“The suspicious lump in my left breast could be cancerous” was suggested to me soon after my mammography and I was devastated. My husband and I felt numb with fear. But luckily our doctor friends: my gynaecologist, my family doctor and an NGO for Cancer were my pillars of strength.
They removed the tumor with wide excision and sent the blocks for biopsy. As everyone who has encountered this phase knows how difficult it is to wait for the reports. Once the report came all of us were jubilant because the report indicated that it was first stage and II grade infiltrating carcinoma cancer.
My surgeon suggested that I may not need a chemotherapy but I should undergo some other tests to confirm. For a second opinion, we decided to meet a different doctor. He said chemo would be required. We were a little confused.
And at that time one of our relatives and a close friend who was a doctor sent us links to www.navya.care. I decided that I will register my name on this website and maybe upload my reports. I read about their collaboration with Tata Memorial Hospital. It said you just have to pay Rs.7500 and you will get your expert advice in three to four days. It also said it was free for people with economic challenges. It was too good to be true.
On 28th of April I registered my name and left it at that. 29th April was my birthday. At about 1p.m. I get this call from Chirom. He introduced himself as a Patient Advocate from Navya. He spoke to me and my husband Sandesh from almost one and half hour. I think that was one of the best birthday gifts of my life and beginning of a beautiful relationship.
I uploaded all my reports. Gitika Srivastava and Pooja were constantly guiding me regarding the reports sometimes by sending emails and sometimes by calling me up. Within a couple of days of uploading the reports, the expert opinion report was received by me. More or less the suggestions given by the panel was similar to what my surgeon had opined. They suggested hormone therapy and irradiation of partial breast for seven days.
The support that was given by Chirom and Pooja was untiring. Actually maybe once reports are given Navya’s duty should end but Chirom has been kind enough to chat, guide, and motivate me till date.
We decided that we would get the chemo administered from a hospital in Goa. I am following the regimen given by Navya.
What I would like to highlight about Navya is:
The second opinion that Navya gives is based on the reports that are uploaded by the patient but they are very careful about analysing the reports also. In my case it was very clearly seen.
They guide the patient regarding the reports.
The patient Advocate is constantly there to help the patient/their companion.
The Navya analysts continuously contact the patient to find out how he/she is doing
It feels like a family.
The support that I got from Friends, family, the NGO, all doctor friends and Navya made me strong in this phase of tackling chemo with positive attitude.
DnyanPrasarak Mandal’s College and Research Centre
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.”
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
In Berkeley, Calif., Hope Friedman, a 62-year-old retired nurse, said she was also stunned by the result…As she described her reaction to Mr. Trump’s victory, she wept.
“It kind of felt like being punched in the stomach,” she said. “It feels like when you get a cancer diagnosis and you are sick to your stomach and you can’t believe it and your mind is spinning” (NYT November 11, 2016)
Denial is a powerful emotion. Recently, Navya processed the case of a 28 year old with cancer matting his lymph nodes even after surgery. Navya had to write, heartbreakingly, in response to every one of his questions. “Do I still have cancer?” (Yes, you do.) “Will I survive?” (Let us recognize the inability to predict the future of an individual and just try and focus on onward treatment, knowing that data shows most patients in your situation do not outlive their disease for 5 years.) “Is the CT scan truly confirmatory of recurrence” (Yes, unfortunately, it is.)
Hope is the ultimate enemy of cancers
Imaging, evidence and experience review had certainly helped this young man. We had identified immunotherapy and radiotherapy as an option for him. But it didn’t feel like a victory. For a 28 year old, it was cold comfort. An extension of life through the misery of treatment. Something about life itself was unfair and wrong.
Trump’s victory feels the same to many in the country. A diagnosis sunders reality apart, and fear sets in. While things may turn out all right, the chances that they would are much lower than ever before the diagnosis of President Trump. Now all one can do is be watchful, and be ready to do battle at every sign of encroachment and assault.
I’m thankful for denial. When reality makes me sick to the stomach, denial and detachment allow me to function. It allows me to plan, to research and to execute. It maintains hope. And hope is the ultimate enemy of cancers – of the physical body and of the body politic.
The Ampulla of Vater sounds like something straight out of Hogwarts, but it’s a special vase we all carry within our gut. Digestive juices from the bile ducts and the pancreas pool together in the ampulla to meet the food coming into the small intestine (duodenum) from the stomach in this action-packed area of the GI tract.
Naturally, even small tumors in and around the ampulla cause major problems. Blocking bile ducts causes a quick yellowing of the skin and eyes. When the ampulla is blocked and the juices do not flow freely, the pancreas, the liver and the stomach all start to back up.
Ms. Khan had been living in South Korea for years. Recently, her skin had started to get a jaundiced look, and she wondered if it was something in her diet catching up to her liver. The gastroenterologists at South Koreas premier hospital unfortunately diagnosed her with a periampullary mass in the duodenum, and the surgeons promptly completed a Whipple procedure – named after the surgeon who devised the elaborate surgery to remove the head of the pancreas, common bile duct and duodenum from a patient.
