Oncotype 24, chemo or no chemo?

Hopeful82014

Oliger, I wouldn't take the TAILORx study quite that way. The investigators moved the bar downward (limiting the low range more stringently than the Oncotype does) in order to make certain that they weren't leaving anyone behind who might possibly have derived any benefit from chemo. I appreciate why they did it that way but rather wish they hadn't, as it has simply created confusion and, inadvertently, enlarged the gray area.

Nonetheless, my sense from my MO is that 18 is still the dividing line between low and intermediate risk, and I know many MOs are o.k. with those with a score of under 25 foregoing chemo, depending on their particular case, of course.

BarredOwl

Hi:

For those interested in the article referenced by Oliger, entitiled "What My Patients Are Asking" What Do the TAILORx Trials Results Mean For Me?", here is a link:

https://community.breastcancer.org/blog/what-my-pa...

Please note in particular the statement: ". . I'm telling my patients that the study is not finished yet and I will still use the standard values to determine risk."

Thus, the author is saying (among other things) that the standard definition of "low risk" as being a Recurrence Score of < 18 (less than 18, or RS = 1 to 17) for invasive disease is still applicable in clinical practice, absent evidence to the contrary. The standard ranges are based on prior clinical studies. Although the prior studies may not have been prospective and randomized trials, they were of sufficient quality for the test (with the standard ranges) to be incorporated into the National Comprehensive Cancer Network (NCCN) Guidelines a few years ago for specified patients (see Breast Cancer Guideline for Professionals at www.NCCN.org (free with registration), within the document, search for "21-gene").

Those with Recurrence Scores of 1-10 should be aware that the TailorX study population was a specific subset of ER and/or PR positive, HER2-negative, node-negative patients with invasive disease, so the recently published results are most pertinent to patients with characteristics that fall within those of the study group:

"The study included women 18 to 75 years of age with axillary node–negative invasive breast cancer that was estrogen-receptor–positive or progesterone-receptor–positive (or both) and that did not overexpress HER2. Patients had to meet National Comprehensive Cancer Network guidelines for the recommendation of adjuvant chemotherapy, including a primary tumor size of 1.1 to 5.0 cm in the greatest dimension for a tumor of any grade or a size of 0.6 to 1.0 cm in the greatest dimension for a tumor of intermediate or high histologic grade or nuclear grade (or both)."

Here is a link to the original report TailorX report published this fall (full article may be behind paywall):

http://www.nejm.org/doi/full/10.1056/NEJMoa1510764...

Although not peer-reviewed, as discussed in other threads, abstracts published at the European Cancer Congress (2015) and SABCS 2015 also support determinations based on standard ranges in the study populations assessed.

As always, each patient should discuss their specific case, recommendation, and basis therefor, including the relevance and import of clinical studies to their speciific situation, with their Medical Oncologist.

BarredOwl

Bertbon

thank you ALL so much for sharing your experiences. After talking to my surgeon today and reading your comments, I am much more at ease with my decision to start my TC chemo on the 29th. It is true when the doctors say everyone is different. But we all share the same goal, a happy and healthy life. I hope others with the same score continue to share their experiences, they will continue to reassure me of my decision and hopefully others.

swedge35

I just wish there was a number that said absolutely "Yes" or "No". My number is 18. By the old standards it's in the low-intermediate range. By the new standards it's middle-intermediate. I understand how you feel about should I or shouldn't I? My MO said it was my decision, he would support me either way, but he wouldn't make a recommendation or tell me what others he's treated have done. He gave me the numbers and sent me home to think about it. Chemo would give me 3% less chance of recurrence, on top of the 6% with taking arimidex. My family is really against chemo so I'm following their wishes but I feel like I'm at the casino and hoping I'll win the jackpot. With stage 1A and no lymph node involvement, I'm probably overthinking this. But hey, this is the Big "C" we're talking about, it's scary stuff.

Wenrisa

my oncotype dx was a 19 and my MO reccomended chemo for 3 reasons : 1) my tumor was graded a 3 so it was more aggressive, 2) I had a vascular inclusion (maybe that's what it's called) where they found cancer cells in my blood vessel and 3) my age - I was 43 when I was diagnosed which is a little on the younger side. When the MO talked about recurrance rates in 20 years I'd still only be 63...

I chose to go ahead with the chemo reccomendation based on those indicators... I was able to choose a chemo that is supposed to be much more tolerable than most. I just completed my second treatment..

mustlovepoodles

"Hey, for those of you starting TC, please know there is a 6% chance of permanent hair loss. Meaning, you will lose your hair as expected, but it will never grow back."

That may be so, but there's a 94% chance that my hair *will* grow back. When my doctor said I'd need chemo, I have to tell you my first thoughts were not about my hair!

