Tag Archives: cancer

Radiology Report from CT Scan – 2016-10-27

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.

May we all have the best possible outcomes,

Cy

 

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Neuroendocrine Cancer Awareness Day 2016

Tomorrow, Thursday, November 10, is Neuroendocrine Cancer Awareness Day.

Cy Zebra
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!

From Carcinoid Cancer Foundation This is a graphic depiction of many of the symptoms and locations:

symptoms of carcinoid
Possible symptoms and locations of Neuroendocrine Cancer.

An easier to read version is here.

My point is, obviously, be aware of Neuroendocrine Cancer also known as Carcinoid Cancer.

Our lovely granddaughter at 11 weeks!

margot1-2016-11-07 margot3-2016-11-07 Who could resist our Margot?

Namaste,

Cy

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Stability, Carcinoid Cancer 2016-10-27

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.

 

Namaste,

Cy

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Bladder cancer procedure- 2016-09-13

Urinary Bladder Procedure

I had another day surgery today for urinary bladder cancer and just returned home.  For the fourth time, cancer had to be scraped from the inside of my urinary bladder.  After the tumor was removed a type of chemo (mitomycin C) was left in my bladder. Although the procedure itself was about an hour long, Laurie and I spent from 9:30am until about 4:00pm in the hospital. I have to wear a Foley catheter for two days and then remove it.

The original anesthesiologist assigned to me was delayed in another surgery, I was assigned another one.  He decided to use the same procedures that were used during this procedure in April.  He thanked me for giving him a chance to study a disease he had only heard of in school but never seen (neuroendocrine cancer). I made sure that the octreotide was there and ready when I was wheeled to the operation room. In fact, we had to wait for the pharmacy to deliver it, even though the originally assigned anesthesiologist had ordered it.  The doctor told me that the pharmacist had to look up recommendations and dosages because they had not used it before.  At the pre-operation meeting a week ago,  I had given the doctors copies of Dr. Woltering’s protocol, Dr. O’dorisio’s protocol and Dr. Pommier’s protocol.

In any case, all went well.

The larger problem is that this bladder cancer has recurred several times now.  This summer, I was given the BCG immunology treatment for six weeks.  That is supposed to be 70% effective in preventing bladder cancer recurrence.  Obviously, it did not work.  My doctor is searching for other solutions.  He says that there is some evidence (that means not proven with acceptable studies) that interferon added to the BCG can help.  He is unsure of it and also insurance would probably not cover it. I will probably re-do the BCG treatment in any case.  My doctor has also checked for any drug studies that I could enroll in.  So far, three studies have turned me down because I also have neuroendocrine cancer.

We will have to keep searching.  I really do not want to have this procedure every six months until my bladder walls are so thin they have to remove my bladder.

Other news

A. I have been seeing a chiropractor for five weeks now, twice a week because I have severe back pain.  Two problems plague me:

  1.  Degenerative Disk Disease Basically, damaged or worn out disks between the vertabrae.  I am the oldest of 12 children and at least 4 of us have this problem.
  2. Diffuse idiopathic skeletal hyperostosis (DISH) Essentially the tendons in the spine start turning to bone.  This and the degenerative disks above were first seen because I have so many full body CT scans and a bone scan checking my neuroendocrine cancer.  They do not know the causes and there is no cure. It is not uncommon but usually found in very old patients.  Darn it! I am not that old yet. Lucky me.

So far the chiropractic treatment has managed to move the pain around but not reduce it much although  I do have a few good days which is good. My PCP also prescribed a treatment of prednisone for me. The drug got rid of sudden shooting pains I had, but the rest was not changed.

I have also been trying hot yoga for it, for stretching and increasing flexibility.  After an hour of that, I am usually more comfortable for 12 to 36 hours.  I’ll keep that up.

B. Next week, I get to see my NETs specialist, Dr. Eric Liu. We’ll decide on my next scans, blood tests, etc. And, I will talk about a little bit of increase in symptoms.  Which would be more frequent pain in abdomen, more frequent diarrhea, more fatigue. Of course, I’ll get my monthly Sandostatin injection (or jab as the British say which is appropriate for this.)

C. Finally the good stuff.  We love, love, love our new little granddaughter Margot.  She is very different from our grandsons.  All is well, very healthy with her and her mom.

Margot - her first day
New born, already lifting her head!

May we all have the best possible outcomes,

Cy

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Mid Winter Neuroendocrine Conference 2016

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/

This is the first year that the University of Colorado Cancer Center has hosted and arranged this and we are excited to attend it.

