Five Pieces of Advice from a Pancreatic Cancer Survivor
Following his recent surgery for pancreatic cancer, Alan Honig is well on the road to recovery. While he considers himself lucky to have caught it early, he wishes to share some of his lessons learned.
Below are five pieces of advice that Alan offers up to anyone who encounters pancreatic cancer, either head-on or as a loved one.
Lesson One: Be Proactive
Alan discovered his pancreatic cancer very early on. Alan was already undergoing immunotherapy for bladder cancer, and wanted to take steps to help himself. He and his doctor had decided that he would get periodic CT scans of his whole body.
The results of successive CT scans showed some concerning growths in Alan’s abdomen, prompting Alan’s doctor to order an MRI. When pancreatic cancer was suspected, this led to an endoscopy, a cyst biopsy, and finally a diagnosis.
Each step required follow-up. Being proactive allowed a complete removal of the cancerous tissue.
- Ask your doctor about appropriate cancer screening options for people with your age, risk factors, and family history
- Act promptly to follow-up on next steps.
- Don’t let the fear of finding cancer prevent you from the chance to cure it
Lesson Two: Find the Right Doctor for You
Alan’s treatment journey depended on finding the right doctors. They helped him understand how to navigate each step. This meant also parting ways with doctors who did not help.
When one doctor acted too cavalier about a concerning test result, Alan followed his intuition. He switched doctors, and found one who took the findings seriously.
When it came to his surgery—a distal pancreatectomy that involved removing the tail end of his pancreas—his surgeon (Dr. John Chabot), used robotic techniques, which helped for a shorter recovery time. When it came to medication management and chemotherapy, his oncologists provided guidance to find the right drugs and dosages. Nutritionists also played a part in his recovery.
- Insist on a medical team that takes your concerns seriously
- Insist on doctors that use the most up-to-date procedures and knowledge, which could mean robotic surgery procedures, advanced screening tools, or anything else that medicine can now offer
- Insist on doctors who will coordinate and communicate with other members of your care team
Lesson Three: Get Copies Of Your Test Results
It is important to request and keep copies of your test results – lab results, imaging scans, and biopsies.
This means that, if needed, several doctors can review them and reach a consensus.
- Request copies and keep them in your records
- Seek second opinions to review your results
- Demand good communication, because there is a lot of back-and-forth between you and your doctors – and between them
Lesson Four: Know What to Expect
Many anxieties can result from facing unchartered territory. At many phases of his treatment journey, Alan found that the anxiety dissipated once he adjusted to his circumstances.
Still, there were several unpleasant surprises that others could anticipate, including: the price of certain medications; the reality of food restrictions after pancreas removal; the unanticipated need to remain in town following surgery; and, so on… .
Questions can become your best friends. They are an invaluable tool for a person’s well being.
- Ask about everything. For example:
- Logistics: If you travel for a surgery, how long will you have to remain in town?
- Post-Operative Care: Will you need chemotherapy, and if so, for how long? And on what kind of dosing and schedule?
- Side Effects: What can one expect from chemo treatment?
- Prices: If a medication is prescribed, will insurance cover it? Are there affordable alternatives?
- Dietary Adjustments: What will nutrition look like, once the pancreas is removed?
Lesson Five: Make Your Own Luck
While we cannot control everything, there are many, many decisions that can tip luck in our favor. Alan refers often to his good luck, but his smart decisions continue to protect his health, to the great relief of the many people who care about him.
Invest in your own good luck. Have faith and understand that you deserve the best care that is available.
- Specify an Emergency Contact—someone reliable who can be easily reached
- Consider traveling to better care—Alan lives in Florida, but ultimately traveled to New York City to receive treatment. If your location does not offer you options, research the nearest access to better care
- Speak up—if something does not make sense to you, it is worth discussing with your team until it does. You never know when you might be pointing out an important oversight.
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