Patient Author

My Fellow Cancer Patient,

Sometimes it’s lonely – having cancer. It can be difficult to witness the world continue to rotate at its normal, steady pace, when you have cancer. It can be insufferable to sit in traffic or be stuck in line…don’t they know, you don’t have a minute to waste? It can be painful to watch everyone around you laugh with carefree abandon – what’s so damn funny? Don’t they know I’m fighting for my life over here? 

Everyone who has walked in your shoes, days, years or even decades ahead can relate to the sense of loss, of loneliness, of feeling left behind, of feeling strange about new emotions, of being uncomfortable with changes in your body that come with cancer treatment, of being disappointed, angry, terrified, exhausted and everything in between.

So I’m here to tell you that You’re. Not. Alone. 

————–

You’re not alone if you become angry and a little bitter.

Having cancer can feel like a lonely existence.a try Like everything and everyone is keeping on keeping on while you are stuck in this black hole, this vortex of doctors and needles and biopsies and tests and nuclear medicine, oh my! You didn’t even know what a pet scan was a minute ago, and now all you can do is obsess over a clean pet scan result. 

Friends are going to work and making summer vacation plans. And you’re frozen in fear about the real possibility of not being able to attend your daughter’s next birthday party because you just don’t know how much time you have and time has now become a real variable and your most valuable commodity. That’s a lot and more than enough to make you angry at the world. 

Let me tell you, anger is precisely the correct response to feeling like you’re being jipped out of life…out of time…out of your own existence…that your kids are possibly being jipped out of a parent or as in my case, my parents being forced to watch me, their child, suffer after already losing their son, my brother, earlier in life. Fair? No. Not by a mile, so if bitterness creeps in from time to time, it’s perfectly expected.

You’re not alone if it’s summer but you’re freezing.

Losing your eyelashes and the hair on your head, on your arms, on your legs, in your nose and south of the equator leaves you feeling unexpectedly cold. A light breeze can be enough for your teeth to start chattering or your nose to start running or your eyes to water. It’s normal to start leaking or shivering at any given moment. I always kept tissues stuffed into my pockets, a cozy hat in every room and an extra hoodie in my car. 

You’re not alone if your reflection in the mirror is a little different than the one you remember.

Chemotherapy lowers your white blood cell count and weakens certain structures, like your nails. Your nails might become brittle, discolored or develop ridges called Beau’s lines. Chemo and radiation can cause changes in your salivary glands or in the lining of your mouth which can upset the balance of bacteria and lead to infections, mouth sores or even tooth decay. Also, some chemotherapy agents can cause hyperpigmentation in skin, leading to dry, itchy or darkening skin tones. 

I suffered from mouth sores, grayish skin, wiggly teeth and dark toenails. Not a pretty site, but we were trying to save my life, after all, not my toenails, so I kept it in perspective as much as I could and had those suckers painted in pretty shades of pink.

My recommendation is to slather on the sunblock, paint your nails with hardening nail polish, and make sure to have excellent oral hygiene. The good news is that most of these side effects affect a small portion of cancer patients during treatment and are usually temporary.

You’re not alone if you wake up at night in a cold sweat.

Fear sneaks up on you when you least expect it. Sometimes when your body is at rest, it starts to purge and you find your heart pounding unexpectedly or your hands shaking feverishly or your mind racing in circles, or your body suddenly trembling in the middle of the night in panic. 

I remember sitting quietly, calmly on the bus, reading a book, and my heart just pounding out of my chest. I remember lying awake in bed, deep into the night, contemplating all the what-ifs and mourning all the could-have-beens.

It’s ok to be scared. It’s ok to feel those feelings. It’s ok to cry. It’s ok to mourn. Give yourself permission, space and grace to sit with yourself and reconnect with your emotions, no matter when they sneak up on you.

You’re not alone if your favorite perfume/cologne makes you nauseous.

Certain types of cancer treatments can affect your sense of taste and smell. Don’t be alarmed if your sense of smell becomes hyper-sensitive during or after treatment, or if you get a metallic taste in your mouth. 

Seventeen years after my cancer treatment, I still cannot eat a turkey sandwich with cranberries because I had it for lunch after my third chemo infusion. Nor can I wear my favorite perfume from that time, Channel’s Mademoiselle as it brings me back to a time and place that I do not recall fondly. Always preferring vanilla to chocolate ice cream, I craved chocolate and nothing but chocolate during chemo…and ate it in obscene proportions. After treatment, I went back to vanilla and haven’t budged since. 

