Octreotide Scan Recap

August 16, 2011

On the way up to Boston (for my Octreotide scans), we stopped in Mystic, Conn. for my "meet and greet" with a beluga whale. Afterward, we ate at Sea Swirl, a seafood and ice cream stand which is housed in an old, converted Carvel Ice Cream storefront.

Mystic Sea Port (where Humphrey Bogart and Lauren Bacall spent their honeymoon)

I Love Sea Swirl's Logo: a Fish Eating an Ice Cream Cone

Sea Swirl's clam strips are simultaneously flaky and chewy - in a good way.

Sea Swirl has both soft serve and hard ice cream (including black raspberry); I was especially excited to see watermelon soft serve - but discovered it was vanilla ice cream with a "flavor blast" of watermelon... still delicious.

After we left Mystic, Connecticut, we went to my aunt's place in Wakefield, Massachusetts - where we stayed for a few days in preparation for my Dana-Farber appointments.



August 17, 2011

We arrived at Dana-Farber at 8:00am, and after we wandered around the wrong building and the wrong floor for a while, Gary and I finally found the nuclear medicine department. Perhaps the coolest thing about the entire experience was the crazy-looking metal container that my radioactive iv shot came in - the nurse explained "this container is to protect me, not you." Ok, that's comforting I guess.



After four hours, the scans started. I hated it. I thought I'd be fine after conquering the MRI, but I was wrong. While the Oscan machine is open on both sides, a massive, flat camera gets lowered down until it's right above your nose (for much of the time). Even with a blindfold, meditation music, and deep breathing - I spent nearly every moment fighting panic.



At first, I couldn't figure out why I was having such a problem with the tests (which are a couple of hours long) until I remembered that in my early 20s I went through a phase of having really vivid nightmares of being buried alive. Worse than the nightmares themselves, however, was the fact that somehow I'd manage to crawl UNDER the bed during my sleep... so I'd actually be touching the underneath of my mattress while dreaming that I was feeling the inside of a coffin. I would scream and scream until someone in the house would pull me out from underneath the bed and wake me up. I think having a large flat surface over my face triggered those memories. Hopefully, I won't need to get another Oscan for a long, long time.

My Radioactive "Non-Warning" Label





Octreoscan Machine (the flat screen lowers down once you slide into that doughnut looking hole)





Gene Display at Dana-Farber Cancer Institute

Post Oscan Activities

Since my first Oscan was an all-day event, Gary took in an afternoon Red Sox game at Fenway. I had some time to kill in between my testing and the end of the ballgame, so I went to the Gardner Museum, which is one of the most eclectic, fascinating, beautiful museums I've ever been to. (Travel note: Fenway Park and the Gardner Museum are both within walking distance of Dana-Farber, and totally worth a visit.)

August 18, 2011

After my second day of testing, Gary and I headed home - and hit Frank Pepe Pizzeria in New Haven, Conn. for a clam pie. Gary thought it was absolutely pizza hall-of-fame material; I thought it was solid, but not mind-blowing.

We finally got our clam pie (See previous blog post: Not So Clamtastic aka Shell Shocked)

Muddled Hope: Oscan Test

Editing Note: The above picture has been changed from the original post because THIS is really what an Oscan machine looks like... before that big block looking thing lowers down until it almost touches your nose.

After a lot of invaluable input from family, friends and fellow noid survivors, Gary and I decided to go ahead and keep my appointment at Dana-Farber tomorrow for an Octreotide scan (aka Oscan). After we made our final decision, Gary turned to me and said, "I don't even know what to hope for anymore... I'm not sure if we want the test to come back positive or negative."



I know what you're thinking... how can you want the test to come back positive for cancer? Well, here is the problem - regardless of whether the Oscan test shows that I have carcinoid syndrome, or it's another phantom disease making me sick - there's still a silent mutiny going on inside of my body. If it's related to the carcinoid, at least the enemy has a name... and we have a couple of weapons in our arsenal to fight it. If it's not the cancer, we have no immediate course of action - just more specialists and tests, pain and frustration.



