Years ago, when I first went to a camp for cancer survivors in the Nashville, TN area I felt like an outcast. I do not define myself by the cancer I had and so being there, around survivors and some still fighting the disease, seemed odd to me. I honestly felt like leaving out of denial that my life would forever be different and I would be bonded with so many of these people. But at that camp, I met a lifelong friend and feel I have changed, as a person and as a woman, for the better.
My friend I met there, Cindy Lovelace and I made an immediate connection themoment we met. It was like an electrical shock, someone we just clicked, laughed about the same kind of things and saw life very similarly. It felt like an old comfortable shoe, except Cindy doesn’t look worn and tattered! She is vibrant, dynamic, and has an energetic personality. Cindy’s faith in God is as strong as any clergy that I have known. With an unshakable faith and deep abiding respect for human life, all the moments that make up a lifetime seem to matter to her. And yet, so many of us wonder why such a strong, sharp intelligent woman would have to get re-diagnosed with cancer. Not only does she live with cancer, but it is a more rare type, Neuroendocrine Cancer, a word I can barely spell or say.
Cindy has approached this like so many other things, in the years I have known
Though many of us that love her pray reverently to God for a cure and for her long lifeline, she focuses on where she can make a difference with her life. Mostof us are much more affected by her disease than she is, mentally anyways. She sees it as another opportunity to grow, a reminder of the preciousness of life and as a cause she needs to educate others about and help raise resolutions, research dollars and overall awareness.
With that in mind, I asked Cindy, who is currently the President of Healing Net Foundation, an organization that devotes all its energy to Neuroendocrine Cancer, to address a few questions. What follows is her responses, immediately after the questions stated by a novice, unfamiliar with this type and wanting to know more. I hope you find this extremely informative and pass this information on to anyone who has ever battled something that seems incurable.
How common is neuroendocrine cancer? Neuroendocrine (or Carcinoid) Cancer is considered rare, but my experience and the experience of so many people being diagnosed in the United States, is starting to challenge exactly HOW rare. The best guess is that 5,000 people will be diagnosed in this country each year, but I feel those numbers are rising rapidly. It could be because of better diagnostic tools, more awareness, or unfortunately, an increase in the incidence of the disease.
Is there a common profile or demographic type that develops this type? It is diagnosed in children all the way to older adults, although the most common age seems to be around 45. Male and Female
How much current research is going on with this type of cancer? Is the research focused on cures, treatment or prevention? Research in the United States is in pockets at best. One example is the University of Iowa, which was just recognized as a Center of Excellence in NET research. The team there is led by Dr. Thomas Odorisio (Endocrinologist) and his wife Dr. Mary Odorisio (Pediatric Hemotology) Both of these physicians gravitated to treating neuroendocrine patients because of an influx of cases, and are now regarded as one of the few experts in the U. S. Right now most research is focused on treatment and cure. No one knows exactly what causes it. However, most of the research as well as the latest treatment options developed in Europe, and as a whole, Europe continues to outpace the U. S. in the advancement of care for neuroendocrine cancer. The grandfather of Neuroendocrine cancer research is considered to be Dr. Kjell Oberg of Uppsala University in Sweden.
What are warning signs you might have this type of cancer? Do GPs have this information and know to look for it? It’s complicated. Some patients present with symptoms that mimic GP disorders such as Crohn’s disease, IBS, etc. These symptoms can range from flushing (face red/purple) to diarrhea and stomach cramps, even a racing heart. However, some patients have NO symptoms and the tumors are found incidentally when tests are run for other reasons. Patients with symptoms can be misdiagnosed for years and treated for benign disorders when they really have cancer. It is a slow growing cancer, but can be insidious and eventually vicious if not found and treated properly. As to whether GI’s have this information: Maybe. Maybe not. Most physicians are told in medical school they will be lucky to see even one case in their lifetime. So they are not prepared to consider the disease as a possibility and tend to treat first for the more benign disease this cancer mimics.
Are there screening recommendations for neuroendocrine cancer as there are for many other types? Not really unless a physician suspects. Then you can run some blood tests that could show some unusual elevations in gastrin, chromogranin A, glucose, etc. This is a cancer of the hormone producing cells, and that is also what makes diagnosing this cancer so tricky. There are all kinds of hormones are bodies secrete, and finding who is causing the trouble, and why can be very complicated.
