2% according to the chart of Oncotype DX brochure.But I haven't decided to do no chemo because of Grade3 that grows fast.

I have been confusing since I orderd Oncotype DX. My doctor says "You should imagine how you would feel without chemo. If you would regret and be always worried about that,You should have chemo. It's the most important thing that you satisfy yourself and are able to sleep in peace." I understand what he said but I am still worried over which is right decision for me.

Oncotype Dx isn't popular in Japan. In fact,my doctor has only four patients who had Oncotype DX test so far. That's why I am visiting this site.

Did anyone do chemo with low Oncotype score because of grade3 tumor or some reason?

Did anyone decide not do chemo with low Oncotype score and grade3 tumor?

Would you tell me your story?

Shizuka

ivrymom,Thank you for your advice. I was very glad when I received your reply because it was the first time that I talked my BC over with someone outside my family.

Yes,I will research the side effects and think it over again.

Doumo,arigatou.　

fortunate1

Shizuka, You have a wonderfully low Oncotype score. My oncologist told me that the highest benefit would be in taking the hormone blocking drugs. But you have to choose what will be most comfortable for you. So hard to do. Good luck.

Shizuka

fortunate1, I have been confused about how I should take the difference between  Oncotype score and the pathlogy assessment since I got my Oncotype score.But I am getting calmer little by little than yesterday.Thank you so much.

  

nowheregirl

             

Hi Shizuka,

I too am Japanese living in Osaka. Isn't it a bit weird that we are not talking in our own language?

I know how very uncommon the Oncotype DX test is here in our country because there are no facilities where it can be done and our doctors will have to send the samples to the U.S. if they want to do it. So I do think that your doctor is on the cutting -edge of new treatment/tests/research. I did 3 chemo's (2 before surgery and one after) but my tumor was a lot larger than yours (over 3.5cm) and I had one positive lymph node when I was dx'd.

It is a very personal decision and you have to do what you are comfortable with. But one thing that may ease your worries is that your tumor was hormone receptor positive, which means you can do hormone therapy. In other countries like the U.S. etc, the majority of pre-menopausal women with hormone receptor positive (ER/PR +) tumor opt for ovary removal to reduce the amount of estrogen because estrogen makes hormone-receptor-positive breast cancers grow. In Japan, doctors seem to prefer using meds to temporarily stop the ovaries from making estrogen. I have been on Lupron and Tamoxifen since surgery in 2006. For those of us with hormone receptor positive breast cancer, hormone therapy works just as well as chemo. In fact, some doctors believe that hormone therapy works better for this type of breast cancer. So even if you do decide to not do chemo, you will not be left untreated.

      

Good luck with your decision making. Feel free to PM me if you want to talk.

           

Hugs,

Fumi

AnnNYC

Shizuka and HopeFor30,

I think the Oncotype Dx score is based strictly on the tumor genetics (this isn't like the BRCA gene or inherited genes, it's the mutated "body" genes that constitute a cancer) -- so it's not like they add the Grade 3 into some equation to figure out the score -- it's more like most tumors with the genetic profile for high risk of recurrence will probably be Grade 3 -- but not every Grade 3 will have that risky genetic profile (high Oncotype score).  Hope that explanation made sense! 

Shizuka

hopefor30,I think it may be tough to get a second opinion on my pathology report in Japan. But my breast surgeon (they are generally oncologists as well in Japan) said that pathologists determined our grades based on their experience subjectively. So as you said, it might be possible that my grade is incorrect and there probably be a conflict bitween the factor of my strong ER,PR+ and that of grade3.

Thank you for helping me consider my treatment.

cvsucre

How high the ER, PR ?

Do you have a second opinion in your grade histology  and inmunohistoch values?

In a 45 y70 small tumor node negative high grade high RE,RP, neg HER2 with low Oncotype , clear margins,   hormonal therapy with out chemo will be my choice

We use Oncotype frequently in Venezuela. 

