(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
Early on in creating Navya- Gitika and I met with the CEO of a private hospital in Mumbai exploring interest in Navya’s expert opinion services. He dismissed us offhand- saying he could email his friends ‘tak, tak, tak’ (Indian/Desi colloquialism for ‘instantly’) and get a response from them on any questions he had. Funnily enough – he was a radiologist who didn’t see the power of asynchronous and instantaneous collaboration on medical information. Today teleradiology is one of the largest medical services online.
A few years later, I’m impressed with how many ‘tak, tak, tak’ connections Navya has created for our patients across the world. We had 20 requests for consultations today, and we were able to get instantaneous reviews of many of the cases by international experts. Where one expert’s response wasn’t confident enough, we got two or three to confirm! Back to the patient in a day!
A well-connected CEO of a hospital may get his medical questions answered by specialists in a jiffy, but the true value of Navya on democratizing expert information across the world, instantaneously, is beautiful. It’s truly as easy as ‘tak, tak, tak’.
-Dr. Naresh Ramarajan
There are a lot of technologies out there. How many of these are touching a patient? A doctor? An expert? A family member?
Technology is the basis for results. Without data, decisions cannot be made. Without intuition and learning, a decision cannot be perfected. There are a lot of technologies: cognitive computing, artificial intelligence, natural language processing, machine learning, but that will not save a life. Don’t let anyone fool you into believing that a system can save a life. I’ve been a patient, a family member, a technologist committed to cancer care, and I can tell you that technology is insufficient and far from application-ready.
There is data everywhere. I’ve written about this before. But just as one does not need to know all the books written in this world to add two numbers, or be successful as an expert, there is a critical mass of knowledge that can be obtained and utilized effectively. So don’t be fooled with vastness of data that one might possess. Your grandma told you, it’s quality not quantity that matters. So one need not know all the medical textbooks and clinical trials in the world to be a cancer expert, but one must certainly know all the relevant practice changing trials and have experience being an expert.
Your grandma told you, it’s quality not quantity that matters.
Ultimately, it is intent. Why is a company building a technology. Why is a doctor providing online opinions. How credible is it. Does it matter that there is data on every single patient ever treated in my type of cancer, if my cancer is common or unique. Think hard. Think wise.
Intent matters. The use of technology with experts who want to enable patients – through a service that is only focused on patients and nothing else, requires very little buzzword technology, very focused data, a small number of true experts, a family of clinical analysts and patient advocates willing to serve patients as their own, and a large number of patients in a population that is struggling to get its basic needs met in cancer care.
Navya and Tata Memorial Centre in the Indian subcontinent, in 34 developing countries in Asia and Africa.
The patented Navya Expert System, the pioneering technology in evidence and experience-based treatment decision making and the one of a kind experts at Tata Memorial Centre.
Navya is committed to holding the hand of every cancer patient and lifting them to the same pedestal as everyone else in the world: expert cancer care for all.
Navya is the only clinically validated end-to-end decision system in cancer treatment decision making. The Navya system is patented and the first innovator in this field. Use Navya at navyanetwork.com/tmh
You, your family, your friend, will always have us no matter the cancer to conquer or access to technology and data. Access is always enabled through us, and our system, service, and experts empower for real, in a format that you can consume from home!