Oncotype number and decision regarding chemotherapy

ktfelder

This is my first time posting, but in the last month I have learned so much from all of you. 

I am 57 years old and my cancer is small, 1.5cm; IDC, moderately aggressive, hormone positive. But I surprised the doctors by having 2 positive sentinal lymph nodes. That makes me Stage 2. Five years ago, treatment would have automatically included chemotherapy. However, now they are looking at the results of the oncotype to determine whether chemo would be beneficial. I have almost 2 weeks before I find out the oncotype result and it is driving me crazy.

If the number falls in the low-risk area, I will probably choose not to have chemo due to the potential side affects. If the number is high, I will likely choose to have chemo. It's that middle area that concerns me. I am so afraid the choice will not be clear. Either way, I will be having radiation and hormone therapy.

I would love to hear from others who faced this decision and what you chose to do. It would be most helpful if you also share your oncotype number, and age (if it was a factor in your decision).

Thank you in advance for sharing your thoughts on this.

cookiegal

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. 

mmtagirl

There is a clinical trial looking at this very subject for 1-3 node positive, er+, <25 oncotype score.  It's the RxPonder trial.  http://www.swog.org/Visitors/S1007/patients.asp.  Since standard of care currently is chemo the trial is determining if the same benefits for tamoxifen only apply for lower oncotype dx scores as node negative.  The hypothesis is that the answer is yes, but, it has not been conclusively studied yet.

You might ask you MO to see if you qualify.  I am currently participating in the trial.  Quite frankly, I entered the trial hoping to get placed in the hormone therapy only arm of the trial.  It was my way of justifying not getting chemo.  I ended up in the chemo arm and finished round 2 last week.  Maybe I ended up in that arm for a reason...no looking back.  Chemo is no walk in the park, but, I you will get through it.  I also take comfort in knowing I am participating in a program that will help the sisters behind me.

My onco score was 16. I had. 25% recurrance score if I did nothing even with a BMX. Tamoxifen brought it down to 13% and chemo another 4-6%. No decision is easy or perfect.  Your decision will be the right decision.

Good luck!

ruthbru

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!

merg

My score was a 27. High end of middle.So I asked my family doc what to do. (we trust him) He said go for it. Chemo sux, but it'll be over soon. I know you wish someone would give you a definite answer but you'll do what's best for you. And it'll be ok.

doxie

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. 

ruthbru

I took all my stats to my trusted family doctor too, and he said, "If you were my wife, I would tell you to do the chemo." I did the chemo.

MsPharoah

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

Rose_d

KTfelder,

I had similar stats to you - my tumor was 1.7cm ER/PR + and HER -.  And I had one positive node (2.5mm).  I think because of my age (I was 2 weeks shy of my 40th at my diagnosis) and the positive node, my onc didn't really give me an option, but insisted I needed to do chemo.

I didn't even do the oncotype test.

I was a little surprised at the time and of course devastated at having to do chemo.  But what my onc said resonated with me.  She said "the oncotype test tells you the likelihood of recurrance in 5 or 10 years.  I'm not worried about 5 or 10 years for you, I'm interested in way more time than that".

So I think age is a very important factor and, while you are older than I am, you are still young.  

I think the advice to wait for the test is good advice.  But I will tell you that you will make it through chemo if that's what you decide to do.

And at the end of the day, while I am still worried about recurrance, I am glad to have the peace of mind that regardless of what happens I did everything I could have done.

Best of luck with your decision.

Rose

vixwarrior

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.   

coraleliz

At my first meeting with the MO, I was given statistics & told I needed to decide for myself. The RXsponder trial was just starting to recruit when I was diagnosed. I was not able to participate. I also had to fight for the oncotype test. I was going to decide "no chemo" but knowing that the oncotype test was out there, made me uneasy. I wanted this piece of information &  told myself I would do chemo it it came back intermediate or high. My results came back much sooner than expected. Despite having 2 positive nodes(3mm), my score came back "4".

Hope your test result comes back soon, so you can move on. Hate being stuck in the doldrums

ktfelder

Thank you so much to each of you that responded. I have read each of your messages at least 3 times, and so appreciate your words of wisdom. Thank you again for taking the time to share your experiences. You, and this board, have been my lifeline through this frightening time.

ruthbru

Hang in there! This deciding stuff is really the worst part; once you have a plan in place, you just do it and get it over with.

