NEW Oncotype Dx Roll Call Thread
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Hi kaaadams,
Maybe there is a chance insurance could pay for Mammaprint with Blueprint. I've seen somewhere in the forum that patients called to the Agendia laboratory and price appeared not that high. I would be scared in case of high MammaPrint score honestly.
You probably know that Ki 40% means that tumor cells should be killed by chemo efficiently. In addition I see that Tailor X study refers to Oncotype Dx, not to RSPC. The NCCN guide p.12 and 57 says you can proceed with or without chemo with your score depending on individual clinical and pathology characteristics. I understand clinicians should consider Grade, Ki%, tumor size, hystological type. I would check also if LVI (lymphovascular invasion) was identified in the histopathology report.
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Hi Lucky44,
I am not eligible for oncotype coverage in Canada, due to my one positive node, I wonder why you are not eligible, sounds you are node negative.
Node negative and ER positive, Her2 negative brings big chance of low chemo benefit, I am sorry you already suffered from chemo, fortunately you then found you don't need. I don't know if you are using a private insurance company, I read some place in that case you can discuss with your insure company, if you decide to spare chemo, then insurance company pays you back oncotype fee, cause chemo is much more expensive. For me, it is CAD 4200.
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kaaadams,
I guess you are 50 above, so oncotype score 24 is a gray area for that age.
For me, my MO said 5 % chemo benefit, I don't know what score oncotype will get back, sounds also around 25 if chemo benefit is around 5%. But I have one positive node, I guess my score will be at least higher than 35, which means chemo benefit maybe around 10%,
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Cathy, having a positive node will not increase your Oncotype score - the score is based on an assessment of 21 genes within the tumor itself, and nodal involvement isn't factored into the score.
What changes being node positive is that the recurrence risks associated with the Oncotype scores are different (higher) than the recurrence risks for those who are node negative. Here is information that I pulled from the Genomic Health website. I put together into one chart the information they provided about an Oncotype 10 score for node negative and an Oncotype 10 score for node positive:
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Beesie,
I've learned so much from you!
Then what being node positive will influence? I guess the chemo regimen, right? MO said, the light regimen such as TC does not work for me. But I read, a few patients face the same issues, they finally pick up TC 4 rounds only. Do you know, if TC at least can work a bit, I know not effective as ACT. Just in case, I got a low score, I can ask for TC.
NCCN guideline states chemo is recommended, I guess that is the reason Canadian government insurance does not cover oncotype test.
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Cathy, it's BC, not Canada. The rules on what tests are and aren't covered are set by the provinces. That said, I believe the Ontario rule is the same. The Oncotype test is paid for if it may influence or change the treatment protocol. If based on treatment guidelines it's known that chemo won't be or will be recommended regardless of the Oncotype score, then Ontario won't pay for it. Probably similar in BC.
Being node positive influences the metastatic recurrence risk, hence the 3% risk for an Oncotype 10 score for node negative vs. a 12% risk for an Oncotype 10 score for node positive. The Genomic Health site doesn't have any other examples, but if you move up to an Oncotype score of 20, it means a recommendation of no chemo for someone who is node negative but I suspect that the node positive chart would indicate that chemo would be beneficial.
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Beesie--Great information! When I had my Oncotype testing performed in early 2013, there were no results given for node positive patients. My score was 6 but I had one positive node and was pre-menopausal. I was ER+/PR+/HER2+. My MO indicated that my Oncotype score really wasn't proven for women in my category. I opted out of chemo and radiation but did Herceptin for one year, had a hysterctomy, and have been taking Letrozole for over 6 years now. I have been doing well and am happy with the decisions I made as they were right for me. In the end, YOU (the breast cancer patient) are the one who has to live with your decisions; so although we should consider all advice given to us by medical professionals, YOU need to make the decision that is right for YOU.
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Beesie,
Yes, there is the chart describes chemo benefit, and I found being score 42 means 10% chemo benefit. I hope they can give a table clearly indicates the score vs. the chemo benefit.
So the 21 gene test is to test how cells will react to chemo, thus chemo benefit is what we shall look at. Other factors, such as some place mentioned AI will bring you additional 2 or 3 percentage, is out of scope at this stage, cause chemo is the first step of the whole after surgery combo.
So next appointment, I got to focus on: 1. Chemo benefit based on oncotype dx and MO's opinion; 2. Chemo regimen, especially if light dose works in case back a low score; 3. If chemo, the anti-nausea medication.
Then one more point, if this test is targeted at chemo benefit, so basically all the cancer type can use this for the information needed, however chemo benefit will be influenced by other therapies. As a patient, even chem is a definitely go, knowing its potential benefit definitely help go through the hard journey, specially for me, that is. Whether insurance covers or not, based on the treatment guideline, though individual patient makes ones own decision.
Now next, study the recurrence rate, the figure my MO gave me is pretty low, will have more questions.
