Category Archives: Carcinoid Cancer

A neuroendocrine tumor (cancer) that generates endocrine fluid which will make the user sick. It is incurable. It is called carcinoid if found in the gut or lungs.

Carcinoid and Results Based Medicine and Me

After over 4 years of battling my HMO and my oncologists to get the treatments that I knew were recommended by specialists in the field, my oncologist finally sat down and told me that she would likely have arguments over any orders of my new Carcinoid Specialist (her current objection is simply some new blood tests). She told me why… The HMO and she are committed to results based medicine. As a result, I am leaving her and the Kaiser Permanente HMO.

Caution, these thoughts are my understanding and opinions.  I am not a medical professional.

As a statement, “results based medicine” sounds good and if your disease is well known and thoroughly studied, it possibly is good. Results based medicine (also known as Evidence Based medicine) means basically the physicians will only use medicine and treatments from well designed and conducted research.  In addition, the results of that research should be made available to physicians through guidelines from professional sources, guidelines and checklists.  This is great. It tends to protect the patient and the doctor and make the doctor’s work more efficient.

Why then must I leave my insurance company? What does “results based” mean to me?

I have neuroendocrine cancer. This is a disease which is rare and poorly understood. There are very few medicines or treatments which qualify as “results based”.  In fact, my doctor has complained that there are no guidelines for neuroendocrine cancer (there are guidelines but they are not 100% results based).  The only treatments that qualify as “results based” are a couple of drugs that treat the symptoms and might inhibit tumor growth a bit and maybe a treatment called embolism which has been used for many liver cancers for years.

That means that my doctor and my HMO believe that only my symptoms should be treated by a limited number of drugs which are known to stop working after a few years and that the doctors will monitor the progress of my disease with a limited subset of the possible tools to check how sick I am. Actually it is not really very important to monitor the progress of the disease because they do not allow themselves enough options to change the strategy anyway. To me: this is something like ongoing hospice care, by which I mean they only attempt to keep me comfortable while the disease kills me.  It amounts to a refusal to treat me with the advancements currently being made and known by the specialists in the field. In fact, my doctor evidenced disdain for specialists.  Note that most neuroendocrine specialists treat more cases in a month than my oncologist or any nonspecialist oncologist will treat in their entire career. The specialists might know something that the others don’t.

Should I be satisfied to get sick and die because those doctors have committed to only certain standards of treatment?  I don’t think so.

I think that any patient with neuroendocrine cancer or any rare or unusual disease should find out if their docs follow only “results based” medicine or not.  I think that, ethically, doctors should be obligated to tell patients what that decision means for them instead of playing verbal games when the patient suggests a new treatment. If their doctor claims to strictly “result or evidence based medicine”, any neuroendocrine patient should get away from that doctor or insurance as far and as fast as they can.  That doctor will not treat the disease.  The patient will likely get sicker sooner and die earlier than need be.  We patients do not have the obligation to die for the doctor’s beliefs.

I have wasted 4 years battling doctors/insurance who only wanted to treat symptoms. when I asked for a standard tumor lab test called Ki-67 which measures tumor growth rate, they answered “Why? The treatment would not change no matter the rate.” Anybody who has dealt with cancer knows that how fast it is growing is very important.  By being obnoxious I managed to get chemoembolism but that only worked for a few months.  After getting progressively sicker for a year and being told that surgery as a treatment was not proven in a double-blind study and that it might kill me (true but not likely), I went to an outside doctor who wrote an opinion that I should have surgery as soon as possible. My oncologist caved and approved it but was never happy about it even though I have felt better in the two years since the surgery than I felt in the 3 years before the surgery.

Thank goodness for Medicare and the Affordable Care Act. Thank goodness that this month is the Medicare Open Enrollment Month.  Changing Medicare Advantage Plans was easier than I thought it would be.  I should note that I had to go to a Medicare appeal process recently after the HMO denied a request for referral to the specialist. They then denied my appeal.  Medicare requires that they get to review a denial of an appeal.  Medicare reversed the denial saying this:

“The enrollee has been proactive regarding his disease and although carcinoid tumors are often seen by medical oncologists and surgeon, it is not their major interest; new regimens and drugs are always being considered.  Consulting with a specialist in his disease would be appropriate for this patient.”


