Should I do chemo despite oncotype score?

Sshibal

Hi everyone!

I'm 35 years old. My mom had BC at 55, but was aware of the lump since she was 40. Doctors didn't take her seriously, telling her that it was nothing and to just ignore it. She was eventually diagnosed with stage IIIA, ILC (ER/PR+), with 8 positive lymph nodes. She ended up having a bilateral mastectomy and pathology discovered DCIS in her other breast. She did chemo (AC-T), radiation, and hormone therapy and is now 8 years out with no recurrence.

Now here I am, in the same position my mom was in when she was younger, however I was fortunate enough to have an OBGYN who took me seriously and ordered an ultrasound. I basically caught it as early as I could have on my own. My genetic tests came back negative, so either it's not genetic or they just haven't identified the gene that caused our cancers. Nobody else in my family has had breast cancer except for a distant second cousin.

Anyway, because of my mom's experience and success in treatment, I was wondering if it's a good idea to be aggressive despite my oncotype score? I haven't received my score yet, but I'm determined to tackle this now so I have peace of mind knowing that I did everything possible. My surgeon thinks that my score will be around 25 just based on his experience with younger patients, but nothing is 100% definite yet.

Does anyone else have a similar experience and what did you end up doing?

ElaineTherese

Hi!

I would wait for the Oncotype results and then decide. There's no way for you to know that your Mom's successful treatment was due to chemo. Moreover, the characteristics of your cancer could differ from hers, even if you're both ER+/PR+/HER2-.

I did chemo, but that's because it was indicated for me as a triple positive person. While chemo is doable, if your Oncotype score is low, I wouldn't bother.

Good luck!

KathyL624

I was 38 and had a low oncotype (9) so chemo was not indicated. I would have done it in a heartbeat if there was any benefit but my MO showed me all the stats and it didn’t make sense

Sshibal

Elaine,

Ahh ok! I will wait and see. I guess I'm just scared of distant recurrence and get a little ahead of myself sometimes. I'm so ready to get this over with.

Kathy,

That's good to know that it's possible for the score to be so low. I always hear about people getting higher scores, so it makes it seem like chemo is inevitable. What treatments did you end up doing if you don't mind me asking? My mom's oncologist was shocked to hear that my surgeon was suggesting chemo because he wouldn't have gone that far without the oncotype results.

MinusTwo

sshibal - it's usually good to stay with the original thread that you started - that way people can follow along with what's happening.

Yogatyme

The purpose of the Oncotype score is to determine if chemo would be of any benefit. A low score indicates no added benefit so to put yourself through that seems unnecessary. Additionally, chemo also compromises your immune system, which puts you at risk for all kinds of “bugs”. It’s understandable that you want to do all you can to combat this beast, but your MO will recommend what is clinically appropriate without overdoing. Best wishes for you going forward

alissat

I was diagnosed at 46. My oncotype was 13 & my ki67 was 30-40%. My MO said she could be convinced to go either way. Since my growth rate was high, I decided to do chemo. I decided to leave no stone unturned. Get all your numbers & listen to what your MO suggests. Best of luck to you

alissat

I was diagnosed at 46. My oncotype was 13 & my ki67 was 30-40%. My MO said she could be convinced to go either way. Since my growth rate was high, I decided to do chemo. I decided to leave no stone unturned. Get all your numbers & listen to what your MO suggests. Best of luck to you.

KathyL624

Shibal, I had a double mastectomy and have been doing monthly lupron shots with an A.I. I chose this more aggressive path because I was uneasy about the no chemo thing, to be honest. My MO thought Tamoxifen was the way to go, but I really wanted a more aggressive treatment, even if it meant only a small increase in benefit. It was really hard to wrap my head around the fact that chemo would do more harm than good for me.

Salamandra

Hey Shiibal,

35 is considered young for breast cancer. Not crazy young like 25, but still young enough that is associated with more aggressive cancer *and* doctors might be more likely to recommend more aggressive treatment.

That said, now we have the technology to know with some level of certainty how aggressive any particular cancer is. So they don't have to treat based on general assumptions, but can catch an aggressive cancer in an older patient and vice versa.

