Oncotype number and decision regarding chemotherapy

thinkpink4ever

Lorbgoo, I see your chemo cocktail was the same as the one I'm getting right now.  Did you have 4 treatments?

Lorbgoo

yes I did thinkpink. 4 treatments   One every 3 weeks. On tamoxifen now. 

Loral

Thinkpink...I wish you minimal side effects while you treat BC for the second time.... I was not Braca +...

thinkpink4ever

Lorbgoo, I did 5 years of Tamoxifen the first time.  I think my doctor is leaning toward Arimidex this go round.  I hope it's not too bad on me, as far as SEs go.  But I truly believe the the Tamoxifen and Femara kept my cancer at bay, and played a big part in my being cancer free for 13 years. 

One love,

tp4ever

Srh242

I had abc oncotype of 3 and a high risk mammaprint! , who is right? . I don't know, but I did chemo since I was 36 years old.

ml143333

I had an oncotype score of 23 which is definitely in that grey area.  After talking with my MO, my husband and I decided on chemo.  Our thought is why not go ahead and do it?  It further reduces my chances of recurrence to 11%.  Once chemo is finished, I will start tamoxifen.

I chose CMF every three weeks for six months versus Taxotere every three weeks for 3 months. 

Lorbgoo

good luck Mandy. Before you know it it will be over. 

Meow13

Just curious Mandy are you going to try cold caps for your hair?

Leslienva

I had CMF chemo in 2000 and didn't lose my hair. Now 14 years later I had a new primary tumor and an oncotype of 29-very high intermediate. I'm guessing the MO will recommend chemo again, which will also delay my implant surgery (I had a double mastectomy with TE in Sepember). 

Meow13

Leslie, Are you taking any AI's or tamoxifen? It looks like they be beneficial to our ER/PR + cancers.

I am sorry after 14 years you have to deal with this again. I am curious to see what treatment they recommend and if taking CMF again would help or maybe thay want to do ACT. Remember you can use a cold cap.

Wish you the best.

Leslienva

I had five years of Tamoxifen for five years after my original diagnosis, along with Zolodex to shut down my ovaries.

Meow13

They are having good results with AI's I am on exemestane. Take care, let us know how it goes.

My oncodx was 34 and I chose no chemo. I am 3 years out but of course worried.

Leslienva

What did your oncologist recommend?

Meow13

Oh he wanted to do ACT or CMF. He thought my risk of reoccurance would go from 23% to maybe 10%.

He is the best onco in my area I felt funny declining but I just couldn't bring myself to do it. Probably because I saw Chemo backfire big time on a close friend of mine. She had ovarian cancer a rare form and died within months of the chemo the drug resistant tumors ballooned on her and killed her. She was so weak at the end of her treatments.

Also have you heard of symphony tests (70 genes) including mammoprint, I called them and they said my cancer tumor was too old to be useful in the tests. Check it out on something like knowyourbreastcancer.com.  They really look at tumors like yours in the intermediate range 29 is in the intermediate risk.

Leslienva

I've heard of Mammoprint but I don't think it was done. 29 is considered intermediate but at the higher range since high starts at 31. It's weird because high goes from 31 to 100! That's a pretty big range compared to the low and intermediate levels.

I'm watching an online series called The Truth about Cancer. It really slams chemo and how it usually does more harm than good. But It seems most of the women on these forums do it. I'm hoping I can get by with just one of the AIs instead of chemo. I'll see what they tell me tomorrow.

farmerjo

Oncotype 19 and told by BS no chemo. 

Giazuc

Oncotype 12 and told to not have chemo by my MO

Celkea

you should insist on the oncotype test. I did and enrolled in the rxponder trial. I got selected for tamoxifen alone arm. Feel free to reach out if you need any help

Scottiee1

oncotype 18 and told chemo not necessary

Mom2ABoy

Can anyone who has been given their oncotype explain how you got it, who authorized/offered the test, etc.? I have a MO and a BS, had the BRCA test, etc., but no one has mentioned oncotype testing and I'm about to start chemo. Who do I talk to about it? I'm seeing BS on Tuesday and MO on Wednesday. TIA.

Loral

My BS and MO suggested it, maybe because my PR-....Not sure I'll ask him today.

ktfelder

Mom2ABoy,

The oncotype test is only given to women with certain types of cancer, and only under certain circumstances.

My oncologist suggested the test, but said, "Only take the test if you are willing to NOT have chemo if your results are low." In other words, if I wanted to go ahead with chemo no matter what, then there was no reason to have the oncotype test.

roxyandtaze123

In 2007 I was diagnosed with ILC, Stage I. Oncotype 17. I decided not to do Chemo. Treatment was radiation and Tomoxifin. I have the best Oncologist whom I trust with my heart/soul. 2014, woke up one morning with severe pain in hip. Exray lead to CAT scan which lead to a diagnosis of metastatic breast cancer to bones and liver.

Just saying -- be careful with trusting the Oncotype test. Your cancer can definitely come back. Now, I am fighting for my life

Bev

doxie

Mom2ABoy,

For one, your tumor must be ER+ to be qualified for insurance coverage for the Oncotype. If the tumor is particularly large, lymph nodes are involved, and/or a grade of 3, your MO may strongly advise chemo regardless of Oncotype score. If you are HER2+, then generally you will be getting chemo anyway so the Oncotype is not needed. Also the HER+ status would likely put the score into high risk indicating the usefulness of chemo anyway. Almost everyone diagnosed triple negative is advised to do chemo and the Oncotype score would indicate this also.

Edited to add: So the Oncotype score is used to help determine the borderline cases of whether chemo would be beneficial or not. Sometimes it just muddies the water more, sometimes it is very helpful.

Leslienva

I ended up doing the chemo (my oncotype was 29) and even though it wasn't a walk in the park, I'm glad I did it. At least I can say I did what I could to prevent this disease from coming back.

Mom2ABoy

Thank you all so much for your answers! Now that little doubt I had in the back of my mind every time someone would mention their oncotype results is settled. The cancer is ER-, PR-, HER2+, all of which added up to a definitive recommendation to get chemotherapy! So the oncotype test was unnecessary for me. Best wishes to all.

Leslienva

Mom2aboy, If you're interested in saving your hair during chemo, come over to the cold capping forum. I had chemo November-January and kept my hair by using the cold cap procedure. It really works. But whatever you choose, good luck!

Srh242

mom2aboy: oncotype is only for hormone related breast cancers

Mom2ABoy

Thank you, Leslie and SRH, I appreciate both of your responses!

I am not good at tolerating cold, so I decided not to go the cold capping route. Partly because my particular chemo regimen is weekly, and long days to boot. The idea of sitting for two or three hours with ice on my head ... brrrr. I also didn't like the idea of even possibly reducing the effectiveness of the chemo in the head area, since I've got a particularly aggressive form of cancer and brain mets are not uncommon. But I totally respect other folks' decision to cold cap! I think it's fantastic that you have the opportunity to do it and the fortitude to stand the cold. I just know my limits!

I've learned earlier in this thread that the oncotype test was inappropriate for me for a couple of reasons, the cancer is hormone negative and her2 positive, both of which indicate that chemo is the way to go, so not only is the oncotype test pointless in my case, most likely my insurance wouldn't have paid for it. I'm so grateful for these forums, because every time I'd see something about "oncotype" I'd think about the fact that I didn't get that test and I'd worry a little bit that something was missing from my treatment plan! Thank you for helping me understand that it's okay.

Luttece

May I ask what was the exact size of your tumor??

I was also told I needed chemotherapy, ended up having radiation therapy