Oncotype results

Julia - Caren has great advice!  I just wanted to add THANK GOODNESS for the oncotype - because, I agree - who would think that a grade 1 er/pr+, her2- tumor would have a score of 33?!

That is why this test is so great - because it is hard to predict.  My score was 23 - gray area and as I was 44, did do chemo (although it was CMF which is sometimes referred to as chemo-lite).

You can do this - and as Caren said so well - be joyous for the good parts.  Yes, it sucks, and we have all been where you are (between furious and sorry for ourselves).  Where you are "at" now is the hardest point.  

Julia,

I can relate to the shock.  My news of 29 came on Christmas Eve 2008.  I, too, had hoped and prayed for a low score and only rads/AI.   I was 51 at the time, about a year into menopause.  Since then, I survived 6 rounds of taxotere and cytoxan (TC), rads and a year on arimidex so far.  Chemo wasn't a walk in the park, but it wasn't as bad as I feared.   I worked fulltime through treatment, except for right after surgery.   I had a few crummy days after chemo then recovered pretty well.  Everyone has different side effects -- all have treatable options.  You will get through this!!!!  There is so much good information and helpful people here --  I'm sorry you had to find us, but we are all here for you!    

It's hard to see the "good parts" -- you found this really early.  It can be treated -- no, blasted -- with chemo.....as my onc said -- you will have 8 months of inconvenience to live forty more years!!   Breast cancer in your early stage is curable!   

The other "good parts" you won't see for a while, and can't even imagine now -- but you really learn what is ( and isn't) important..it is life chaging in many good ways.

((((((HUGS)))))))) to you.

Hi Beanius,

I was diagnosed with Stage IIa grade II IDC.  I had three tumors, but no node involvement with 13 lymph nodes removed (3 were sentinal nodes).  The largest tumor was 3.9 cm.  My oncotype score was a 16, in the low risk category.  My oncologist recommended chemo due to my age and the fact that I wanted to treat this aggressively.  I am 49 years old.  I am also ER+/PR+ and Her 2 -.  I had a bilateral mastecomy.  All three tumors were in my right breast so my left mastectomy was prophylactic.  I did two rounds of Taxotere and Cytoxan and developed tachycardia during round two.  I was hospitalized and then for round three was switched to Adriamycin/Cytoxan.  After round three I continued to have abnormal heart rythyms so chemo was discontinued and I was sent to a cardiologist.  I was diagnosed with an electrical problem with my heart.  I have begun radiation and have completed 1/3 of the 36 treatments.  I developed lymphedema in my chest and now wear a compression sleeve to keep the swelling from my arm.  Being aggressive for me has led to numerous side effects, but I'd rather know that I did everything possible to beat this disease.  I'll be having a hysterectomy/oophorectomy sometime in July following my radiation treatments.

I can't tell you what to do, but I know that for me being aggressive was the right choice despite the side effects.  Losing my hair was not as traumatic and I thought it would be.  I got a fabulous wig prior to losing it and my mother, daughter and coworkers didn't even know I was wearing a wig.  They thought it was my own hair. 

I will keep you in my prayers as I know the decision making is grueling. 

.

You might ask your onc how much extra benefit you will receive by doing the chemo. I had an oncotype dx score of 31.  In my particular case doing chemo would only have given me a 3% better outcome than not doing chemo so I decided the benefits of chemo did not outweigh the side effects.  My onco said he was comfortable with my decision. 

My oncotype score is 22, still in the medium risk range. I am not doing chemo, mainly because I have such a bad reaction to any medication. And like you, the decrease in chance of recurrence is only 3 points. I am in the process of changing doctors. Mine was in no hurry to get the results back to me and is unavailable to schedule an appointment to get things going. I know this is not my main thing to worry about, the cancer and treatment are, but I am so frustrated by his lack of communication and availability.

I had small cancerous tumors in each breast so I had bilateral mastectomies in January.  During the surgery and SNB, my surgeon was very surprised that I had a postive node, given the size of my tumors.   That 1 shocking node changed the "plan".   We all thought I would have my surgery and then Arimidex for 5 years.

I had a Oncotype test even though I had only one positive node because they are now doing the test for 1-3 positive nodes.  I guess I am a node positive guinea pig.  My score came low-14.  Because I had a postive node and my oncologist conferred with an experienced out of state onologist who recommended chemotherapy, I decided to do chemotherapy.   It was a tough decision.  I did 4 rounds of Taxotere and Cytoxan.  I wanted to make sure I gave it my all because of my positive node.

The TC treatments were not fun but as we chemo veterans say, they are doable.  I had a port, it was great.  I am glad that I did the treatments.  After my post treatment tests, my oncologist reported that I did not have any permanent side effects or organ damage.