I would second to wait for your oncotype. It's not even a pure question of risk/reward of chemo, chemo is actually less effective for certain types of cancers. The science for avoiding chemo in some cases is really sound - between the lower efficacy and the risks of chemo, there is statistical reduction in overall survival.

I would also just say to not be cavalier about the risks. Some women do very well with chemo and some have permanent side effects. I was lucky not to be in a position to have to decide, but I was pretty cavalier about tamoxifen. I've never ever had serious side effect issues from any kind of medication, including hormonal, and I assumed it would be fine. It turned out that my body will not tolerate it. I'm lucky that I had no permanent side effects. But it's just luck.

So I would not see chemo as a 'better safe than sorry' thing. It's really good medicine but only if it's appropriate for your condition.

That said, the waiting and not knowing is excruciating. At the beginning it felt like so much waiting, and always something more to wait for. Hang in there.

Sshibal

Hey everyone!

I just got back from my appointment and my oncotype score ended up being 16. She said I'm on the threshold of it either being not beneficial at all or being 1.6% beneficial.

Basically the scores are:

0-15 = not beneficial

16-20 = 1.6% beneficial

Overall the report says I have a 4% chance of distant recurrence (with an AI or tamoxifen) within the next 9 years.

My onco is recommending that I not do chemo, because the tumors were small (6mm and 3.5mm) and my lymph nodes were negative. However my high grade did worry her, but not enough to go through with chemo. Also she wants to induce menopause and give me letrozole for 5 years and then tamoxifen for 5 years after that. I will also get radiation for one month.

Does this sound like a good plan? Anyone with a similar experience?

Beesie

I'd ask the MO to run the Oncotype RSPC (Recurrence Score Pathology Clinical). This is a simple quick computer model that Genomic Health (the Oncotype people) make available to MOs. It will take your 16 score, and add the extra considerations of your age, the tumor size, the grade, and the fact that you will be taking an AI. Then it will kick out a different 9-year recurrence risk, one that is not generalized but is specific to you.

The result might not be much different... or maybe it will be. Your small tumor size is favorable and will drive a lower than average recurrence risk. But your age is much younger than most, and that will drive a higher risk, as will the fact that your tumor is grade 3. What this model will tell you is whether your young age and grade 3 tumor means that your risk is higher than this average 4% risk, and that could impact your decision on whether or not to do chemo.

This model is not well publicized so most people who get it run for them have to ask for it. But quite a few people on this site have asked for it (do a search of "Oncotype RSPC" in the search bar on the left of this screen) and the results have often been surprising, changing a decision to have or not have chemo. And if it only ends up confirming your decision because it shows a risk level similar to what you've already been told, well, that's helpful too.

If you can call and speak to your MO, she should have access to the model and should be able to run it for you in two minutes while you are on the phone.

Hope that helps!

Sshibal

Beesie, I will definitely call my onco tomorrow and ask her about that. The paper she gave me has three big boxes that say my score (16), recurrence risk with AI only (4%), and group average chemotherapy benefit all ages (<1%). Will the RSPC change the recurrence percentage?

Also she said that I'm in a clinically low risk group and that chemo-induced menopause was more likely to help me than the actual chemo, which is why she wants me on an AI. Should I try and get a second opinion? I'm super nervous that I'm going to make the wrong decision.

Beesie

"Will the RSPC change the recurrence percentage?"

Maybe, or maybe not. Take a look at OnTarget's post of Sep 17, 2019 10:20PM in the following thread: Topic: Oncotype Dx and RSCP score 19% to 6% Like you, OnTarget had a 16 score. Her clinical and pathological factors are different than yours - she is older than you (42), has a much larger tumor, her tumor is grade 2. Her RSPC recurrence risk was quite different than the generic 4% risk associated with an Oncotype 16 score. In your case, I don't know how much weight the high grade and your age will be given, as compared to the small size of the tumor. The small tumor might override the other elements and not change the recurrence rate by much. Or maybe your age and the grade of the tumor will override the small size and the estimate of your risk will increase. It could go either way.

Given your very young age and the fact that your tumor is high grade, I am a bit surprised that your MO is saying that you are in a clinically low risk group. That said, some of the elements of your diagnosis are very favorable - the low Ki-67, the small size of the tumors, and the fact that your cancer is tubular. So it seems to me that you fall in the middle, with some positive factors and some negative factors.

