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“You have to be your own health advocate": How my neuroendocrine tumor of the pancreas was discovered

“You have to be your own health advocate": How my neuroendocrine tumor of the pancreas was discovered

Picture of Christine Rowe
Pancreatic Neurondocrine Tumor
Pancreatic Net - Health Advocacy

I am not like most people. I have an advantage because I have worked in the medical industry in my early life for about seven years in both hospitals and nursing homes in a variety of places throughout the United States. I went through Nurse’s Aide training and I received a certificate for that training. I went on to become a Unit Secretary, worked as an Emergency Room assistant; I have worked as an Operating Room Aide, worked in Intensive Care, and in a Neonatal Intensive Care Unit. I have worked on general floors, oncology units, and on surgical floors. I went on to become a Pharmacy Tech.

I was working full time during the day, trying to work my way through college, and I was going to school at night to earn a nursing degree, when I met my husband. He encouraged me to go on for an advanced degree. I did earn my B.S. in Health Science – Option Health Education, and I began my Masters in Public Health (MPH). I was not able to finish the second degree due to family obligations. I wish I had completed my MPH, but I do not regret putting family first.

Summer of 2011

In June of 2011, I was taking care of annual appointments, and I was getting the exams that I had been postponing because of more pressing health issues. That June, I was scheduled to have a routine thyroid ultrasound for my annual follow up of thyroid nodules. I was scheduled to have my annual screening mammogram – so important because my mother and my great aunt had both had breast cancer.

I went to see my liver specialist to follow up on my fatty liver – a disease called “NASH” – Nonalcoholic steatohepatitis which is an inflammation of the liver.  He asked me to have an abdominal ultrasound.

I then contacted my liver specialist for the ultrasound results. I did not need to see him since my liver results were unchanged. I asked them to FAX me my ultrasound report.

When I read the ultrasound report, I noticed that I had about a six cm cyst appearing on my kidney. I immediately went to my medical records file, and I noticed that a cyst had been imaged twice in the past during two different procedures. At that time, it had been 2 cm and 3cm.

I contacted my rheumatologist at Cedars, one of my two primary physicians. I sent her my ultrasound report, and I asked her to refer me to a nephrologist – a kidney specialist – which she did.

I met with the nephrologist at Cedars – I took her my ultrasound report. She had access to my records within the Cedars Sinai system. She ordered a CT scan of my kidney, which I had early in August, 2011.

She called me with the news – the good news is that you do not have a cyst on your kidneys; the bad news is that the mass is on your pancreas. She referred me back to a doctor who had just performed my colonoscopy who is a gastroenterologist.

The diagnosis was a mucinous cystic neoplasm of the pancreas. What does this mean?

What is a Mucinous Cystic Neoplasm of the Pancreas?

My doctors all know me. They know that I research my illnesses (and other people’s illnesses) on the best medical sites on the web. I was warned – stay away from the blogs. They can be depressing, they are not always accurate; it is better to find websites such as the National Institute of Health (NIH), the American Cancer Society, Web MD, the Mayo Clinic, and in this case, as it turns out, the University of Southern California (USC) Medical School. USC had the best website on Mucinous Cystic Neoplasms of the Pancreas. (1)

There I learned that these types of tumors are named for fluid in the tumor. Cystic tumors of the pancreas are uncommon, and they only represent 2% of all pancreatic tumors. I learned if these tumors are not surgically removed, they can lead to an invasive pancreatic cancer. Surgical removal of these tumors is associated with a high cure rate. I also learned that these kinds of tumors had to be differentiated from pancreatic pseudocysts.

The three types of mucinous cystic neoplasms of the pancreas are:

  • Mucinous cystadenoma
  • Serous cystadenoma
  • Mucinous ductal ectasia

“Mucinous cystadenomas are the most frequent cystic tumors of the pancreas and comprise approximately 50% of all cystic tumors. While these tumors are usually benign, the majority if left untreated will probably evolve to a malignant tumor. 80% of mucinous cystic tumors occur in females and the majority of the tumors occur in the younger female patient with a median age of 54 years.” (1)

“The surgical procedure depends on the location of the tumor. The vast majority of these tumors are precancerous.” (1)

“Serous cystadenoma is also known as a microcystic adenoma and is a second most common cystic tumor of the pancreas. These tumors have a honeycombed appearance on pathology that appearance is also characteristically seen on the CT scan. Diagnosis is made based on a characteristic CT scan for this tumor. These lesions are almost always benign and progression to cancer is unlikely. The preferred treatment for this lesion is observation without surgery unless the patient has clinical symptoms associated with this tumor.”(1)

“Mucinous ductal ectasia is associated with a very characteristic clinical picture. In this tumor the lining of the pancreatic duct becomes malignant and the cancer cells produce large amounts of thick mucous. The mucous often blocks the pancreatic duct causing recurrent attacks of pancreatitis. This tumor occurs predominantly in the older men with a median age of 66 years. A history of heavy smoking is frequent.” (1)

What now?

