Glenn Sellnow’s Cancer Story

In 2008, I was having some problems with pain in my rear end so I went to the walk-in clinic to investigate the cause.  The doctor looked over the situation and then asked me if he could bring a cancer surgeon into the room to look at it.  This question didn’t thrill me but I said yes.  The cancer surgeon tried a painful procedure right there on the spot, but I said I just could not take that much pain.  They referred me to another surgeon for a biopsy.

I had the biopsy done and was anxious to get the baseline results.  Normally the medical system releases all information to a patient via internet access as soon as possible.  Naturally they don’t do this with cancer because they seem to want the doctor to tell you in person.  I prefer to know things asap so I harassed a nurse by phone until she got permission to tell me the news.  It was not good news.  Cancer.  I remembered a verse from the Bible “Though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; Thy rod and thy staff they comfort me.” Psalm 23:4 KJV  That was the verse I needed.

Now it was time for endless procedures, operations, doctor visits and infusions for the years that followed.  I needed the Bible verse more than ever for these entertaining activities.  I had good doctors with the best of care.  I couldn’t help thinking of all the people living in third world countries without access to the care I was being given.  It brought me great sadness that so many people were suffering even worse than me.  

Some people have said that I have a good attitude.  Perhaps in some ways I do; however, I have moments when my thoughts would frighten those very same people.  I know that I have not reached a state of perfection.  I have yet to meet anyone that has and I will never be that person on this earth.

The first surgeon who operated on me gave my family a pep talk after the surgery while I was unconscious.  He said I probably wouldn’t live more than five years.  He may have been accurate but he was also a jackass.  I would like to live longer just to prove him wrong.

I was given the standard treatments for cancer:  surgery, radiation, chemotherapy and immunotherapy.  I didn’t have any bad reactions but there came a day when my oncologist said that I had a mere six months left to live.  Naturally I got second opinions just in case my oncologist was a dud.  The other oncologists said the same thing. Bummer.

It seems that oncologists have some difficulty keeping up to date on all the cancer trials taking place.  They are busy people and cancer trials do not seem to be organized into a common database for easy review.  Facebook had an “ad” for something called Trialjectory so I decided to take a look at it.  I had initial skepticism because I figured doctors would have the same information.  

Trialjectory has a fill in the blank questionnaire for the patient’s condition and it produces a list of useful cancer trials going on around the country.  Software can be a good thing when it does its job.  This would be a good application for some A.I. programming like they are now doing at MSOE, the college I attended eons ago. 

One of the trials at the NIH seemed to match me so my doctor referred me.  Initially, it appeared that I would be accepted into the trial.  Unfortunately, I received a rejection email just as I was packing my travel bags.  Double bummer.  

I found a second trial through Trialjectory that was considerably closer and would not require so much travel.   I found out my oncologist could duplicate this phase 3 trial at my current hospital.  Yea!  I don’t know how much this trial will extend my life.  We all die eventually but I don’t want to rush the process.  This trial might make a difference, so it’s worth a try.

Currently I am working with my Oncologist to determine the best version of the chosen trial.  Doctors are not God and they simply don’t know everything, and they are not expected to.  A trial is designed to prove the best treatment to pursue.  There is not any guarantee that it will improve your life span so I’m prepared for any outcome.  Everyone eventually dies.  So I have a back-up plan.  As a former electrical engineer, I always make back-up plans for all situations.

I personally believe that God controls our life’s destiny.  We can make choices that affect many outcomes and I would definitely like to prolong my life.  I believe that Jesus has given us a path to eternal life and that this current life “is short and sometimes full of trouble.” Cancer is not the worst thing that has ever happened to me, but, again, I would like to prolong my life just to prove my doctors wrong. 

And a parting word to my fellow humans. I suffered from Crohn’s disease which probably contributed to my getting cancer.  My advice is to get checked early and often for cancer if you have any chronic disease. 

Glenn Sellnow’s Cancer Story2022-12-08T18:15:41+00:00

Don’t Let Big Data Scare You Away from Cancer Treatment Options

Cate North - Stage 4 Living Author, Cate North: As a breast cancer survivor since 2000 and a clinical trial participant since 2018, Cate North is grateful to be thriving. She founded Stage 4 Living to inspire, reassure and educate people about protecting their health and living with greater meaning and purpose. Learn more at stage4living.com.

 

“You’ve got cancer” is one of the scariest things a person can hear.  

And once that door is opened, it leads to a passageway filled with more scary doors—surgery, radiation, chemotherapy, insurance, side effects, and so on.

From my experience as a breast cancer fighter and survivor, I can assure you that any worries you face will subside once you understand them and believe in your own resilience. And if cancer proves anything, it’s how resilient we humans can be.

