(Continued from previous post here)
We struggled with how to let my dad know about this upstaging. I intensely felt the need to protect him from bad news and at the same time the need for disclosure to move ahead. But I couldn’t move past the diagnosis and into treatment planning until he knew. We waited for his appointment that evening and then broke the news to him.
Perhaps overwhelmed by this unforeseen information, I dropped my guard. The urologist recommended surveillance to see if the cancer cells at the positive margins would grow. We did not start any anti cancer therapies. We were not even referred to see a radiation oncologist.
For a high-grade tumor that was outside the capsule of the prostate already, this approach should not have passed the smell test. But all the energy I had put into researching my options were now focused on helping dad recover from the surgery. We simply took the urologist at his word and waited. I didn’t even lookup my online medical references.
No surprise to anyone but us, the tumor markers quickly started inching up and doubling. Imaging showed that the recurrence was not spread in the body, and was still local. Alarmed, I went back to my information-first mode, and read every study on local salvage therapies. I was surprised to find out that early salvage radiation and hormones immediately after surgery were already becoming standard.
I discovered that in most other locally advanced tumors with a high grade, positive margins aren’t simply ignored, rather are treated with repeat surgery or adjuvant therapies!
Although reeling for lost time, I was also exceptionally thorough this time. We went through every possible radiation and hormone therapy option – to radiate the pelvic nodes or not, use protons or photons, what dose, to use short course or long course hormones or no hormones.
I read every study and guideline that was applicable. I spoke with every expert in the area I knew at UCLA, Stanford and nationally. I wanted to be certain that I was making a decision with the best information at hand.
After extensive discussions with my father on his preferences, and discussions with his radiation oncologist, we embarked on round two of beating his prostate tumor. My dad was fully aware of his diagnosis, his options, and his choice of therapy. The clarity of that knowledge and reassurance that we were doing everything possible gave us so much strength. Instead of being victims to the process and the disease, and have something to hide from and be protected from, we were open, clear, calm and as much in control as we could be.
That was almost 5 years ago. Luckily, my dad continues to have his 3 month check-ups that are coming back clear. He is not out of the window of recurrence just yet, but it is safe to say we are getting there.
Not all stories have happy endings. Despite being treated at the best cancer center in America, my aunt succumbed to inflammatory breast cancer in 2009. She was diagnosed the same year as my father, and we went through the same exhaustive search for therapies and options that we did with my father. When she went on hospice, she knew she had exhausted every option medical science could offer us at the time. I still carry that little piece of reassurance inside me today.
While my physicians have my best interests in mind, they are limited in ferocity as this is not their battle to fight. It is mine.
I see a diagnosis of cancer for what it is now. Without knowing the name of my enemy, I cede power of fighting to others. While my physicians have my best interests in mind, they are limited in ferocity as this is not their battle to fight. It is mine. Staying informed on the diagnosis, science behind the options, and the experience of true experts in the field is the only reassurance I can have that the best possible decision has been made.
-Dr. Naresh Ramarajan
I’ve been told the events of the first time so many times, that I have a vivid memory of it now. My fathers mother, Bhuma, succumbed to a recurrent brain tumor that kept growing in the small confinement of her skull. When she was first admitted to a small hospital in Massachusetts, confused after a fall, my father was not at her side. My aunt had driven her to the hospital, and first received the news of impending brain surgery. But without my father around, my aunt couldn’t let my grandmother know. Bhuma was a woman who was in exquisite control of her world and those around her. To know that she was losing that control in a strange land would unravel her deeply, thought my aunt. Could she undergo surgery without knowing why?
Although common in South Asia and other parts of the world, this idea of keeping a diagnosis secret from the patient, especially one who needed a surgery, was foreign to the surgeon. As the story goes, my aunt stood between the surgeon and my grandma, and refused to translate a word of his English into her Tamil. The standoff continued until my father got there the next day.
Once my father arrived, my aunt gave up her shield to him. The energy of my family was spent in understanding the prognosis and explaining it to my grandmother. It did not occur to them to explore what treatments to do and in which sequence. It was 1989, and the trust in the surgeon was much higher than the trust in the patient.
After much reassurance from the surgeon, and not much understanding, my family consented to neurosurgery. The tumor was incompletely removed, and treated almost too conservatively. It came back again and again until there was no radiation or surgery that would stay it’s course.
I often wonder what Bhuma thought of all the medical decisions she relegated to her surgeon alone, and what sense of acceptance and calm allowed her to continue through the storm of medical care that pursued her the rest of her life. For a woman who consistently went out of her way to ensure that even her neighbors had their lives in order, the loss of autonomy and empowerment might have been frightening.
I often wonder what Bhuma thought of all the medical decisions she relegated to her surgeon alone.