Shizuka

Fumi san, I live in Nagoya. Not every patient can do Oncotype DX in my hospital. In my case, because strongER+,PR+(on a scale of 1-8, they were 8 each),and grade3 are conflict features, my doctor recommended Oncotype DX for me. I think it was luckey that I did the test. Thank you for giving me your kind and helpful advice.

AnnNYC, your explain is easy to understand (though I often checked my dictionary because I am studying English) and helpful, thank you !

Cvsucre,both ER and PR are 8 on a scale of 1-8 on my pathology report and ER is 9.9, PR is 8.6 on Oncotype DX report. Thank you telling me your case.

   　

nowheregirl

          

Shizuka, I PM'd you my email address in case you want to talk in Japanese. Check your private message.

          

Hugs,

Fumi

thegoodfight

My tumor was a little larger and my grade was 3.  My oncotype was 17, so I also had the  choice of no chemo.  I chose the chemo, and fortunately it was very doable.  Yes, I had some side effects, but never spent one day in bed and continued to be very active.

I chose the chemo simply because I wanted more peace of mind.  I went with a lumpectomy so I wanted to know I was doing aggressive treatment since I did not do a mastectomy.  I followed my chemo with 35 radiation treatments and now I have been on arimidex for about 8 months and will continue for 5 years.

While you are actively in treatment there is a sense of calm because you feel you are doing something to fight the beast of breast cancer.  When you finish and you try to establish your life again you feel many fears because you are not in active treatment.  For me, I found peace in that I had chosen the chemo.  For me personally the worry would have been too great.

Sometimes I was sorry I had choices.  I wanted the doctors to tell me what to do.  That left so much up to me.  We all have to make our own decisions and go with what seems right for you.

Not sure if any of this helped, but I know I like gathering information and opinions from others and hopefully it helps me make a decision.

Good luck to you.

Caren

-angel-

Hi Shizuka,

You will definitely benefit most from the hormonal therapy and then if you choose to do so, the chemotherapy is an added benefit.  Taken individually, hormonal therapy is better for your profile.  I was also ER/PR+ 100%, grade 3, node neg with a 1.5 - 2.5 cm tumor depending on if asking the BS or Onc.  My BS is positive I was closer to 1.5cm.  Anyway, my oncotype was 26, high gray area.   It was extremely tough making a decision and in the end I opted out of doing chemo due to many personal physical hardships I already was dealing with.  If I had your oncotype score it would have been a no brainer, for me.  You just have to be comfortable with whatever you decide and then never look back.  I know the grade 3 makes it even that much harder.  The truth is, you can do chemo and still have it recur.  So if you opt out and it does recur, it's not necessarily because you didn't do chemo.  Again, hormonal therapy is best for our profiles, and chemotherapy is for added benefit.  You have to decide what the risk/benefit ratio to do that is for you and whether it is worth it.  Wishing you the best of luck!

Shizuka

Thegoodfight, I know how you were feeling when you chose the chemo. If I choose the chemo, I will do that for the same reason. It was good to hear that the chemo was very doable for you. I think thegoodfight is a good name.  It is like your attitude to the disease.　Was the chemo that you did TC?  I was told that TC was the best if I did the chemo.

Blah, I'm glad to see that you were also ER/PR+ 100%. As you said, I think the hormonal therapy is the best for us, too. The chemotherapy is the second and optional. Thank you for your advice. I will consider for some little time and make up my mind.

thegoodfight

Shizuka,

Yes, my chemo was four doses of TC three weeks apart.  Unfortunately after two doses, I had a skin peeling reaction on my hands and feet so they changed my chemo to taxol which I got weekly for six weeks, because that could be given in a weaker dose.  That is why you can have that weekly.

Caren

kathylev

 I spent two weeks praying for a low oncotype score so I could avoid chemo and when it came back with a score of 10, I felt relief for about five seconds and than began to worry that I'd regret not having chemo.  I decided to do 6 treatments of CMF.  I had the first treatment two weeks ago and will have the second this Friday.  I don't know what the correct answer is here, you just have to figure out what will make you feel the most secure. 

cookiegal

Hi ladies...just a heads up there are a whole bunch of oncotype studies being released this week, that may or may not help you decide.

