Tomorrow (November 10) is International NET Cancer Awareness Day.
This is important to all of us who have the disease. NET Cancer has been one of the least recognized cancers with less research and diagnostic effort than most. Due to efforts like these awareness days, doctors and researchers are becoming more familiar and producing more tools to diagnose and treat our disease.
Most states governors have signed proclamations supporting this day. Though the efforts of my co-leader of Colorado Carcinoid Cancer Support Group (CCCSG), our governor here in Colorado has signed this proclamation.
You can read more about NET Cancer Awareness Day here.
In the last couple of years, I have been co-leader of the Colorado Carcinoid Cancer Support Group (CCCSG). I have developed the habit of always sending a list of (usually reliable) information and support sources about our disease.
The year I was diagnosed, 2011, most of these sources did not exist or were not generally known (NETs itself was not known by most people including medical people). The ACOR listserv and the Carcinoid Cancer Foundation were the only reliable things I could find. I got information from these and from conferences that CCCSG sponsored in Denver and from the members of CCCSG. My own doctors claimed that they could give all the information I wanted, but I soon found that they knew less than I did. It seems to me that because they were strictly evidence based medicine believers, they did not think they needed to know anything about NETs. At the time, the only thing on their checklist was Sandostatin and perhaps TACE (Transarterial chemoembolization). I eventually knew enough to know that I had to switch from that oncologist and the HMO she works for.
Times have changed. More treatments and diagnostic tools are available now and more are under development. There are many more sources of both information and support for NETs sufferers. One still has to be careful of old or incorrect information but things are better.
So I have added a page to this site listing the sources (see the menu above.) I also include it here:
CAUTION: Fortunately for us the medical treatments for NETs are being developed rapidly at this time. There may be out of date information. Especially in the videos which are 1 to 4 years old. They are still good starting points.
Support groups can offer emotional support as well as information. Be careful, although many groups are monitored by doctors, the information shared by patients may not be accurate.
The oldest group is probably an email listserv run by the Association of Cancer Online Resources.
If you follow this blog, you know that I have been struggling to get a surgeon who would help me with my spinal and sciatic pain. Although the surgery is simple (as spine surgery goes), my neuroendocrine cancer makes me a “special case” because there’s a tumor in L3 and the surgery is for L5 – L4. A surgeon who refused to see me told me to see Dr. Anant Kumar. He takes us “special cases”. He agreed to take me and it seems to be working well.
Here is the problem we are trying to solve. It is called spinal stenosis. It means that the channel that the spinal cord runs in is narrowing and thus squeezing the spinal cord. In my case the canal Vertebral Foramen through the L5 – L4 was narrow for 4 reasons:
Because of disk deterioration the L4 vertebra had moved one way and the L5 had moved another, thus narrowing the channel where they meet by quite a bit to 5.5 mm when it is supposed to be greater than 13 mm. The procedure did nothing to attack that directly If more surgery is needed later, it would be fixed by the complex of wires and screws. We have done a simpler thing on Monday.
Due to aging, the material in the channel has expanded. This is cells growing larger and is called hypertropy. The procedure was to scrape out much of the material in the L4-L5 vertebral foramen.
There was a 14mm cyst on the L4-l5 facet joint caused by friction which happend because of the deteriorating disk. That was removed because it caused pain.
There was some bone spur caused by arthritis on these bones which was removed also because is caused pain.
The anesthesiologist, Dr. Santangelo took extreme care knowing that I had neuroendocrine cancer and that I had had a carcinoid crisis once before. I am told that two times the blood pressure did drift down where it shouldn’t be and he had to put more octreotide in the drip and the BP came back. Remember “special case”? It was good that the surgery took place at Presbytarian/St Luke’s Hospital where my neuroendocrine specialist, Dr. Liu works. Dr. Liu has done much to train the personnel about neuroendocrine and carcinoid crisis.
Both of the doctors working with me were great. I feel very fortunate. The sciatica pain, the numbness, tingling and weakness in my feet is gone!
Dr. Kumar tells me the arthritis pain in the back will remain. That’s OK, assuming that I can walk and fish again.
