My Mom finally received a diagnosis last Friday. She called me early in the morning from the hospital, her voice sounding serious, and explained what the doctor had told her. She has a Pancreatic Neuroendrocrine Tumor (PNET) and they need to schedule more tests. By the end of the conversation, her voice sounded lighter for having shared the news with someone, and we agreed what a relief it was to finally have a diagnosis. She told me she would meet with the doctor in the afternoon to find out more about what needed to be done.
I got a call from my sister later that afternoon, while I was at the library with the kids, that they had released my Mom from the hospital in Calgary and her and my Dad were heading home to Medicine Hat right away. They left the hospital so fast that she forgot her pictures on the bulletin board.
They couldn't wait to get home. To me though, it felt a little weird to finally have a hold of what we were dealing with and then to simply leave. It felt like a retreat, and maybe it was, at least mentally. There is no place like home, right? With days and maybe even weeks to wait before these additional tests could be scheduled (why, why, why does it take SO LONG?) she had to go home. She couldn't stay in the hospital without some dire medical need, and with her pain under control, all she had to worry about is gaining some weight and building her body back up so that she can withstand future chemo treatments. It's still, and will probably always be, a waiting game. We get an answer that we have been waiting for and then it's back to waiting for the next answer we need. Stop and start. Up and down.
In the meantime, I've been looking around online for more information. I learned that Steve Jobs has the same cancer as my Mom. He was diagnosed in 2004 and had the Whipple procedure, which is a very difficult surgery of the pancreas. He also had a liver transplant in 2009. He's been living with this for seven years and all the while stayed involved with Apple Computer, but as of January this year, he has taken a leave of absence.
My Mom's tumor is slow growing and rare. It is not the most common type of pancreatic cancer. The most common type is adenocarcinoma and that type is usually aggressive and has a poor prognosis. A neuroendocrine tumor is often very difficult to diagnose and comprises only 5% of pancreatic cancers.
In May of this year, the FDA approved two new types of chemotherapy that have proven successful with these kind of tumors. One is called Afinitor (everolimus) and has been approved "to treat patients with progressive neuroendocrine tumors located in the pancreas (PNET) that cannot be removed by surgery or that have spread to other parts of the body (metastatic)". The other is called Sutent (sunitinib) and it's for exactly the same thing. I don't know whether these are approved for use in Canada or whether they are covered under Alberta Health Care. Let's hope so. These two drugs are the first step forward for this type of tumor in over 30 years.
The mainstay for treating these type of tumors has been Streptozotocin. It used "for treating metastatic cancer of the pancreatic islet cells. Since it carries a substantial risk of toxicity and rarely cures the cancer, its use is generally limited to patients whose cancer cannot be removed by surgery. In these patients, streptozotocin can reduce the tumor size and reduce symptoms."
There are people who have lived with neuroendocrine tumors for 20 years, although each patient is different depending on the location of the tumor, the extent to which it's grown and whether or not it's operable. We've been told that my Mom's tumor is likely inoperable, but I really would like her to see an expert who has dealt with other PNETs and find out if that is truly the case. Even if they could remove only part of it, it might make a difference to her health and prognosis. It's likely she will never be cured of this, but she may be able to beat it back and keep it at bay for many more years.
The two tests that they need to do are called an MIBG scan and an Octreotide scan. Both use radioactive material injected into the blood stream to bond to the tumor and give the doctors a precise outline of where it is located and whether or not it is in other organs. I don't know what the difference is between the two or why they need to do both.
There is a clinic at the Tom Baker Center where she will have these tests done. I still need to find out if there are any doctors in Calgary who specialize in these types of tumors and whether anyone in Alberta has been diagnosed with a PNET.
There is also a question of whether the tumor is functional or not. A functional tumor releases hormones and the doctor mentioned that my Mom would probably be getting hormone therapy, but he didn't say what kind of hormones the tumor is producing or how the hormone therapy works.
Lots of information and lots more questions. This diagnostic stage is not over yet but we are encouraged by the fact that there is a good chance my Mom can live with this for a while. It's up to her to stay on top of her diet and medical team, to make changes in her routines to account for these new challenges and to ask for help when she needs it from all of us who care about her. I hope that the Tom Baker Center has treated others with this condition and that she will receive the very best care from the very best experts. It can make a huge difference to the outcome. If you or anyone you know has experience with this, please let me know. I'd love to hear from you.
More information on Neuroendocrine Tumors:
The NET Community Video Library: What Are Neuroendocrine Tumors (Lots of great videos in this library from survivors, click on "About NETs" in the left navigation to see a list of all the videos they have.)
Carcinoid Cancer Foundation Blog: Pancreatic Neuroendocrine Tumors
Memorial Sloan Kettering: Pancreatic Neuroendocrine Tumors
Part 2: From Bad to Worse
Part 3: Waiting For a Diagnosis