In June 2013 was diagnosed with Carcinoid Cancer. The cancer was discovered via an MRI, which I underwent to better diagnose back pain and nausea. As I was considered pre diabetic and my symptoms seemed to be limited to mornings before I had eaten I believed I had finally developed full blown diabetes. But monitoring my blood sugar for a few days it was obvious not the cause so an MRI was ordered. The MRI revealed multiple masses in my liver. At first it was assumed that my breast cancer of 2002 had returned and manifested in my liver. Subsequent scans and multiple biopsies confirmed the tumors were a result of a primary “midgut” carcinoid tumor that metastasized to my liver.
The carcinoid tumors in my liver are NOT liver cancer but a different disease altogether.
I want to reiterate: This diagnosis does NOT mean I have liver cancer. I have carcinoid tumors in my liver which is a very different situation.
What is Carcinoid Cancer?
Never heard of Carcinoid? You are in excellent company, unless a medical professional most have never heard of this form of cancer. Carcinoid is under the umbrella of Neuroendocrine Tumors (NET’s). Carcinoid tumors and other NETs usually originate in hormone-producing cells that line the small intestine or other cells of the digestive tract. They can also occur in the pancreas, testes, ovaries, or lungs. Carcinoid tumors can produce an excess of hormonelike substances, such as serotonin, bradykinin, histamine, and prostaglandins. Excess levels of these substances can sometimes result in a diverse set of symptoms called carcinoid syndrome. Other NETs can produce other hormonal substances causing a variety of other syndromes.
Carcinoid and NET cancers occurs in approximately 1 in 100,000 people and is most often diagnosed in people over the age of 65, so it is a rare disease. Many patients suffer from ongoing GI issues, over 90% of patients are initially incorrectly diagnosed with Irritable Bowel Syndrome or Crohn’s Disease. From the onset of GI issues to an accurate diagnosis typically takes more than five years. NETs can cause a myriad of other symptoms, which further complicates the diagnosis and treatment of patients.
NETs are very slow growing cancers. Specialists believe my primary tumor originated over 10+ years ago in my small intestine. During that time it slowly grew and spread to my liver (the most common site carcinoid spreads to). For more information on Carcinoid and related cancers, visit www.carcinoid.org
I also believe that there is a good possibility that this is what my father had. Although not genetic there does seem to be a familial component.
As I’ve stated, carcinoid is a very slow growing cancer and at this time there is no cure. The advancements in current and future treatments combined with the specific factors of my case (proliferation rate, tumor burden, etc) lead doctors to believe that as long as I attend to it, I can expect to live to a ripe old age. “Chronic cancer”, not an easy thing to get one’s head around, but that is what I’m dealing with.
As I alluded to above, each NET patient is unique in their diagnosis and the symptoms they experience, there is no “cookie cutter” way to approach diagnosing or treatment of this disease.
At the time of my diagnosis and with limited exceptions, to this day I have felt only minor symptoms. I am very fortunate in that I have never experienced any of the GI issues so many NET patients deal with. This is one reason why I was completely unaware of my condition.
How is Carcinoid treated?
There is no cure for Carcinoid or other NET cancers. Once diagnosed, most patients undergo surgery to remove the primary tumor and if possible, some of the metastasized tumors. As I mentioned, NETs are very slow growing cancers and as such chemotherapy treatments (which attack fast growing cells) are not very effective at killing NET tumors. Because there is no cure at this time for Carcinoid or other NETs, the goal for treatment is “disease stabilization”, finding a way to disrupt the function of the tumors so that they are unable to progress. Fortunately, in the past five to ten years there have been some advancements in the treatment of some NETs with targeted radiation treatments. For some patients, these treatments are successful at killing off and/or stopping the tumors from growing for upwards of 5 years at a time.
In order to control it I am treated with a drug called Octreotide. I receive this injection monthly and once my body adjusted to it I have few side affects from this treatment.
In my case, they were unable to identify my primary tumor. So no surgery was performed. The tumors in my liver were considered to be too numerous to remove and with the primary still lurking somewhere liver surgery is useless.
This past June around the one year anniversary of my diagnosis I learned of a newer scan used in Europe and now being used at the U of I hospital. So on July 15, 2014 I under went this Gallium-68 scan. In hopes of pinpointing my primary tumor. It was only slightly better than my previous scans, still no definitive primary located. But there was a lymph node near my small intestine where it connects to the colon. This is the most common area for primary tumors and presumed to be the location of mine. I feel very fortunate to have found Dr. O’Dorisio and the surgeon Dr. Howe at the U of I Hospitals. They are the mid wests leading experts on this disease.
After meeting with Dr. Howe I have scheduled surgery for Oct 14. The procedure includes three parts. First he will run my entire small intestine looking for nodules. Remove these and any associated lymph nodes. Typically he finds 5-10 such nodules although he had one patient with 129. He can take up to 20% of the small intestine without adverse affects. If there are tumors near the large intestine he may take some of it as well as the appendix. Secondly he will remove my gallbladder as the Octreotide that I will be on the rest of my life is know for causing gallstones. And lastly he will use ultrasound in the OR to locate tumors in my liver and use ablation to essentially burn and destroy them. Typically he can reduce the tumor load in the liver by 80%.
Future Options for Treatment
Another treatment still only in Europe is Peptide Receptor Radionuclide Therapy (PRRT)
Perhaps the simplest way to explain the workings of PRRT is to think about the analogy of a magnet and its ability to attract iron shavings. Think of a neuroendocrine tumor with somatostatin positive receptors as the magnet and the iron shavings are a somatatostatin analog chemical (Octreotide) to which is bound or attached to some radioactive material (the radionuclide Y-90 or Lu-177). The receptors in the tumors attract the octreotide and this chemical with the radioactive material is absorbed into the tumor by the receptor. The radiation then starts to kill the tumor cells.
This makes PRRT a form of targeted therapy, able to impact those tumors that can absorb certain types of chemicals bound to radioactive materials.
The PRRT will be available this fall in a study at the U of I Hospital and at Mayo.
Thank you for enduring this lengthy explanation. I hope I’ve helped you understand a little bit about carcinoid and what I’ve been dealing with these past 16 months.
Most of all, thank you for understanding my need for privacy in the past and my need to share this news with you now. After dealing with breast cancer and life constantly revolving around my health I felt the need to keep my new issues private. As I really don’t feel ill life goes on as normal. I will not be posting my story on Facebook or Caring Bridges as I prefer to maintain as normal a life as possible and I am only sending this out as a way of educating others on one of those orphan diseases that few encounter.
Thanks so much and all thoughts and prayers are appreciated.