Oncotype Results

StartNew12212

Hi

Pretty new here. I just got my Oncotype results and am really discouraged. I felt like my pathology gave me a pretty good prognosis but now it seems that’s not the case. Can anyone give me some feedback on this? I’m scared and don’t see my MO until Th.

Recurrence Score 31

Distant Recurrence at 9ys 24%

Group Avg Absolute Chemo Benefit 15%

bcincolorado

When I had my ONCO test done my MO told me the benefit of chemo had to basically be reduced by 1/2 because of the risks of chemo. For me it made no sense. You are ER+PR+/Her2- as well and possibly hormonal meds would work for you since you had no positive nodes like I did. You should talk to your MO first and then decide after that.

Hopeful82014

I'm sorry you're struggling with such disappointing news. I know how it feels.

There is a computer program that your MO can use to further refine your risk of recurrence and the absolute benefit of chemo. I can't think of the name offhand but if you send a PM to Beesie she can fill you in on it.

IF you do have to do chemo perhaps you can take some small comfort from knowing that your score suggests that you would strongly benefit from chemo. And if you can help yourself re-frame the treatment (as in, this stuff is really knocking down those cancer cells) it can make it easier to wrap your mind around. Good luck.

StartNew12212

Thank you, Hopeful. I appreciate it. I have PMed Beesie.

AliceBastable

I thought oncotype was used on smaller tumors? I may be wrong, but I thought it was usually used on the 2 - 2.5 cm upper range, and that larger tumors got chemo without the oncotype test. I hope Beesie comes along with her statistics.

StartNew12212

Hi Alice,

Tumors under 5cm, Hormone + and Her 2 - get tested.

StartNew12212

Thank you, bcincolorado. I will do that for sure.

thecargirl

The test is called RSCP, it takes into consideration your age, tumor size and grade, along with your RS score . It changed my distance recurrence score from 22% to 6% ! My RS score was 32.

Susan

Lt Lumpectomy 9/16, 7mm pure mucinous, grade 1, stage 1, ER95%, PR 95% HER2-

Radiation, 2 years Arimidex

StartNew12212

Thank you, cargirl.

ETA: I think in my case (due to the size of my tumor and me being 43), my prognosis will be worse not better with that added measurement.

Boston12

I had a high Oncotype score (35), but a positive node so some of oncologists kind of dismiss the Oncotype when you have nodal involvement. But I felt I needed chemo anyway, given my path report. Very frankly, it wasn't anywhere near as bad as it's made out to be. I was able to work through it. I had no nausea, but it took away my appetite.

I've made some significant lifestyle changes and that's made all the difference. I walk 3-4 miles a day, have the healthiest diet you can imagine, and I feel great.

StartNew12212

Thanks, Boston. I appreciate your feedback. Both oncologists (I have 2 at the moment) recommend chemo. I think it's a done deal. My fear is now the worry of recurrence and death because this has moved me from a positive prognosis in the 90% to lower 80%. I keep reading 31 as that movement to the dark side in terms of oncotype scores.

Good job being so healthy. That's awesome.

etnasgrl

StartNew.....I know so well that fear and worry of recurrence and death. But, after facing a recurrence 4 years out from my first diagnosis, I can tell you that worrying and living in fear is NOT going to stop the cancer from recurring, if that is what it's going to do.
One thing that I have learned during all of this mess and believe 100% is that all of this is a total crap shoot. It makes no difference what the percentage is. It makes no difference if you do everything right or everything wrong. Many, many women go on to never have a recurrence even with the odds saying that they should. And others have a recurrence out of nowhere, when the odds were against that happening.
Numbers and percentage can be a great tool, but that's it. Just a tool. Please don't let them paralyze you with fear and dread. You will only be hurting yourself.
I was told, after I finished treatment back in 2016, that my recurrence rate was low and that I should remain NED (No Evidence of Disease) for years, possibly for life. Then, bam! 4 years later, it's back as a new primary in the other breast.
Those 4 years were spent worrying about exactly what ended up happening. Worrying didn't keep it away, it only kept me from enjoying life fully. This time around, I am determined to do what needs to be done, treatment wise, and simply move forward, knowing that I have absolutely NO control over this thing and if it comes back yet again, so be it. And if not, wonderful! In the meantime, my focus will be on what brings me joy and just living. As we know....life is just too short and honestly, I don't want to spend anymore of it in fear.
(((((Hugs)))) All of this can be so overwhelming and all encompassing. One day, one moment, at a time is all you can do. Try to rise above the fear, you will be so much better off for it.

StartNew12212

Thank you, etnasgrl. You are absolutely right. I’ve been so positive and optimistic until I got those results today. Cancer sucks.
I am so sorry about your recurrence. I hope you are doing well. It seems like you have a really good mindset.

AliceBastable

Beesie

StartNew, I hadn't signed on for a while and just saw your PM and this thread. I'm glad to see that you have the answers already. The computer program your MO can use to personalize your Oncotype recurrence risk is the Oncotype RSPC (Recurrence Score Pathology Clinical) model. But as you note, you have a larger than average tumor - the average tumor size in the TAILORx study, which was used to determine the recurrence risks associated with each Oncotype score, was 1.75cm - and you are younger than average. Within the RSPC model, both of those factors will increase the risk associated with an Oncotype 31 score, not decrease it.