You’re not alone if your stomach feels like a hot air balloon at take-off and you’re passing gas faster than a run-away train. 

Excessive gas, bloating and abdominal pain, especially for colorectal and stomach cancer patients, are common symptoms. Also, certain foods, beverages, medications and even behaviors can contribute to gas build-up. Try these tips to minimize your discomfort:

1. Avoid carbonated beverages
2. Avoid dairy products such as milk, cheese, or yogurt
3. Avoid gas-forming foods like broccoli, cauliflower, brussels sprouts, cabbage, corn, turnips, onions, peas, peppers, radishes, garlic, cantaloupe, watermelon, apples, avocados, beans, lentils, and nuts
4. Avoid behaviors that can cause you to swallow extra air. Eat slowly, drink liquids in small sips and toss all the drinking straws in your house

You’re not alone if you have used your “cancer card.”

Ah…the infamous cancer card. The one we secretly keep nicely tucked in our back pocket and feel the right, the permission and, yes, the clearance to use at our own discretion, in appropriate moments but even more-so in the inappropriate ones. 

It’s the proverbial “get-out-of-jail” for free card that gives you leverage in low-stakes situations like getting the last slice of pizza or or negotiating dinner reservations or winning an argument with your spouse. I mean…what’s he going to do? Stay mad at you for buying those shoes?….You have cancer after all! Using the cancer card can bring a little levity to a serious situation or could even help you get out of hot water as it did for me.

One morning, I was running late for my PET scan. A nightmare scenario of complete bumper-to-bumper gridlock on the George Washington Bridge followed by some Mission Impossible-style driving down the FDR in rush hour traffic. It wasn’t looking good – we were surely going to miss the appointment. Now, if you know anything about PET scans, you know that 1) they are very progressive tests that are also quite expensive and not always covered by insurance companies and 2) you have to be at your appointment ON TIME because the radioactive isotope being injected (to determine any spread of cancer) becomes ineffective after about one hour and the PET scan cannot and will not take place. 

So if your insurance company clears it and you get the appointment scheduled, you had better be there on time, sucking down that canister of barium with a smile on your face…like it is a damn pina colada!

I looked at my husband and said, “Take the left turn on Lexington,” fully knowing there was no left turn allowed, at that hour, as clearly marked in red letters on the big sign in front of us. “Take the turn!” I shouted. And he did. And we promptly got pulled over by a handsome NYC cop, with sirens and lights, who had all the time in the world to give us that slow, painful ticket. 

I looked at him dead in the face and said, “Sir, I know what we did was illegal, but I have cancer.” Ugh, I said it. I did. I said it! Damn it! I used the cancer card. Cringe!!!!! “I have 

c a n c e r,” I continued in haste, “And I’m very late for an important test at the hospital.” 

He looked at me and said, calmly and slowly like he was the sheriff in a Western,  “Ma’am, I’m sorry but I don’t know anything about cancer. I don’t know anyone with cancer. I don’t know what cancer even looks like or…” I stopped him right there. “Sir! THIS is what cancer looks like” I said as I popped off my short, dark wig and held it in my right hand, hovering above my bald head. WHAT? Did I just really do that? Yes, in fact, I did. 

My husband and the cop both stared at me in horror…in disbelief…in silence. “This is it,” I thought. Don’t – say – anything! The next person to speak will lose…first rule of negotiation. So there I was in a stare-down with the cop, and thankfully, after a long pause, he broke first. “Ok ma’am. I’m going to let you go but I must give you this ticket. However, show up at the court date next month, and I’ll dismiss it. You’re free to go, and good luck.” 

I not only made it to my PET scan in the nick of time, but the cop kept his word and dismissed our ticket. I retired my cancer card after that episode. Didn’t want to press my luck. No sir-ry, I was one-and-done!

————–

So if you’re ever feeling like you’re a “party of one,” remember that you are in good company. We have been where you are, and sadly, others will follow. Cancer is actually a sisterhood, a brotherhood, a community of lonesome, lonely loners who found one another in the worst of times but also had enough self awareness and foresight to value the connections made, the experiences shared, and the hope forged along the way. Welcome to the club, my friend.