“Our MAXIMUS Doctor Consultant says that the enrollee should be allowed to consult with the OON (out of network) specialist due to the plan’s network having insufficient expertise in this enrollee’s condition.”

Now I have changed plans, I can have my Carcinoid Specialist as my normal oncologist, not just a consultant. The problem is that now I also have to select a Primary Care Physician, a Cardiologist and a Cardiac Electrophysiologist and a Urinary Surgeon but it’s worth it.  I already feel better.

May we all have the best possible outcomes,


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Remarkable trip to Scotland

Thursday evening we returned home from a ten day trip to Scotland where we visited our son Derek, his wife Kat and our sweet 2.5 yr old grandson Ansel.

Kat, Ansel, Derek
Kat, Ansel, Derek

We also spent two full days in Edinburgh seeing and re-seeing the sights and museums.

Why was it remarkable? There were two reasons:

  1. The weather was dry and partly cloudy with highs in the mid 50s Fahrenheit. For this time of year that’s unusual.
  2. Very little trouble with carcinoid syndrome especially the diarrhea.

The carcinoid syndrome always happens when I travel but this time I used a prescription recommended by the carcinoid specialist that I saw three weeks ago. It was diphenoxylate/atropine (Lomotil).  It worked quicker and more reliably than the over-the-counter remedy which I had been using Loperamide Hcl (Immodium).  The Immodium worked but I had to take more than recommended and it took hours sometimes.

We walked for quite a bit in Edinburgh, Anstruther and St. Andrews.  I was disappointed that I am a bit weaker than I used to be (not a big surprise).

We had a lovely time visiting Derek, Kat and Ansel.  Spent a lot time spoiling the little guy.  That’s what grandparents are for!


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My first consult with Neuroendocrine Cancer Specialist

The consult with Dr. Liu was today and it was wonderful.

No change in the treatment is recommended. He says the known tumors are too small to do anything about. He is also not concerned about unlocated primary.  It’s common and could even be hidden in the liver on some structure.  I have never heard that before!

He believes that the lump in my breast “feels like a carcinoid” and should be removed and biopsied.  He says that the sample should compared to the previous biopsy from my liver. I did not really understand why, but that is supposed to make the neuroendocrine diagnosis easier. If it is carcinoid, no other action is necessary.

He has requested three new blood tests that should be sent to ISI for analysis.

  • 5-HIAA, plasma not urine
  • Neurokinin A (substance K)
  • Substance P

Some other symptoms that I have which I thought might be carcinoid related (sudden blood pressure drops, breathlessness), he thinks not. He recommends more work with cardiology.

All in all, this is good.  My neuroendocrine cancer is stable. I happen to feel well currently also.

May we all have the best possible outcomes,


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Colorado Carcinoid Cancer Support Group – September 2015

We had a great quarterly meeting of the Colorado Carcinoid Cancer Support Group.

  1. There was some discussion of the value of CBD (the non-psychoactive part of marijuana).  Some members are getting pain relief and perhaps other benefits such as sleep. A couple of members are also being treated with mushroom formulas from Chinese medicine.
  2. I talked about how Medicare had reversed my HMO’s denial of a referral to a specialist and how I had filed the appeal.
  3. Jeanne could not be at the meeting to talk about the Midwinter Conference.  We do know that it is planned for February 6, 2016.
  4. We had planned to distribute the Healing NET Foundation booklet for physicians but it has not arrived yet.  However, one of our members said that it can be downloaded from the website: Healing NET Healthcare Professional Resources. The name is “NET Primer for health care professionals”.  We hope to get the shipment of booklets soon.  I can distribute it from my home if anyone needs it.  I plan for my oncologist’s office to have several copies.
  5. As we did last time, we went around the table and each described our journey with neuroendocrine cancer. This is moving and informative.  I personally learn something every time.  There is definitely great emotional benefit from being able to sit face-to-face with others who have the same disease and discuss the problems, symptoms, treatments, doctors and the good and the bad.