If you do google news and put in oncotype dx, you can read the press releases.

Coltsneck

Hello Shizuka,

I had an oncotype score of 15; my tumor size was 1.5; I had grade 3, which my oncologist described as 'aggressive'.  He said I was on the border for recommending chemo.  I got a 2nd opinion and it was the same - I was on the border but she recommended chemo.  I had 4 sessions and missed only 2 days of work.  It wasn't fun of course but I was surprised that I handled it so well.  It is a personal decision, but my decision was based on the regret I would feel if the cancer came back and I knew I had not done everything I could do in the beginning.  I had a lumpectomy, 4 sessions of chemo, and 40 x-ray treatments.  I have been on Arimidex for 3 years and am 3 and 1/2 years since my diagnosis.  I'm happy with my decision, even though there is no guarantee.  I hope you feel comfortable with whatever decision you make.  Good luck.

cookiegal

Somebody correct me if I am wrong, but it seems like with low RS the survival rate was higher without the chemo. Of course your situation may not be the same.

Shizuka

Caren,Thank you for your reply.

Kathylev, Coltsneck, thank you for telling me about your treatment that you have decided. I think it is wonderful that you feel comfortable with your decision.

Cookiegal, I read the press release. I think this may mean what you say. But It is tough for me to read such a difficult article in English. I will try to read it refering my English-Japanese dictionary again. Thank you.

JenJo

I just got my onco score yesterday of 22.  I had 1.1 cm tumor, er+, pr+, grade II and neg nodes.  This is a reoccurence from 2001 where it was stage I, negative nodes, er+, pr+ .  I did back then a lumpectomy, chemo and radiation but opted out of tamoxifan.  8 years later it came back. If I could do it again I would have done the tamoxifan (that should of been a no brainer for me back then)  This time I did the double masectmy and will do tamoxifan, but am deciding against chemo since the onco test says it will drop my chances of getting cancer in the next 10 years from 14 percent down to 10 Percent and for me I feel the chemo affected my short term memory so the 4 percent is not worth it to me.  Best of luck

JunJun

Hi ladies,

I'm also new on this site and I'm a Japanese (excuse my English), age 41. I did mastectomy in the end of August and started Luprin and TAM.

Shizuka, my problem is the other side of the mirror.

Today I received my oncotype report and the RS was 23.

The ER score was 9.3 and the PR score was 7.9 -- not so high -- I'm disappointed because they were 100% and 80% at the pathology report.

Ummmm...

The RS score is intermediate.

There are both good and bad other aspects.

My aunt diagnosed at age 57 and she got recurrence in the same breast during her treatment. (This is why I belatedly wanted to try the Oncotype DX.)

My tumor was tiny (0.6 cm x 0.4 cm), and no vascular invasion, no fat invasion, node negative.

I'm 41 and I have two boys aged 9 and 4 -- I definitely hope to see that they will be taller than me.

I read the oncotype report, I couldn't understand a part -- why "% Decrease in Distant Recurrence at 10 Years" of low & intermediate risk groups are minus value??

My doctor rather pushes chemo.

I'm unsure to do or not to do chemo.

Anyway, if my score would low, I would avoid chemo.

Shizuka

Jenjo, Thank you for telling me your story.

JunJun, I am not sure but I think your ER,PR score are high. I thought the maximum number of ER on the report was around 12.5 as the muximum number of recurrence score of the chart on the report was 50 that was very rare.  I thought there was 12.5 just on the scale but it was very rare and very very high, so ER9.3 was high enough. (I have not made sure of that. If I am wrong, plese correct this.)

Oncotype DX is based just on the past trial. We must read the former trial result and decide instead of the result of the new trial Tailor X that is now going. Those thing have puzzled us.