Thursday I can go to my sister Sarah’s for a huge Thanksgiving dinner. Hurrah!
A few days ago, I had a scan for cancer called a GA-68 or gallium-68 or Netspot. This was designed specifically to detect neuroendocrine tumors. My own results are reported here: The Results of my GA-68 Scan.
EDIT: There has been tremendous response to these two posts on social media. The most frequent question is “Where can I get a gallium scan?”. I now can show you two sources:
I figure it might help other people with NETS to explain what this scan is. If you have had a cancer or know people with cancer, you probably know that a PET (Positron Emission Tomography) scan is used to try to locate tumors and metastases. The traditional PET scans normally do not work with neuroendocrine tumors because the biology of the tumor is different than most cancers so the standard markers do not function.
One year ago, the FDA approved a different kind of marker for use with PET scanners that is specifically designed for neuroendocrine tumor. The GA-68 (commercial name: Netspot) is an injectable that is a binding of radioactive gallium 68 to a somatostatin analog called octreotate. Neuroendocrine tumors have receptors for the hormone somatostatin in over 60% of patients. The tumors therefore will capture the somatostatin as it passes by and of course the radioactive GA-68 bound with it. Although some other tumor types and even some body parts (pituitary gland for instance) have receptors, if you are the lucky patient whose tumors have these receptors, you can get a good picture of where the tumors are by tracking the radiation. The PET cameras take pictures of the radiation in the body. GA-68 scans have been used in Europe for over 15 years already. Apparently, they were not considered profitable enough to develop, test, and get approval for in the U.S. until recently.
You are probably familiar with CT (xray Computed Tomography) scans. These take three dimensional xrays of the body. The new PET machines are actually PET/CT machines. They take the PET and the CT at the same time.
Before now the best we had for neuroendocrine tumors were CT scans, MRIs, and octreoscans which were a much weaker version of the GA-68 type of scan without the attached CT scan.
Octreoscan vs. GA-68 scan
After my diagnosis, I have had more than six octreoscans (about one per year) and a CT scan every six months and one or two MRIs. This picture shows the difference between the GA-68 and the octreoscan.
What a difference. The black dots are areas of high “uptake” meaning attachment to the marker. My first radiologist showed me my first octreoscan and said “‘nuclear medicine’ is sometimes called ‘unclear medicine’!” These are not my scans. They were uploaded to Facebook for an example.
Combining the CT scan and the Netspot PET scan in one picture is even more powerful.
The gallium radiation has a very short life. We patients are given no warnings at all except to drink lots of water so the radiation won’t gather in the kidneys. NOTE: Although the gallium injectable is more radioactive than the indium-111 used in the octreoscan, the patient actually receives less radiation because the gallium-68 isotope has a much shorter life than the indium-111 isotope.
The old octreoscan routine was to wait until the end of my 28 day Sandostatin injection cycle then I had to take a laxative the night before and fast until I was given the injection. After the injection we waited 4 hours, then had about an hour laying flat on my back without moving in the nuclear scanner. The hour long scan was repeated the next day and sometimes even a third and fourth day. I was warned that I would need a doctor’s letter to pass through an airport within 30 days of the injection. What a pain!
The Netspot PET/CT requires no preparation, no laxative, no fasting. It could be given 15 days after the last Sandostatin injection and they asked that you not use an octreotide “rescue” injection for a day. You are given the injection, wait an hour, then climb onto the scanner bed pictured above and lay still for less than 40 minutes. That’s it! Unlike a normal CT scan there are no breathing instructions during the scan (“hold your breath”, “breathe”). The machine is a bit bigger than a CT scan but is open on both ends so there is no claustrophobia.
Edit: 2017-06-05 Like NETs patients, each medical facility is different. My scan was at Rocky Mountain Cancer Center where Dr. Liu works. Someone just told me that a facility in Arizona is telling patients that they must wait 4 to 6 weeksafter their Sandostatin injection to get a Netspot scan. Also note that Medicare is paying for these scans but how much is paid and the difficulty of getting approval may depend on your add-on plans. As far as all health insurances, I have heard that the scan part is usually covered (perhaps around $1,000). But the Netspot injection is separate and is much more expensive. That is the part insurance companies are unsure about. Additionally, of course, each medical facility may charge differently for the scans.