We all get so involved in the stories and discussion that the meeting lasted three hours.  I am very grateful to be part of such a group.

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Another Fishing Trip 2015

This time, my friends and I went to Salida, CO and fished the Arkansas River.
For me, the fishing was tough. I did not catch many. A couple of my friends did much better. However, in true Colorado style, the day time temperatures were in the mid 70s Fahrenheit. They dropped to the mid 40s during the night. The weather was great. Always remember this: “Trout don’t live in ugly places.

We did not camp this trip, we rented a house in Salida. It was new construction and quite comfortable. Two of the three nights, we cooked our suppers. One night we ate at a restaurant that we had not tried before. It was pretty good. We cooked breakfast every morning and prepared a lunch of sandwiches and apples for lunch.

My friend Ed was driving us back to his Frisco condo on the last day. However, he had volunteered to do a river watch. The river watch consisted of 4 or 5 volunteers and a couple of National Forest people going to a stream named Chalk Creek in the area of a ghost town named St. Elmo on Mount Princeton.

We checked five places on the creek for width, structure, water temperature and oxygen content, took samples for water quality chemistry and collected underwater insect life to be analyzed by a specialist.  This is the website: River Watch Colorado

By the time we met and drove up the mountain and onto rather rough jeep roads and checked the five places, we worked about 6 hours.  It was rewarding and fun.

There was very little problem with my carcinoid cancer.  One of my friends brought a large amount of chocolate goodies and I’m afraid that I cannot resist it when it’s easy to get.  My carcinoid syndrome did occur after the second day of eating too much chocolate and stayed with me until I got home.  A short explanation of this can be found in my blog post: Carcinoid doesn’t like chocolate.

I hope my readers can have such fun and rewarding times with good friends!


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Amazing things do happen!

Today was a great day! Medicare reversed a denial and is requiring my Medicare Advantage insurer to cover my consultation with Dr. Eric Liu who is a renowned specialist in Neuroendocrine Cancer and who is now in Denver.

The background is this: At my request, my oncologist wrote a referral to Dr. Liu.  She warned me the the Medicare Advantage HMO would probably not approve it.  She was right.  They denied the referral saying that the HMO had the knowlege and facilities to treat Carcinoid Cancer within their network.

They have an appeal process.  I wrote an appeal and included the NANETS 2013 Guidelines for the Diagnosis and Management of Neuroendocrine Tumors and the NANETS 2010 Guidelines.  These guidelines were unknown to the oncology dept. where I am treated until I showed them to the doctors.

The HMO denied the appeal, but, because this insurance is a Medicare Advantage plan, Medicare requires that they get to review the appeal and denial.  After review, Medicare reversed the denial! The health insurance is required to pay for my consultation with Dr. Liu.  Socialized medicine worked for me!

I will certainly blog about my visit with Dr. Liu after it happens next week.

In other news, I am going fishing again tomorrow for three nights.  We are not camping this time. We are renting a house in Salida, CO on the Arkansas River.  The weather in Colorado has been amazing and I am looking forward to good weather and good fishing.



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Another Camping Trip!

Yesterday I got back late from 4 days, 3 nights sleeping in a tent and fly-fishing in Wyoming about 20 miles down a dirt road from Encampment. What a great trip! There were three of us, all over sixty ( two if us are 68). We each had a poor day of fishing. We all had very good days of fishing.

I was very happy that I had two days of almost exclusively dry fly fishing over rising trout (and catching them). Each of us had a best combination of flies. I fished a big fluffy stimulator and a quite small (size 18) parachute blue winged olive behind it. Even when I could not see the small fly, I could see the big fly jerk when the small fly was taken. Of course, a couple of exceptionally hungry fish took the big fly for some extra fun.

I had a kind of scary episode. The first morning one of my friends and I walked about a mile in our fishing gear over a rough jeep track to a point where we could wade across the North Platte River. It was knee high at worst and about 20 to 30 yards wide. It’s the kind of river that the bottom is covered with both round and irregular, slippery rocks (think greased bowling balls). Almost half way across, I was gasping for air. I could not seem to get it into my lungs. After standing in the current for a few minutes I was able to wade back and sit on a rock for about 15 minutes. I decided to fish closer to camp and walked back. The fishing was worse near camp and I only caught one fish the whole day. That’s my bad day. Why did I have the attack? We don’t know. It could be an effect of carcinoid cancer. I have had it a few times before. It could be heart. It could be asthma (I tried my friend’s albuterol inhaler and it did no good).