What I want to focus on is a new concern that may be brewing for some cancer patients, which is the use of big data and artificial intelligence (AI) in healthcare. If you have cancer or are caring for someone with cancer, you may be wondering about data privacy and security. And if you are a minority or part of an underserved community, you may be seeing more stories in the news about bias within these new systems that could leave you out of treatment opportunities.

These are valid concerns, yet I believe that AI and big data hold great potential to bring treatment hope and improve the quality of life for most cancer patients. I am writing this to help you better understand these new technologies and how they can enhance your treatment options.

Big Data—Artificial Intelligence (AI)—Machine Learning

Data, AI, and machine learning are interrelated and already working behind the scenes in many now-common activities, like asking Siri or Alexa a question or finding something to binge-watch on Netflix. 

In case you’re unfamiliar with these concepts, a simplified explanation is:

Big data is the aggregation of many data sets. Artificial intelligence is programming that can help machines (essentially computers and digital devices that are connected to a network) continuously learn and understand what all that data means. In short, AI aims to find the needle in the haystack, the diamonds in the dirt.

And when it comes to data, it adds up to a lot of hay and dirt! According to the World Economic Forum, by 2025, 463 exabytes of data will be created each day globally. What the heck is an exabyte, you ask? It’s the equivalent of 212,765,957 DVDs.

And that much is accumulating. Every. Single. Day. 

It’s hard to fathom something nearly unfathomable, which is where AI is so vital. It can be used to help scientists and doctors develop new drugs and treatment plans. More importantly, it can help all of us as cancer patients to receive more effective and personalized care.

About data privacy, security, and bias

With so much data being generated, you would think there would be big data breaches happening all the time. That’s not the case, but of course a breach can be devastating, which is why we must never let our data guard down. Thankfully, many smart people work in cybersecurity and data is governed by many laws and regulations, especially patient data. In the United States we have protections under the HIPAA Privacy and Security Rules. As for clinical trials, this is how the FDA handles patient data:

“Patient/subject IDs, as well as any other unique patient identifier (e.g., Social Security number), and patient contact information will be redacted;”

In my own experience as a current clinical trial participant, I am “known” only as a subject ID—a random number that represents me and my treatment progress.

The last link in patient data privacy and security is the patients themselves. Every person bears responsibility for monitoring and protecting their own data and not sabotaging themselves by sharing passwords, using weak passwords, and failing to safeguard paperwork like insurance claim forms.

As for bias in AI algorithms, it’s true that much of the patient data from clinical trials and other sources have been dominated by people who are relatively wealthy, well-educated, and white, and that must change. The antidote is greater representation across all groups, including minorities and other underserved communities. The FDA recently held a Patient Engagement Advisory Committee to discuss and make recommendations on AI and machine learning in medical devices in regard to biases and transparency. The reported comments centered on:

“The importance of including diverse patients from different demographic groups as well as with different diseases; the importance of the human connection when learning difficult diagnoses; the need to relay the diagnostic accuracy of the technology; and the need to have adequate resources to place diagnoses in context with clearly conveyed actions.”

The report (pdf) may be downloaded here.

I am sharing my own experience and writing and speaking on this topic because I believe that every cancer patient should have equal access to clinical trials.

Making your own decision

When it comes to choosing to participate in a clinical trial and contribute to the body of cancer treatment data, every patient needs to make an informed decision based on their own comfort level. But I encourage you to consider this: Are you apprehensive about clinical trials because of privacy concerns, while at the same time uploading pictures of vacations and children to social media or providing your DNA to ancestry and genetic testing sites or banking online? Because any information-sharing practice can compromise privacy and security. Please don’t draw your line in a way that could limit your cancer treatment options. When doctors and patients share their treatment progress with other doctors and patients, patterns can be detected, better decisions can be made, and new treatments can be developed.

I am a participant and supporter of clinical trials. I was fortunate that my clinical trial option was vetted and presented to me by my oncologist, who works in a university hospital setting. Not every cancer patient is so fortunate, which why tools like TrialJectory are so valuable. TrialJectory empowers all cancer patients by easing the clinical trial research process and matching them only to the best trial options for their situation. 

The value of cancer patient data grows exponentially when it can be aggregated, analyzed, and compared. That’s why I encourage everyone to understand AI and big data and not be afraid of them. After all, once you hear, “you’ve got cancer,” you will discover how much strength and courage you have.

Ultimately, you have the right to decide whether you want your data to be added to the mix of clinical trial data. You can always say no, but don’t deprive yourself of the benefits you and other cancer patients could gain if you said yes.

Don’t Let Big Data Scare You Away from Cancer Treatment Options2020-11-10T22:05:22+00:00