The other tricky thing is that you wouldn't know by just looking at me that I'm sick, so a "positive" result would make me feel... well a little less crazy. Every time I'm sitting across from a new doctor - he inevitably looks at me skeptically after I describe my symptoms - like he just can't believe that this athletically built, happy looking girl (with all her hair) can really have anything all "that" wrong with her. It's like I'm at my car mechanic's garage, trying to explain a weird sound my car is making, and my mechanic is looking at me like I'm nuts.



One of the blogs that I follow is The Cancer Culture Chronicles, which details the journey of a very brave (and talented) author in her battle against breast cancer. Recently, she wrote a post "Look at Me" about this very phenomenon:



" 'You just wouldn't know it to look at you,' clucked Nurse Lovely as she drew my blood and I was explaining the excruciating pain I was experiencing in my left arm and shoulder area. Pain so strong it had awoken me from my sleep several times that week.



I've heard this expression many times, and I'm never quite sure how to respond. The thing is, pain for the most part is invisible, until it causes our facial features to contort, and our eyes and bodies to grow weary with exhaustion." The Cancer Culture Chronicles



So much of what is wrong with me (including a lot of pain) is also invisible. Every day activities - such as climbing my condo stairs, have become difficult mini-battles.







These few little steps used to be a non-issue; now, they are my nemesis. Other small "changes" I've gone through in the last 8 months - that are invisible to the outside world - include:



- sleeping in two towels to try to sop-up some of the perspiration from my severe night sweats

- scarfing down nausea pills when the cold sweats and spinning come on

- regularly taking my temperature to monitor a never ending series of low-grade fevers

- constantly checking my heart rate at the gym to make sure it doesn't suddenly drop to 50 bpm (usually it does this after I hit 140 bpm)

- having to stop and rest - a lot

- making these little whimpers of pain every once and awhile... that just squeak out.



While most of the world aren't privy to this new reality, my friends and family are - and they tell everyone (including me), "I just can't explain it - but she's sick and weak." Their confirmation is comforting, as if they are sitting next to me at the garage with my mechanic saying, "yup- I know that car really well too, and something isn't working right."



So my big question is which girl will the Oscan detect tomorrow: the one who at first blush seems absolutely fine, or the one whose body is slowly deteriorating a little more each month? Will the Oscan come up with some answers, or just tell us to "go fish" again? Whatever it shows, I guess it's good news: negative = no more cancer; positive = a couple of treatments that might make me feel better. I suppose we will just have to hope for "the best"; whatever that may be.

MRI Results

Dr. Nash called yesterday evening to let me know that the MRI scan looked normal. YES!! Now, as long as the cardiologist doesn't find any leaking valves on my echo, we can safely eliminate carcinoid syndrome as the cause of my other symptoms.

UPDATE April 12th: I spoke to Dr. Nash, who called me in between his surgeries today. (This guy deserves a bronze statue in Sloan Kettering's hall of fame.) He explained the CT and MRI results a little more in detail. I have two small cysts on my liver that were not in my previous CT scan. This is not unusual, because CT pictures are taken in intervals - so they can miss things. He just wanted to make sure they weren't new growths or changing, and the MRI delivers a much clearer image for monitoring purposes. (To read more about diagnostic CT and MRI imaging of benign liver cysts, click HERE.)

Syndrome or Disease?

I don't know if it's the cancer or an unrelated ailment...but I'm in real pain. If Dr. House were creating one of his famous "white-board lists" of my current symptoms, it would read as follows:

* history of carcinoid tumor
* fevers and night sweats
* joint pain and stiffness in hips, fingers, toes, ankles, knees, lower-back
* muscle weakness and aching
* radiating, burning pain in shins, thighs, arms
* extreme fatigue and shortness of breath
* abdomen discomfort, cramping, pressure, bloating
* nausea and vomiting (infrequent)
* hot rash over face and chest that comes and goes
* heart palpitations
* low blood pressure
* heart rate that drops with exercise

I just finished a series of RX Augmentin for a lingering ear and throat infection...but it did not have any affect on my other symptoms.

