(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
TMC NCG Online – Navya Expert Opinion Service empowers patients with critical information within 24 hours enabling families to make robust decisions in cancer care with adequate inputs from oncologists at Tata Memorial Centre and National Cancer Grid (including cancer centers like AIIMS, Kidwai, Max Hospital, etc.). This service, available at www.navya.care, allows patients to upload their reports and get a response from world renowned experts.
Families seek to vet treatment plans with experts but it can be challenging as doctors often recommend the treatment start immediately to prevent cancer from advancing. Balancing the need to act quickly while ensuring the decision is made with all relevant inputs is when Navya’s Online Expert Opinion Service becomes a powerful ally.
While diagnosing the presence of cancer can be relatively straightforward, treatment is highly specialized and the number of experts experienced in managing complex cases is very few. Many cancers are curable or can be managed for a number of years if diagnosed early and treated appropriately. Choosing the right therapy can be the difference between the best possible outcome and failed treatment. Patients are able to receive the best possible treatment opinion which includes what therapy to choose (surgery, chemotherapy, radiotherapy or immunotherapy) as well as dosage, duration, side effects and other details pertinent to the treatment. The detailed report, that answers all questions asked by the patient in language that is simple to understand, can then be shared with the local oncologist to proceed with the treatment locally.
Maya Fonseca, 27, of Goa had a situation where following a routine checkup and follow up tests, her mother was diagnosed with stage IV cancer. The tests administered at the time were inconclusive as to the origin of the cancer. A slide review was recommended which would have taken 14 days but the treating oncologist advised that chemotherapy be commenced immediately. Maya and her family were understandably unsure of how and when to proceed with treatment. She reached out to Navya Online Expert Opinion Service and uploaded the reports. Navya’s patient advocate called her, got a thorough understanding of the case and noted all the questions that she wanted to ask the expert. The medical history along with evidence based treatment options were presented to an expert using Navya’s patented system for an opinion. The experts at Tata Memorial Centre were able to conclude that the medical reports and clinical history were consistent with cancer of the ovaries and chemotherapy was the next step followed by surgery. On receiving the expert’s response, a report was created that answered all questions asked by the patient in language that was simple to understand. With the treatment opinion that included the chemotherapy, dosage and frequency, Maya’s mother was able to proceed with immediate treatment safe in the knowledge that she was making the right decision.
Urging families of cancer patients, Gitika Srivastava, Founder of Navya, says: “Most people who have had any experience with cancer are aware that given time and logistical constraints, it is not always feasible to go to tertiary care centers in metropolitan cities at each treatment decision point. Given the importance of treatment decisions in yielding the best possible outcomes, we would urge everyone to get an expert opinion through TMC NCG Online. We understand the anxiety in knowing what to do as quickly as possible, and hence have strived to ensure that we facilitate the opinion from the experts within 24 hours of getting all necessary medical reports. When making a decision on treatment, you and your oncologist can be assured that the opinion rests on the experience of world renowned cancer experts and follows evidence based protocols best suited to your specific case.”
Online Expert Opinion: Navya.Care
First, I will define digital health/healthtech/health 2.0 as products and services that rely on using the Internet and digital data (versus paper or physical contact/in-person consultations), to better the overall physical or mental health of an individual. This does not include medical devices or pharmaceutical.
The major trends for 2017 include using information technology and Internet, of which mobile is a significant component, to do the tasks that patients and physicians or other service providers would ordinarily do, but at a faster, cheaper, and larger scale i.e. to reach a global network without incurring added costs of time and money. Unlike in other industries, healthcare does not allow immediate and ground-breaking leaps in the use of information technology to do new and powerful things that were otherwise not already possible, for example, offering a treatment or diagnosing using the Internet.
Offering a treatment or diagnosing using the Internet.
A few years ago, as an early stage startup investor in Boston, I came across technologies that proposed to use video games to treat Attention Deficit Disorder, or rely on patterns in mobile phone usage to diagnose and manage depression, or leverage the iPhone camera to send images to ophthalmologists to diagnose eye infections in rural India, or attach monitors to cell phones as an electrocardiogram device.
These innovations tread on diagnosing and treating, and must be tempered by regulation and clinical trial validations before adopted use. This is beyond what digital health/healthtech/health 2.0 can reasonably promise to deliver, as the intricacies of the healthcare and legal landscape intervene.
The success of such innovations, measured by adoption and use in the clinical world, is yet to be seen.
However, leveraging technology to improve performance of products and services that already exist, and that improve healthcare delivery as it exists today, is a fair game for digital health/healthtech/health 2.0. This can be boiled down to some key trends.
Trend #3 – Keeping track with the mobile phone
A lot of physical barriers of time and place are broken by the mobile phone today. The mobile phone basically goes wherever you go, no matter where the data or the person who matter to you, resides.
The mobile allows workflow optimizations, such as scheduling and reminders for doctor’s visits, prescription pickup, taking medications, or accessing your health records when you’re on the go.
Secure access to data on the cloud, and on-the-go use of the mobile phone will dominate how patients manage their health matters on a day to day basis. Most likely, there will be more free services and mobile apps that enable such conveniences for patients, and make the experience of interaction with doctors and providers more pleasant and convenient.
Monetization of such conveniences has traditionally been done by collection and sale of data, which in healthcare is valuable (for pharmaceutical companies) but protected by privacy laws (as it should be).
