Cancer

I Have the Ability to Talk About Cancer with People and Almost Embrace It As A Part of Life Now | by Live Life Now Project | Sep, 2021

I Have the Ability to Talk About Cancer with People and Almost Embrace It As A Part of Life Now

“I have the ability to talk about cancer with people and almost embrace it as a part of life now.” Dave Dubin’s story. Photo by Eddi Aguirre on Unsplash

It was the first cancer diagnosis that led New Jersey-based, three-time cancer survivor Dave Dubin, 53, on the path to setting up his own Foundation (“AliveAndKickn” — www.aliveandkickn.org) to raise awareness for people suffering from Lynch Syndrome, a genetic mutation that can drastically increase the chances of a cancer diagnosis for individuals.

Now a two-time colon cancer survivor and kidney cancer survivor, Dave has a full life consisting of raising his three sons with his wife, working full-time in genetics, and promoting AliveAndKickn’s mission to improve the lives of individuals and families affected by Lynch Syndrome and associated cancers through research, education and screening.

As a public speaker, podcast presenter and difference-maker in the lives of people globally, the Foundation which Dave runs with his wife Robin has a Board of Directors as well as a Medical Advisory Board, corporate partners, donors and alliances. Launched in 2012, it’s the first organization of its kind within the Lynch Syndrome space.

Dave’s cancer journey began in 1997, at age 29, when he was diagnosed with colon cancer following the development of recognisable symptoms. As with most 29 year old males, Dave felt like he could do anything: as a ball player, soccer player, business owner, recently married, and with a one year old son, new house, Dave felt immortal. But literally, overnight, the superhero mentality vanished with the diagnosis. His first bout of cancer was cured with surgery and six months of chemotherapy, and Dave returned to normal life working and raising his young family.

Following annual colonoscopies, Dave was diagnosed with colon cancer for the second time in 2007 which set off alarm bells amongst his doctors as, apart from a low iron count, Dave had no obvious symptoms and the colonoscopy one year prior was completely clear — this was when Lynch Syndrome was also discovered, and proof of how quickly cancer can develop in those with the hereditary mutation. Following doctors’ recommendations, Dave’s annual checks included an upper endoscopy, which discovered a renal carcinoma on his right kidney that was easily removed by laparoscopic surgery.

Lynch Syndrome’s influence on these cancer diagnoses were instrumental in Dave’s journey as a spokesperson for Lynch Syndrome via the AliveAndKickn Foundation:

“Generally, we’re not aware of the prevalence of Lynch Syndrome, it’s very common — it’s the most common type of hereditary cancer that nobody talks about, and that’s why we set up the Foundation. It felt like there was a need — I started getting involved in public speaking and getting profiled, and I became the face and the voice of Lynch Syndrome.”

Simply raising awareness of the availability of genetic testing helps individuals gain knowledge of their pre-determined ‘panels’, and the option of finding out this information is available, relatively easy, and surprisingly affordable.

“Genetics determine just about everything. There are panels of tests you can have done to identify various types of hereditary cancers and other things like cardiovascular issues. I would say to people: understand your family health history. If there’s a family history of any issue, get a test to look for those things. You’re putting together pieces. The ‘panels’ have become inexpensive, and you get your results in a matter of days.”

However, knowing one’s predisposition to a certain type of cancer due to family history doesn’t automatically mean they should live life with a carefree attitude to their health because of the higher probability that they will develop that cancer in the future. Living a healthy, well-balanced lifestyle can make a world of difference.

“Lifestyle is always important. Will having a genetic predisposition determine if you’ll get cancer? Probably. The question is ‘when?’ For example, I was 29 when I was diagnosed with my first colon cancer, I was always active, maintaining a good weight, good lifestyle — what was the factor that triggered my cancer at 29? We still haven’t been able to figure out what causes the Lynch Syndrome mutation to kick in and the body to stop fixing itself. Someone else could have the same mutation as me and not get cancer till much later on, or not at all. Taking care of yourself is always going to be the most important thing. There are certain lifestyles you should follow regardless of whether you have a genetic predisposition or otherwise.”

