Tag: family

La Médecine C’est Guérir Parfois, Sulager Souvent, Consoler Toujours

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A friend approached me today. His mom is ebbing away with one of the most primal challenges — losing her ability to breathe. A tumor grows around her vocal cords, constricting her ability to eat, or swallow her saliva, or breathe – while her mind works and shuts down internally into depression and despair.

‘’La médecine c’est guérir parfois, soulager souvent, consoler toujours’

This medieval French admonition to doctors is to ‘Cure occasionally, relieve often, comfort always’

Much of my experience with patients is one where they are more terrified of what doctors will do to them in pursuit of an often elusive cure. We have invented many novel methods of torture in the pursuit of life – and apply them indiscriminately in response to fears, anxiety, guilt and shame; both ours and the families’.

Over some time, we uncovered that his mom doesn’t want treatments. She wants to feel more comfortable. Lessening the tidal wave of fear of choking was the only comfort that made sense to offer.

I tinkered around with some solutions — cool humidified mist, thickened fluids, a touch of benzodiazepines to allay anxiety. We also talked about music, prayer, family, and food for taste or comfort rather than nourishment.

Where is our calling and ability to minister to those dying from our incurable maladies?

Palliative and supportive care medicine is just now reaching some recognition in most of the world. The Indian Supreme Court ruled recently that a person’s right to dignity and privacy included a natural death in a course of their choosing.

As the technology to cure improves, so must our resolve to releave and comfort those beyond our means.

I am eager to expand Navya’s palliative recommendations, especially in settings where we die suffering without any help or comfort. The full spectrum of care must include the ability to recognize a patient’s dignity and preferences, and to comfort – always.

-Dr. Naresh Ramarajan

 

Online Expert Opinion: navyanetwork.com/tmh

Tata Trusts: tatatrusts.org

Tata Memorial Center: tmc.gov.in

Navya: www.navya.care

Navya: My Family – Thank you

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“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:

  1. 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.
  2. They guide the patient regarding the reports.
  3. The patient Advocate is constantly there to help the patient/their companion.
  4. The Navya analysts continuously contact the patient to find out how he/she is doing
  5. 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.

Prashanti Talpankar,
Associate Professor,
DnyanPrasarak Mandal’s College and Research Centre
Assagao.

 

Tata Memorial Centre (TMC) National Cancer Grid (NCG) Online – Navya Expert Opinion Service: Empowering cancer patients with expertise and information on their treatment options

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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 . This service, available at www.navya.care, allows patients to upload their reports and get a response from world renowned experts.

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.

Since 2015, over 12,000 patients from 22 developing countries have reached out to Navya to get expert opinions. Abdul Rahman, who lives in Erbil, in the Kurdish region of Iraq, had previously undergone surgery for pancreatic cancer. Five year later, he started experiencing acute pain in his abdomen and a subsequent CT scan showed a tumor on his liver that had metastasized to his lungs. The local physician asked his family to take him to a tertiary care center that could adequately advise a treatment plan and recommended Tata Memorial Center in Mumbai, India.

Abdul’s brother in law, Haseeb, started evaluating the logistics of traveling to Mumbai and found that the travel and lodging expenses for a trip for him and Abdul would be upwards of $5000. Further, the procedure of getting a medical visa would take at least a few weeks. They would also need to travel with no visibility on how long they would need to stay in Mumbai as they did not know what treatment would be recommended.

Haseeb started finding out more about Tata Memorial Center by going online when he came across the TMC NCG Navya expert opinion service. He was initially skeptical about the veracity and thoroughness of the service as he did not know if it would be comparable to making a trip to Mumbai. He decided to register at www.navya.care and explore the service further.

On registering, Haseeb received an email that explained the complete process that the expert opinion service followed. He would need to upload Abdul’s reports, which would then be summarized and sent to relevant experts at Tata Memorial Center who would provide a treatment plan that would be detailed in a patient report. This patient report could then be shared with the local physician in Erbil and he could be treated there. “The expert opinion service was a boon to us as this was more convenient and cost effective than traveling to Mumbai and Abdul could get treated locally”, said Haseeb Mohammad.

The necessary reports were uploaded following which a patient advocate spoke to Haseeb to understand the case in detail. Some additional reports were sought which the family had but didn’t know were relevant. “I found the person who spoke to me to be very empathetic and thorough in understanding the history of the case. This gave us comfort that the case was being comprehensively analysed.” He was immediately able to upload the additional reports that had been requested.

The case was summarized and sent to a gastrointestinal expert who had trained at National Cancer Institute designated cancer centers such as Harvard, Stanford and UCLA affiliated cancer centers. The expert’s recommendation was detailed in a patient report and the treatment plan included chemotherapy that could be administered in the local hospital. The report was shared with the local physician who started the treatment immediately.

Mr Haseeb said: “Our experience with the online expert opinion service was all that we had hoped for and more. In addition to it being cost effective and quick, we were able to get a treatment plan from an expert without the patient having to travel long distances. The patient advocate was thorough, the process was efficient and the report that we received was detailed and the treatment plan followed international guidelines. Our doctor in Erbil felt that we had made the right choice in approaching TMC NCG Navya online to get an expert opinion.”

Families seek to vet treatment plans with experts but often access to experts is limited. 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. The timely response from experts through Navya has meant that the treatment followed standards accepted globally and may have been the difference between a failed treatment and the best possible outcome.

Data Driven Doc: Staying Informed on the Diagnosis (Part 1 of 2)

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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

Online Expert Opinion: www.Navya.Care
Tata Trusts: tatatrusts.org LinkedIn Facebook  Twitter
Tata Memorial Center: tmc.gov.in  Facebook
Navya: navyanetwork.com  LinkedIn  Facebook  Twitter

Expert Opinion for Cancer Care in 24 Hours

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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

Tata Trusts: tatatrusts.org LinkedIn Facebook  Twitter

Tata Memorial Center: tmc.gov.in  Facebook

Navya: navyanetwork.com  LinkedIn  Facebook  Twitter

Quality vs. Quantity

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umbrellas-205386_1280There 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!

tmc.gov.in

tatatrusts.org