NOTE: Josh Mailman who works in the nuclear medicine field and has NETs and is very active in our NETs community shared the searchable map link above and these links:
I am not a doctor or medical person (perhaps a professional patient these days). The above is my “not a doctor” explanation of some very complex things. I hope that it helps and is not incorrect in any substantive way.
Today February 28, 2017 is Rare Disease Day.
Several things have occurred today which warrant examination.
The U.S. Food and Drug Administration (FDA) has approved Xermelo™ (telotristat ethyl) as a first-in-class orally administered tryptophan hydroxylase inhibitor indicated for the treatment of carcinoid syndrome diarrhea in combination with somatostatin analog (SSA) therapy in adults inadequately controlled by SSA therapy. This is a pill that will help people with the diarrhea part of carcinoid syndrome (some people up to 40 times a day) while those patients are on somatastatin analog therapy (that’s the octreotide (Sandostatin LAR) injection that I get every 28 days or a newer injection called lanreotide (Somatuline)). Big news for those with the syndrome. Fortunately for me, my syndrome is very mild and occurs very infrequently.
saying this “The main objective of Rare Disease Day is to raise awareness among the general population. The Healing NET Foundation encourages you to share this video of stories and comments NET patients posted on our website and on FB, to let the world know about our RARE DISEASE, Neuroendocrine cancer and Carcinoid syndrome. “
The Lifetime TV channel show “The Balancing Act” had a Rare Disease Day episode this morning which partially featured Neuroendocrine Cancer. The show is now on YouTube:
Point 1. above show how raising awareness of our disease gets doctors and drug companies looking for ways to treat it.
Points 2. and 3. are good parts of the ongoing efforts to raise awareness of the disease. It exists. It affects people’s lives. We all need more treatment options.
This log should encourage everyone to get copies of their CT Scans, MRIs, octreoscans, GA68 scans, and all reports on scans and procedures and test results. You will often find things that your doctor doesn’t mention. In the past, when I was with an HMO, my oncologist never went over the radiology reports with me and there were a number of things that I needed to know as well as things she should have known but did not pick up on.
I reported on the positive results of my meeting with Dr. Liu in the post Stability, Carcinoid Cancer 2016-10-27. At the time, we did not have the actual written radiologist’s report. It is worth understanding that with chronic disease like neuroendocrine, we get many scans and radiologists typically compare previous scans to the present scan. In this case, October’s scan was compared to the scan from October last year (2015).
That radiology report about the CT scan came to me in the mail Saturday and I was amazed and very happy to read it!
Neuroendocrine cancer – No lesions found in liver (Dr. Liu and I did find a lesion in our meeting and that had not grown, not sure why the radiologist did not) but the previous report had shown 5 or 6 very small lesions. They have shrunk to invisibility!
Urinary bladder, kidneys, ureters – all normal. This is important because I have struggled with urinary bladder cancer recurring for about three years now.
Everything else – normal! Still no sign of the primary tumor. Wish we knew where that little bugger is!
This is HUGE!!! From six visible lesions to one is unexpected, the monthly Sandostatin LAR injections (and of course my good living, Hah!) must be effective. Of course caution is in order, this is a radiologist that has never seen my scans before. Also, even lesions too small to see can start to grow again, in fact, it is said that the primary tumor generates microtumors that seed everywhere else.
But this is an even better CT scan report than I thought at the time of meeting with Dr. Liu. I am certainly really happy and ready to go forward with hope.
All of you who have our disease: Get copies of your scans and reports about scans and test results. At least try to read them. It will teach you things and may have good news.
Tomorrow, Thursday, November 10, is Neuroendocrine Cancer Awareness Day.
Cy is a Zebra
Yes, I am a zebra. I have neuroendocrine cancer.
“When you hear the sound of hooves, think horses, not zebras.”
This phrase is taught to medical students throughout their training.
In medicine, the term “zebra” is used in reference to a rare disease or condition. Doctors are taught to assume that the simplest explanation is usually correct to avoid patients being misdiagnosed with rare illnesses. Doctors learn to expect common conditions.
