In fall 2001 I had an annual exam with my primary MD. I felt silly mentioning a little pain that had been bothering me for a few months. I was an athlete, every time my right foot hit the ground while running I felt a stabbing pain in the right lower part of my abdomen, near where the appendix is....but my appendix had been removed.
My doc and I knew each other for several years, we were both thinking ovary, I wasn't a whiner (like I am now!) I'm a medically retired nurse, so he tended to listen to me. He rolled in a portable ultrasound machine, took a look, said eh...there's a little blip on your ovary but it could be a cyst, come back in one month. Ok, I did. It was double. He sent me for a MRI, it was bigger and the report said "Nodular density, cannot rule out malignancy, suggest CT and referral." I never forget that. It was bigger on the CT. This was over four months. My doc nearly lost his job going to bat for me, trying to get the gynecological oncology surgeons to see me. Expedited was eight weeks. I went, straight after my night shift in the ED, and waited all day like everyone else but was never seen. We were told the docs were in emergency surgeries....all day. Hmmm. We were resscheduled, I had to wait another six weeks for the same thing to happen. By then this mass that was about the size of a pea was a tennis ball. You could see it protruding because I was thin. It was on my right ovary, crushing my intestine in that area, nerves, blood vessels, not to mention my only remaining ovary. I had a problem even if it didn't turn out to be cancer. My primary left that large system and took a better position with a competitor. He called me privately and sent me to a hospital outside of my city with instructions. Within two weeks I was in the OR. The surgery was horribly botched, but in 2/02 I was diagnosed with a rare cancer called Carcinoid which falls under the category of NET: Neuro Endocrine Tumor. I had a benign strumal teratoma on my ovary and if you leave a teratoma in place for too long, it can grow carcinoid. P.S. If it had been removed when it should have been after the MRI, NONE of this would have happened and the lives of my kids, then husband, extended family, friends, employer and oh....me, would never have been what they became. I raised my kids as a single, sick and often rather broke Mom. This is my 6th fight. I guess that means I have a B average on whipping cancer into remission, but I WANT AN A! Whaddaya gonna do, I'm a perfectionist.
As rare and weird as this cancer is, I'm rarer and weirder. This is a gastro-intestinal tumor, primarily, and it can spread from there. My primary site was in the ovary. Depending on which peer reviewed study or journal publication you read, and mind the dates (something dated recently may be quoting things that are 20 years old so inspect the SOURCES, and locations the info came from because carcinoid.com is not one I trust but carcinoid.org is better and even they are not as current as they should be considering that's the actual FOUNDATION for this cancer), I'm between 0.03% - <1% of women with the presentation I have because of my primary site. These insidious tumors are small. If you have one that is 1 cm or larger, statistics say you'll not only have a recurrence, but you'll have metastasis. (I should have bought a lotto ticket instead). Don't stop there, out of the several women ever diagnosed with this freak show, only 0.01% - 0.03% develop Carcinoid Syndrome, and fewer develop Carcinoid Crises. This doesn't mean there aren't more women, this can only represent the ones who have been diagnosed. Guess who is one of two known to have the syndrome and the crises? Me, and the poor other woman died so I was told by my specialist. I'm not special, I'm sticking with freak and doggone I should have bought a lotto ticket....but I just don't gamble. I'm NOT gambling with my health either! On top of all of this, teratomas are benign firstly, and secondly I never smoked, drank, did drugs, I have been a vegetarian for most of my life, I mentioned being an athlete...I did all the things they tell you to do and as far as what not to do, I was born like we all have been, into a polluted environment. I can't blame what happened on that but I figure it's affecting my immune system now that I'm 53 and have a lot more toxins accumulated in my body not only from the environment but from the treatments starting with the first diagnosis when I was 35 (young, right?) and on and off till 2018. The older you get, the more toxins you get even if you control the amount of fat in your body where the toxins store themselves, the harder it is to fight an illness.
Here I must declare my love for and dedication to my four adult children, and mention my plucky will to live and beat this thing into a humiliated submission. I aim to beat that villain, Carcinoid Crisis . ..just like a graphic novel! (I should make one!)
There are not very many recognized specialists in the US, you can see a list on the carcinoid.org website. It is our Foundation, Carcinoid Cancer Foundation (for zebras) and has the most up to date information on the web unless you're lucky enough to have a subscription to one of the "gynormic" online medical libraries (as I once did and virtually lived there....hee hee). There's a video there featuring Dr. Warner and Dr. Wolin who have both retired and we have new information since that video which isn't really that old. No one source is completely up to date, in part because articles and papers source each other repeatedly. Before I get on a soapbox again....
