Oncotype number and decision regarding chemotherapy

edwards750

Ms. Pharoah - My BS' nurse gave me my results over the phone too. She knew I was a basket case waiting for the results so God Bless her she called me and went over my score which was low like 11 and also explained the recurrence factor, etc. She started the conversation with good news....so I relaxed. It was the only time during this whole horrific process that I cried. A low score meant no chemo.

Diane

QCA

My MO called me with my results even though he was on a family trip to Disneyworld.  My score was 11, and prior to getting the result he was gung-ho for chemo, but stated it simply wouldn't have been worth it for me.  I was happy because my sister had had a severe reaction to the combo ACT, and I feared I'd be the same way.  I'd already planned to request that the triple combo not be given to me.

Kathy

Loral

My MO called me and gave me my score and we actually discussed the results for over a half hour, and I still decided not to do the chemo that he highly suggested. He said free will, and he continues to be my doctor and tests my blood every 3 months for changes caused by Tamoxifen.

Vikingqueen

Lorbgoo, I just saw that you had finished your chemo congrats! Hope your having a good day.Thanks all for insight.!

Lorbgoo

thanks vikingqueen!

coraleliz

My MO called me with my results. He told me it was a 4 but wanted to see me to discuss things further. After he hung up, my brain was questioning if I heard this right "did he say four"? "or fourteen"? "or forty"? Maybe just disbelief on my part.

cookiegal

gosh I wish these docs would fax or email the paperwork. You get to see which factors were low or high and the graphs put the score in context. But glad for everyone who is getting the information they need

Vikingqueen

hi all got my Onco DX score yesterday and it was a 32! so much for skating around Chemo. I know that I have my best chance of no reoccurance with full treatment. There goes my summer ( and we have such short ones at 10,000. feet!) Taxatere and Cytoxan here we go! 

wheres she gonna blow??

ktfelder

Viking - I'm guessing that's why they wouldn't give you the number over the phone. The good news is that you know you are doing everything you can to beat this thing - and that the chemo will make a difference! Good luck to you. We are all here for you!

MsPharoah

Vikingqueen,  thanks for letting us know...and most importantly now you have an important piece of information and a plan.  Chemo really sucks, but your treatments will kill your cancer.  I did 6 cycles of TC and in the rear view mirror, it seems like it was OK.  If you want to PM me, I'm glad to help.

Hugs....vikingqueen, pull out your sword and kick some cancer butt!

MsP

Lorbgoo

that's ok Viking. I did 4 rounds of t/c and it really wasn't as bad as I thought. I had little side effects.  I hope yours is the same. Good luck and I'm here if you need to talk. 

Hollis_Walker

My oncotype showed that I would not benefit from chemotherapy, so it was a clear-cut thing. However, one thing I have come to understand is that all the numbers and statistics that are thrown at us are averages. The oncotype is the closest thing to a tailored-to-you assessment, but it is not absolute. I would advise you to discuss it with your doc, go home, re-read and think about it, ask others questions, and then make a list of questions and ask your doctor to explain it again. This stuff is more complicated than it seems at first. I hope that your results are clear-cut, as mine were! Good luck.

Faith4Life

Hello. Interestingly enough I did not mind waiting for the oncotype score because I knew regardless of what it said I was going to do chemotherapy. I wanted to do everything possible to fight. I am 43 and my score came back very high 32. I had the port in place before I even got the score. I am on my second round of chemo and it is no walk in the park. But it is doable and the team is attentive. 

RainDew

Oncotype just came back - 14.

I think means I will probably not do the chemo (not even sure if they will offer it - nurse gave me results on the phone before I come in to meet MO to discuss). Nurse said I may be offered 'chemo-lite' due to young age.

Anyone know what that is? Or anyone have experience of choosing the chemo with a score of 14? (Highly hormone positive, grade 1, node negative cancer)?

I would be happy not to do it (esp if it would offer few benefits for my cancer) but also don't want to leave anything on the table...

Have found this thread super helpful. Would warmly welcome any further thoughts.

Rain

cookiegal

Raindew, I don't think they give it for stage 1 score of 14 unless there is some unusual circumstance.

Nan54

Hi raindew, I had a very similar diagnosis with a score of 13. I was 37 at diagnosis and got 3 different opinions from 3 very reputable treatment centers and all recommended against chemo. I asked all the infamous "what if it were your wife or daughter question?" They all answered the same way that chemo would be unlikely to be of much benefit. "Chemo-lite" refers to CMF usually which is an older chemo regimen, doesn't usually result in total hair loss, etc. As with all chemos, there are risks and the question for my doctors seemed to hinge on if the benefit outweighed the risks - and with a score of 13, they felt it would not. I must admit, though, that I second guess that decision all the time! I would recommend getting a couple of opinions if possible - it is always good to have multiple perspectives. Good luck to you!

Vikingqueen

Thanks KT, LORbgoob and Pharoah. I have been told doing the chemo is all about graduations, birthdays, weddings and grandchildren.

I will try to chant that mantra when I head into chemo injection.

Raindew a friend of mine had stage11 with no lymph node involvement Onco of 14. this was five years ago. Her MO would not tell her then but now says it was the right decision not to take chemo. You got this!

 

Sunshineinky

I had a score of 12 and my MO said the risk of chemo outweighed the benefit and it was off the table. My  ER and PR are both 100%.  So she did say to expect hormonal therapy of 5 years of tamoxifen and 5 years of an AI. 

Good luck and ask for a copy of your report with the graphs! 

RainDew

sunshineink, vikingqueen, nan54, cookiegal...

Thank you all for the quick responses!!! I will see onc at the end of the week, and this helps me hugely think about how to talk to him.