Since fighting cancer three times following his first diagnosis at the age of 29, Dave is no stranger to the rollercoaster of emotions and “dark places” that cancer can send an individual. Working closely with cancer patients on a daily basis, Dave is well-versed at offering advice on how to work through the negative spaces and emotions triggered by cancer:

“You’re going to have bad days, we all do. Cancer patients typically have more bad days than others. Tomorrow is another day and an opportunity. By having a conversation and being involved with organizations where you have someone to talk to, you feel significantly better. Some people feel better by discussing issues with others, other people feel better by internalising it — there is no playbook that says how you’ll feel better. I’ve had the good fortune of having people around me who understand it and relate to me, and that’s who I’ve stuck with. Not everyone will stick around — cancer is a scary word, and people will head for the exits as soon as they hear about it. It’s a rollercoaster. That’s how life is. There are some people who will be there for you, and some who won’t.”

Dave continues by emphasising that remaining active and interested in various pursuits helped keep him focused through his periods as a cancer fighter:

“If finding something that makes you feel better, it’s going to help you in the long run. For me, I played soccer through chemo. I felt miserable playing, but I’d rather feel miserable playing than sitting on the sidelines and doing nothing. For other people, it’s painting, gardening, find what it is for you.”

For now, Dave ‘s health-check regime consists of an annual colonoscopy and upper endoscopy as well as a yearly visit with a urologist. Every two years, he’ll have a cystoscopy, mammogram, MRCP, and chest, pelvis and abdomen scan. Dave is also active in his three sons’ medical lives, encouraging them to have genetic testing from the age of 18, given the family’s predisposition to Lynch Syndrome and genetic cancers. For the Dubin family, life with cancer and Lynch Syndrome is dealt with head on.

“I like to think that I and my family have been a good example of life with Lynch Syndrome — that we discovered it, have been proactive about it since then, and we’ve shown you can live a very long, productive energetic life post-cancer. My sons have always seen me as a survivor and I like to think I’ve set the example of that — you can live post-cancer, and post multiple cancers.”

Dealing with medical profession and cancer patients on an almost-daily basis through his AliveandKickn foundational work while working full time in the field of genetics, Dave is grateful to have the opportunity to positively impact the lives of people internationally. Whilst many other cancers are well-promoted, the prevalence of Lynch Syndrome and its influence on colon, gastric, urological and reproductive cancers in women remains very under-represented.

“I feel a tremendous value in what I and we as an organization bring to the table. If it wasn’t for the need, we wouldn’t be doing it. If we had the same type of penetration as other cancers, we wouldn’t have started the organization. There was a need. There’s still a need, that’s why I feel a tremendous sense of fulfilment. We’ve increased awareness of genetic testing — some people test negative which is great and what you want.”

As a co-founder of AliveAndKickn, Dave feels a great responsibility in his role as the unofficial global spokesperson and educator for Lynch Syndrome and its impact on future cancers. The Foundation works closely with the medical industry to promote Lynch Syndrome awareness and will continue to be a focus for Dave in the future:

“We’ve approached the foundation like a business, which it is. Without extending ourselves physically and economically, we’ve kept our risk low and return high. The long-term goal is growing the registry, that’s really been a priority for the Foundation. By aggregating more data and bringing more people who have Lynch into the fold, hopefully before they have cancer, we can really put the research together that we can make a difference. That’s the focal point. In addition to growing the advocacy space in terms of awareness. We know the statistics and we’re looking to prove those. I feel what’s missing is the awareness on an international scope. The numbers are there. People just don’t know about it. The whole awareness is still the biggest ‘lack’ right now?”

Moving forward, Dave will continue in his role as an educator and major influencer in the Lynch Syndrome space. It’s work he’s passionate about and he’s truly making a difference within this field of research:

“I’ve had the good fortune to be able to merge my advocacy space and my professional space. When I go to conferences for work, I’m still talking to physicians and hospital staff about the benefits of testing and incorporating it into their practices. Then I can also have the advocacy conversation and talk to patients. I have the ability to talk about cancer with people and almost embrace it as a part of life now — we all have a certain amount of time on this earth.”

Dave Dubin is living proof that the cancer journey can be instrumental in finding one’s purpose in life. As an educator, influencer and advocator, Dave is making a positive difference in the lives of people globally, and influencing the medical profession in a positive way.

If you’d like more information about Lynch Syndrome and Dave Dubin’s organization, visit www.aliveandkickn.org


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