Oncotype number and decision regarding chemotherapy

Hi I had one pos node and a score of 22 in 2009.

At that time I was choosing an unusual path not doing chemo. 

Ask for the full 4 page report with the charts. It is VERY helpful to see these, they include the margins of error. 

The way I read it, the chemo benefit kicks in about 20.5.

If you are above that score, look at where you fall on the chart and visualize what you are willing to do for that benefit. 

Keep in mind that serious chemo side effects are also a risk. 

For me chemo looked worthwhile around 25, but it really comes down to your values.

I also seem to be the sort of person who always gets the random side effects from everything. There were also some pre existing conditions that made me unusually concerned.

Another way to look at it, is that in the grey area the chance of the chemo helping is much smaller than it not helping. If it could have gotten my risk of dying from this under 10 percent I would have been game.

The downside is that I have to live with a higher chance of dying, but really how different does 14 percent feel from 10 percent.

These are all questions you face in the grey zone. 

Wait & see what the numbers show. No one 'wants' to do chemo, but if it is indicated, and can improve your chances of never having to do this again, then it is well worth the temporary 'ickiness'. With todays good anti-nausea meds & tailored treatments, most people don't find it to be as terrible as they imagined. Even with clear nodes, I did chemo because of a very big, aggressive, fast growing tumor. The oncotype was not readily available when I was diagnosed so I never had it done (I was only mildly estrogen positive so don't know if the score would have been very useful to me anyway). But, with my stats , looking back, I am definitely glad that I did the chemo. It is a peace of mind thing for me. Best of luck in your decisions!

ktfelder,

Waiting on the Oncotype score is difficult.  I was fairly certain with my very low PR, mild HER2 activity and high Ki67 I'd need chemo, and that was so.  My MO was ok to start chemo w/o the score, but I didn't want to never know what it was.  

With two positive nodes, that adds another layer for you and your MO.  Is there consideration for radiation in the nodal area?  Did you have lumpectomy or MX?  Some patients with low Onco DX score and positive nodes who chose to forgo chemo have focused radiation in the area.  That should be part of the conversation.

Good luck. 

Ktfelder, hi and welcome to the oncotype DX waiting room!  My oncotype was 24.....the middle of the middle. YUCK.  I chose chemo for the following reasons.  1) statistically, chemo reduced my recurrence risk from 16 to 12 percent.  For me, that was a lot. 2) despite being 63, I am a healthy person...I heal fast and tolerate medications well. 3) I have a fantastic support system to help with the day to day things and allow me to rest when needed 4) my onc recommended chemo and committed to helping me manage the side effects....when I told her I wanted to continue to work...she said "my job is to make sure that you maintain a normal schedule by helping you manage side effects. 5) my husband and grown children wanted me to do chemo.  Their input was important to me.

Once the decision was made, everything fell into place.  It wasn't fun, but I did well.  I missed 8 days work during the 4 1/2 months of treatment.  I lost my hair and had several really cute wigs.  Most people I work with didn't know I was in treatment, so I was able to maintain my privacy, which was important to me. 

If you need chemo, embrace it as your friend.  And whatever your decision, never look back. 

Love, MsP

Hi everyone! ktfelder, I am 43 and I had a small tumor that was also hormone positive. It was removed with clean margins, but like you there were also 2 positive lymph nodes that surprised everyone. My oncotype score was 17 -- at the high end of the low-risk category. So I was faced with the decision of whether or not to do chemo in addition to the radiation and hormone therapy that was already planned. Talk about maddening!

I kept looking to the stats for guidance, but the only data available is for node-negative cases, not node-positive like ours, so it was all still a guessing game. The RxPONDER trial that mmtagirl mentioned above is meant to provide the same type of projections for node-positive women in the future. In the trial, patients are randomly chosen to get chemo or skip it. My doctor was initially favor of chemo, but encouraged me to join the study, saying that with my case, she'd feel comfortable if I was randomized to skip it.

So after agonizing over whether to have the chemo or not, I decided to opt in to the trial and let the computer decide for me. I was selected for chemo --  I just finished my fourth and final round last month (doctor reduced my plan from the standard, so Tx consisted of four infusions three weeks apart). Luckily I have a strong support network and was able to take time off from work, so the chemo was not at all as devastating as the not-knowing period.

I have to say I was relieved to get chemo, because this way I feel like I did everything I possibly could. But that's me. I feel for you and what you're going through now and want to echo the sentiment that no matter what you choose, it will be the right choice.   

Ktfelder,  It's very difficult to wait for any test result, but as ruthbru says, once you have your plan in place, it will be so much better, so much calmer for you.  Try to do something fun, relaxing or tiring this weekend.  When I was waiting, I cleaned out all my closets, pantry and cupboards.  It was exhausting, but it felt good to get something productive done rather than just thinking about stupid cancer.  

Keep us posted! Love, MsP

This is a hard decision, my Oncotype was 27 and after getting a second opinion, I didn't do chemo. My MO recommended chemo and the MO at the NCI recognized research center didn't feel it was warranted. It was a hard decision but those margins of error in the full report were what decided it for me. I wondered if I would second guess myself but I haven't.

there is a node positive oncotype study...it is in a much easier chart form on the oncotype report

(admittedly the study group is much smaller than node negative)

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC314554...

I think also when we were diagnosed has something to do with our experience.

I sometimes worry my advice is getting out of date.

Ktfelder, as well as the support and information you've received from this awesome community, the main Breastcancer.org site has information about the Oncytype DX Test that you may find helpful.

Does anyone know when the TAILORRx (I think that was the name of the study) will be out? The results may help those of us in that dreaded intermediate category. 

Ktfelder-- it only takes about 10 days for your Onco to come back.  My MO saida score of less than 18 was good, but below 10 even better.  Mine was a 8, so it showed a 6% rate of reoccurance with 5 years of HT.  SO, I am taking my last radiation traeatment today and thensee him on the 27th for the pill that will give me my second menopause--neither one done naturally, first one surgical, second one chemical.   Ain't I special....

ktfelder, I was 62 when diagnosed 7 years ago, and tho node negative, I was a grade 3, and did chemotherapy.  I would do it all over again, and it wasn't nearly, nearly as bad as I feared it would be.  Mostly very very tired.  Now, in hindsight, the 5 years on Armidex was harder for me than chemotherapy.  Feel confident the combination of both was what I needed, and tho the chemotherapy isn't anything anyone who didn't HAVE to  would choose to have,  BUT, I really want to say, the experience wasn't nearly as awful as I was afraid it would be.

Hoping you make the decision that FEELS best for you.  Also, most women I know have gotten a second opinion after given a treatment plan.

I went with the second opinion, and hope you feel confidence in your decision too.

If you are Stage III, you need chemotherapy. Period. While chemo is not fun, it is very doable. Even though I was node negative; I had a big, aggressive tumor which came out of nowhere 6 months after a clear mammo. I'm glad I did everything, including chemo, right from the start to give myself the best shot of never having to go through this (and worse, if you move to Stage IV) again. Remember that chemo is not the enemy, cancer with. Chemo is like the Navy Seals, tough guys working FOR you to kill the terrorist cancer cells who will kill you, for sure, if they have a chance.