Hi. I'm new. My oncotype is freaking me out.

jamiens

Greetings everyone. I'm new to posting and only started reading about a week ago. My baseline mammogram upon turning 40 discovered cancer. Stage 1A. I had two biopsies and a lumpectomy and re-excision. The lumpectomy margins and the re-excision margins both showed DCIS, more the second time around. My surgeon and I decided to quit messing around in there and move forward with a bilateral mastectomy.

I meet with the reconstruction surgeon (leaning toward DIEP or free TRAM) next week.

Today, I went in for a check-up and my OncotypeDX is 61. 61! I'm scrolling through signatures and I don't see numbers that high. I'm definitely having chemo but now the team is all going to talk and see if I should have chemo first or surgery first.

At every turn, my doctors say the results are unexpected. Does anyone else have a similar experience?

I've been trying so hard to remain positive and have a good attitude but the last month feels like I've gone from "lumpectomy with radiation" to "hope you're hardy, bye-bye boobs, hello chemo"

Help me feel not alone?

Lisey

Keep in mind DCIS Scores with Oncotype are completely different than for IDC. It very well could be that they sent in the DCIS, not the IDC. - and honestly, getting a BMX wasn't bad at all.. and the best decision ever for me. I would never want to keep my boobs - one was trying to kill me and both were cystic. I feel 100% being flat and fabulous, and am grateful I went the BMX option rather than doing a Lumpectomy/Rads.

ElaineTherese

I didn't have an Oncotype test because I'm HER2+, and chemo was in the cards for me after I tested positive for that. Being Grade 3 is a sign that your cancer is aggressive, but otherwise? I have no idea why you got a 61.

I do know that when I started my BC journey, the news just kept getting worse and worse. At first, my tumor was 3.9 cm. Then, it was 5 cm. Then a node was involved, and MO thought she saw a satellite tumor..... By the time I got a PET scan, I was sure cancer was everywhere!

But, it wasn't. I did my treatment (and yes, that involve five months of chemo), and now I'm good. I hope your news gets better soon; it's hard to keep hearing "this is worse than we thought." ((Hugs))

Lisey

Here is the results for Oncotype DCIS... I bet that is the biopsy they got. You are still high risk, but just barely.

Oncotype DX DCIS is expressed in variables from 0 to 100. A DCIS Score of < 39 indicates low risk for recurrence, 39 to 54 indicates intermediate risk, and ≥ 55 indicates high risk.

Tresjoli2

I just wanted to give you a virtual hug, as someone who turned 40 and went for her first mammogram and boom! cancer. so hugs....

Meow13

I would not get too freaked out. A low oncodx doesn't mean you won't get a recurrence and a high number doesn't mean it will recur. It just helps you decide your treatment. My oncodx for IDC and ILC was 34, I didn't do the chemo but did do AI drugs. I am 5 years no recurrenc. A friend of mine had ILC with oncodx of 4 hers was back within 6 months as mets to spine. She thinks that she was probably stage IV from the start.

BarredOwl

Hi jamiens:

A score of 61 on the invasive test is not very common, but there are others here who got similar high scores. For example, on first page of this thread, two members had scores of 52 and one had a score of 61 on the invasive test:

"Topic: Long term "high oncotype test" survivors"

https://community.breastcancer.org/forum/85/topics/719253?page=9#idx_269

Be sure to review "Quantitative Single Gene Reports" in the last section of your Oncotype test report to confirm that the ER, PR and HER2 statuses (based on detection of mRNA by Oncotype) are generally consistent with the ER+ PR- HER2- statuses from your pathology report(s) from biopsy and/or surgery.

By the way, if your treatment team has some continuing concern about the Oncotype test result in light of other pathology findings, you may wish to ask your medical oncologist whether he would recommend any additional steps by way of review or confirmation.*

BarredOwl

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*e.g., an internal pathology review of ER and HER2 status, with an eye towards possible artifacts, sample processing issues, and/or possible tumor heterogeneity; if indicated, additional pathology testing on surgical samples (e.g., HER2); an outside pathology review; consultation between the local pathologist and pathologist at GenomicHealth regarding quality / representativeness of the slides for provided for Oncotype testing or any other potential issues; and/or other possible action suggested by your medical oncologist or pathologist.

KBeee

I'm sorry you keep getting unexpected results and bad news. It's so hard when so much is unknown and outbid your control. Do you know how much was IDC and how much was DCIS? Do you know if the Oncotype was DCIS or IDC?

A second opinion to review everything is always s good idea. It will probably not change your plans, but a second set of eyes and ideas can help. Best wishes

jamiens

Thank you to each who responded!

I did look at my report carefully and the Oncotype is definitely for IDC not DCIS. (I had hoped the same thing you mentioned.) The other odd thing was that my biopsies were both PR+ although weak but the Oncotype was PR-.

I firmly and faithfully believe that I'm going to be okay in the long run. I was (kinda am) just shaken that everything seems to be going the wrong way from what was anticipated.

My dh wants to make a 3 hour drive for a second opinion but I don't really see what another team would do differently? At this point, I am all for bmx and I don't think another team would say, "Don't do chemo." You know? My doctor HAS been wrong in her predictions but I don't feel that's her FAULT, rather unexpected circumstances.

I meet the reconstruction surgeon and the chemo doctor next week. If I am not feeling confident and comfortable with them, I will seek a second opinion. I don't feel locked in, just okay with who I know *so far* -- my general surgeon and nurse navigator.

BarredOwl

Regarding a second opinion, as a layperson with no medical training, it is hard to predict what if anything they would do differently. For example, would the second opinion team spot some deficiency or area of ambiguity, which they interpret differently and/or that leads them to recommend additional imaging or confirmatory testing based on their expert review? Sometimes, they may present additional surgical options, not addressed by the previous team. They may recommend or offer different chemotherapy regimen(s) and/or approaches to endocrine therapy. The second opinion process is a good way to test the sufficiency/accuracy of the work-up and quality of the advice received.

In my case, I sought a second opinion review of all imaging, pathology, and surgical treatment advice. I was looking for confirmation that unilateral mastectomy was necessary. Unexpectedly, the radiologist requested additional mammography imaging, which led to an additional biopsy, and a change in my diagnosis from unilateral to bilateral disease.

BarredOwl

jamiens

Doing better today. Thank you for all the responses!

Wendyohms

hi jamiens, I also had a high oncotype score of 50. It totally freaked me out and I still can get upset about it. I finished chemo august 3 of this year and rads last month. My attitude is is that the score is to let us know who would benefit most from chemo and you and I fall into that category. We have to have faith that the chemo wipes out all those little buggers and the Amiridex in my case will keep them away. I feel your fear and identify with it. It's definitely one day at a time

sballan

Regarding a second opinion, I would get one. I got a second opinion and surprisingly each had a totally different treatment plan. I had a low Oncotype score which made me happy, but one dr. recommends chemo anyway. At least you know that you have more aggressive options to take. For me, because of cancer in one of my lymph nodes it is still unclear what treatment path to take. Hang in there.

Warrior4sararyan

Hi-

My doctor did not order oncotype test. I do not need chemo as I was stage 1 and two very small tumors. Invasive breast carcinoma ductal.No lymph nodes involved. I am having really bad side effects on Arimidex. My question is would the Oncotype test would let me know the chance of the cancer coming back?

Thank you