I contacted my gastroenterologist. He tracked down one of the top surgeons at Cedars Sinai that specializes in pancreatic masses. I went in for a consult at Cedars around the last week of August 2011.

He told me that he would remove this mass and the tail of my pancreas with a less invasive surgery by using modern optical techniques. He had hoped to spare my spleen. However, his assistant told me that I was not able to have my surgery right away because he is on the liver transplant team at Cedars, and I may get bumped because there were many people much sicker than I was.

I was in panic mode.

In the meantime, I contacted my liver specialist at UCLA. He asked me to come in, and he told me that he wanted the best liver and pancreas surgeon at UCLA to see me. He told me to use his name for my appointment.

Roughly the 5th of September, 2011, I went in to see this famous surgeon. He saw the fear that I had that this was cancer, and that I wanted to get it out. He scheduled me for the following Monday, and he had his extremely well organized RN handle all of the fine details of scheduling my surgery, getting me the pneumonia vaccine, and other preparations for the surgery. Remember, behind every great surgeon or special doctors, there is always a great nurse, and probably very organized assistants as well. Treat them well!

I also had to see my cardiologist for clearance for surgery that month.

My surgery

I had to be a UCLA at 3:00 AM for a 6:00 AM surgery. I was taken to the pre-op area where I changed, and I saw the anesthesiologist and the Fellow (a surgeon in additional training) that would assist with my surgery. I was sedated, and I did not wake up until late that night in my hospital room.

The mass had been successfully removed with a procedure called a partial distal pancreatectomy and splenectomy. The tumor was 6. 5 cm when it was removed. It was covering my spleen and the tail of my pancreas. The tail of my pancreas and my spleen were both removed with the tumor as one block. The removal of my spleen made me more subject to pneumonia, which is why the pneumonia vaccine was given to me that day that I saw my UCLA surgeon for the consult.

That week, again I had to advocate for my needs as a patient. I had IVs in both arms, and two surgical drains, one which was attached to suction. I had a catheter, and I had compressive stockings on a pump on my legs to keep circulation in them. I had oxygen by nasal cannula.

I could not move on my own; I was totally dependent on my nurses for the following week. I had to request that the nurses assist me with my care and to take measures that I thought would help reduce a persistent post-operative fever.

That week was about recovery; my lungs collapsed, I spiked a high fever. I thought that they were going to have to take me back to surgery that Thursday because the antibiotics were not reducing my fever. The surgeons thought that the fever was due to my collapsed lungs.

My pathology results

That Friday, my internist, my primary physician, called me in the hospital. She had read my pathology report, and she said that it was not cancer. I was overjoyed.

Later that day, some of my surgeons came by on rounds. My liver specialist was there every day to see me as well. This is the advantage of having your doctors in one place.

I was given a copy of my pathology report. I was diagnosed with a neuroendocrine tumor of the pancreas.

Wait – that is not one of the possible types of tumors I had studied. This was a whole new tumor for me to review. The surgeons as well suggested that this was not cancerous; that term is based upon how a tumor is graded. What they meant is that this tumor had not metastasized away from my pancreas and spleen to other areas.

I was referred to a neuroendocrine specialist.

Discharge and home

I was allowed to finally leave the hospital on the 8th day after I had met the appropriate milestones. I was not supposed to climb stairs. I could not lift any weight over 5 pounds. I was not to drive for six weeks.

I had to see a lung specialist to make sure that my lungs were not still collapsed.

I saw a neuroendocrine tumor specialist – an endocrinologist at UCLA. He ordered further pathology reports. I learned that this type of tumor can be located in more than one part of the body. He recommended a full body scan with a radioactive tracer. I would have been radioactive at Thanksgiving. Help! Please don’t ruin my family Thanksgiving!

 Steve Jobs dies

On October 5, 2011, Steve Jobs dies from a neuroendocrine tumor of the pancreas. This was about three weeks after my surgery, and only about 2 ½ weeks after I have been diagnosed with my tumor. I begin reading about Steve Jobs, and why he died. I am told how lucky I am to have gotten my surgery right away, and that he had waited.