Many years later, cancer found my family again. Freshly graduated from Stanford Medical School and an intern at UCLA, I felt ready to assume decision making for my father. When we were initially debating surgery vs radiation for early prostate cancer, I did exhaustive searches of the published research and expert reviews. I understood the side effects and the tradeoffs extremely well. My father became integral to the decision making. We made a calculated choice to go for surgery. My father strongly preferred to have the cancer out, and to have radiation available as a salvage option. The evidence and guidelines supported either choice, although each expert still had their preference in the matter. We were confident we had made the right choice.
So when my mother called me with her early online access to dad’s pathology report – I was saddened and grateful at the same time. The tumor was more aggressive than we thought, a Gleason score 9 instead of a 6, was not early and limited to the prostate but had invaded the surrounding tissues, and the margins were positive. There was still some of that cancer left behind.
We certainly would not have known this information without a surgery. My dad was in the small percentage of patients where the preoperative imaging and biopsies had not picked up the full extent of the disease. It was a lucky alignment of our decision and hindsight.
-Dr. Naresh Ramarajan
A friend of mine reached out to me to check in on what to do after a mastectomy. She is in her early twenties, and just prior to graduating from college had been struck with invasive breast cancer without a predisposing family history.
What is the benefit of increasing survival over 10 years by 4%? Navya’s risk estimates projected a 3-8% chance of reducing mortality in 10 years by adding chemotherapy to hormones. But adding chemo came with real risks – infertility, premature ovarian failure, and a small but real risk of infections and major side effects.
How does one make these real-life trade offs?
Data. Expertise. Personal values. These drive every decision that Navya informs.
Ultimately, we start with good data. We don’t skip any steps. We get individualized risk models from the evidence to generate a range of probabilities that assign realistic numbers to various events. Navya’s evidence engine allows us to generate these estimates in real time with the best available data. We then piece it together with what the patient wants given this playing field. We think this is the strongest predictor of whether a person will ultimately be happy with their decision or not. Finally, we ask several experts in the field – to get the best eyes possible to review the facts and the decisions in real time.
Ultimately 4% over 10 years was still enough for someone in their early 20s. The long tail of Breast Cancer recurrences that happen late were enough to move her to brace for chemotherapy.
Data. Expertise. Personal values. These drive every decision that Navya informs. It’s eye opening no matter how many times or how many people we empower in the process.
-Dr. Naresh Ramarajan
Convenience matters, as does commitment to access. Access to expert cancer care.
Three things compelled me to write this today. One, each time I think of decision making in cancer care, be it for a cancer patient or his or her family, or an oncologist, I fall back to the basics of evidence (applicable clinical trials), experience (treating thousands of complex or rare cases), and experts (true experts, of which there are only a handful, do not be fooled). Boil this down further, and you are left to the ability to identify and use the few really applicable high quality clinical trials (evidence) and consult the experts at tertiary care cancer centers (true experts), especially for nuanced decision making (experience treating the uncommon). Why then is there the talk of digesting millions of records when only a few trials are high quality and it is the applicability that matters, not the large volumes of any and all data? (I don’t understand, and hence I write…) When there are only a handful of true experts and only their experience matters, then why are we spinning our wheels on doing anything but increasing access to their expertise? (Beats me, when there’s blatant publicity on hospitals without any bearings to whether it’s a peer-recognized world class institute…)
This brings me to my point #2. I’ve been helping a friend of a friend get a pathology review from a leading hospital, for her sister’s rare tumor. I am a sister. I know her fight and will fight with her. Despite my fantastic everything, this person was stuck in the logistics of figuring out how to send a sample, to whom, how, packaging difficulties, courier challenges, unclear billing instructions, completing online forms, invoking treating doctors for telecommunications, and most importantly finding a person on the other end to just talk to and make this work! Wait, wait, wait — is what she got at each instance, and if you’ve ever waited for a month to just send a sample and expect to wait a month to receive a report, you know what I mean (especially if the cancer-word is in play).
Why are we spinning our wheels on doing anything but increasing access to their expertise?
So, my third point: operations matters. A one day turnaround that my analysts strive to deliver, using simple and powerful tools to expedite the opinion of true experts (handful in the world, in India, in the US, in the world…), really matters. Leveraging only the applicable clinical trials and the nuanced machine learning from expert opinions on complex cases, is all that is needed to make intelligent decisions. The commitment to make this available to you – really matters.
We offer that, because we want to, because we know what it feels like to want it and not have it – but need it; and because we have worked really hard to use teamwork, clinical informatics and machine learning, and relevant high quality data, to deliver it. When we work with only the true experts, we know that no other service can do what we do, and it is our duty to bring true expertise to everyone, conveniently and quickly. And hence, I confidently ask that everyone in need of an expert opinion, an expert treatment decision in cancer care, please reach out to Navya online. 8,000 patients from 42 countries, are testimony to our commitment to convenience and access to expert cancer care.
Online Expert Opinion: navyanetwork.com/tmh
Tata Trusts: tatatrusts.org
Tata Memorial Center: tmc.gov.in