The second day we took a four wheel drive SUV on the jeep track and I still lost my wind a bit just before I finished crossing the river but I made it. The fishing was great on the other side after we walked another half mile on rough game and cattle trails. I never had another problem breathing.

The daytime temperature got to perhaps 72 degrees F.  Bright sun all day.  Nights got pretty cold.  You could see your breath in the morning when you got up.  It was probably below 40 degrees.  The campfires were good.  The milky way was magnificent.  Only two other campsites were occupied.  In other words, it could not have been better.

That must be one of those best possible outcomes that I mention from time to time,


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Travel, Fishing, Bladder Cancer, Misc. August-13-2015

Travel, Fishing

Sunday through Wednesday I had the pleasure of staying with a friend in Frisco, CO. Frisco is a small town in the mountains of Colorado at about 9,075 ft. (2766m.) altitude.  It is near several well known ski resorts. The first day there we had the pleasure of walking around an outdoor art festival in the Frisco Main Street. Then, we drove to the Copper Mountain Ski Resort to their Guitar Town festival which featured an outdoor stage. On the stage all day, well-known electric guitar players and their bands entertained us. It was free and very much fun.

On Monday, we drove to the Arkansas River and fly fished there for a couple of hours with no luck. Then we drove toward Independence Pass and fished the Lake Creek which feeds Twin Lakes.  We were likely over 10,000 ft. (3048m.) altitude. The fishing there was great!  We each caught rainbow trout in abundance and my friend Ed also caught a brown trout and a brook trout.  We had the creek to ourselves and a beautiful Colorado day.

Tuesday, guess what? Another beautiful Colorado day! We decided upon an adventure and drove over Ute Pass to fish the Williams Fork River.  We took a road that we were unfamiliar with.  Right where it dead-ended on the west side of a huge molybdenum mine, we found a tiny creek called Darling Creek.  We fished a small hole near the road and caught numerous brook trout in a short time.  Then we drove back along that road a few miles and fished an area of the Williams Fork River that we had never fished before.  Again, we caught many brook trout and Ed caught a larger rainbow trout. It was an exceptionally beautiful place even for Colorado. “Trout don’t live in ugly places.” Again we were well over over 10,000 ft. (3048m.) altitude. This second day of fishing tired me a bit and I certainly got winded climbing steep river banks and wading the rivers.  I believe most people would find activity at that altitude a challenge, so I feel good about it.

Wednesday morning I drove back to Denver (a mere mile high or 1609m. altitude.) and went to a followup meeting with my urological surgeon.

Bladder Cancer

Great news!  The cancer is very low grade, not aggressive, below T1 grade in the T0 to T4 grading system. However, it often recurs. We decided that I would not need the followup BCG treatment unless the cancer does recur. The doctor had put some kind of chemo in my bladder during the procedure two weeks ago and it was removed the next day. This is supposed to help prevent recurrence.

We also decided to avoid surgery for my overlarge prostate gland, if possible.  I am now taking a second medication to try to control the symptoms that I have from BPH (benign prostatic hyperplasia).


Today is Thursday.  I started on my normal morning walk.  Immediately I noticed that the pains in my intestinal area were a little worse than normal.  People with mid-gut carcinoid cancer often have pain in our gut. In my case, I don’t usually have it every day, just some days and it is usually very low intensity, not enough to hamper activity.  It can be on one side or the other or both. Sometimes it is in the liver area but more often lower than that. Today it was a little worse, on both sides but not the liver, but I decided to power through it and keep walking.  The pain never changed neither got worse nor better. I think maybe it is the disease’s (or just my old body’s) reaction to the changes in altitude.