A Second Opinion

I admit that I am not always the “best patient”. I do treat physicians with the respect that I believe that they deserve. And I mean that sincerely. But if you notice, I have already mentioned that in the course of a four month period, I have seen or contacted:

  • a liver specialist;
  • a gastroenterologist (actually two – I had another consult first);
  • a rheumatologist;
  • a nephrologist;
  • a cardiologist;
  • a pancreatic surgeon at Cedars; two pancreatic surgeons, surgical residents, and other members of their team at UCLA;
  • an internist;
  • a pulmonary specialist (lung doctor);
  • a neuroendocrine  endocrinologist;

 

You can see, I have contacted physicians in nine different areas of expertise in four months! Physicians today are extremely specialized. A general practitioner or internist can treat your everyday problems and most common illnesses. These other experts are highly specialized, and they usually do not discuss issues outside of their area of expertise. They will refer you to their colleagues who are more qualified in those areas.

I was researching neuroendocrine specialists. And I discovered that there were neuroendocrine tumor experts at Cedars! I contacted my rheumatologist at Cedars for a referral. She would know these physicians, and she would be able to determine which would be the best fit with my personality.

Carcinoid and Neuroendocrine Tumor Program – Cedars Sinai

When I first contacted the assistant for the physician that would later become my oncologist, I was surprised that I would be hearing directly from the physician within days. In fact, at about 10:00 PM in November 2011, just as I am preparing to have my scan with a radioactive tracer (an Octreotide scan), I got a call from the oncologist. We would go on to talk for about a half an hour. He said that I had been misinformed about some things, and that all neuroendocrine tumors are classified as cancers. (3)

 Neuroendocrine Tumors and Carcinoids

“Neuroendocrine tumors are cancers of certain endocrine cells. In addition to growing and spreading like other cancers, they have the capability of producing hormones. Neuroendocrine tumors in adults commonly originate in the small intestine (carcinoid), pancreas, lung, colon, rectum, appendix and stomach, but many other primary sites are possible. Although most neuroendocrine tumors grow more slowly than many other cancers, there are some (eg. high grade, poorly- differentiated, or small cell cancer) that grow very fast. Some neuroendocrine tumors are named by the hormones that they produce, such as gastrinoma (gastrin), insulinoma (insulin), glucagonoma (glucagon), VIPoma (VIP), carcinoid (serotonin). Adrenal pheochromocytoma, paraganglioma, and medullary carcinoma of the thyroid are names of other rare neuroendocrine tumors.”(2)

The oncologist would go on to schedule me for, if I recall correctly, an appointment within the next two days. That day, he spent two hours educating my husband and me on this very rare form of pancreatic cancer. I was told that it was too soon to have the octreotide scan; there were too many risks of false positives so close to my surgery; maybe I would need it as a baseline latter. I was scheduled for special laboratory tests that are correlated with these kinds of cancer. My neuroendocrine tumor had never “expressed itself”; in other words, unlike some patients with neuroendocrine tumors, my tumor had been asymptomatic; I had not experienced any of the illnesses associated with the types of tumors named above. I still do not know to this day which if any of those types of neuroendocrine tumor I had. The tumor had been small and growing slowly on my pancreas for years without me having any symptoms.

I would begin to have these laboratory tests, a CT scan of my lungs, and an MRI of my abdomen and pelvis every six months to rule out any new tumors. After two years of no positive tests, I asked to go to one year follow up procedures as my physician and I had discussed as a recommendation from him in the past.

TODAY

Today I am still cancer free four and a half years after my surgery. I have discussed with my family the importance of being your own advocate. These are some of the things that I tell family members and friends about doctors and hospitals, and about being your own ADVOCATE.

Dedication

This story is dedicated to my wonderful husband of 38 years – Bruce, who knows me almost as well as I know myself. He has encouraged me to pursue the educational career goals of my dreams, supported me in all of my endeavors, and has been my soul mate and mentor all of these years.

It is dedicated to my son Aaron who has displayed at an early age a concern for others less fortunate, and who is making a difference in the field of personalized medicine today. Thank you for sleeping in my room the second night after my cancer surgery.

And last but not least, to my son Andrew, who shares many of my same illnesses and who therefore has developed a sense of empathy for others with chronic illnesses. I thank you for being there for others as others have been there for you.

This is also dedicated to my Mother, Lillian, who was diagnosed with breast cancer at the age of 59. Her cancer had already metastasized to the lymph nodes at the time of diagnosis. She had not had screening mammograms before her diagnosis – this is one lesson that I took from her situation – the need for annual screening mammograms.