So here's the million dollar question - is it possible that the collection of symptoms could be a result of a syndrome and not a disease? The difference between the two is a little confusing.

A "disease" is a term that indicates a health condition that has a clearly defined reason behind it, while a "syndrome" is a kind of medical mystery - and can produce a number of symptoms without an identifiable cause. To muddy the waters even more, certain diseases can cause specific syndromes.

Carcinoid Cancer v. Carcinoid Syndrome

Carciniod cancer is an extremely rare disease, and a very small percentage of carcinoid cancer patients develop carcinoid syndrome, which have the following symptoms (% of patients affected)

Flushing (94%)
Diarrhea (78%)
Heart Valve Lesions (53%)
Cramping (51%)
Telangiectasia (25%)
Peripheral Edema (19%)
Wheezing (19%)
Cyanosis (18%)
Arthritis (7%)

March 22, 2011 (4 pm) - iphone pic

March 22, 2011 (4:10 pm) - iphone pic

Out of all of those symptoms, I only have flushing (see above), cramping, and arthritis. In a few days, I'll have an echocardiogram to determine if I have heart valve lesions. I don't think I have carcinoid syndrome because usually if you have a midgut carciniod - the liver filters out the excess seritonine, which is the cause of the syndrome. If I do have the syndrome, that means that the carcinoid cancer has metastisized to my liver.

One of the things I don't understand is why none of my doctors have ordered a 5-HIAA test, which is used to determine if the carcinoid cancer has metastasized to the liver, most likely causing the syndrome. I guess that's another test I'll have to ask Dr. Nash about when I see him for my CT scan in April.

New Medical Guidelines for the Diagnosis and Treatment of NETs

The North American NeuroEndocrine Tumor Society (NANETS) has issued a comprehensive set of guidelines to assist medical professionals with the diagnosis and treatment of neuroendocrine tumors. The guidelines are organized into eight manuscripts, each one addressing key aspects of NET diagnosis and treatment by organ site. I focused on the manuscript pertaining to NETs of the appendix, and I was genuinely impressed by its clear synthesis of competing and complementary evidence-based research on this rare disease. The guidelines are not only an important resource for medical professionals, but also a way for carcinoid patients to feel more empowered about their own treatment options.

Surgery Notes and Pathology

I had my post-surgery appointment with Dr. Wagreich today, who was pleased with my progress but indicated that it would still be a couple of months before internally I was entirely healed. When I asked her about my appendix having to be cut away from my abdomen, she said that she had already spoken to Malone about it - and Malone would have to go in and biopsy that entire area since Wagreich, unaware of the potential for cancer, left some "scar tissue" that was connected to my appendix attached to my abdomen wall.

Wagreich also gave me copies of her and Dr. Davidov's surgery notes (he is the general surgeon who performed my appendectomy), as well as my pathology reports. I also went to University Radiology to pick up my barium drinks and CT / MRI reports.

I don't want to brag, but I've passed a couple of pretty tough tests in my day, most notably the California State Bar Exam and English Praxis Test. The feeling is always the same when you see that envelope, and today's little white envelopes were no different. The butterflies still fluttered even though this time I already knew, for the most part, my results. Unlike the CA Bar and Praxis, however, I didn't pass my pathology tests on my first try. (Warning to the medical world of rare cancers: I'm bringing my A-game to all future exams.)

Interestingly, since most of my medical tests and reports were so focused on my ovarian cyst and fibroids, little to no mention of my appendix appears. It is a little scary that no one seemed alarmed until pathology came back. Perhaps the most unsettling report concerns the CT scan because Dr. Malone said that she couldn't even see the appendix on the CT films, yet the CT report indicates the appendix looks normal.

The relevant report findings appear below:

3/18/10 CT Scan Report: "the terminal ileum and appendix appear unremarkable"

4/21/10 Surgery Notes from Dr. Davidov: "appendiceal tip slightly swollen and edematous in a clinical picture that might be consistent with a history of possible appendicitis that had improved, and now has recurred."