 I think it is very helpful that we hear from different people when we decide our treatment. And we ultimately have to make our decision that we feel the most comfortable with as the women who gave me advice on this topic. Good luck to you.

Shizuka

Thank you so much, all who told me your story and gave me helpful and warm advice.

I have chosen not to do the chemo. I feel comfortable with my decision now. Both stories of the ones that did chemo and the ones that did not chemo are great help for me.  I couldn't have made my decision without you.

Thank you again for your help !

Shizuka

suz6

I am new to this as well. I understand your confusion. I was dx'd with cancer in both breasts, had a bilateral masectomy. In one breast, one of 4 nodes was micromestasized and the other breasts 2 nodes were negative. I am considering oncotyping as I am unsure whether to pursue chemo. Support people have told me also that whatever the decision is, be a peace with it - no regrets. If I find info I will post it. Interested to know your decision.

suz6

Sorry I didn't read enough. I am glad you are comfortable with your decision. Any suggestions on how I can make my decision to have or not have chemo?

limegreen

Hi there, I am so happy I found this string! 

Shizuka, I wish you all the best and hope you are doing well.  The decision you had to make is probably one of the most difficult of your life.

suz6, I am 90% ER+, 70% PR+ and HER2-, and am very happy I did the Oncatype DX test.  I would definately recommend it.  The more information you have regarding your cancer the better informed you will be to make the best treatment decisions for yourself.

My onca Recurrence Score is 20 and I had a bi-lat mast with recon 11 days ago, negative node.  I see my oncologist Feb 2 to discuss weather or not he will recommend chemo.  The thought of it scares me.  In spite of my anxiety, I am trying to research my risk/benefit, but fall into that gray area where the study shows only a small margin of benefit for people with my score who combine tamoxifin with chemo.  I will definately take the tamoxifin, but am not sure how much chemo will benefit me over the long term.

The NSABP B-20 study that was done involved only 651 patients so the margin of error (+/-) for 10 years out is not strongly conclusive.

  

suz6

limegreen, thank you for sharing your info. I am ER+ in both, PR+ in one and PR- in the other, both Her2-, grade 2 in one breast. The positive node was 1.3mm. I am so glad I am not the only one who is in the gray area. I will opt for the oncotyping and go from there. It is hard to find research on the benefits of Tamox plus Chemo. It is a hard decision.

limegreen

Hi suz6, the only completed Onca study so far is the NSABP B-20 study and if you google it, you will find conclusions.  There is currently one that just started but there are no conclusions at this time.

There are other studies my boyfriend and I are looking into.  We are in the process of reading through them and trying to figure out what they mean for me, but I will share what the studies are so you can look at them yourself.  Give me a few hours and I will get back with you on what specifically they are called. 

limegreen

Hi suz6, I'm back.  Because I am node negative, all the info I have is for that diagnosis - But - the websites I found the info on would be websites you would want to check out and do searches within to check for node positive tamoxifin/chemo treatment findings and stats.  There is alot of info at the Journal of Clinical Oncology - http://jco.ascopubs.org/   You could also check out The New England Journal of Medicine at - http://content.nejm.org/  and also check out Journal of the National Cancer Institute - http://jnci.oxfordjournals.org/  All of these websites have search bars so that you can find information regarding specific studies/info.

I know it is alot of information sift through, but I think it's totally worth your time.  For the heck of it I went onto the Journal of Clinical Oncology website and did a search for 'benefit of chemotherapy and tamoxifin in women with node-positive breast cancer' and there was alot.  Let me know how you make out. 

JunJun

Hi,

Now I'm on TAM, Lupron and Zometa. I opted to avoid chemo and to add Zometa infusion. It was very difficult choice and I'm still not sure that my choice was correct or not. Anyway, I start my new life.

This web site is so wonderful and helpful. Thank you so much. Good luck to all.

suz6

Limegreen, Thank you so much for the information. Wow! I am off to do more research. I can't thank you enough for your help. Have you made a decision yet?