I have Medicare. It doesn't pay for everything. It's ok, I'm grateful to have something. About two years ago a new test called a Gallium 68 PET CT that has been used outside the US for a while, was being trialed for FDA approval. My specialist said gee, it's too bad your insurance doesn't pay for this, you're so weird it might help us see what's going on and help you. I didn't have a couple grand to throw at this test plus more for markers etc., and travel back and forth from where I live. It's now the first in line for imaging carcinoids which helps to determine the treatment plan, it's now approved by the FDA and that means paid at a contracted rate by Medicare (the patient may still have a share of costs). Second in line is the octreotide scan with the radioactive injection of Indium 111. I get to glow in the dark and have a private WC for a week. I mentioned markers, one of the primary ones for me is Chromogranin A (CgA). Sorry for getting so deep in the very much deeper minutia of this brat of a disease, you're probably patiently waiting for my point.
When I was told I needed the first Gallium CT, I tried selling anything I owned, and considering I was diagnosed the first time in 2/02 and I started my GoFundMe a few years ago to beg for HELP to pay for it, I didn't own much any longer and had paid for my care on my own till I had nothing left to sell, I can barely pay rent and utilities, food, out of pocket uncovered medical, etc... sometimes I don't have enough for internet which is a luxury.... Speaking of that, the world expects you to have a computer and internet. My doctors are all part of big systems and the systems have websites where you can make appointments, e-mail your doctor (nice feature!), get certain test results (if my test results aren't online, I know the doc has bad news for me), etc. Now what do I do in the months I can't afford internet? Try getting anyone on the phone who can talk to me about what I called for. Push 1 for.....enter the extension of the person you're trying to reach....please leave a message. (Anyone out there with me on that?) I can't check my bank...they charge for printed statements and you have to wait for them. I can't check SDGE or anything, life is automated now. I can't read email, so how would I know if there is a message from a doc or a test result or date of a scheduled appointment, etc? Plus, currently I'm home/ bed bound which creates isolation and...eh....I'm losing my mind. Any of my friends who've been on my FB page when I'm having a Crisis know it's true, but I fight to stay positive ! Net is how I communicate with my doctors through their system websites, medical insurance, most everything associated with this illness, I can study and do research, etc. One thing about me, I hate to take, I love to give and help...especially for something I consider a luxury, the net, but the world doesn't. "You never know how big your pride is until you have to swallow it." ~~ Chana-ism (according to my rather annoyed kids who grew up on them).
Well folks, I've got to eat my pride. If you look at my original post here "story" (which you're reading) and if you follow my updates, you can see dates, a letter with all info regarding that first Gallium PET including the cost out of pocket (YEEEOOW!), and a selection of photos of me looking rather icky-sicky as we pediatric nurses tend to say. NOT flattering.
I'm back to beg for help again for the Gallium PET CT and octreotide scans now that markers have come back abnormally high. It's done annually and I received a call wanting me to schedule scans. After the scans I hope I can get the results from the UCLA website or by phone if not, and unless I need surgery (which would have to be done there) I hope treatment can be coordinated where I live so I don't have to keep going up there if they want to do that voodoo that they do....again, and MORE....ech! I've had a metric ton of chemo which makes your tummy give back anything in it, I had my first cavity at age 45 and some work done out of pocket to try to prevent further damage yet at age 53, I don't have any teeth on top that don't need work or extraction. Some is gratefully covered this year by Dent-cal, for the first time! I found a willing dentist (most are scared to do it), he made ano extensive treatment plan. Hopefully this site will let me post the x-rays. I'm being shut off by G&E despite medical documents stating I have medical equipment that must not be shut off. Recently I lost my chemo and other refrigerated meds not to mention groceries . I had no food for a full week, the meds went bad and insurance won't replace them until the next refill. I was using my camping lantern for one week, the apartment building has severe plumbing problems so at the same time, there was no water , and when it was back we had no hot water for three weeks. There's fiberglass from the vents, red and black mold, sometimes bugs, etc. For a one bedroom they want $1,200/ month, my disability is $1,161/ month. That math doesn't work and I 'm certain the building is making me worse. My youngest gets sick when he comes home on breaks from university , something is wrong and my docs want me to move to a city with a carcinoid specialist but I can't afford it. If I pay rent, I can't pay anything else . If I don't , they will evict me...they've tried. I need to pay for medical and food, utilities and phone/ basic slooooow net speed. I don't have cable, no luxuries. I have applied for EBT and qualify but because of the shutdown I wasn't processed. I have an initial phone appointment this week 1/29/19. It can take 4-6 weeks. I have starved for one week but I can't do it for a month.
If you can help in any amount, you have my deepest gratitude. If you can't but wish you could, you still have my deepest gratitude.
For more information about carcinoid please see carcinoid.org . Thank you all very much!
- Zoe Krishel
- Timothy Knight
- Nerissa Chinchillas
- Wendy Thurier Booker
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