Also, my spine with a degenerating disk and arthritis was bothering me.  This was probably worse because of the wading and walking in the mountains.  Wading has been compared to walking on greased bowling balls.  The streams this week were a smaller gravel so not as bad as large stones but still the factors of walking, balancing, slipping and stumbling in a river do stress my back. I am 68 years old and many people have quit fly fishing by that age.  I am lucky to be able to continue with it.

I was able to walk about 3.6 miles.  Not as much as I had set out to do, but acceptable in the circumstances. In meditation studies, I have learned that pain is a teacher.  I know many spiritual paths believe that.  With meditation, we attempt to learn to just sit with our pain, whether physical or emotional, and embrace it (cuddle it like a baby is one teaching).  Once we have recognized, acknowledged our pain, we are taught that we can live with it more readily. Thus far, these studies are helping me.

May we all have the best possible outcomes,


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Update on Bladder Surgery July 29, 2015

Five and a half hours ago, bladder cancer surgery was finished. The surgeon was pleased with it. He was able to apply some chemo to the site which might help prevent recurrence. He says the cancer is low grade type but does tend to recur often.

Everyone was well versed in the octreotide protocol, which they called the Woltering Protocol. No carcinoid crisis happened so far but they will monitor me through the night. The pain is well managed. I am in an intermediate care unit. That’s one step down from intensive care.

In two hours the nurse says that I will be taking a walk and I feel good with that! I will be taking a nap now to be ready.



EDIT:  July 30, 10:00 am, Being discharged!

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Another Cancer Treatment

I reported in the previous blog: A Beautiful Colorado Day, But… about a month ago that the bladder cancer has recurred.  It’s very important to treat this cancer quickly, so the procedure is scheduled for Wednesday, July 29 at 7:30 AM.  I have to be at the hospital by 5:30 AM!

The procedure is to scrape the inside of the bladder to remove all traces of the cancer.  Since this was done already about a year ago, they have to scrape an extra layer of cells from the bladder lining.  This can be a bit dangerous as the deeper they go, the higher the likelihood of puncturing the bladder.

I had the pre-op meeting last week.  Since I have carcinoid cancer, extra precautions have to be taken when I am under anesthesia to prevent carcinoid crisis.  I reported here: Busy Cancer Day , about my pre-op meeting last year and my preparations for it with information for the physician’s assistant who met with me.  I was prepared again with all that information since I did not know who I would be meeting.  It turned out to be the same PA and she had already looked up all the information that she had scanned into my patient record last year.  She is trying to get the same anesthesiologist since he already knows the protocols for trying to prevent carcinoid crisis.  If he cannot be scheduled then we have to make sure the anesthesiologist assigned to me has all the information and is prepared a week in advance.  The large amount of octreotide required in the protocol needs to be ordered from the hospital pharmacy at least three days in advance because they do not carry it in stock.  Obviously, having a cancer is pretty inconvenient and fearful.  Having a cancer and a second, rare cancer is even more so especially if that rare cancer wants to kill you when you get anesthetized.

The bladder cancer procedure is said to be a “day surgery”.  In fact, the patient is scheduled for one night in the hospital.  In my case, I will be scheduled for one night in the Intensive Care Unit (ICU) because of the carcinoid crisis danger.  Some of the intensive care nurses and I already know each other by name and sight; I have been there 4 times in 4 years already.  They say that I am the only patient that gets discharged directly from ICU to go home rather than to another ward or worse (that’s happened twice; once the staff applauded).

If you can, think kind, gentle, healing thoughts and/or prayers about me Wednesday, July 29 at 7:30 AM.

Namaste (I bow to the divine in you),


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Taos Trip and Other News

Last week, Laurie and I drove down to Taos, New Mexico. It was a quick two night trip.  It’s about 290 miles driving.  We had a good time.  We drove to Walsenburg, on the interstate highway then a side trip to the Great Sand Dunes National Park for a quick, slightly rainy visit, then took La Veta Pass over the mountains to Taos.  Coming back, we drove through Angel Fire to Raton, New Mexico, then over Raton Pass on the interstate back to Denver.  Great scenery both ways.

The southwestern food there is to die for.  I could not resist even though I knew I might have some Carcinoid Syndrome due to all the peppers in the food.  I did get it but not until we got home (that liver surgery two years ago has done so much for my quality of life!)