From what I know about this (which admittedly isn't much), your MO's recommendation that you go into chemo-induced menopause so that you can take an AI seems to make sense.

Since you fall right on the line for chemo, I think a second opinion might be a good idea.

Let us know if your MO is willing to run the RSPC model and if so, what the result is.

Salamandra

Sshibal,

For what it's worth, being borderline during the Corona virus should maybe be a tick in the 'no' column when you're making your decision. This seems like a bad time to purposely spend more time in medical centers and lower your immune system unless it's clearly medically indicated.

A second opinion though seems like a great idea if it's possible to arrange.

Sshibal

Beesie - I just called my hospital and they're going to call me back with the new score. I believe a study came out saying that for people in the oncotype intermediate category (16-20) chemo often wasn't needed. Apparently since chemo can induce menopause, many intermediate ER+ only women were only benefiting from that rather than the actual chemo, so my onco said that hormonal therapy would make more sense. I am also kind of shocked that I'm not receiving chemo, because my surgeon assumed that was a given based on my age.

Sala - My onco did mention Corona being part of her decision, but I would rather do chemo (if I need it) during this epidemic than spend the rest of my life wondering if I did the right thing. I think that would drive me crazy. I've been really good about isolating myself and I'm able to work from home and get my groceries delivered, so I think my risk is pretty low.

ARmom4

Hi Sshibal! I commented on your other thread but noticed you've been on this one. We chatted before. I wanted to let you know what that Mayo Clinic recommended for me. I'm also 35. Stage 1a grade 3. They said because of my young age and high grade I should do weekly Taxol (with Herceptin bc I'm Her2+)for 12 weeks. Then on to Tamoxifen. I already felt like I wanted to be aggressive and they just confirmed that.

I mentioned Coronavirus to my MO. He said just be extra careful. Stay home unless I'm coming to treatment and don't allow visitors at home. It's still really scary!

Sshibal

Hey!! Sorry I wasn't seeing the updates on the other thread!

I'm sorry you're getting chemo, but glad they're being aggressive with it! I'm so confused why I'm being told no chemo now. Did you ever get an oncotype score?

Beesie

Sshibal, the study you are referring to is the TAILORx study. It did say that for patients over age 50, chemo is not required for those with Oncotype scores of 16 - 25.

For those age 50 and under, chemo is up for discussion for patients who have scores in that range. In the lower half of the range, 16 - 20, yes, it is a question as to whether being put into menopause might have a similar beneficial effect as chemo. If you were 48, I think a "no chemo" recommendation with a 16 score would be consistent across any number of MOs you might speak to. But at age 35, I suspect you might get differing opinions. Age does matter; younger women are more likely to have aggressive cancers and more likely to develop recurrences, as many studies have shown. And the timeframe that is relevant to you is much longer. Oncotype results estimate recurrence risk over 9 years; of all breast cancer subtypes, ER+/PR+/HER2- cancers are most prone to late recurrences, even 15 or 20 years out.

This doesn't mean that your cancer might not be indolent and chemo might not be required, but given your borderline Oncotype results, I think it's worth talking to more than one MO.

Have you tried out the PREDICT tool? One benefit is that it has the option to look at the results for 15 years, which is certainly relevant for someone who is only 35. https://breast.predict.nhs.uk/tool

Sshibal

That tool says there's only a 1% difference between doing chemo or not for me. I'll take all that I can get, but is 1% enough to go through the effects of chemo? Maybe that's why my onco didn't recommend it, I dunno. I wish she would hurry up and call me already so I can ask lol.

Beesie

I may have input the wrong info, but when I looked at it, at 15 years the survival rate was 2.3% better with 3rd generation chemo (dose-dense ACx4-Tx4, for example), and 1.4% better with 2nd generation chemo. And note that this model estimates survival rates, not recurrence rates (which is what you get with the Oncotype score) which means that at 15 years there will remain an additional small percentage of patients who have been diagnosed with a metastatic recurrence who living with the disease.