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A Week in the Life of a Carcinoid Patient

Since liver surgery a year and a half ago, I do not have weeks like this very often.  Prior to that surgery and during the time that I also had atrial fibrillation (AFIB), there were many weeks filled with doctor visits.  Many patients with carcinoid are constantly at doctor’s offices and clinics and emergency rooms.

Today, Monday, I merely have a dental exam and cleaning.  No big deal.  Most everyone has those.

This week, it is time for my annual octreoscan. For an octreoscan, the patient (me) is injected with a somatostatin analogue (usually octreotide) which has been tagged with a radioactive molecule. If there are tissues in the body which have receptors for somatostatin (a hormone we all have in our bodies), the tissue will pickup the octreotide molecules including the tags.  Then radioactivity detectors called gamma cameras can scan the body and create a picture of the body with dark spots where the radioactivity has accumulated.  Often carcinoid tumors have the somatostatin receptors (sometimes not at all and sometimes only some tumors have them and not others in the same person. Then detection is much more difficult).  You can see example pictures here: https://en.wikipedia.org/wiki/Octreotide_scan.  Carcinoid tumors with receptors will show as darker spots in the pictures. The procedure is that the patient  receives an injection usually thru an IV port in the hand or arm.  4 hours later the patient must lie still with arms over head(uncomfortable) for an hour while the scanners operate.  24 hours after that, the patient must lie in the scanner for 1.5 hours for another scan. Often 24 hours after that, you get another hour or 1.5 scan and sometimes you get another one 24 hours after that. So you will be injected once and scanned up to 4 times in 4 days.

It is a pain.

So my scans and potential scans are scheduled for Tuesday, Wednesday, Thursday and Friday.

On Wednesday, I also have a cystoscopy to see if my bladder cancer has recurred.  This is totally separate from the carcinoid.  Wednesday is my day for a mediation group as well.  At least that will be pleasant.

On Friday, I also have my every 28 day Sandostatin (a long acting version of octreotide (somatostatin)) injections. These are deep muscle injections to both sides of my rear end.  I might have these every 4 weeks for the rest of my life.  The injections have been delayed a few days because they might interfere with the octreoscan.  Because of that delay, the chills that I feel at evening near the end of the injection cycle are more severe and last longer than normal this week. At least for now, I do not have the severe night sweats that I also had before the liver surgery.

An interesting point about the octreoscan is that I will be detectably radioactive for about 30 days.  They give me a form to use in the airport if I need to travel because the airport security will detect the radioactivity and probably not very welcoming.

I promise to blog about the carcinoid cancer and the bladder cancer test results as soon as I have results.

Namaste,

Cy

EDIT: Tuesday Dec 9.  I just returned from the first octreoscan appointment.  They have changed the procedure!  Today I just got the IV port with injections. The first scan is tomorrow.  Now I must fast every morning before the scans so I have rescheduled the scans from 1 PM to 9 AM for the next 3 mornings.  They say this will improve their images.  I sure hope so.

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New Carcinoid Tumor Marker Results.

I have gotten my blood test markers back for this quarter. Seratonin, chromogranin A and gastrin are all very low. In fact chromogranin A and seratonin are below the normal range! A few months ago, a PA in oncology told me that he had never seen them this low in a patient!  These markers are tests to see if the disease is progressing/changing.  When I was first diagnosed, seratonin was 7 times higher than it should be. Chromogranin A was 3 times too high. Gastrin was 50% too high.

The numbers have been low since 14 months ago when half my liver with a 6.3 cm tumor was removed. Before the surgery the numbers were in the high-normal and sometimes high range and I was feeling ill.  Obviously the tumor was generating a lot of crap into my blood stream! I felt better than I had felt in years just a day after the 5.5 hour surgery. I still feel great although the diarrhea happens occasionally, usually triggered by some food or activity. 

The next thing will be a CT scan which is scheduled every 6 months.

In the meantime, I continue to feel well.  Night sweats and evening chills occur a few times a month as the monthly injections wear off.  The symptomatic diarrhea happens a few times a month, probably triggered by something I eat or do.  I can live with that!

I am fishing a bit more this year. Meditating, going to AA meetings, Working on music and youtube tutorials.  Laurie and I have been to Mesa Verde to see the cliff dwellings again.  All good stuff.  I did not know how bad I felt, how depressed, until after the surgery.

May we all have the best possible outcomes,

Cy

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