The Value of Online Support Groups―A Brain Cancer Patient's Perspective

I'm a long term brain tumor patient and survivor. My Grade III Anaplastic Astrocytomas, sitting just above my brain stem, were discovered in January 2010 and diagnosed in May 2010. At the time, I was given 18 months to live. That was almost 38 months ago and I am still defying the statistics.

Since January 2011, I've been getting semi-monthly injections of Avastin, through a medi-port installed in my chest. The results have been remarkable, or as my radiologist would say, 'The MRIs are Unremarkable'. Six months into the treatment plan, my 'olive sized' tumors shrank to the size of peas. After another 6 months, they became barely visible on the MRIs. After another 12 months, my Neuro-Oncologist says he really can't make them out. From what I am being told, 'poster boy' results for Avastin treatment.

An unfortunate aspect of the above is that my wife and I went through all of this relatively alone. It was like there was nobody else going through the same experience, and was very difficult. As we'd ultimately found out, this couldn't be further from the truth.

A similar finding exists among soldiers with Post Traumatic Stress Disorder (PTSD). Studies indicate that the harm arises not from the war alone but also from social isolation and conflict afterward. This finding is demonstrated in numerous studies of American soldiers returning home: PTSD runs higher among veterans who cannot reconnect with supportive people once they return home.

Bonding and engaging with others in a similar situation, is key for successful patient outcomes in both situations.

By chance we met a couple in the Lobby of Memorial Sloan Kettering. She was diagnosed with the same tumor type, about a year after me. She's had success on the Temodar path, and continues on it. My wife and I and she and her husband immediately bonded. It was like we've known each other for years. She and I talk about the successes and challenges we go through on a daily basis. Often surprising each other with how similar our stories are. We support each other through the challenges and celebrate the successes. Similarly, my wife and her husband share their caregiver experiences.

Slowly we became aware of others in our area that are going through similar journeys. We've reached out to them and now have a growing group of patients who meet regularly. We have included a private online community for the group to use. This allows the group to meet virtually — anytime and wherever we are, posting questions for other members to respond to or including resource links or documents/files for other members read.

We hold video calls as a group which adds to the bonding process. There is nothing like looking a fellow patient in the eye and saying 'I know how you feel,' and having them look back at you and say, 'I know you do'.

Some of the members have challenges in getting around, and without this online support group, would truly be alone.

We have in our group a wide range of cancer patients and survivors, including a 47 year old woman who is a 7 year cancer survivor and was diagnosed with a grade III AA and is no longer taking cancer medications. We all strive to meet and surpass her success — an inspiration to us all. We have another 47 year old woman who is currently taking Temodar 5 days a month. We have a 76 year old man who is a 6 month survivor and is getting clean MRIs. There is also a 28 year old woman who is a 2 year survivor and is getting MRIs, with No Evidence of Disease (NED); another success metric for us all.

We plan on limiting this group to about 20 - 25 cancer patients/survivors. The unique value of a support group this size is that we can extend the illness connection we have with each other, to a personal level. The public bulletin boards that exist are a valuable resource for us all, but they lack the very important personal bonding experience that is required throughout our recovery process.

Like many other victims of such chronic illness or trauma, "those of us fighting the cancer beast are a band of brothers and sisters. None of us want to be on this journey, but we are, and so we fight, side by side, helping each other with love, information and support."

This is the primary benefit of online support groups for patients.

About the Author

Edward Chatlos is the CEO of PeerPort, a cloud based collaboration platform specifically designed to meet the needs of small support groups in the healthcare arena. He can be reached on edward@peerport.us