Her surgery was a success! The tumor was completely removed. But three nodes near the duodenum were positive. Mr. Khan wanted to ensure that the cancer didn’t come back or spread.
Experience matters. Indian oncologists see a large number of young patients with advanced GI tumors. Gallbladder and ampullary malignancies appear to affect Indians more frequently, younger and at more advanced stages.
Mr. Khan reached out to Navya for a review of his wife’s case. Promptly, the Navya Expert System, Vyas matched her case with similar patients seen before. Experience matters again- not just for humans.
Confronted with a duodenal periampullary cancer, Vyas looked up data related to duodenal/intestinal malignancies and recommended fluorouracil based therapies. The structured summary was quickly compiled and sent to an Indian medical expert in London affiliated with Tata Memorial Center for review.
The expert quickly responded, correcting Vyas. Treating the tumor as periampullary rather than as dudodenal/intestinal made more sense, said the expert. The treatment recommended was a two-drug regimen recently shown to increase survival in pancreatic cancer at ASCO 2016. The periampullary arm of the trial was still recruiting, but the true experts were treating ahead of the data, as always.
The patient report reached South Korea within 13 hours of Mr. Khan reaching out to Navya. Needless to say, Mr. Khan’s family was grateful and impressed.
Vyas learned something new from the case. The experts quick review and feedback pointed Vyas to emphasize periampullary origin over intestinal origin of cancers while looking for treatment options. Vyas integrated the knowledge it already had about the ESPAC4 trial from ASCO’s conference in 2016 for pancreatic cancers in a new manner into its experience engine for ampullary tumors.
Experience matters. For patients, experience is the bedrock on which they extend their faith to a physician. For Vyas, the wealth of experience of experts and patients at Tata Memorial Center give it an enormous head start in deciphering complex cases. The opportunity to learn from every patient in the engine with expert feedback makes Vyas an enormously rich and accurate predictor of decisions. Vyas starts out with a bedrock of evidence and guidelines. And with every case it sees, it gets stronger and better at guiding patients towards the best treatments.
The experience of seeing Vyas learn is truly magical. Some days, it feels like something out of Hogwarts.
In war torn Iraq, Taufiq was unfortunately diagnosed with lymphoma. At 60, he had a widowed daughter and grandkids whose future he was deeply worried about. Now this diagnosis of cancer was clouding his world more than the local strife. The pathologists were hedging between a diagnosis of mantle cell lymphoma (more aggressive) vs marginal zone lymphoma (slow growing). His doctors were recommending an aggressive four-drug combination therapy. He was worried about the lost days of work, the risk of infections and heart disease, and toll on his body and his spirit.
From an Indian friend, he had heard about the wealth of experience at Tata Memorial Center, Mumbai in treating thousands of patients every month with liquid cancers. Desperate, he reached out for advice on a cure. The TMC website led Taufiq to Navya’s online expert opinion service.
The TMC website led Taufiq to Navya’s online expert opinion service.
Navya analysts in Bangalore received the case from Taufiq the same afternoon at 3:48pm IST he had contacted TMC. After gathering a brief history from Taufiq, his case details were entered in the Navya system within a couple of hours. The expert system crunched the patient details, searched hundreds of similar cases and trials, and concluded that Taufiq had another option – a two-drug regimen that was less toxic and more suited to marginal zone lymphomas.
Since there was diagnostic lack of clarity, I received the case for medical review. Just getting off an overnight ER shift in Los Angeles at 6:36am PST- less than four hours since Taufiq reached out to us. A quick review of the facts confirmed that the systems analysis looked right, albeit surprising. I sent the case onwards through our Navya mobile expert app to one of India’s most senior and thoughtful lymphoma specialists at 7am PST.
The TMC expert’s push notification about a new case received showed up instantly in Mumbai, India. Caught in legendary Mumbai traffic on his way home, he reviewed the structured summary of the case and the system recommended options and selected the two-drug regimen. He added a concise and thoughtful note about why he believed the diagnosis favored mantle cell lymphoma, and recommended additional tests on the biopsy specimen at TMC to finalize the diagnosis. His response reached the team by 8:16pm PST- about 4.5 hrs since Taufiq had reached out to us.
The evening shift at Navya worked on a clearly worded patient report explaining the new diagnosis, and the specific protocol for the two-drug regimen. The evidence, guidelines, experience, and expert advice was synthesized into a report that Taufiq could easily understand. After a quick review of the report, it was uploaded by 10pm IST the very same day!
Imagine Taufiq’s relief at being able to receive a clear recommendation from an expert on the same night! Not only was his chemotherapy regimen going to be less toxic, his prognosis seemed better with a less aggressive diagnosis than his doctors in Iraq originally gave him. He felt he had been granted additional years to secure his family’s future. Suddenly, the night must have seemed just a little bit brighter.