Category Archives: Health

Carcinoid Anniversary #5

Woo! Hoo!

Today is the fifth anniversary of my diagnosis with carcinoid cancer (neuroendocrine cancer).  Like almost everyone, I had never heard of it before.  But, it was the word cancer and it was terrifying.  The doctor who called me said “The biopsy says carcinoid tumor and I don’t even know what that is, but it’s cancer. We have scheduled you to see an oncologist.”  It’s really terrifying to know a doctor knows the name of your disease but does not know what it is!

Being a geek, I scoured the internet for information.  In my experience, doctors don’t give you much information unless you ask questions.  You can’t ask questions with no information, so you get very little information from your doctors.  I found a study from 2006 that said carcinoid tumor with distant metastasis (liver in my case) had a 45% chance of 5 year survival.  That was scary.

But, I made it! Five years today.

Now of course, I know that 10 years ago, the injections that I get every month were not used as much and surgery was not recommended as much. Survival rates are getting better.  One reason that I am not at least very sick now is that I heard three experts speak at a meeting more than three years ago and they recommended surgery if possible.  My doctors wanted nothing to do with surgery.  I had to get a second opinion and fight for it but I got it.  I was better immediately and I still feel better than I did before the surgery, three years later.  I do not suffer many symptoms nor very often.  I am weaker and get very tired more often but I’m older also (I’m told).  My heart symptoms may have been caused or exaggerated by the disease or the medication for the disease but it seems under control for now.

That study I found also stated that the average age of carcinoid diagnosis was 64 years old.  I got the diagnosis one day before my 64th birthday!  Funny huh? Not so much.

It’s good to be able to report something good now and then.

Other news

A few weeks ago in Bladder Cancer, Spring Fishing, I reported about my procedure  for my second cancer.  At the time, things were good.  Shortly after that  blog post, I discovered that I had a severe UTI (urinary tract infection). I suspect that it was contracted in the hospital, but cannot know that.  Now four weeks since the bladder cancer procedure, I may be recovered from that or maybe I am almost recovered from that infection.  The doctor is testing to find out.

My NETs specialist has tentatively scheduled May 20 to do a lump removal from my breast to biopsy and make sure that the lump is either benign or carcinoid (which is not dangerous in the breast.  Hopefully I do not also have breast cancer.

Two days after that procedure Laurie and I are scheduled to go visit Scotland (our son and family) and then Iceland for a few days.

Tomorrow (my birthday), I am co-chair of the Colorado Carcinoid Cancer Support Group meeting.  Dr. Liu, our well-known specialist, is planning to come to the meeting so it should be even more interesting than usual.

May we all have the best possible outcomes,

Cy

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Bladder Cancer, Spring Fishing

Despite the cancer procedure last week, I decided to go on my annual spring fishing trip with friends.  We have been doing this more than 25 years.  Can’t let a little cancer get in the way of tradition!

The weather was beautiful here in Colorado on the Arkansas River.  The rental house that my buddy found in Salida was great.  We found the fishing to be tough, but we all caught fish.  My fish count was the worst.  That happens sometimes even to me and I had the excuse of recovering from bladder cancer surgery.

I had to go to the rental and sleep in the afternoon on the first and third day of the trip.  My body was weaker from the recovery and my carcinoid was acting up a bit, I think from the general anesthesia the week before and from the pain pills.  Although the bladder cancer procedure pain was not very bad by the time of the trip, my back pain has also been acting up lately and unfortunately I had a bit of a problem with climbing the steep banks of the Arkansas on the first day of fishing and I had to stick to easier access points for the rest of the trip.

My urinary surgeon called to tell me the biopsy results from the surgery.  He said that the cancer was non-invasive including a “black spot” he had worried about and that the good biopsy meant he would not have to remove my bladder!  I previously knew nothing of a “black spot” or the possibility of bladder removal.  I think they just don’t remember what they have told us or not.  At least the prognosis is good.

We agreed that I would go through the BCG immunology treatment that I discussed in my previous blog.  However, that cannot start until Laurie and I return from our Scotland/Iceland trip in late May.

The first three days in the mountains were mostly sunny with temperature near 70 degrees F. The last morning we fished with temperatures in the high 50s.  In the afternoon, we drove through a snow storm to get home to Denver. Today, the next day, the snow storm is here in Denver and we are expecting about 14 inches of snow.  Colorado is an amazing place!  I feel lucky to be living here.

May you have the best possible outcomes,

Cy

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Urinary Bladder Cancer, Carcinoid Cancer, Medical People

The Treatment

Today, Friday April 8, 2016, I had a day surgery to scrape urinary bladder cancer out of my bladder and to place some chemo into the bladder. The chemo was an attempt to keep the cancer from recurring. This was the third time that the scraping procedure has been performed and at least the second time that chemo has been applied. I was released from the hospital a few hours after the procedure which took about an hour. There will be a biopsy of the material removed from me and my surgeon will let me know of the report.  In the previous treatments, I was told that the lesions were “normal” bladder cancer, not carcinoid and that bladder cancer is most usually related to smoking.  The procedure was deemed successful enough that I can go on a four day fly fishing trip in the Colorado mountains on Tuesday the 12th.

