Navya: My Family – Thank you

Prashanti pic User Write up 08291017

“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.

 

The Clarity of an Expert Opinion Prevents Unnecessary Chemotherapy

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Reshma Singh, a 22 year old, working with a multinational in Pune received a call from her father. Her mother, Mamta, 50, who lived in Sehore, a small town midway between Indore and Bhopal was diagnosed with Resectable Ovarian Cancer following severe abdominal pain and was advised immediate surgery. There was a mass detected in the uterus which meant that a complete hysterectomy was deemed necessary. The family had to travel to Indore where, in consultation with a Laparoscopic surgeon at a private hospital, she underwent a successful procedure where the tumor was removed.

This was supposed to be the end of the ordeal but things turned out very differently. “That one week in the hospital post surgery was a stressful time for us where each doctor visit would cost us several thousand rupees” said Reshma. After a biopsy, the surgeon recommended that she go through a chemotherapy regimen of 7 cycles. “The doctor told us that this was a precautionary measure to ensure the cancer does not recur. This came as a shock to all of us. I also felt that the surgeon was pressuring us into starting an expensive and possibly unnecessary treatment.” A heated debate ensued within the family with some members feeling that the doctors word must be trusted and Reshma insisting that such a big step should not be taken without getting another unbiased opinion from an expert.

Reshma wanted to get an opinion from Tata Memorial Center in Mumbai but her mother was in no shape to travel. She reached out to TMC NCG Online, Navya Expert Opinion Service to get the advice of world renowned experts. She uploaded all her mother’s reports following which a patient advocate reached out to her to understand the medical history and to know what the family wanted to ask the experts. A clarification was sought about the marginal status of the surgery as well as the planned treatment.

The case was compiled and sent to an expert at the Gynecology disease management group and his opinion was sought. The response was that as per the globally accepted guidelines for the treatment of cancers, surveillance was the recommended course of option. This would require the patient to undergo a physical examination and a battery of recommended tests every 3 months for the next two years. Chemotherapy was not a recommended course of treatment at this time. The report was shared with Reshma who shared it with the elders in the family. “When my father saw that the Tata Cancer hospital doctors had given this opinion, there was a sense of relief.”

There is scarcity of cancer experts in India, located mostly in metropolitan cities, but the number of cancer patients in need of an expert opinion is in the millions. Traveling to consult an expert at each of the many treatment decision points is costly, logistically complex, and delays the onset of treatment. In this case, reaching out to TMC NCG Online -Navya Expert Opinion Service, meant that the patient was not administered Chemotherapy which would have been against globally accepted guidelines for that particular situation.

Urging family members of 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 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. You can be assured that the opinion rests on the experience of world renowned cancer experts and follows evidence based protocols best suited to your loved one’s specific case.”

National Cancer Grid (NCG), tmc.gov.in/ncg Tata Memorial Centre (TMC) tmc.gov.in

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 www.navya.info

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 | gitika@post.harvard.edu

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