Intimacy. Finally…there it was… the real victim of my cancer treatment. The honest-to-goodness casualty of the brutal side-effects inflicted by the cancer drugs that were saving my life but consequently destroying anything and everything else in their path. My confidence took a hit when my body started to fall apart and the strong, assertive, accomplished young woman in the mirror turned into someone I didn’t know and didn’t want to see. She was pale and weathered…with a chubby face and exhausted eyes, no hair or eyebrows, no breasts, no conviction. But I certainly didn’t want to pity her, um, me. And didn’t want others to pity her either. I let the disconnect between the memory of who I once was to the reflection I saw in the mirror seep into every corner of spirit and consciousness. 

Unknowingly, I had built a tall invisible fortress around myself, surrounded by deep moats and fiery dragons and it was impossible to let anyone in…particularly my closest and dearest. Them, especially, I wanted to protect from the actual horrors that were sprinting through my psyche and unleashing their poisons throughout my body. It was during the darkest moments of terror…when I feared for my life and despaired over the wreckage that would be left in the aftermath of my death…that those walls went up higher and the intimacy and comfort, that I likely needed, was shut off from the world and most tragically from my family. 

So, when my husband suggested a romantic getaway to Florida after my chemotherapy and double mastectomy, I was somewhat surprised but mostly horrified or tortured over who would join him on the trip…the woman he married or the fragmented woman that looked back at me from the mirror every day. Somehow baldness, chemo fatigue and an amputated, scarred-up chest did not equate to an amorous vacation in my mind. 

Finally, my mother convinced me that fresh air and new surroundings might do me some good, and so I consented to go. In preparation, I forced myself to shop for pretty lingerie, luxurious scents and make-up that would brighten my grayish skin tone. I convinced myself that this could be a lovely getaway in spite of my bloated face, black toe nails, brittle teeth and crippled self-confidence. Even though it was mostly out of my control, I was ashamed of my appearance. I was only 32 years old but, in fact, I felt twice my age and looked like a sick, frail woman who was playing dress-up. Which I was. The last thing I was in the mood for was trying to be ravishing, desirable or, ahem, sexy. 

So I did the next best thing. I decided to “fake it ‘til I make it.” I packed all of the lovely lacey nighties, doused myself in Issey Miyaki perfume, applied some pink lip-gloss and put on my cutest wig and the bravest face I could muster before boarding the flight. It was an exhausting feat but I was hoping to dazzle (or maybe just even charm) my still-somewhat-new and very handsome husband with the best version of myself I could come up with. One that he hadn’t seen in over six months…the one I no longer saw in the mirror. 

And guess what! It worked. We spent the days holding hands during long quiet walks on the beach, giggling and blowing bubbles in the sudsy bathtub, giving each other foot rubs on the balcony that overlooked a grove of palm trees, and chatting intimately during dreamy dinners underneath moonlit skies. The weather was glorious and the air smelled like freshly cut flowers dancing in the salty breeze from the ocean.  

Everything seemed to wake up within me…slowly and then all at once. 

My skin began to tingle in the morning sunshine. My body seemed to become more coordinated as I began to take faster, bolder strides. My mood was lighter and I surprised myself when I laughed uncontrollably at something silly my husband said at the gas station. By the time my wig and lingerie came off in the bedroom, most of my insecurities had melted away. Before our trip ended, I took one last long look in the mirror in the light of day. I saw both of us…me and her, and I felt surprisingly grateful. Grateful because I was finally able to see ME again. And grateful because she was strong enough to carry me when I was lost and terrified. She was actually a badass warrior and not the frail, broken shell of a person I mistook her to be. The reconnection and self-awareness I felt, with myself in that moment, realizing that I had survived the unimaginable was truly one of the most humbling and stirring moments of my life.

And I finally understood that even if I felt undesirable and lacked desire, what I actually truly needed and had categorically ignored and denied myself during my treatment, was intimacy. 

Intimacy in the way we connect with others and with ourselves…in words, in touch, in smiles, in small gestures. Intimacy in the way there is a silent knowing when looking at someone you love…all the secrets and words said and unsaid that are yours and yours alone. Intimacy like letting someone who cares about you empty your surgical drains and clean your kitchen before giving your daughter a bath. Intimacy like when you laugh with someone at the same time at something that’s not even particularly funny but just ridiculous or order meals off the menu, intending to share, knowing what the other person will like. Intimacy like when you need a manicure but you’re so sick you can’t leave the house and your friend shows up unannounced to give you one. Intimacy like when it’s time to leave a party and your person looks at you across the room and gives you that wink and a nod and you instantly know it’s time to go. Intimacy like when you’re going through cancer and you’re scared out of your mind and someone next to you grabs your hand to let you know they won’t leave you. And on and on and on and…

Dear Friend, Caregiver, Loved One and Perfect Stranger,

Not to overstate the obvious, but people with cancer get tired, exhausted, simply depleted…physically and mentally and emotionally. Even their hair hurts. That kind of supreme fatigue can lead to anger, sarcasm, and even passive-aggression. Cancer patients sometimes lash out and bite the heads off of their well-intentioned friends only to immediately regret it in their next breath.