HOW TO BE YOUR OWN ADVOCATE

(1)   Find a physician near your home that has admitting permission at your local hospital. Some people are members of health maintenance programs, and their insurance programs assign them a primary care physician. If you are not happy with your primary physician, do not be afraid to request a change!

(2)   Review your physician’s medical license. I was responsible for my grandmother’s care when she was in her late 80’s to when she died just short of her 97th birthday. She was almost blind. I was referred to a specialist for her that would remove the cataracts from her eyes. I reviewed his medical license, and I learned that someone had died under his care. I asked my own ophthalmologist about this physician, and whether he would recommend that my grandmother see this physician.

(3)   Find out how your hospital is rated. If you have a long term illness, an undiagnosed disease, if you have some form or heart disease, cancer, or if you have had a stroke, your chances are often greater if you can go to the best hospital in your area and to a physician in the area of expertise that you need. Again, if you are in a health maintenance organization (HMO), your primary physician will refer you for a consult. Otherwise, it is good to research hospitals. One place to research major hospitals in certain specialties is on the U.S. News and World Report website. (4)

(4)   Get copies of your medical records. Some hospitals give patients access to some of their medical records online.

Keep copies of the following reports or records:

  • Keep track of the names and contact information of all of the physicians that you see. Try if you can to keep a record of when you saw them and for what reason.
  • Keep a list of all your diagnoses and your family history.
  • Keep a record of all medications that you are currently taking. Try to keep a record of what you have taken in the past and in what doses.
  • Keep a record of your ALLERGIES.
  • Keep a record of all major illnesses that you have had since birth. Keep a record of surgeries. Keep a record of accidents and injuries.
  • Get copies of medical consultations.
  • Get copies of all lab work, X-ray reports, screening mammogram reports, MRI and CT results, and results of other medical procedures.
  • If you are computer oriented, these records can be scanned into a file on your computer.
  • If you like paper, you can create a large three ring binder (I suggest at least a 5 inch ring binder.
  • Take a copy of pertinent records to new physicians if they do not have access to your records through a hospital network.

(5)   Have a Medical Power of Attorney in case you are unable at some point in your life to speak on your own behalf.

(6)   Have a Power of Attorney for assets – who will pay your bills if something happens to you?

(7)   Have an Advanced Healthcare Directive – If you have strong feelings about your healthcare wishes, you need to put these down in a legally binding health directive. They can be drawn for you by an attorney, or you can download them online from some hospitals.

(8)   Write a will. My husband and I created a will the day our first child was born. It has been updated numerous times in that greater than 30 year period.

(9)   Keep track of the medications that you take if you take them on a daily basis. I have created spread sheets that allow me to track one month of meds on one sheet of paper.

(10) Take copies of these medication lists, records of tests that you may have done at home such as fasting blood sugars, with you to your primary and other physician’s office visits.

(11)   Take a list of new symptoms, records from emergency room visits, and records of new procedures, new consults, new labs and radiological procedures such as x – rays and CTs to your physician’s office with you. Be prepared to ask your physician to explain any abnormal test results.

(12)   Be respectful of your physicians, but do not be afraid to ask for a second opinion.

(13)   Ask for medical information related to your specific needs. Ask which medical websites are best, and which to avoid.

(14)  Always take someone with you to your doctor’s visits if they are not routine visits who can be a second set of ears, take notes, and discuss what was said during that visit with you at a later time. Any visit – especially to an oncologist or another doctor for an illness like cancer – can be a very emotional experience. Someone should be there to ask questions that you may not have thought to ask, or to help you express your wishes during this emotional visit.

(15)  Do not forget to communicate to your dentist any health problems that you are having; in turn, do not forget to communicate your dental problems to your doctors. Dental problems are correlated with numerous illnesses due to their ability to cause inflammation and infections.

If you arm yourself with these tools, you or your family members may be able to ADVOCATE for you in a more educated and effective manner.