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I was diagnosed in 2012. Had a Oncotype score of 22. Oncologist said no chemo (high ER/PR scores, no lymph node involvement, small tumor, age 57) A months later he suggested the Mammoprint test (fairly new at the time) I balked and decided it was time to move on (this second test was suggested 6 months after initial surgery and after I had completed radiation) Decided that even if the other test showed a high risk, starting chemo that long after surgery would likely have no impact. The TaylorDX study had not been completed. So I spent a good deal of time second guessing my decision. Flash forward five years, the results for the TaylorDX are in and I would not have been recommended for chemo with that score. Another thing to remember is that Oncotype is the only test recognized for its predictive value of the benefit of chemo. Mammoprint does not predict if chemo would be of any benefit.
So I’m 6.5 years passed diagnosis. Still on AI. No guarantees, but I’m happy I chose to walk away from chemo. It’s really a personal decision. My oncologist said he was okay either way, that everything was my choice.
Best to those making this tough decision.
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Oncotype score: 0 (3-7% chance of recurrence).
The plan is to take anastrozole for 5 yrs (2 more years to go).0 -
Cathy, the Oncotype score is not just about chemo benefit. The score is calculated based on an assessment of the genetic make-up of the tumor, and first and foremost provides information about metastatic recurrence risk, and then the likely benefit of chemo and how effective endocrine therapy may be.
From the Genomic Health website: https://www.oncotypeiq.com/en-CA/breast-cancer/healthcare-professionals/oncotype-dx-breast-recurrence-score/about-the-test?gclid=EAIaIQobChMIm7Slotyf5QIVDZ6fCh3Y7wp2EAAYASAAEgI7m_D_BwE
"The results are presented as a quantitative score, based on a continuous scale from 0-100. The score reflects individual tumour biology—the higher the score, the higher the risk of distant recurrence and the higher the likelihood of chemotherapy benefit are for that patient.2 The Breast Recurrence Score result can serve as a reference point for all members of the treatment team and can make discussing treatment options with your patients easier and more efficient.
The Breast Recurrence Score report also provides a quantitative ER score by RT-PCR to help assess the magnitude of hormonal therapy benefit13 and other supporting information (such as PR and HER2 scores). The test can provide insight into specific tumour biology, risk assessment and can inform treatment options."
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cathy67, my onco score was 48. Recurrence rate is 37% . I did surgery, chemo, rads and on AI presently. I think that minimum benefit of chemo is an average of 15% , but l was told by the pathologist who read my tissue slides that I had closer to a 24% absolute benefit. I think that is pretty good and shows that the higher your score, the bigger the benefit of chemo. Best of luck to you.
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Hi UpstateNYer,
Thanks for the post. Yes, 48 is a fairly big score, but thinking of the fact that chemo can help reduce a lot, and your chemo is quite easy to get through. That is why I want to get this score, but not only rely on the average chemo benefit that MO provides.
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Thanks Beesie,
Now i am worried if my ER finally turns out not that strong in oncotype report, in my pathology report, it is 8 out of 8.
My post op report has too many bad news, compared to the biopsy report, really gave me big shock.
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hi cathy67, my chemo was for 4 cycles, but was very difficult for me, especially the first 2 cycles. Had horrible flu like body aches, migraine headaches, nausea, diarrhea, etc. Lasted for several days each cycle. But, my MO cut my dosage 10% for last 2 cycles at my request and it was at least tolerable compared to the first 2. I don't mean to scare you, but only to give you information on being able to ask MO to cut dosage if you experience bad se's. Best of luck to you. Keep us posted on your progress/ decision. Pat.
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Just found out that my Oncotype score is 18
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UpstateNYer,
Everybody has different feeling, like pregnancy. Mine will be ACT, much hard than your TC 4 rounds, but the chemo benefit is only 15%, that is my MO's estimation. So waiting for my score, hopefully it backs with under 5% chemo benefit, then I will opt for no, though distant recurrent rate won't be low based on my node positive status, but chemo cannot change the baseline recurrent rate, we shall only look at benefit at this stage.
Thanks!
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hi cathy67, So even though you are node positive, you will opt out of chemo if onco score is low? If your score is higher, your absolute benefit is much more likely to be higher than the "cookie cutter" average of 15% . Hoping your onco score will be low. I wonder why your MO is telling you that you possibly need ACT before getting onco results. My situation was just the opposite. Both MO and SO told me I had a low chance of needing chemo and both were shocked when my score of 48 came in (even though my tumor was a grade 3) . I was about to go in for 3rd surgery to clear some residual DCIS when score came in. I had to forgo that final surgery to begin chemo the following week. So, I had lumpectomy with IORT radiation, second lumpectomy to clear margins, chemo, third surgery, then 16 radiation txts. Finished with rads Oct. 2nd. I am taking anastrozole now. Hope your treatments go smoothly and successfully. I am feeling pretty good after all of that and am happy that I did everything I could to beat this beast. Take good care and keep in touch. Pat
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UpstateNYer,
Sorry to hear your hard journey, every journey is different, but all tough!