However, when service providers such as a doctor’s office allows you the convenience to complete the medical form on your mobile while you’re waiting in the lobby, driving to the doctor’s office in your cab, collects feedback via a quick alert to your phone on your way out, or allows scheduling to happen via a chat message versus waiting on the phone listening to Muzak for many minutes, there is significant arbitrage of time and money for convenience and pleasantness of experience.
Mobile apps will enable such experiences and enrich the patient, physician, and service providers with time and workflow optimizations. Mobile apps offering several small conveniences in the logistics of healthcare delivery and consumption, will be an enabling trend in the coming years.
– Gitika Srivastava
Online Expert Opinion: Navya.Care
Since 2015, the service has recommended evidence and experience based treatment protocols for children that can give them the best possible outcomes.
MUMBAI, India – Feb. 15, 2017: In keeping with their efforts of democratising access to their significant expertise for patients across the country, Tata Memorial Centre (TMC) reviewed the impact of their online service in helping pediatric patients on the occasion of International Childhood Cancer day. TMC NCG Online – Navya Expert Opinion Service (available at www.navya.care) provides critical treatment opinions to parents and caregivers of children with cancer. The expert opinion helps them validate or discuss an evidence based change in treatment plan with their treating oncologists. For pediatric patients, choosing the right therapy vetted by an expert, can be the difference between cure and failed treatment.
“If a child is diagnosed early and treated appropriately, 80% of cases should lead to cure. However we are seeing many cases where parents are bringing children to us as a last resort after expensive and failed treatments” said Dr Shripad Banavali, Head of Department, Medical Oncology at Tata Memorial Hospital, Mumbai. “If they had reached out to us online through TMC NCG Navya and followed our opinion, the situation could have been better. We are also finding cases where aggressive chemotherapies are being prescribed that are not suitable for children. This is partially because of the absence of pediatric oncology expertise.”
Pediatric patients are treated differently with doses and regimens than adults, and there are only a limited number of cancer experts who specialize in pediatrics. TMC NCG Online makes it possible for patients to get the advice of specialized pediatric experts at TMC while often continuing the treatment locally. In cases where expertise or treatments that are not available locally are required, patients are advised to visit accessible expert care centres, such as those in the National Cancer Grid (NCG).
“We have been able to provide appropriate treatment recommendation to many patients in small towns where access to specialized oncology centers is sparse” continued Dr Banavali.“ A lot of these families would either have to travel significant distances or worse still proceed with suboptimal treatments leading to a reduced probability of cure.”
Pediatric oncology is a specialized expertise and often unavailable everywhere. This leads to parents approaching oncologists and physicians who lack the experience and expertise needed in treating children. In many such cases, treatment plans are followed that are not beneficial and in some cases harmful to the patient.
TMC NCG Online has also received cases where parents are reaching out to validate the need for expensive therapies. In one such case of a three month old baby boy, a reputed private hospital had recommended an expensive robotic surgery. The experts at TMC clarified that conventional surgery would be sufficient and would avoid wait time and expense of robotic surgery.
Says Dr Tushar Vora, a nationally acclaimed pediatric solid tumor expert at TMC: “Pediatric malignancies have a very high cure rate but the best chance of cure is the first chance. Many a times, given the emotional state of diagnosis, families are financially exploited and given inappropriate treatment in the name of emergency, which significantly affects the ultimate cure rates. In such circumstances TMC NCG Online – Navya Expert Opinion Service can give the families the means to evidence based recommendations quickly and prevent the above.”
Continues Dr Vora; “also in circumstances when heroic efforts, again with financial and emotional appeal, are counterintuitive, the expert opinions can give realistic hopes and expectations and means for the best possible course.”
On the positive side, TMC NCG Navya has been able to empower families with expert opinions that have enabled them to change treatment plans leading to improved outcomes. A child from Delhi was being treated for Turberculosis without improvement. TMC experts suspected cancer and recommended a surgical biopsy which proved Lymphoma. The child is currently under life saving treatment for the same.
Urging parents of pediatric cancer patients, Gitika Srivastava, Founder of Navya, shares her personal viewpoint: “Most people who have had any experience with cancer are aware of TMC and that it is one of the largest tertiary care centres in the world. However not everyone from far flung areas in the Indian subcontinent or developing countries in Asia and Africa can come to Mumbai or is aware of the significance of a proper choice in treatment to a change in outcomes. Given the cases we have seen, we would urge everyone to get an expert opinion through TMC NCG Online. As parents, you can be assured that the opinion rests on the experience of world renowned pediatric cancer experts and follows evidence based protocols best suited to your child’s specific case.”
The NCG is a consortium of 104 cancer centers, with a mandate to standardize cancer care, nationally. NCG is the largest global network of cancer centers collaborating to use technology and training to bring cancer expertise to every oncologist and cancer patient in India. TMC is Asia’s largest leading tertiary care expert cancer center, seeing over 67,000 cancer patients every year. Its strength necessitates a responsibility to make its expertise available to patients across India and developing countries, especially those who reside in locations where there are no expert cancer care centers.
Navya is a clinical informatics and patient services organization with a unique understanding of cancer patients and oncologists and a core commitment to cancer care. With a proven track record of successfully implementing innovative solutions that are low cost and effective, Navya is the first to develop technology systems specific to Indian cancer data for use by cancer patients and oncologists in India.
Contact: Gitika Srivastava | firstname.lastname@example.org