How do you diagnosis it for sure, a particular test? It is usually diagnosed when a tumor is found, biopsied and stained. Then you know it’s neuroendocrine and can also tell what grade it is. The higher the grade the more likely it is to metastasis. This cancer is slow growing, but it does metastasis. The most likely place it goes whether the primary is in the lungs, pancreas, intestines, stomach, female organs, etc…it the liver. There is another hidden element of this cancer. It tends to NOT show up on traditional scans. CT scans MIGHT catch it, and even the MRI is known to miss it. There is a new scan, used in Europe for several years, called the Gallium 68. It is still in clinical trial in the U. S. even though the first trial was begun at Vanderbilt in 2011. I was actually one of the first to take that scan. A neuroendocrine tumor had been found in my pancreas and removed but my doctor, Dr. Eric Liu, suspected it might have already gone to my liver. An MRI was negative. Less than 30 days later I had the Gallium 68 and two tumors in my liver lit up. This diagnostic test can be a lifesaver. FDA approval is said to be imminent, but it cannot happen soon enough to help so many people. Sometimes this cancer is diagnosed because the patient has not responded to treatment of the benign diseases it mimics, but then, the cancer might have progressed and metastasized beyond surgery.
Are you ever totally healed from it or does it just go in remission? At this point, you are never healed, and while you can go in remission, many patients live with the tumors until they become bigger or cause enough trouble to need to be removed. That is my case. I have tumors in my liver. Some have been removed, others are still too small to be seen. This cancer tends to “seed” the liver, therefore the tumors grow at different stages.
Is there an increase in this type in recent years? I think so, but I cant prove it. My work in establishing the Healing NET Foundation to focus on awareness and education of the medical community at large has brought me in contact with a lot of new patients, and the list grows every week.
What is the success rate in treating it in the early stages? It is very successful if you catch it early and there are folks now who have been living with this cancer for 20+ years. However, there is the problem that it’s so difficult to diagnose, and especially so in people with no symptoms.
If caught in later stages, what is life expectancy? Even in later stages, people have been, at the very least, greatly helped in their daily quality of life and the prognosis can be several more years. Again, it depends on where it is, when it’s diagnosed, and if you are fortunate enough to be seen by an expert who really understands the disease. There are many many sad cases of people who were given incorrect information and either not given enough treatment or given too much treatment.
Who is highly involved in research in this field since it is not as well known? Is it being studied overseas, other countries? Europe. very few in U. S.
Which country is the most advanced in their diagnosis and treatment of neuroendocrine cancer? Sweden and Germany
What percentage of oncologists specialize in this type? There are some specialists who understand it, and treat a lot of patients. My doctor, Dr. Eric Liu, a neuroendocrine cancer surgeon, has recently opened The Neuroendocrine Institute at Rocky Mountain Cancer Centers in Denver. Dr. Richard Warner (GI) at Mt Sinai in New York established the first center on neuroendocrine and carcinoid in this country. I mentioned Drs. Odorisio at U of Iowa. There is also Dr. Eugene Woltering and team at Ochsner in Louisiana. There is an expert oncologist at UK Markey Cancer Center in Lexington KY—Dr. Ed Wolin. Dr. George Fisher at Stanford was one of the physicians who treated Steve Jobs, whose neuroendocrine cancer caused him to seek a liver transplant and he died from complications of that surgery. But these and a few others are just pockets of physicians in the U. S. There are major cancer centers who do not have experts, and unfortunately people go there expecting the top treatment, and well, doctors don’t know what they don’t know.
What is the one thing no one knows about this type of cancer and they should know? It is misleading to refer to a neuroendocrine cancer in the pancreas as pancreatic cancer. It’s not the same as the more common pancreatic cancer. Same deal in any other organ. This cancer should not be treated the same as other types of cancer. It needs a physician who has had a lot of experience, and is aware of all the latest research and treatment options. You can live with this disease many years IF you find the right doctor.
For additional information and to support research and awareness in this field, please click on the link to the website below.
The Healing Net Foundation http://www.thehealingnet.org/
You can follow this organization on Facebook the healingnetfoundation
or on Twitter @HealingNET1