I guess like many of you I am torn between not wanting unnecessary tx, and hoping I still have 40 years ahead of me.

BC is a tough ride - I looked at my poor husband today and realized it's hitting him even harder than me. We will both need therapy when this is all done...

Again, ladies, cannot thank you enough for sharing your experiences. I don't know a soul in this position and it helps me so much to hear how you all have been thinking about your decisions.

Peace

Rain

MsPharoah

Raindew, congratulations on a low score.  My advice (for what it is worth).....Have your oncologist go over the test results/graphs with you so that you understand them fully.  If you are young with a low score and are torn...get a second opinion.  It helps to have another point of view for something as important as your life.  And lastly (and people please.....don't beat me up on this)  I would never go for "chemo lite".  CMF is an older protocol and while it supposedly allows you to keep most or all of your hair, so what???  The word lite would turn me off.  I don't want to put anything in my body that goes easy on the cancer....give me the heavy duty, kick a$$ chemo, please.

MsP

SpecialK

MsP - not beating you up - lol!  Just wanted to point out that there is some trial evidence that CMF may work better for triple negative BC so CMF may be seeing a resurgence in use by some oncs for that subset of patients - info is linked below.  Chemotherapeutic agents work in different ways - anthacyclines like Adriamycin are antineoplastic, but taxanes like Taxol and Taxotere are antimicrotubule drugs. Both drugs are 3rd gen regimens used for breast cancer, and frequently prescribed. There are many reasons for prescribing different drugs - my onc does not prescribe AC-TH for Her2+ patients because of the cardiotoxicity of two of those drugs, he always uses TCH.  I know he uses AC-T for non Her2+ patients, so he is not averse to the regimen, just judicious about how he prescribes it.  Other oncs may use AC-TH for all of their Her2+ patients.  Some oncs might prescribe CMF to a young patient with a low Oncotype, if the patient pushed for chemo, because it may be an effective regimen for them but have fewer potential lifelong, irreversible, side effects.  I don't think whether you lose your hair or not factors into the decision. If an onc has faith in using Oncotype scores for systemic therapy decisions, prescribing "kick-ass" chemo for a low score would be considered overtreatment.

http://jco.ascopubs.org/content/early/2010/05/10/JCO.2009.25.9549

edwards750

Loral - I see you are Stage 1, Grade 1. Given that I am surprised your score is so high. Did your Dr say why? I am Stage II, Grade 1 and until I took the Oncotype test chemo was on the table. Lets get real here no one wants to do if but we all obviously don't want a recurrence either. Once is def more than enough thank you. It's your call and your life. If my dr told me I need chemo I would have done it because for me I'm too afraid not to but that's me. 

Diane 

voraciousreader

Rain... If you are premenopausal, you might wish to speak to your physician regarding ovarian suppression.  Many of us were stage 1 grade 1 and premenopausal when diagnosed.  Annicemd started a link devoted to us.  You might like to read the thread.  You might ask your doctor about the SOFT and TEXT trials.  Those trials speak to our situations..

I wish you well!

MsPharoah

Special K, understand completely.  The word "lite" turns me off and had my onc recommended CMF, I would have challenged her to explain why I should have what others call chemo-lite.   And if my onc didn't think I needed chemo, I wouldn't want her to give me the lite version just because I am fearful of going without chemo...but instead help me understand why I don't need chemo.

Just my opinion.

MsP

mmtagirl

I was given the choice of CMF which would have lasted about 6 months or TC for four rounds and completed in 3 months.  Never was the phrase chemo-lite used and I had not heard that phrase until recently on the boards.  He explained that it was an older but highly effective treatment for my type of BC.  I went for TC so I could get it all over with faster and get on with my life.  As it stands. I couldn't tolerate the Taxotere went to AC, have my final round on Tuesday followed by weekly taxol 12x. So,in the end, the year is shot, either way.   We can only look forward, my friends.  Any decision is the right decision and we adjust as we live.  

Hugs

Loral

Edwards750...I notice that a lot of ER+ and PR- have high oncotype scores...Maybe the PR is the determining factor.

As far as radiation and chemo go, my BS said she got it all and I'm believing in her. I'll deal with the re-occurrence or mets when and if it happens. I'm not afraid.

Sunshineinky

VR I am going to talk to my MO about those trials.  I feel strongly that I should have OS and I'm just not sure I'm ready for a oopherectomy. 

voraciousreader

sun... I'd be pretty surprised if your doctor doesn't mention it first.  Looking back, my oncologist explained in detail to me all of the literature and how it related to my situation.  That said, it never ceases to amaze me how others were less fortunate when they were initially diagnosed and weren't given the privilege of so much info to make a truly well informed decision.  I wish you well with your appointment.

RainDew

ok so met with onc today.

We did discuss ovarian suppression - his view was wait till full SOFT/TEXT results report in December to understand OS+tamox vs tamox only.

On chemo, suggestion is TCx4. If I said absolutely not, I don't want to do it, he would have been totally fine with that. But adjuvant online suggests maybe as high as 4% recurrence reduction...so I am not sure I want to leave that on the table either. 

I asked what he'd do if it was his sister, and we decided to send off for Mammaprint. One more test (god, I am tired of waiting...). If that one comes back low, I will just do tamox and wait till Dec on ovarian suppression. If it comes back high, I will do the TCx4, even if it does scare the crap out of me.

So back to waiting game. I REALLY hate breast cancer. God I want my life back...finding it hard to keep my chin up today...

Rain

Grace3Boys

I hate the waiting too! Good luck Rain Dew, I hope you get a low mamma print score and can enjoy your summer!!