No treatment 1 1/2 months after surgery?!

That's a REALLY low Oncotype score. My score was 17, mixed IDC/ILC, one positive node, age 68 at the time, and my oncologist said no chemo.

Eric, of course your mother should seek a second opinion if she is worried about the treatment plan. But if only you are worried, that is something for you to deal with, hopefully on your own without concerning your mother.

With a 5 Oncotype score, I can't imagine any MO recommending or even agreeing to chemo. One of the studies used to develop the Oncotype scores/recurrence risks for node positive patients actually shows that at a 5 score, 5-year recurrence rates & mortality are worse for those who have chemo than those who don't. While the risk of very serious side effects from chemo are low, they are not zero, and with a 5 score, it appears that those risks may outweigh the benefits. That doesn't mean that your mother might not experience a metastatic recurrence - as the Oncotype score indicates, she faces a 10% risk at 10 years. But this is saying that her risk level is unlikely to be much lower if she has chemo, and chemo will expose her to new and different risks that negate any small benefit she might get.

Shetland, the TailorX study was specific to node negative Oncotype scores - it does not apply to node positive. At this point there is no age break (50 and below vs. above 50) for node positive recurrence risk estimates. Similarly, I believe (but am not 100% certain) that the RSPC model was also only for node negative Oncotype scores. And as an FYI, since earlier this year RSPC has been replaced by RSClin, which was presented at ASCO late last year, and is now available on-line to MOs. It is very similar to the RSPC model, but was developed based on a larger and more recent sample of patients.

The MO didn't give your mother her Oncotype report? That is disgraceful. It is her information and it should not be held from her. As far as I know, most patients do receive their reports.

The chart I posted used to be in the report - I don't know if it currently still is - but it is still on the Oncotype website: (Click on "Node Positive" in the Report Guide - this is the 2nd chart.)

https://www.oncotypeiq.com/en-US/breast-cancer/healthcare-professionals/oncotype-dx-breast-recurrence-score/interpreting-the-results

Your questions would certainly be valid if your mother's score fell in the intermediate range (11- 25) but a 5 score is very low and strongly suggests that Tamoxifen will be much more beneficial than chemo.

I need to say a few things on Eric's behalf. If I am off base, please correct me, Eric. I am the last one to want controversy and criticism here, so please nobody think what I say is personal or unkind.

I sense a subtle thread of criticism of Eric for being involved in his mother's diagnosis and treatment plan. But he tells us that his mother welcomes his input and I personally see no red flags to say this in not so. We all probably see things through the filter of our own experiences. There may be members here who had a bad experience with a family member interfering or not respecting them. There are also members here, like me, whose input was welcome and helpful to a relative.

First, regarding trusting the doctor, it is not a virtue in and of itself to trust your doctor. It is good to trust your doctor IF the doctor is worthy of trust. How is a new patient to know? How is she to know if she should worry about the treatment plan or not? There are some incompetent or uncaring oncologists out there and at it is appropriate to fact-check the doctor, particularly at the beginning, in order to make sure the doctor is worthy of trust. Some people are happy to have a family member or friend who will take on the job of checking up on the new doctor's advice. For example, at my relative's request I accompanied her to the first oncologist appointment. While it was obvious to her that the doctor's attitude was disrespectful, I was able to catch both factual errors and deviations from standard of care on this doctor's part, and together we sought better care. And I also caught something on the surgery consent form that called for some discussion with the surgeon and resulted in a change being made. I knew that quality of life is my relative's priority, and it turned out this was a material issue. My relative was glad for my involvement.

Second, regarding Eric's "anxiety". Some have suggested that he seek help for his anxiety about his mother's situation. I think he IS seeking help by coming here where people can point him to the literature that will help him understand the diagnosis and treatment and therefore to gain confidence that his mother is getting good care, or else discuss with her some reasons for seeking a second opinion. This is shown in his last sentence above he says, "However I'm glad to know that low of an oncotype shouldn't be something that requires much other second opinion."

Third, regarding whether is is helpful for patients to be involved in their care vs. simply follow instructions, I submit that it is important to be involved (which can include delegating some research to a friend or family member). From the article I cite below: "Research compiled by organizations such as the Agency for Healthcare Research and Quality (AHRQ) indicates that when patients are engaged in their care, it can lead to measurable improvements in safety and quality." This article has links to references. It also says that medical professionals should "Welcome family interest in the patient's care." I remember reading research that said two factors which improve outcomes for cancer patients are being an involved patient, and being treated at a major cancer center. I apologize for not having the citation handy; am looking for it and will add it here when I find it.

I hope that the reason we have not heard from Eric is not that he felt criticized for looking out for someone he loves. Eric, I think you understand not to it pass along worries to your mom, but to discuss with her any information you find that may be material to her successfully treating the cancer. I think you are capable of respecting your mom as an adult and being a good support to her.

https://www.myamericannurse.com/the-patient-engagement-imperative/

Shetland,

All good points re:eric. One thing that he did mention, though not initially, was that his mother does not speak English well so he must act as an interpreter. That in itself changes his level of involvement from being supportive to being necessary. I think some members did not see that he mentioned this at some point but that is a significant reason for his involvement. It really changed my understanding of his situation as I grew up in a household where my mother had to act as interpreter for my grandmother . Due to her limited English, Eric and his sister need to have a higher level of involvement with their mother’s care and tx