I’ve never been the type of person to use writing as an outlet, but I’m going to give it a shot. I have two goals with this blog: 1) keep friends and family updated on what’s going on since I’ve been unable to respond to everyone individually, and 2) put my story out there in the off chance that it brings a small amount of comfort to someone else. I’ve been told many times now that I’m good at giving a clinical description of what I’ve been going through but I rarely touch on the emotional side. Surprise, surprise. This first post will be a more factual description of the past three months and going forward I’ll start tackling the other issues outside of doctors’ offices.
First, thank you to everyone who has asked about me. I really do appreciate all of your concern. Second, be careful what you ask for because this is pretty long…
The long and winding road to a diagnosis
Sometime around June 2012 I started feeling extremely drained. I had no energy no matter how much or how little I slept or what I was trying to do. I chalked it up to added stress at work plus the joys of new homeownership, but something wasn’t quite right. I’ve always led a high-stress, stretched-too-thin lifestyle and never felt this tired. This was worse than mono in college or the 100+ hour work weeks in investment banking. I should have listened to my instinct that something was wrong instead of ignoring it.
I started getting lower back pain in mid-July. I’ve had a kidney stone before and the pain started in the same location so I assumed that’s what it was again. I focused on being well-hydrated and decided to wait it out.
Friday, August 3rd I finally mentioned the back pain to my new primary physician to ask for pain medicine since it was getting so bad that it was disruptive at work and keeping me awake at night. I was given 600mg of ibuprofen (3 Advil) and told to go to the ER if it got worse. I should mention that my stomach had been off for a while and during a physical exam I had pain across my entire abdomen.
Monday, August 6th the pain was excruciating. I called my doctor’s office and they told me to go to the ER. So of course I waited until the end of the work day to go. I assumed they would give me some happy meds and I’d be at work a little late the next day. Boy was I wrong.
By the time I got to the ER, the pain was so bad that I burst into tears if anyone touched the lower left area of my back. Everyone assumed it was a kidney stone given my history. But after an x-ray, ultrasound and CT scan, the only thing the doctors could tell me was that it definitely wasn’t a kidney stone and that I should go back to my primary. The next day I had a second ultrasound done (of course my primary only ordered one of the two tests that should have been ordered) and luckily the tech took the time to focus in on my abdominal pain and found a mass which she thought was a swollen lymph node (don’t listen to a tech’s “diagnosis”). The radiologist’s report called it a mass on or near my ovary – my doctor’s guess was an ovarian cyst.
A week later after referring myself to a gastroenterologist, I finally got the script for the follow up MRI. After 2.5 hours of scans (4 hours in the office), the tech told me she didn’t see anything (again, don’t listen to the techs). Several days later the radiologist’s report says that the “mass” is a benign tumor, most likely a desmoid tumor. When my primary told me this, she said there was no medical reason to have it removed, but if I thought it was the source of my pain that I should see a general surgeon. Luckily my GI took the time to research desmoids since they are so rare – only about 900 cases per year in the country – and suggested I see a surgical oncologist since desmoids have cancer-like traits and that is the recommendation of the national research foundation.
That takes us to Wednesday, August 22nd. That night my husband emailed a surgical oncologist that he knows, Dr. Brooks, to ask his opinion on what to do. Dr. Brooks replied a few minutes later that he would see me the next day. After spending about an hour with me reviewing my scans, doing a physical exam, etc., he recommended removing the tumor but wanted me to have a colonoscopy done first because he didn’t like how my colon looked on the MRI.
Another week went by, the colonoscopy was clean, so surgery was scheduled for Tuesday, September 4th – just how every couple wants to spend their first wedding anniversary.
The plan for that surgery was to laparoscopically remove the tumor and look around a bit for clues on what could be causing the pain. Dr. Brooks wasn’t sold on that one tumor causing all of my issues. He ended up removing my appendix during the surgery because he didn’t like how it looked. They kept me overnight but when I left the next day I thought that we were dealing with a benign tumor and chronic appendicitis which should have been fixed by that surgery.
The evening Sunday, September 9th, we received an email from Dr. Brooks asking us to come in the next day. I thought it was just for my post-op follow up and to hear that everything should be okay now. Wrong. That’s when the scary words came out: Neuroendocrine Carcinoma Stage IV.
My appendix was angry because it had a 3.5cm carcinoid tumor in it. The tumor that was seen on the scans ended up being a 1.8cm carcinoid tumor as well and was attached to my omentum on the left side of my abdomen. Two tumors in two different areas automatically means Stage IV. Dr. Brooks reiterated several times that the staging is representative of how the cancer has acted, not of my prognosis. He expects me to live a long, normal life.
Carcinoid cancer isn’t very responsive to chemo or radiation because of how it grows; surgery is really the only real treatment. Dr. Brooks had already talked to Dr. Stein, a colorectal surgeon in the same office, and they recommended an aggressive and proactive approach of removing my right colon and entire omentum. That way the surrounding lymph nodes and tissues could be tested and any lingering cancer cells would be removed. This would reduce my chances of more tumors in the future and give us a better idea of what we’re dealing with to determine the best follow up plan. The other option was to wait and see when tumors started showing up on scans – not okay with me.
I went ahead and scheduled the second surgery with Dr. Stein on October 25th. In the meantime, a CT scan and octreotide scan (it looks specifically for carcinoid tumors but has a high false negative rate) both came back pretty much clean. The CT showed a tiny nodule on my lung. Two days before the surgery, my chromogranin A levels (tests specifically for carcinoid cancer) came back high.
This is where my technical knowledge starts to drop off because I have been avoiding detailed information until I get back on my feet more. Apparently my body doesn’t want to cooperate with the surgical plans because Dr. Stein ended up finding two more tumors and had to take out part of my peritoneal tissue. He called in Dr. Brooks and an OBGYN for my surgery and the three of them looked all through my insides for more tumors, flipping over organs and whatnot. I had to stay in the hospital for three nights, but I got a morphine pump for the first day or so. I’m not sure what the long-term implications of removing the peritoneal tissue are yet, but I should be fine without my omentum or right colon. It’ll just take my body several months to adjust to a shorter colon.
My abdominal muscles hadn’t fully healed from the first surgery when I went in for the second. Both surgeries were laparoscopic so I have a total of seven small incisions (one was used twice) throughout my lower abdomen. I have weakness at each incisional site which makes things like sitting in a chair, standing, getting out of bed, really everything, more of a painful chore, but it’s getting better. My insides were so tossed around that nausea was a bigger battle than pain this time. Digesting food is extremely painful, but it’s starting to get a little better and I’ve learned to take a Percocet about 30 minutes before eating. This is the first time I’ve opened my computer since before my surgery so I’m starting to feel like a person again. I’m still sleeping A LOT, camped out on the couch, don’t have much energy and haven’t left the house yet. Something gets a little better every day though.