I am in Canada, we have standard process, my situation with one positive node is recommended chemo directly, nocotype dx is only funded for those under 2mm positive node patents, mine is 3mm. So MO just followed the guideline, I asked him this question cause I've learned a lot, I asked, if forget insurance issue, do you think I shall go for this test, he said, he would 100% recommend the test. So I paid myself for the test.
MO said, 5% is worth to do for chemo from their view, for a health patient. But he also said, TC does not work for me.
Get a low score is a good news, however, an unexpected high score is more valuable, especially for patients categorized into low risk group which is supposed to have hormone only.
Thanks for your caring.
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hi cathy67, Yes, I certainly do care. Please let me know when you receive your onco score. Yes, so important to have all the information you can in this journey. I think it stinks that you had to pay for this test. I wish you only the best. Hugs. Pat
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Hi CathyV - there are others with positive nodes that did not do chemo, I'm one of them. If you qualify for the following, an Oncotype DX test is still relevant: ER+, PR+, HER2-, tumor less than 2cm, 1-3 positive nodes. Here are some forums of others with positive nodes and what they did... I found these forums really helpful for insisting with my doctors that I get the Oncotype test. And when I did, it came out with a score (21) that said there was no benefit to chemo, so I did not do chemo (my oncologist literally said he would no longer recommend chemo "due to the extra toxicity it would introduce, for no benefit". And I JUST got my one-year out mammogram and it came back completely clear! Nice to get the letter saying they do not detect any cancer, and see you next year.
Anyways, here are some threads I found helpful while making my decisions on what to do given the positive nodes!
https://community.breastcancer.org/forum/71/topics/865253?page=2#idx_52
https://community.breastcancer.org/forum/23/topics/768047?page=4#top
https://community.breastcancer.org/forum/145/topics/858032?page=1#idx_23
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PebblesV,
Thanks for the links. There are tons of information here, I am studying every day, thanks ladies!
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Just got my score yesterday...42, which was completely unexpected by my doctors. It has thrown me back into the whirlwind of desperately researching chemo now, instead of rads, and trying to make all kinds of decisions and appointments again before it starts, all during an incredibly busy time at work. So I'm exhausted before I even begin...
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karen2019, You will be in my prayers. The very same thing happened to me. Feel free to PM me if you have any questions about chemo, etc.
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Karen 2019 have your doctor get your RSPC percent by having him log into the Genomic, Oncotype DX web site. Your RS score along with your pathology information gives you a different recurrence score. My RS was 32 with a recurrence percent of 22, my RSPC recurrence was 6%! I don't know the size of your tumor but I bet your recurrence percent comes down. My recurrence percent of 6% is about a score of 11. I also put the facts of my pathology report and used the Magee Equations, all my scores were in the low teens. The Magee Equations can be done online.
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Hi cathy67, I'm sorry I didn't reply before. We don't have any government insurance coverage in my country at all. I have insurance in the private company and their policy states they don't cover any procedures performed outside of the country. Only after the 1st cycle of chemo I realized how much I need to know my Oncotype score. I see that many people don't suffer from chemo that much, but for me it was like a 4-day agony. I had sever knee pain and back pain as well within approximately 1 month after infusion. Just to note that I'm not skinny, but quite slim woman. Maybe I was just overdosed or premedication didn't work well for me, I'm not sure really. My oncologist explained me that just 4 cycles of AC is not efficient at all without further infusions of paclitaxel. He didn't suggest me 4 TC rounds for some reason. I was afraid that I would definitely have some long-term consequences with this kind of my reaction and 6-months duration of ACT chemo. My Oncotype score showed low risk, so further chemo was cancelled.
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Hi Lucky44,
I don't understand why your doctor said TC does not work for you. If you read treatment guideline and the chemo protocol, ACT is for node positive metastasis cancer. But why 40 nodes removed, right now sentinel node biopsy is the standard. I have one positive 3mm sentinel node, since we no longer performed underarm dissection, no way to know any positive nodes underarm.
We must learn then we can ask questions, MO just follows the guideline. For me, Oncotype is not part of my procedure, so he did not ask. But once I asked, he said 100% recommend, then I learned so many node positive patients also go for this.
As for chemo unit does, I also noticed that is standard, the protocol did not state the mapping weigh of the patient. I got to ask for MO this.
Thanks for this.
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Updates.
As I said previously, I paid myself to order this test, then I found money has not been charged for almost two weeks. I just called MO's front desk to help double check everything is on the right track. She back saying that, MO already got my report, however she refused to let me know the score, this is the policy here. And she said, MO said, nothing urgent and there is no way to give me an earlier appointment, so still November 6 is the appointment date. My god, how to spend through these days. Anyway, I am well prepared for a super high score.
Thanks!
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Cathy, If MO feels not urgent, then I am thinking your score must be low. When my surgeon got my onco of 48, she got me in to see MO that same day and I started chemo the following week. Keeping my fingers crossed for you. Take care. Pat💞
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Pat,
Nowadays, cancer is not urgent, unless late stage finding. My CT scan also takes one month to wait, MO said there is two percent of remote metastasis right now.
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