As I recall, you also had a failed Sentinel Node Biopsy, and ITC were found in the single node that was removed, which put into question whether you were truly node negative. Since no other nodes appeared to be affected, either from any imaging or visually, odds are that your nodes are clear, nevertheless this is another fly in the ointment. I don't know what recurrence risk a 31 Oncotype score would be associated with on the node positive scale, but I would expect that it might be higher.

When you talk to your MO, the one thing you should ask about is the "Group Avg Absolute Chemo Benefit 15%". The 15% benefit for chemo is an average based on all scores in high range, and obviously the benefit is less for lower scores and more for higher scores. Chemo seems like the right and necessary treatment for you, but it's important to have the facts and understand the benefit you will be getting in terms of risk reduction. If your risk without chemo is 24%, what will your risk be if you have chemo? I don't think it would be 9% (24%-15%) - that's too great a benefit - but what will it be?

StartNew12212

Thank you so much, Beesie. The info is very helpful. I’ll be asking my MO about how much chemo reduces my risk of recurrence. Important question!

Due to the sentinel node fail, I now have to do radiation. It was that or go back in to remove more lymph nodes which could ultimately result in radiation anyways. It was recommended, and I felt more comfortable with, just doing the radiation. That was really disappointing, though.

I was set to do 4 cycles of TC. With these new results my MO has called me back in. I’m afraid I’m going to move to AC due to the high score which scares me to death. Do you happen to know anything about high Oncotype scores and chemo meds?

I’m in a crappy place. I managed to stay pretty positive and optimistic these past months. I’m not there at the moment.

Thanks, everyone.

KMom57

StartNew, I don’t have any info for you because I’m no expert on any of this. I just wanted to reach out and let you know you aren’t alone. Thinking of you and hoping for good news from your next dr visit.

StartNew12212

Thank you, KMom. I really appreciate it!

moth

I think you are right to suspect AC+T might be recommended.
The more extensive the disease and the higher the recurrence risks, the more intensive chemo is recommended. Don't get too scared of it if that's what they recommend. It's all doable and they manage side effects well these days

Hugs

StartNew12212

Thank you, moth.

Hopeful82014

Another chemo option I've seen used around this region for high oncotype scores is 6 rounds of T/C rather than 4. The studies I've seen (and it's been a while) demonstrated non-inferiority of 6 cylcles vis-a-vis AC-T. (I don't believe that 4 rounds did.) This might be something to explore with your MO.

StartNew12212

Thank you, Hopeful. I’ll ask her about this. I appreciate the information very much.

Beesie

Since you originally put the question to me, I'll just say that there is nothing I can add to the chemo discussion... that's not an area I know much about. I'm glad others have chimed in.

Hope your discussion with the MO goes well!

Hopeful82014

You're welcome, StartNew. I know how tough all of this is and hope you don't have to wait too long to get this all settled. The uncertainty and dread can be horrible.

StartNew12212

Thanks for all the info you did give, Beesie!

LimnoGal

StartNew-I had a pretty stunning oncotype score of 49. That almost made me wish I hadn’t asked for the test to be done! Otherwise, I was Stage 1, grade 3, no nodes, and that awkward low ER+/PR-.

I did 4 rounds of TC. A friend, who had better pathology, but a positive node, did 6 rounds of TC. She’s 8 years out now, and I’m nearly 5-both doing well.

Go talk to your MO, weigh your options, make your decisions and move forward. It is scary and sucky now, but it will get better

StartNew12212

Thank you for sharing, Limno!

Just left my MO. My initial 4 cycles of TC has turned to the dreaded 4 cycles of AC PLUS 4 cycles of Taxol. I’m devastated. She’s my second opinion dr. I see my other MO tomorrow at 130. I really trust today’s doctor, though. She knows her stuff which is why I go to her (had to get a special authorization to see her); I’m thinking this will be the plan.

Really sad at the moment....

StartNew12212

Limno, I know what you mean. My prognosis changed for the worst with this stupid Oncotype!

StartNew12212

Moth, I am TERRIFIED of AC. Can you tell me about your experience?

moth

I was very worried about nausea & vomiting as I'm a barfy person at baseline but go figure, had zero issues with that. They gave new excellent drugs for that.

I had problems keeping my white counts up and had treatment delays due to neutropenia. Turns out I also run fevers for no reason so they kept shoving me into hospital for IV antibiotics but it was all precautionary and throughout it all I felt fine, just fatigued.

It really was ok. You can do it. On my first day in my chemo pod there was a tiny woman who was probably at least 25+ yrs older than me, didn't speak English, was there with her granddaughter translating & she was on her last AC. I thought damn, if she can do it, surely I can push through.

Report any side effects; my center has progressive protocols for side effects and want to know asap so they can jump on them quickly.

Hugs