MsPharoah

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

Lenn13ka

agree... Hang in there and get all the information you need. I was a surprise positive node, stage 2 grade 2/3 with an Oncotype of 17. I had six opinions  split right down the middle  on chemo. I was the same age as you.

One of my "no's" came from one of the to BC researchers in the country so went with her as she was so direct with her reasons for not doing chemo.  I am a very strong ER positive. 

Making these decisions is not easy. I just tried to learn as much as I  could before I decided. Good luck with everything!

Golden01

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.

auntienance

26 here. My onc recommended it but left the decision up to me. I didn't want any regrets down the road so I did the chemo.  Not a lot of fun, but very manageable, much easier than I anticipated. Once I made the decision, I was much less stressed. Good luck, whatever you choose.

cookiegal

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.

Rockym

ktfelder, I was 46 at DX and my Oncotype was a 22.  My two positive nodes were considered micromets and did not show up on the SNB, but they were there on the final pathology.  I researched till I was blue in the face trying to find reasons not to do chemo, but in the end I went ahead.  My kids were young and I didn't want any regrets.  Had my number came back as 15 or lower, I probably wouldn't have done it.  That said, I am almost at my 3 year mark and all is well.  My long hair is back and other then an early menopause and some rough patches, life is okay now.  I hope your numbers are low and you can just move on to rads. Good luck with your results.

Moderators

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.

mmtagirl

the current clinical trial is the RxPonder trial and here is the link 

http://www.swog.org/Visitors/S1007/patients.asp

You must be er+, 1-3 node positive and oncotype dx <25.  Randomized to chemo and hormone therapy or hormone therapy only.  I am in the trial and randomized to chemo.

Golden01

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. 

Moderators

Golden01, you can read more about the TAILORx Breast Cancer Trial at this NCI link.

Redheaded1

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....

cateyes

I am 47 single mom two sons older 17 and 20. I was diagnosed
03/03/14 with IDC. Told it was early a small tumor and most likely stage 1. I
had surgery (lumpectomy and sentinel node removal) on 03/25. Both sentinel
nodes were positive for cancer moving me to stage 2. They wanted more lymph
nodes so I had a second surgery (auxiliary node dissection) and they tool
24 more lymph nodes on 04/11. That one really hurt. Couldn't move my arm for
almost 2 weeks. I am 5 weeks out and doing pretty good. Unfortunately they
found two more positive nodes (microscopic cancer cells) moving me to stage 3. Of course due to
lymph node involvement they want to do an "aggressive" Chemo treatment,
full course radiation (6 1/3 weeks 33 sessions) and because I an ER+ and PR+
the want 5 years of hormone suppression therapy. I did also have a PET scan
done and it said "no evidence for metastatic disease". I am
considering declining the chemo treatment, no oncotype testing has been offered. Is this something I should have them do before making a final decision?

Anonymous

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.

SpecialK

cateyes - technically if you have micromets to the additional lymph nodes that do not exceed 2mm you are still a stage IIB.  Oncotype Dx testing is available for 1-3 positive nodes, but not all oncologists will order it for patients with positive nodes because the test was originally conceived for node negative ER+ patients.  Recently, some node positive patients have also received this test but the data regarding accuracy for these patients is still early.  It is an expensive test and some insurance companies may not pay for it for node positive patients since chemotherapy is usually recommended for this population. Do you have a specific reason for declining chemotherapy for cancer that has spread beyond the breast?

ruthbru

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.

MsPharoah

Ruthbru....you definitely took the words out of my mouth.  I think everyone should do their "homework" before they make decisions about their treatment, and everyone is entitled to make their own decisions.  But the reality is that for some set of women, chemotherapy is required.  For another set it is NOT, and then there are those of us in the gray zone.   Stage 3 needs chemo!  

I didn't want to do chemo...who does????  But when my onc recommended it and I determined it was right for me based on my research, I did not fear chemo at all.  I remember seeing my onc before each treatment and when she would ask how I was doing, I replied.  "Great...I always feel good knowing that we are going to be killing more cancer!"   I said the same thing to myself when I hopped up on the radiation table for 6 1/2 weeks! 

MsP

ktfelder

Thank you all so much for sharing your experiences and kind words. I found out today that my oncotype number is 16. Since I previously decided that I would not have chemo if I fell within the low-risk group, I will not be having chemo. I will be going straight into radiation, then hormone treatment. While I am in shock right now, I know this is good news. 

Again, I really appreciate each and every response to my post.

Lenn13ka

Good luck with your treatment!  Good for you for making your decision - the worst is over.