Christine L. Rowe

April 24, 2016

(1)   http://www.surgery.usc.edu/divisions/tumor/pancreasdiseases/web%20pages/pancreas%20cancer/cystic%20tumors.html

(2)   http://www.cedars-sinai.edu/Patients/Programs-and-Services/Carcinoid-and-Neuroendocrine-Tumor-Program/

(3)   http://www.cancer.net/cancer-types/neuroendocrine-tumor/stages

(4)   http://emedicine.medscape.com/article/2500010-overview#a3

 

 

Comments

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Dear Christine: I am so happy I came across your blog. You are an outstanding self-made medical journalist. I am dealing with a neuroendocrine tumor in my stomach diagnosed 10/30/02 during a routine upper endoscopy for chronic GERD. I begin treatment at Cedars- Sinai this month. I have done a lot of research and it is very rare to find a patient blog as well organized, detailed, thoughtful and helpful as yours. Your hard work is helping me. Thanks so much for this excellent blog. Deborah, Oxnard, CA

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Dear Deborah,
What an honor it is to me to receive your post. I have been a Cedars patient steadily for eleven years in many departments. I have so much respect for the physicians, the nurses, the schedulers, the lab techs - everyone that I encounter. I wish you the best of care and a long and happy life. Chris Rowe

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I’m currently dealing with an insulinoma and working with doctors at UCLA on it. Mine is super tiny, barely visible on the gallium 68 dotatate pet scan. No other scan has picked it up. The scary part for me is that it’s in a lymph node. No Primary tumor is seen anywhere on the pancreas. Normally lymph node activity means malignancy. But I don’t have any of the symptoms of malignant disease. My first symptoms started in 1998. In 2011 I fainted in the shower after having a bowl of Raisin Bran. My tumor is strictly reactive, and I found out raisins are one of my worst enemies. In 2013 my skin and my emotional health went haywire. In 2014 I started testing. I did research and knew without a shadow of a doubt I had an insulinoma. Took 2 years of articles from NIH and blood tests to prove to the doctors that I had it. I saw one doctor at UCLA who said nothing was wrong with me and that I just had depression and suggested I go to Disneyland to cheer up. I left his office in tears that didn’t stop for days.

I was a hardcore advocate for myself and am still pushing. No one is willing to operate on me though. Cause I have learned to manage this disease very well. Well........ well enough to not pass out.

I appreciate your story and your encouragement. I will still continue to fight for my health. And I hope to one day share my story from the other side of surgery.

Picture of Christine Rowe

Dear Michelle,
Thanks for posting. I did not receive notice of your comment for a couple of days after your post. I am sorry to hear about your Insulinoma, and your frustrations with your care at UCLA.
Since I am not a physician, I can only speak about my own case, and the research that I have done on Neuroendocrine Tumors.
I am glad to see that you have had the Gallium 68 dotatate pet scan. That is the best test that I am aware of for visualizing the small neuroendocrine tumors.
My tumor was removed in 2011, and I am happy that I had six years that I was without any cancer based on labs and imaging. Now, I have a local recurrence - in my pancreas.
Like you, I am confronted by the same issue - the risks of treating something very small outweigh the benefits. So I too am in what is called the "Watch and Wait" mode.
I am so sorry that you had a negative experience from the physician at UCLA. I am sure you are aware of how rare these neuroendocrine tumors are. Most physicians do not understand them - is your doctor at UCLA a Neuroendocrine specialist? I believe they have a couple of them there.
In a very recent consult I had, I was told that these tumors (my type) grow only about 1 mm per year. So the concern for me to you is whether there is anyone who is willing to do a biopsy to confirm the tumor?
If you are on FACEBOOK, there are numerous Neuroendocrine Tumor blogs including one that is monitored by a NET specialist surgeon. Also, if you are on FACEBOOK, you can private message me there.
Personally, I really understand how you must feel. I find that music, or whatever is important to you - sometimes we need to do other things to take our minds off these ongoing issues. For me, trying to help and support others is one way to have positive feelings. And having positive feelings is a way to avoid depression. Thinking of you.

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I too was diagnosed by rare chance when I ended up having emergency gall bladder surgery. The CT scan showed a 2cm nodule at the mid body to tail of my pancreas. I was immediately referred to a surgeon who suggested at that size consider surgically removing. Due the the gall bladder surgery I had just undergone I had to wait 2 1/2 months to heal. Halloween 2016 I underwent a distal pancreatectomy and splenectomy. Pathology reports showed T2 N0 tumor, basically stage 2 cancer. No chemo or other therapy was needed and by February of 2017 I started losing my hair and was found to have hypothyroidism. Which I thought was interesting due to both the tumor and thyroid are hormonal. I would be curious as to what your doctors said or if they were connected in one way or another. After two years of monitoring November 2018 my scans showed two more nodules. So I am currently waiting and monitoring to watch for growth and will continue to fight this awful thing we call cancer.

Thank you for your story.

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Since we are discussing confidential medical information, why don't you message me privately. Do you have a FACEBOOK account? You can message me there. You can also reach out to me at rowecl@yahoo.com. I do not check that email frequently, but I should see it tomorrow. I am glad to help - that is why I posted my story.

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