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 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
Lizzy. Always having fun. We miss you every day.
Thank you for writing this Jane, I am happy your life has resumed some normalcy although we will always miss Lizzie. Hearing about the progression of her illness makes me sad, although I knew she must have done everything in her power to advocate for herself, and she was lucky to have you there to care for her as well.
One thing, is that the “early signs and symptoms of pancreatic cancer” link is not working on this page or the home page, just FYI
Take care, I recently discovered your youtube channel and love keeping up with you there 🙂
Thanks for this information. I will look at it again. It should be working.
Take care, ~Jane
This story has haunted me from the moment I found out Sass was sick. The irony is that her symptoms are unknowingly documented on her YouTube channel. I know that you now have gone back over the footage and can hear a remark of food intolerance, or maybe hear acid gurgling from her throat (sent those ASMR mics pick up detail.)
I watch the videos sometime and I find myself in tears, screaming at the screen to pay attention to the symptoms she was having that would end up taking her life.
YouTube creators are unique in that they are not quite in the class of celebrities but they have the same adoration of fans and people watching. Sass definitely felt like a celebrity to me so it was devastating learning about her cancer.
Little didn’t know that the sadness Sass’s loss caused me would be the beginning of much worse.
A few months after Lizzie died, my mother became ill and it was discovered that she had several brain tumors with about 6 weeks to live.
Cancer will destroy the lives of all involved with no chance at living life like you once did. What’s scary is that every single one of us are equally vulnerable to cancer.
I still struggle with the loss of my mom every day. I also am beyond saddened by the loss of Lizzie too.
If there is one takeaway from all this, it is this: cancer is tangible. It’s real.
Thank you for this wonderful message. I am deeply sorry for your loss. ~Jane
I am really sorry, but my question is, why didn’t she wanted to try another chemotherapy? I mean i am not an expert but at least she would had another chance, or no?
Thank you for your comment. SassE didn’t want to try another chemotherapy because the doctor told her it would only prolong her life by a few months. She was in so much pain, she didn’t want to do that.
That is really sad. I want to learn things about cancer because my mom had colon cancer and i think i will have it too.
Hi,
I got diagnosed with pancreatitis couple days ago, I do have a lot of symptoms associated with pancreatic cancer, I went in for CT with oral/IV contrast which I pushed for, waiting for my results . I’m trying my best to stay positive. Thank you for all you did to bring awareness to this disease. I’m about same age as Sasse, when she got diagnosed, I’m single and no kids just nieces I love with all my heart. I can’t help it but I do find that Sasse and I are a lot alike, she was beautiful person and I don’t know why God took her so soon, I’m scared God is ready to take me also.
Dearest Tiffany,
I am so happy you pushed for the test! Good for you.
I am also happy that you went to see the doctor regarding your symptoms.
Yes, God took my sister too soon. He has His plans and He needed her more than we did. You are in my prayers.
Love,
Jane
Hi I have a update, no signs of PC or any kind of cancer . I was scared out of my mind. This is a wake up call to take better care of myself and to live each day to the fullest and let go of all negativity . Thanks again for all PC signs and symptoms. It helped knowing what test was the most accurate cause I would’ve known. I miss Sasse and still watch all her videos . I watch all your videos now, I always like but most times I don’t comment but I’ll start .God Bless!!!!!
Dear Tiffany,
I am so glad you don’t have PC!!!
It’s funny that you mention letting go of negativity. SassE had a lot of that in her life and she struggled with it. I always wondered if that had a part to play in her illness.
A couple of quick tips: Drink alkaline water. If buying alkaline is too expensive, add real lemon juice (from an actual lemon) to spring water and drink that all day long. You need to get the acid out of your body. If you are having acid reflux, try something call Pure DGL. It is a supplement you can buy on Amazon. Link is here: https://amzn.to/3VZyRhO. My doctors have told me that Prilosec and other antacids that are prescribed are not good to be on long term. Pure DGL really helps me and I rarely have to take a Tums. I take Pure DGL on a daily basis. These two tips will help you immensely.
I look forward to your comments on YouTube! Don’t forget to mention where you are watching from.
Again, so happy it’s not cancer, but I’m even more thrilled that you knew what test to ask for because of this website.
Take care and God bless,
~Jane