For what it's worth, I have not lost aaaaaall my hair. I did lose enough that I had my head buzzed because I was mortified that it was falling onto my clothes and into my food. My hair is about 1/8" to 1/4" long, fuzzy like a baby chick. I got myself a really nice wig and some hats--didn't have any luck with scarves; they always feel like they're going to fall off the back of my head!

Should I be one of the 6%, I will still have no regrets for having chemo. I am far more interested in living a long life than I am having hair. If I have to wear hats and wigs for the rest of my life, so be it. I actually kinda like my wig--so easy to deal with in the morning; no blow-drying or styling. It looks way better than my natural hair, too. Heck, I may keep wearing my wig even after my hair comes in!

momof2doxies

At your age, my suggestion is take the chemo. I have gone through BC twice. The TC is much more tolerable than ACT. I have had no lasting side effects from the 4 rounds of TC. Best wishes to you on your journey.

Oliger45

Ms. Pharoah, thanks for your understanding. I'm very glad you have your energy back and can iron to your heart's content--chacon a son gout, as they say!

Oliger45

BarredOwl,

Much thanks! your thoughtful response has clarified my understanding.

Hopeful8201 and others' comments are also much appreciated!

MsPharoah

rose50 {{{Hugs}}}}} And thanks for your advocacy for full disclosure about the side effects and risks of chemo.

MsP

BlownOffCourse

mustlovepoodles, perhaps you will be one of the "lucky" ones who "gets" to continue to wear a wig for the rest of your life. At least you cannot say you were not advised of the risk of permanent hair loss, which is more than I can say.

It's not a matter of your hair or your life, it's a matter of being informed of all of the potential side effects of these drugs so that an informed decision can be made.

mustlovepoodles

BlownOffCourse and Rose50, I do appreciate your statements. Of course I hope my hair will grow back, as I'm sure you do, too. I did not mean to diminish your feelings regarding your hair. I cannot imagine permanently losing my hair in my 20s-30s-40s; my heart goes out to you, truly. For most women, our hair is our crowning glory and at the moment my hair is pretty darn unattractive and I would not be happy if it stayed this way permanently. I would deal with it and accept it because what other choice do we have? But I wouldn't be happy about it.

I agree with you that we should be advised prior to having chemo with TC that our hair might said Adios permanently. Would this cause some women to reject chemo out of hand? I don't know. I hope that they would find another way to have chemo that wouldn't cause permanent hair loss, if that is the case.

KBeee

I cannot imagine how devastating it must be to not have your hair grow back. Nevertheless, once you have informed others of that risk, try to not ctiticize anyone who is trying to be positive in the midst of chemo. Let's try to be supportive of each other. Everyone here is in a tough situation, even though everyon

Brutersmom

I have a 24. I am 63 years of age and no family history of CA in my family before the age of 75. I was offered AC&T but was told it was my choice. After going for a second opinion and hearing the 2nd MO take (he worked on compiling the date for the study) my answer was no. If I take Tamoxafin my recurrence risk was 16% with chemo 12% for 5 years and 2% in 10 years. The 16% goes down on anastrozole as well. Yes I worry about a recurrence but I would do that even with chemo. I would have a 12% risk of recurrence with chemo so it will always be there.

My MO, RO and BS all felt it was a good decision because there is just not enough information out there that shows a strong benefit. That is why it is a choice.

DoubleWhammy

As one of the 6%, I want to add to what has previously been said. I've been bald since August 4, 2010 when my hair fell out due to chemotherapy. I look like an 80-year-old man (I have SOME hair). I don't feel it's whether I should have had chemotherapy or not, it's that I should have been warned and allowed to make a fully informed decision about this chemotherapy and know if there are alternative agents (there are). I should have been told that this rare side effect could happen, but that this drug was being recommended over X drug because. I probably would have gone ahead with TC because I simply would not have believed I'd be in the 6%, but I would have known this can happen rather than spending years looking for a reason and a fix. The reason is Taxotere and there is no fix (at least yet). Most of my hair follicles are dead! Gone. Can't bring them back.

It's raining and windy today in California - I was not comfortable worrying about my wig blowing off, so I wore a hat to go out and about. A cute hat, but not a look I choose nor one that I chose to risk needing to wear. I looked like I was a cancer patient. I never wore hats before August of 2010 - now I wear them a lot. And wigs. And scarves.

My oncotype was 31 (at the low end of the high risk range where chemotherapy is recommended). I was scared to death and believe me, losing my hair temporarily did not bother me at all. Things have turned out well for me healthwise and I do not regret having chemotherapy. I do regret being permanently bald and mourn for my loss of beautiful hair.

Good luck to everyone. Thank you Rose for bringing this to the attention of others. It was via social media that I learned that this might be what was happening with my hair. It was denied initially by the medical profession. I hope this lack of information will not continue.

Suzanne

Nash54

24 for me as well....59 at time of DX. No chemo. Basically same reasons as Brutersmom. Good luck. There is no right or wrong answer....only what's right for you.