Unfortunately, many doctors forget that us zebras actually do exist. The average time to diagnosis for us is about six years!
Keep reading, there are lovely baby pictures below!
The Healing NET is featuring some of our stories here. I got selected to be one of them!
My specialist Dr. Liu and I were concerned that perhaps my thyroid function was not good. Since Sandostatin injections can impact that and also ten years ago a nodule was noticed on my thyroid and not really followed up since then, I had an ultrasound last week and the “nodule” was still there. That worried me a lot.
There was also the possibility that my Carcinoid disease was progressing which is always a worry for those of us with the disease. I have been having more episodes of chills in the evening and occasionally night sweats.
Dr. Liu believes the “nodule” is cancer but has not changed significantly in ten years and the test for thyroid function are good. His recommendation is to revisit it in six months. He told me that conventional wisdom is usually to remove the thyroid but that he doesn’t agree when it is this slow growing. I am good with that. The less surgery, the better.
With blood tests and with a CT scan, there is no indication that the carcinoid has progressed. The small tumors in my liver have not changed and blood tests give no indications of change.
Obviously, I am overjoyed. It has been 3.5 years since my liver surgery and the carcinoid has been pretty stable.
Other good news is that the new GA-68 scanner will be used for patients starting next week! I will probably get it in the spring to insure that carcinoid tumors have not spread to any other areas of my body.
My back is still a painful problem. I have degenerative disk, arthritis and DISH (Diffuse idiopathic skeletal hyperostosis – tendons hardening to calcium). I have tried a chiropractor and it’s no help. Hopefully today’s CT scan will give my PCP some clues. I have been attending hot yoga classes for the last eight weeks and that gives me some relief for a day or so, but the pain can still be pretty bad. I think we will be looking at injections in the spine soon.
No news about solutions to the urinary bladder cancer problem as of yet.
Last month, in BCG Immunology Treatment Started, I posted about the BCG Immunology treatment that I was undergoing for urinary bladder cancer. Ten days ago it was finished for now. Although the side effects were minimal compared to other things that I have undergone, it was great to be done with it.
I have an appointment for a cystoscopy in about six weeks. They put a camera in your bladder to look at it! Not pleasant, but it will show whether there are any signs of the cancer. I am told that I may have to have another three weeks of treatment in about three months.
Sciatica
In my post May 2016 Scotland and Iceland, I mentioned that I was having a great deal of trouble with sciatica. This is because I have what is known as “degenerative disk disease” in my lower back. The sciatica pain is caused by the vertibrae pinching the sciatic nerve and inflaming it. There has been pain and tightness in my back, both sides gluteous, hamstring and calves. It can be difficult to walk, stand and negotiate stairs. I had a real fear of falling sometimes.
Three and a half years ago, I had a milder version of this. My PCP put me on a three week treatment taking Prednisone tablets. It worked well and lasted for over two years.
I suggested this to my current doctor and he agreed. However, my urinary surgeon said that it would interfere with the imunology treatment. So, with doctor’s instructions, I have been taking far too much ibuprofen and it has started causing stomach issues.
I started taking the Prednisone three days ago! Hoorah! It’s working well. My back and legs are better than they have been in three months and getting better. Hopefully, the improvement will last a long while.
There are lots of cautions and problems with Prednisone. Be careful.
For almost everyone it should only be taken for a few weeks including a taper off. I have five days two tablets; five days one tablet; five days half tablet; five days quarter tablet; for a total of twenty days.
Neuroendocrine Cancer News
I feel lucky to report that I am having almost no problems associated with neuroendocrine cancer at this time.
My friends at The Healing Net Foundation publish a blog by my specialist Dr. Eric Liu and other very interesting things.
First, they publish a very good information pamphlet for medical professionals. When you realize that your doctor knows little or nothing or wrong things about your NETs, see if they will read it: NET Primer: Informational Brochure . It’s also pretty readable for us patients.
Saturday February 6, the University of Colorado will host our Mid Winter Neuroendocrine Cancer Conference.
The agenda and a link to registration are posted on the Colorado Carcinoid Cancer Support Group website: http://cccsg.net/
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