PopPop died five years and two months after being diagnosed with pancreatic cancer. It is not pure luck. It was hard work and ups and downs, but worth the roller coaster because it was more ups than downs, and we had the best care we could have possibly had. We shared life and love and family for five years and two months more than we thought we would have.
I use the word,”we” because someone with such a deadly disease needs a team to survive as long as PopPop did with one of the deadliest cancers, a cancer that is found anywhere in the pancreas.
I do not profess in this blog post to know or share everything about pancreatic cancer. I can only share what we learned on our journey of five years and two months.
RISK FACTORS: KNOWN AND LITTLE KNOWN
PopPop did not have any family members with pancreatic cancer, but was seventy one years old when diagnosed, only one of the risk factors, of age, we thought.
KNOWN
Over the age of 65 – it is not very common in people under 40
Have certain medical conditions, such as chronic pancreatitis
There is a history of pancreatic cancer in the family
LESSER KNOWN
One lesser known risk factor is one PopPop had:
obesity in his youth to young adulthood, one of many pancreatic cancer lesser known risks, linked to lifestyle. So, parents and grandparents, health and healthy weight in youth is important to prevent risk factors for many diseases, including pancreatic cancer.
LESS COMMON SYMPTOMS – ACT IMMEDIATELY
Pancreatic cancer is called the silent killer, because the symptoms are hard to identify early.
The symptoms are not those that you notice, and are more likely to ignore, but in order to survive pancreatic cancer you must pay attention and act upon noticing the following:
Changes in your urine and/or bowel movements: darker urine and/or light, floating feces (and maybe consistency like porridge).
Normally, no one looks in the toilet bowl. Start making that a habit. I put this first, when many other lists of symptoms I do not. PopPop noticed both early. Because our gastroenterologist was also our cousin, he mentioned this to him early. This is how PopPop was diagnosed early enough to survive five years and two months, rather than just less than two months, which is how long my mother survived pancreatic cancer after diagnosis, and is more common than PopPop’s survival.
Act immediately upon these changes, and ask for tests for pancreatic cancer, especially if you fall in the high risk group.
The next is also a strong sign something is wrong with you, and of pancreatic cancer: the whites of your eyes or your skin turn yellow (jaundice).
For either or both of the above, it is important to go to a doctor, preferably a gastroenterologist, immediately and be tested for pancreatic cancer.
DIABETES MAY BE EITHER A RISK FACTOR OR A SYMPTOM OF PANCREATIC CANCER
Sudden onset of diabetes. “. . .research studies suggest that new-onset diabetes in people over 50 may be an early symptom of pancreatic cancer. A sudden change in blood sugar levels in diabetics who previously had well-controlled diabetes may also be a sign of pancreatic cancer.”
MORE COMMON SYMPTOMS – THEY COULD BE ANYTHING BUT COULD ALSO BE PANCREATIC CANCER. KNOWING THAT, DO NOT IGNORE THE SYMPTOMS
It is important to have a geriatric internist and go to the internist on a regular basis, once or twice a year. If you have the risk factors for pancreatic cancer, tell the doctor. If you have risk factors for pancreatic cancer, and even if you do not, you should also have a gastroenterologist on your team and see him or her regularly. Do not ignore these more common symptoms.
Do not allow your doctor to say it is common when you are getting older
*to be more tired or have no energy
*to not feel well or feel sick more often
*to have indigestion or digestive issues (feel bloated, loss of appetite and lose weight without trying)
*to have changes in bowel movements, diarrhea or constipation
*to have abdominal pain or back pain (which may feel worse when you are eating or lying down, and better when you lean forward)
*to have itchy skin
*to feel cold or hot
Why? Because the symptoms are more common, can be many things, many of which may not be serious, so are more likely to be ignored or addressed by you or a doctor with a “wait and see” attitude. How long should you wait? Probably less time than you think you should. I would say do not wait more than two weeks to investigate the symptoms, even common symptoms.
Waiting with pancreatic cancer is a death sentence, as it was with my mother when her symptoms were so indistinct, but included more of the above than not, and were explained away as just getting older one has such complaints.
When you hit age 65, do not ignore any changes you experience. There is a reason Medicare starts at 65, as our risks for illness and disease increase. Covid is just one example. Fight any raising of the Medicare age. I cannot tell you how many of our friends and acquaintances starting having health scares and health issues starting at age 65.
CHOOSE THE BEST CARE
In my opinion, the best care available for cancer, especially pancreatic cancer, is in a cancer research center, which is what we chose. In order to qualify for the best care, you cannot begin treatment prior to being accepted as a patient in a cancer research center. The American Cancer Society has financial assistance to get to and be treated at a cancer research center. Not affording to travel is not an excuse. Not wanting to travel is a choice that may mean you do not live as long as you could, in as good a condition as you could, with the best quality of life you could. There are many people we know who make that choice. Everyone is entitled to choose what they want for their care.
PopPop had the best care. We chose to travel to a cancer research center that specialized in pancreatic cancer, Memorial Sloan Kettering Cancer Center, under the care of expert oncologist Dr. Eileen O’Reilly and her world renowned team. We traveled there for surgery, radiation, chemotherapy, and most other treatments.
HAVE AN ADVOCATE AND CAREGIVER EVERY STEP OF THE WAY.
I was PopPop’s caregiver. I went to every appointment and treatment. I kept detailed notes at every appointment and treatment. I noted diet, health, medication, condition, symptoms, concerns, questions, and notes and directions from every doctor and treatment. I diaried every day for five years. I reviewed the notes before every appointment. I made a list of current symptoms and concerns, medication reaction and interaction, reaction to treatment, and health and condition before every appointment. How did I know to do this? A cancer advocate advised me and assisted me. I am also a detailed person.
In my opinion, consulting with and/or hiring a cancer advocate is a choice imperative to survival. I could have had the cancer advocate do as much or as little of what I did, and pay for it. She taught me what to do and I followed her direction as a caregiver, which is also a choice. A cancer advocate can ease your way in the maze of cancer research centers (different centers have different specialties, specialists, clinical trials, promising new treatments) and help you navigate through the roller coaster of cancer. Yes, I have the name of the outstanding cancer advocate who helped us: Jaye Seidlin. (212) 748-9053.
PROMISING NEWS
The promising news is that with the best care you can survive even with pancreatic cancer for five years and two months, as PopPop did, or even longer with the promising news coming every day. He was able to see the birth of two grandchildren and watch them grow to age five. He was able to attend and participate in life passage events, a bar and bat mitzvah, a high school graduation, go on family trips and take grandchildren on trips, and have the joy of watching six grandchildren grow and develop over five years. Not to diminish the difficulty of the roller coaster of navigating pancreatic cancer.
PopPop did not qualify for the newest immunotherapy and clinical trials in pancreatic cancer, and there are more and more each day. It is amazing for me to say there is hope, if you pay attention to your health, symptoms, and are diagnosed early.
I sincerely hope that illness and disease do not reach you or your loved ones. The best advice I can give after caring for my loved one for five years is that I had those five years with him because he paid attention to his health, regularly had doctor appointments, and personally paid attention to changes in his health and wellbeing AND ACTED UPON THE CHANGES IMMEDIATELY.
Please do not procrastinate or ignore changes or take your health for granted once you reach age 65– really, anytime.
Life and love are worth it.
Joy,
Mema
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