4/22/10 Pathology Report: "the tip of appendix is enlarged measuring 1.2x0.8x0.8 cm. sectioning of the tip reveals an area with soft yellow mass measuring 3x0.5x0.5 cm and extends to 1cm from the appendix base. Final pathological diagnosis of appendix, appendectomy: appendiceal carcinoid (3 cm in greatest dimension). Tumor infiltrates through the muscularis propria of the appendix into periappendiceal adipose tissue. Perineural invasion is noted."

Preparing for Appointment: Dr. Maloney Patel

Tomorrow is my appointment with Dr. Maloney Patel, who is a colon-rectal surgeon at RWJ. Hopefully, some of our questions will be answered:

First, starting with what I do know:

Cancer Type: Gastrointestinal Carcinoid Tumor aka Neuroendocrine Tumor (NET)

Date of Diagnosis: April 21, 2010

Tumor Size: 3cm

Primary Origin: Appendix

Now, what I don't know:

What stage is my cancer in?

Stage Determination based on Point of Origin and TNM

T - size (cm)

N - extent spread (regional)

M - extent spread (distant)

Staging for Appendiceal Carcinoid Tumor according ACS:

Stage I: (only for tumors less than 2cm)

Stage II: T2 or T3, N0, M0: the tumor is either larger than 2 cm OR it has grown into the cerum (T2) or ileum (T3). The cancer has not spread to nearby lymph nodes (N0) or to distant sites (M0).

Stage III: either
T4, N0, M0: The tumor has grown into nearby organs or tissues. The cancer has not spread to nearby lymph ndoes (N0) or to distant sites (M0).
OR
Any T, N1, M0: The tumor can be any size and may or may not have grown into nearby structures (any T). It has spread to nearby lymph nodes (N1), but not to distant sites (M0).

Stage IV: Any T, any N, M1: The tumor can be any size and may or may not have grown into nearby structures (any T). It may or may not have spread to nearby lymph nodes (any N). The cancer has spread to distant sites (most often the liver).

5-year Survival Rates, by Stage and Primary Site (Appendix):
Stage II: 88%
Stage III: 78%
Stage IV: 25%

How do we determine if it has spread (regional or distant)?

How do the treatment options differ for Stage 2,3,4?

When Size Matters

Because carcinoid tumors are "slow growing" cancers, the likelihood of whether or not the tumor metastasized (spread) is directly proportional to its size. Typically:

If the tumor is less than 1 cm, then there is only a 5% chance that it has metastasized

If the tumor is 1-2 cm, then there is a 40-45% chance that it has metastasized

If the tumor is over 2 cm, then there is a 75% chance that it has metastasized.

About 50% of carcnoid tumors occur in the digestive system, 30% in the lungs, and 20% in other organs.

The carcinoid tumor, found in my appendix, was 3cm when it was removed. My gynecological oncologist explained that the treatment for a carcinoid tumor of this size was a right hemicolectomy, and she arranged for me to meet with a doctor she's worked with at RWJ in the past (Dr. Maloney Patel).

Carcinoid Cancer Awareness

Zebra stripes are used to symbolize rare or “camouflaged” conditions. The Carcinoid community wants med students to flip the old adage, and think: “When you hear hoof beats don't assume it's a horse, it might be a zebra.”







Wearing a zebra pin or a zebra-striped bracelet or ribbon shows your support to promote awareness and to fund the education and research needs related to carcinoid cancer.

TWO GOOD WEBSITES:
www.caringforcarcinoid.org
www.carcinoid.org

Carcinoid Cancer Survivor

Someone once said that the minute you decide to fight your cancer after diagnosis you can call yourself a survivor. I like that. On the morning of Tuesday, April 27, 2010, I was diagnosed with appendiceal carcinoid cancer. On the evening of Tuesday, April 27, 2010 I became a carcinoid cancer survivor.