For example, after my double mastectomy, I offered my sister the jello sitting on my hospital tray. I wasn’t planning to eat it but when she accepted, I screamed at her for always taking hand-outs and fat-shamed her…over a cup of jello. Irrational? Yes, absolutely and also hurtful. 

But the roller coaster of feelings and unreasonable thoughts are all part of a cancer journey. And each person has their own journey. So if a loved one is going through cancer, buckle up for the ride, check for loose objects in the cockpit, and most importantly do not take things too personally.

And now for your public service announcement, here are the 10 things you probably do not want to say to someone with cancer:

1. “You’re SO strong.”
   Hmm, well let’s see. I’m only strong because I HAVE TO BE. Being strong is the only option I was given, considering that I’m fighting for my survival here. What’s the alternative…to roll over and die? Ugh…I wish I were stronger most days.




2. “You’re lucky that they have treatment for your disease.”
   I mean, I guess. If you consider me lucky because people are cutting off my body parts, stabbing me with sharp objects, burning me from the inside out with radiation and poisoning my veins with chemicals used for extermination in WWII…then maybe I am the luckiest! You’re a genius! Hate you. Love you!




3. “Cancer loves sugar. So you probably shouldn’t eat that. Have you thought about changing your diet?”
   Yes, I have thought about eating clean and green my whole adult life. But if it didn’t happen before the cancer, I don’t think it’s going to happen at this moment…unless you want to hire a private chef for me. No. Right now in my life, all I need is comfort food. So you can go change your diet, fatty – you have ice cream for breakfast! Now go away so I can eat my donut.




4. “You should really talk to a professional.”
   Oh, you mean I should talk to a therapist…like lie down on a couch in front of a perfect stranger to help me dissect my imploding thoughts? Talk all those feelings out? Talk about the fear, the anger, the hopelessness, the despair, the sheer terror of it all…them feelings? Well, I actually wouldn’t know where to begin. My feelings are like a shredded feather pillow…the feathers flying all around the room, and I’m trying to catch them and stuff them back into a pillow with HOLES IN IT! Every medical procedure and ache and pain rips another hole in the pillowcase. So maybe I’ll wait until the dust settles a bit. Maybe you need to go talk to a professional about all the idiotic things you say to me.




5. “You’ll be fine – you have such a positive attitude.”
   Thanks. But not really. I’m usually quite hostile in the quiet moments. And if attitude really mattered, why did I get sick in the first place? I was a pretty positive person before all of this happened. At the moment, my attitude about cancer is pretty crummy. So where does that leave me? And why don’t you just leave me alone with all your wisdom?! But wait – don’t leave me for too long…I need you to remind me how positive I am in spite of everything.




6. “You should simplify your life.”
   My life is pretty simple. I wake up. Go to the doctor, get stabbed a few times with needles. Get weighed, get infused, get sick. Go home, go to bed. Wash, rinse, repeat.




7. “How are you?”
   If you have to ask, then don’t. Because if you really cared, you would already know how I am. Go away. But please come back. I’m just having a really bad day.




8. “Call me if you need anything.”
   No, you call ME, damn it. I’m not going to ask you for help. I’m not going to call you in a moment of weakness asking you to peel me out of a chemo haze, or ask you to change my drains, or ask you to bring me a hot meal that consists of more than the two ingredients left in my fridge. I expect you to read my mind and figure out what I need and then just do it. I can’t think for myself, so I need you to think for me.




9. “You’re going to come out of this a much better person.”
   Nope. Nah. No way. Don’t think so. I was actually a lovely person before the cancer…before the runaway train derailed my life in about 1000 different directions. I was fine. I was happy. Now, I have less patience for nonsense, less tolerance for ineptness and zero fucks for people who are wasting their lives. I’m filled with indignation for complaints and useless people saying useless things – like what you just said. Go! Now! Run…before I unleash almighty hell and rage upon your soul. But please come back.
   




10. “It can always be worse.”
    Yes, thank you for reminding me that death is always my other option. Now go away. But don’t forget about me. It can only get worse if I have to endure this alone. 

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. 

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.