Pancreatic Cancer Awareness

Lizzy on our trip to Austria, 2016

My life will never be the same after losing my sister.  I’ve finally (sort of) gotten my life back together, which is why I’m writing this post.

When Lizzy got sick, my life changed dramatically.  I literally had no time to figure out what to do or where to send her.  Thankfully, a couple of friends and a few strangers stepped in to help.  Unfortunately, there was very little time to research where to go for the absolute best treatment.

For those not aware, most people who have pancreatic cancer find out too late.  I’m writing this post to get you thinking about what your symptoms and to encourage you to demand a test and get the right treatment.

Check for Early Signs and Symptoms

First, if you are reading this, go to the list of early signs and symptoms of pancreatic cancer.  Figure out if you or someone you care about has any of these symptoms.  If you have had one or more of these symptoms, you may have a minor digestive issue, or you may be in the early stages of pancreatic cancer.

Remember, pancreatic cancer kills because it is often found too late. The reason it’s found in the late stages is because the symptoms are similar to those of other digestive issues, such as GERD or IBS.  Speak to your doctor about your symptoms and if they have been lingering or if they come and go.

Demand a Test for Cancer

Don’t ever get lulled into a sense of security that your doctor is checking for cancer.  She’s not.  Don’t ever think that a doctor will automatically send you off to get tested for cancer.  She will not.

All I can do is tell you that you must speak up and make sure that you get tested.  If the test is denied, get a second opinion.

We found Lizzy’s cancer with a CT scan with oral and IV contrast. However, doctors will cautions that the test exposes you to radiation, which…may cause cancer, so they are reluctant to prescribe it.

A safer test, although not 100% accurate is a test called MRCP. Your doctor may not even be aware this one exists, so be sure to bring it to her attention.  Whatever you do, demand a test for cancer.

Seek Care from a Specialist

When Lizzy was diagnosed, we were shocked, dazed and confused.  We had no idea what to do or where to go to get her the best treatment.  We knew her situation was bad and that she need the absolute best treatment available.

In the beginning, we discussed taking her overseas for non-chemo cancer treatment once she got well enough to travel.  Sadly, she kept getting worse.  All we could do was focus on getting her insurance approved to see a specialist.

With the help of friends, we found Emory Winship Cancer Center in Atlanta. As her advocate, I completed forms to ask for approval to see a pancreatic cancer specialists at Winship.

Unfortunately, after one bout of the trial drug but, she came down with pneumonia and her blood cell count was astronomically low.  When she walked a short distance, she collapsed.  For several days I rushed her to emergency rooms and admitted her to hospitals for a variety of treatments.

In the end, her specialist determined that she was too weak to continue with the clinical trial drug.  Lizzy chose to die rather than to try other chemotherapy.  As she made this decision in the doctor’s office, I cried like a baby.

I write this to say that you may be limited to where you can seek treatment for many reasons.  Whether it be your insurance plan, socialized medicine, your finances, where you live or the ability of the sick person to travel, your choices for treatment may be limited.  You may not have the time nor the energy to do the research and find the best places for treatment, so I’ve provided some information to help you.

Best Pancreatic Cancer Centers

If I could do it all over again, I would do exactly what I did, which was to get her to a specialist as fast as I could.  Due to a late diagnosies, the cancer had spread to her liver, so she didn’t qualify for surgical removal of the tumor.   However, Lizzy did qualify for the clinical trial drug and had an 8-hour chemo session here.

Emory Winship Cancer Center

When Lizzy was diagnosed, she was stage 4 and in extreme pain, so taking her out of town was impossible.  We had to do the best we could in our situation, so we opted to take her to the pancreatic cancer specialist closest to us.  The Emory Winship Cancer Center in Atlanta, Georgia has a positive vibe and everyone there was kind and hopeful.

UPMC Hillman Cancer Center

If you have more time and if you are well enough to travel, try for UPMC Hillman Cancer Center in Pennsylvania.  This cancer treatment center is located at the University of Pittsburgh Medical Center and specializes in pancreatic cancer care.  Seeing specialists in the field is a must, so keep that in mind when searching for doctors.

MD Anderson Cancer Center

MD Anderson Cancer Center, based out of Houston, Texas, is rated #1 for cancer treatment in America.  They must be doing something right.  If it’s possible to seek treatment here, make an appointment.

Strangely, I’ve heard conflicting stories on how patients are treated here, so if you’ve had experience here, I’d love to hear from you.

The Bottom Line

If leaving your hometown is not possible, do a web search for “Best Pancreatic Cancer Treatment Centers near me.”  Pick a specialist and start requesting a referrals immediately.

All we can do is the best we can do, so don’t waste precious time seeking perfection.  You won’t find it.  Instead, seek peace and comfort in know that you did your very best to get the best treatment possible.

We’d Love to Hear from You

I’d love to hear from you, so please email me if you have any questions.  Also, if this article helped you at all, so feel free to post a comment on this website.

Stay safe,

~Jane

SassEsnacks ASMR                                                   Lizzy.  Always having fun. We miss you every day.