The surgeon and I will meet soon and decide whether to commit to a treatment called BCG. This is a type of immunotherapy drug used to prevent tuberculosis (TB), but it’s also an effective treatment for some non-invasive bladder cancers. It’s given directly into the bladder. It’s supposed to prevent bladder cancer from recurring and from becoming invasive. My surgeon says that the treatment lasts about three hours total and is performed once a week for eight weeks and then periodically monthly or quarterly.  I don’t yet have the full schedule that he proposes. The drug is actually composed of dead tuberculosis cells and there is a small chance of contracting tuberculosis.  My brother has had this treatment and it is apparently working for him.

What is the relationship to Neuroendocrine Cancer?

I had general anesthesia and I DID NOT have a carcinoid crisis and DID NOT have to stay the night in an ICU!  Whoopee!!! For those of you unfamiliar with Carcinoid Crisis, you can read these:

I have found over the five years since my diagnosis that I must always make sure that the surgeon and the anesthesiologist be well informed about NETs and carcinoid crisis and that they are prepared to take steps to avoid it or stop it.

The Doctors and Staff

Because I have changed insurance, this procedure was performed in a whole new environment for me. Different surgeon, anesthesiologist, nurses and even hospital.  I did my usual song and dance about the neuroendocrine cancer to the surgeon two months before the procedure and then reminded him a week before the procedure.  When the hospital called me for pre-operative arrangements, I did the song and dance again.  In all those songs I emphasized that the anesthesiologist had to be selected and notified in advance of these concerns. (Hospitals often select anesthesiologists the day they are needed.  Don’t let that happen!)

The surgeon was very supportive from the beginning and accepted a booklet for doctors about NETs.  The anesthesiologist called me at 8:00 pm the day before the surgery and we discussed my medical history.  We also talked about the facts that anesthesiologists are taught about carcinoid crisis in school but may never see a NETs patient in their career. He thought that he had seen one but wasn’t sure.  Both doctors expressed thanks that I had the knowledge and the willingness to insist on refreshing their knowledge of the subject. The nurses also seemed to have refreshed their knowledge on the subject.

All in, this was a very positive experience (given that it was a cancer procedure!)

May we all have the best possible outcomes,

Cy

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Scotland, Carcinoid, etc. January 2016

We returned yesterday from Scotland. We took grandparent Christmas to the Derek, Kat and Ansel there. It was fun.

The weather was not as bad as it could have been.  Temperatures between 31 F and 40 F.  Some days of drizzle. The Scottish word ‘dreich’ describes wet, cold, overcast; we had some of that, but, no wind and storm from the North Sea.  We were fine, if a little cold, walking around the town.

This was the second trip to Anstruther that we stayed at a bed & breakfast called the ‘Lahloo Bed & Breakfast’.  It is named after an old clipper ship.  We enjoy the proprietors, the rooms, and the breakfasts. Its location is perfect, just a few blocks from our son’s house and a short block to the picturesque harbor.  If you would like to know more about it go to www.lahloobandb.co.uk.

As usual, I experienced the carcinoid syndrome for about half the trip, but it was controlled pretty well by drugs.  It did not prevent me from being able to confidently take long walks and bus rides.

Now that we are back in Denver, I will schedule the bladder procedure to remove bladder cancer.  My new urinary cancer specialist says we should probably also plan on the biologic treatments.

Also, within the next couple of months I will be scheduled for scans to assess the progression of the carcinoid cancer. A CT scan and the new (to the U.S.) GA-68 scan are in my future.  The GA-68 scan produces much better pictures of the location of the neuroendocrine cancer tumors than the octreoscans that I have had annually in the past.  When matched with the CT scan, the doctor may be able to more exactly locate the tumors in my body.  I probably will also schedule a minor, day surgery to remove two lumps from my breast to determine if they are NETs or breast cancer or just benign lumps.

You can be sure that I will write about that stuff as it happens and results are known.

May we all have the best possible outcomes,
Cy

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Thanksgiving, Christmas, Cancer

This Thanksgiving was spent in San Jose, CA. My brother Tony had lung cancer surgery. One lobe and a dozen lymph nodes and a piece of rib removed. We got good news. He is classed stage 2A. The cancer has not spread as far as they can tell. He now has to decide whether to have chemo.

I went there to aid and support him. He recovered so quickly after leaving the hospital that he was driving and cooking within 3 or 4 days. His son Cy and Cy’s fiancee Jordan provided us with a turkey dinner. Then his daughter Elise and her partner Carol provided another turkey dinner.  We ate well. It was good to get to know them all.

A good thing for me was that I continued my daily walks and during my walks I found a Vietnamese Buddhist temple.  I went there 4 times for meditation. It was a beautiful, serene place.

On returning here, I have had my last Sandostatin injection for neuroendocrine cancer at my HMO. Next month I will start going to Dr. Liu’s offices for that. Hoping that this will be a positive change in my life.

Today, I got an unwelcome Christmas present. The bladder cancer has recurred. Because I I am changing insurance, I will wait until next month to see a new doctor and get their opinion and action plan.  I am told that the cancer is very low grade and that I should be able to wait a couple of months.

Despite the bad news, our house is decorated for Christmas and we will have a good crowd here this weekend for a holiday dinner. I am looking forward to it.

Merry Christmas, Happy New Year, Happy Holidays, Namaste,

Cy

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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.”

and

“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,

Cy

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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,

Cy

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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.

Namaste,

Cy

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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,

Cy

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