Is 1% or even 2.3% or even 4% (if you add in an estimate for those living with a metastatic recurrence at 15 years) worth taking chemo? For some people 'yes', and for other people 'no'.

Sshibal

So the nurse called and said my onco has no idea what the RSPC calculator is. I ended up looking it up myself, finding the PDF that explains to clinicians how to use the calculator, and emailed it to her. She's going to look it over tomorrow and call me then.

OnlyGirlof5

How long did it take to get scores back? I was told 7-10 days from when tissue was received. My appointment to discuss this step was 2 weeks ago yesterday. When would it be considered enough time to follow-up with the MO's office? I am so sick of waiting around for results.

Sshibal

OnlyGirl - It took over 4 weeks after my surgery for me to get my results back. I met with my radiation oncologist a week ago and he said they hadn't received it yet. I finally got my results when I met with my medical oncologist yesterday. It's supposed to be 7-10 days after the lab receives it and, from my understanding, only one lab in the entire country does that test. They might also be having issues because of the coronavirus, so that could be why it's taking so long. I totally understand how you feel though, waiting sucks. I hope you get a low score!

OnlyGirlof5

Sshibal- ugh! 4 weeks? I was afraid that might be a possibility. The waiting is brutal. Every visit on the horizon is cancelled or postponed. These dates are milestones when related to our recovery process. The first 3 TE fill appointments have been cancelled. As of now, I have a tentative fill for 4/10.. That is still 2+ weeks away. That would have been the halfway point with the post-op plan I have more imaging tomorrow afternoon because I found a lump on my right side. I can not even imagine going through the past 4 months all over again. I am trying ever so hard to keep positive, but I am getting hit left and right with results I have to wait on.

I'm glad your score was low. Please keep us posted on that other score. I am curious to see if that provides you additional information for your decision making.

Salamandra

Hey Shhibal,

It looks like ARmom's tumor was HER+. My understanding is that chemotherapy is almost always recommended for HER+ cases.

Good luck with this complex decision

Sshibal

Got my RSCP results!

My oncologist had never heard of the RSCP calculator and actually thanked me for telling them about it lol.

Anyway it says with induced menopause + Letrozole I have a 10% chance of distant recurrence over the next 10 years and a 13% chance with Tamoxifen. Anyone with similar numbers? Has anyone with a similar risk percentage decided to go through with chemo?

Beesie

Glad that you MO was able to run the RSPC model for you. What did she say about chemo, given this higher risk?

I like digging into numbers and research studies, so here is something I pulled up. This chart is from the TAILORx study, showing recurrence rates for Oncotype scores for patients under age 50:

I've put in a bunch of lines.

• In green is your original Oncotype result, a 16 score with a 4% recurrence risk.
• In purple is your new Oncotype RSPC recurrence risk of 10%. A 10% risk means that your RSPC results puts you at equivalent to an Oncotype 24 score - because normally a 10% risk is associated with a 24 score.
• In blue is the impact of adding chemo for those who have an Oncotype 24 score and a 10% risk. It appears that chemo takes recurrence risk down to 5%.

.

To be honest, my understanding is that chemo normally does not reduce metastatic recurrence risk by as much as 50%, but that is what this TAILORx chart shows. So that's your decision. Are you okay with a 10% risk, undergoing induced menopause and taking Letrozole, and or do you want to reduce this risk, possibly to as low as 5%, by having chemo? There is no right or wrong answer, just what feels right to you.

Sshibal

Beesie - Thank you!!! Do you have a link to the study with this chart in it? I'm emailing my onco right now.

Sshibal

Ahh I see you added in the lines! Sorry I read through your post real fast because I was rushing to get an email out to my onco. I will send this chart to her as well.

OnlyGirlof5

Beesie, this is extremely helpful. I should have my oncotype results in soon and plan to ask about this additional score. My MO has cited the TAILORx study when she first discussed why she and the tumor board felt I was in a grey area. I have not gone through menopause yet, and with my high ER/PR+ scores, she is of the opinion that suppressing my estrogen may be just as beneficial as chemo. That is where this score will help her make the best recommendation. I feel fortunate that my MO is a researcher so she is all about the data and stats. She does not approach treatment with black and white answers, so I feel as if she and I are a team.