I just started to take Arimidex last week because my tumors were hormone positive.   Each woman's cancer is so unique.   Do your research on this site and then do what you want to do to fight your cancer in your way. 

PS   Beanius, I have tried to PM you to see how you are doing but I could not figure out how to PM yet.  I am glad to catch up with you here.

Leah

Thanks for your reply. I am waiting to hear back from a different onc in the same group. I have a new mantra, "sorry you have cancer, and now you get to wait!"  I just want to start the treatment so I can be through before school starts in mid August. I work in an elementary school. I know my situation is not dire, it's not appendicitis, but I don't think regarding my schedule is too much to ask. My surgery was 6 weeks ago!

Good luck. I know that's confusing reports.  None of this is easy!

julia2 - So sorry to hear you sound frustrated. Me too! When the doc told me I had a carcinoma, my first thot was they must have mixed up lab samples! Then a totally different surgeon & lab found it in my nodes too, so I started coming outta denial a bit. I've never been a smoker but I sure wantta drink a lot more lately. I've been trying to stay active, walking, cleaning house, helping DH with his work, running errands, anything to keep a "normal" life going. Then yest my bs says I'm too active and it's keeping this surgery from healing fast enuf. My last sugery results were good , thank God! So I was thinking it's time to play black jack, but a lottery ticket sounds like a good idea too! Hang in there, I'm a reluctant chemo candidate too.

Julia

reagarding the oncotype--- I was dx'd in October 2008--- the idea was lumpectomy, radiation and some sort of hormonal therapy--I was pre-menopausal, but I could not take tamoxifen.  The surgeon said, upon seeing my tests, etc--"this is very straightforward"  It was early-- but I asked for the oncotype--- and my onc called me to say that it was in the "gray area" and that we would have to make a decision (which means I had to make a decision).

I completely resonate with your thought that having chemo puts this out in the public domain--I thought the same way.  But, as it turned out, that is not how it went.  I had a 27 on the oncotype- and chemo would drive down my risk from something like 14% to 7%--so it was  a pretty easy decision for me.... I had 4 rounds of A/C , one every other week.

I got two great wigs (human hair) after my first treatment. I worked full time through almost all of it-I have young children-- I realize everyone reacts differently, but I want you to know that it is doable.

I decided not to say too much at work (I work with hundreds of people) and guess what, almost no one figured it out--although my hair looked so much better!!!  People are pretty self-absorbed--- and no one really cared about my hair in the end.  The wig did its work--- and in pictures I can see that it really did look great-just like my own hair.  So don't assume that you have to tell everyone--you don't...... there are good hairdressers around (not sure where you live) and lots of options for wigs.  I told the hairdresser that I needed it to look as close to my hair as possible and they did that-- I had them shave my head after the first treatment..... I wore the wig from January-June.... didn't love it, but it worked..... 

 I know this is scary--but here is how I look at it-- I had no nodes, no vascular invasion, no lymphatic invasion, a medium grade lump-- in my mind and in my onc's mind, we used chemo as insurance.  I almost never think about it any more....

 chemo is not easy, but it can be done.  You can do this and you will because you want to be around for as long as possible!!! I figure nothing survived in my body......

keep us posted--do get that second opinion.....

hi ladies-

im relatively a newbie, although ive spoken to some of you via pm.

cmf is definitely on option for intermidiate and low risk. you can propose to your onc and see how they feel. its low toxcitiy, no hair loss, and minimal side effects.

best of luck to everyone with decisions and treatment.

momand2kids - VERY well said!!!

Thank you!

xo to all

Good Morning everyone.

I was hoping to see many scores here so that I could see what other peoples' choices would be.  I was dx'd 4-2-10 w/ breast cancer, had a lumpectomy 5-7, also having 1/16 lymph nodes affected.  We did the oncotype test and received what I feel was good news last week, scoring only an 11.  My onc of course says it's my decision but said that the risks of chemo outweigh any benefits that I would gain.  I felt as though a pressure valve had been released on top my head.  So anyway, I've chosen no chemo and will have my first radiation simulation visit this week.  I just found these forums last week and intend on returning thru my treatment.

Another CMF'r  here - my oncotype score was  22 or 23,and my oncl. chose CMF for me.

Bean - I am also in the Northwest and CMF for some reason is very popular up here, so I would not be surprised if it is an option for you.

CMF is very easy to tolerate, and works well on the grade 1 and grade 2 tumors.

Whoever had the quote"yes you have cancer and now you have to wait".  I just love it - it is so true.  I was diagnosed in early November - and the holiday and severe snow storms we had that winter delayed my oncotype results and some other appts.  SO ANNOYING!

Hang in there ladies.  Best of luck to all with treatment and decisions!

suebean ~ check out the thread for girls starting Rads in June or July...it is really really helpful to go through the experience with other ladies....Best wishes and congrats on no-chemo!