Taos is famous for the art of course.  We visited galleries and a museum.  We also visited a historic cemetery where the famous scout, Kit Carson is buried and walked the historic plaza and part of the Paseo.

We drove to the Rio Grande River Gorge which has a famous steel bridge across it that was built in the 1960s (565 ft. high, second highest bridge in the US highway system).  There we also saw some southwestern Indians selling handmade jewelry.  Laurie bought one or two pieces. We also visited the Angel Fire ski area but there is not much there in the summer.

Cancer News:

Kaiser Permenente HMO has denied a referral to a carcinoid specialist, claiming that they do everything that’s needed to treat the disease.   I have filed an appeal.  I am investigating changing insurance.  I think that I will probably pay for this first visit myself for a second opinion.  If he specifies a treatment that the HMO won’t or can’t do or if he specifies surgery, I will have to drop the insurance for sure.

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A Beautiful Colorado Day, But…

It’s a beautiful Colorado summer day.  The sky is blue from horizon to horizon.  The temperature is a comfortable 80 or so.  Just had a four and a half day walk to clear my head and enjoy being here.

But, I saw my urological surgeon for a checkup this morning.  The bladder cancer has come back.  I will have to undergo the same procedure that I had one year ago and probably some other treatments after that to try to prevent recurrence.  I was told that there is a 50% chance of recurrence a year ago.  My brother David has also had all of this happen to him just six months ahead of me.  For both of us, there is a high survival rate if it is treated quickly.

In addition, I had a blood test for blood sugars today and the results are already back.  Slightly higher than the maximum range. There will be all kind of diabetes noise from the doctors.  I will have to make sure that they understand that Sandostatin LAR that is injected into my rear end every 28 days for Carcinoid cancer is known to cause a lot of variance in blood sugar level in some patients.  I am thinking of trying just one injection a month meaning 20mg rather than 40 mg a month since my symptoms are very little or non-existent right now.  The only troubling thing is that Sandostatin has now been proven to slow the growth of Carcinoid tumors as well as treat the symptoms.

As of January this year, another drug called Lanreotide (trademark Somatuline) was approved for slowing the growth of Carcinoid cancer and is known to control symptoms in many patients.  I mentioned it to my oncologist a few month ago and it seemed that she had never heard of it and thinks that it is not in my HMOs formulary.  I may need to start a crusade for them to accept that.  It is known to work often for patients who cannot tolerate Sandostatin because it makes them sicker.  Specialists are beginning to switch patients who have experienced atrial fibrillation (like me), varying heart rates (like me) and varying blood sugar levels (like me) because all those can be side effects of Sandostatin. The injections are supposed to be less painful as well.  I wonder how hard I will have to work to get that.

I am co-leader of the Colorado Carcinoid Cancer Support Group ( Last week 30 of us had dinner with Dr. Eric Liu, a renowned specialist in carcinoid who just moved to Denver and has started a carcinoid clinic.  There are so few clinics like this and he is already well known… Patients are already planning to come to Denver from all over the country.  I am planning to find a way to get my HMO to refer me to him (and pay) to form a treatment plan.  If surgery is a necessity, I will again find a way to refer to him (and pay) because he is a highly skilled surgeon who has handled only carcinoid patient for years.  He sees more carcinoid patients in a week than the clinic I go to with six oncologists sees in a year.  For my health, if I have to, I will leave the HMO and seek other insurance.  This is difficult because in all ways but the rare disease (even there they are better than many and I feel they care) I have been well cared for and I would lose all those doctors.  Leaving my insurance would be impossible were it not for the Affordable Care Act and Medicare because no insurance would voluntarily cover a someone with a rare and expensive cancer.

I guess we will have to wait and see how all of this works out.




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Lesions and Tumors and Cysts, Oh My!

You may have read that a new lesion was seen on my liver a couple of weeks ago.  Even though I had my first  Dx (diagnosis) 4 years ago, I still have to think twice about what the medical people mean when they say lesion or tumor or cyst.

Four years ago, I had a bad cough.  My PCP (primary care physician) could not determine what it was, even with a chest x-ray.  So he ordered a CT scan.  The next morning I had the CT scan.  That afternoon he called and told me to go to the hospital immediately. Not for my lungs but because the CT scan had showed a large mass in my liver!

I spent about five days in the hospital.  They took a sample from a small spot on my lungs and determined that it was only a virus colony.  They never even treated it and the cough went away.  I was seen by seven doctors and interns.  The thing in my liver was being called a cyst.  It  was just about 6 cm which is almost as big as a tennis ball.  They put a drain into it in a CT scan assisted procedure.  Fluid drained from it for four days.  The fluid was sent to the lab for biopsy.  My understanding is that it was sent back to the lab several times for more tests because every test they did came back negative.  The sixth day I was sent home.  They said that they thought it was a benign cyst.  One doctor asked for more tests.  The day after I went home, he called.  The lab finally had done a test which told them that the cells were consistent with neuroendocrine tumor.  The doctor said “I don’t even know what that is, but it is a cancer.”  The next day I had CT scan assisted needle biopsy.  The biopsy was conclusive for neuroendocrine cancer, specifically carcinoid cancer.

The following definitions are from the Merriam Webster MedlinePlus Medical Dictionary.

  • lesion – an abnormal change in structure of an organ or part due to injury or disease; especially : one that is circumscribed and well defined.
  • tumor – an abnormal benign or malignant new growth of tissue that possesses no physiological function and arises from uncontrolled usually rapid cellular proliferation—see cancer .
  • cyst – a closed sac having a distinct membrane and developing abnormally in a body cavity or structure.
  • benign – of a mild type or character that does not threaten health or life.
  • malignant – tending to produce death or deterioration <malignant malaria>; especially : tending to infiltrate, metastasize, and terminate fatally <malignant tumors>.
  1. I question that a 6 cm (2.4 in) sphere in your liver is benign in any case, but I’m not a doctor.
  2. It appears that both  tumors and cysts can be lesions.
  3. Tumors can be cysts and vice versa.
  4. Lesions, tumors, cysts can all be classified as benign or malignant.

It does not appear to me that the above are used very consistently by the medical profession.

Notice the phrase in the tumor definition “arises from uncontrolled usually rapid cellular proliferation”.  Neuroendocrine cancer growth is uncontrolled without question in my opinion.  But the “rapid cellular proliferation” part trips up many practitioners and their patients. Doctors and patients alike are used to thinking of cancer as fast growing.  Patents are sometimes told that their neuroendocrine cancer is not malignant or even not cancer.  Absolutely not true! Neuroendocine/carcinoid is recognized as a cancer (See the NIH Types of Cancer).  So it is recognized by the National Institute of Health (NIH) as a cancer. It is typically malignant even though slow because it metastasizes readily (according to the NIH carcinoid cancer is about 80% likely to metastasize) and grows much larger sometimes in the metastases.  It is dangerous to the patient’s health also because it can typically generate neurotransmitters uncontrollably.  These things like serotonin, gastrin, insulin and others can cause many health problems and ultimately death.

Well now maybe I will have that straight the next time I think about it.



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Carcinoid and Scanxiety

A couple of months ago my fellow NET cancer blogger Ronny Allen wrote a blog which he  called No Fear about the fear some people experience before their routine scans checking for more cancer.  We often see this called “scanxiety”  He has no fear before those scans and neither do I.  They keep us healthy by allowing us to know what needs to be addressed.

However, I certainly have found I can get anxious if the results are reported to me late as happened last week.  And I can be downhearted when the results are poor as they were last week.

I think it would be instructive to look at my annual schedule of meetings, tests and treatments relating to carcinoid cancer. This is not an unusual schedule for carcinoid cancer.  Bear in mind that this schedule may be mine for the rest of my life!

  • Every 28 days I go to the clinic to have an injection in each buttock of Sandostatin LAR.  This is deep muscle and a big needle. Sometimes it burns. Sometimes one side or the other hurts for several days.  The drug both reduces symptoms and may inhibit tumor growth.
  • Every three months I have a set of blood tests.  Seratonin, Chromogranin A, gastrin (these three are specifically to try to catch disease progression but may not be reliable. Currently specialists are recommending pancreatin and neurokinin A instead). Also, Comprehensive Metabolic Panel, White Blood Cell Differential, Complete Blood Count with Differential and sometimes others.  At least six vials of blood are drawn.
  • Also every three months I meet with my oncologist or a PA and discuss the above plus any other recent scans and tests and to discuss my symptoms and any problems.
  • Every six months I have a CT scan.  It is a triple phase with contrast scan meaning that I must fast and for two hours before the test I have to drink two bottles of barium sulfate (not good) and during the scan they inject an iodine solution into my arm.
  • Annually we do an octreoscan which is a specialized scan in which I am injected with octreotide bonded with some radio isotope and then scanned by a large machine for an hour or more for at least three days.
  • Annually I also have an echocardiogram to make sure that I am not developing carcinoid heart.  The extra seratonin made by the tumors can cause a heart valve to become fibrous and function poorly.
  • In addition, I have had one or two MRI scans. Because of my new pacemaker, we cannot do that anymore. I have also had other tests like the 24-hour 5HIAA urine collection which is supposed to be better than the seratonin blood test but showed nothing for me.

We have to remember that none of these tests are definitive.  The only proof that you have carcinoid is to biopsy a tumor. The blood tests can be inconclusive or wrong.  The octreoscan requires that your tumors have  type 2 octreotide receptors but not all people or even all tumors within one person have those receptors. Tumors can “hide” from CT scans.

After four years of this, I am used to it and in general do not feel anxious about any of it.  The last blood tests showed nothing new.  However, the CT scan last month was a bit different because a) I have felt just a little worse than I have since the surgery two years ago. b) Statistically the surgery might halt progression for about two years.  So, I actually have been expecting some indication of progression this year.  Of course, the results were reported to me 5 or 6 days later than I normally get them.  They reported that the scan detected a small lesion in my liver.

I expected it but it upset me.  I find that I can’t be analytical and brave all the time. Now, having time to consider, I know that we will do nothing but wait for the next scan to see if it is still there and if it has grown.  These things grow very slowly plus I have two smallish tumors in my liver already and I probably have a primary tumor in the midgut area which is still not found.  I hope this year to see a real specialist and develop a plan.

Looking at all this, you might see why some people develop scanxiety.  For me, as Ronnie says, these scans will keep us alive! We should celebrate the technology.

My point here is to give everyone a glimpse into the schedule you might have if are diagnosed with carcinoid or neuroendocrine cancer.  My hope is spread awareness of the disease and the very real impact on one’s life even before you consider the symptoms.



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We call it Progression

About 28 hours after returning home from the hospital having had a pacemaker implant (and feeling good about it; see: A Pacemaker!?!), I got a call from my oncologist’s nurse with the results from a CT scan that I had 11 days before.

A new lesion was seen on my liver.

Damn.  I guess one day of relief is all we get. We can add the new one to the two lesions that we already know about.

I had liver surgery just short of two years ago.  At that time, I wrote that statistics are showing that debulking (removing as much tumor load as possible) seems to lead to two years of no progression in 50% of the patients. So, it appears that I am just an average kind of guy.

What is progression? I cannot find a formal definition for progression in neuroendocrine tumors. Indeed, there are papers lamenting about the need for a formal definition. My take is that there is visible tumor growth and/or worsening of symptoms. Given that, my disease has progressed. Oh boy.  Luckily the symptoms have changed very little or not at all at this point (except maybe the heart rhythm and rate which we just fixed).

What will happen?  It is impossible to tell now.  A specialist surgeon in the carcinoid field is moving to Denver next month.  Dr. Eric Liu is one of about a dozen specialists in the US. He sees more carcinoid cancer patients in a week than the entire clinic I go to sees in a year. His clinic will be about 4 blocks from the clinic that I go to now.  I plan to demand a referral from my HMO insurer.  We will let him look at everything and help us make a plan.

How wonderful that I am co-leader tomorrow of the Colorado Carcinoid Cancer Support Group quarterly meeting.  I have some listeners who will understand how it feels.

Once again, may we all have the best possible outcomes.



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