The radiation oncologist called me back that evening and I asked him why the sudden change in treatment. He explained that where my cancer was located it could be treated either way, i.e. with or without neoadjuvant therapy. He said that he had spoken with my surgeon and that the surgeon was strongly in favor of doing radiation and chemo prior to surgery. There was a 20% chance that neoadjuvant therapy would be overkill in a case like mine. However, if I opted to have surgery first without neoadjuvant therapy and something was found during the surgical procedure that didn’t show up on any of the scans, they would be kicking themselves for having lost that treatment window of opportunity. In a tough case like this it would be best to err on the side of caution. Ultimately, the burden of responsibility rests on the shoulders of the surgeon and if he feels that pursuing neoadjuvant therapy will make it easier for him to resect the tumor and reduce the risk of recurrence then he was willing to back him up 100%. He said that he was meeting with my oncologist that evening and they would be discussing my case. The next step would be radiation mapping and a port placement.
Tuesday, November 30, 2010
“More cowbell”
Tuesday, 11/30/10
The day after Thanksgiving I contacted the surgeon’s office to see about scheduling my colectomy, but the person in charge of scheduling was busy and I had to end up leaving a voice mail. I called again on Monday and it was like déjà vu all over again. I left another voice mail, but no call back. When I called on Tuesday I told the receptionist I had been calling for three days and had yet to speak to a warm body. She apologized, took my contact info and told me that I should receive a call within the next hour. When the phone rang I was expecting the scheduler to be on the other end, but was surprised to find that it was my surgeon. He told me that I needed to have neoadjuvant therapy prior to surgery. When I mentioned that the radiation oncologist I saw the week before stated I didn’t need to have neoadjuvant therapy he response was that he had just spoken to the radiation oncologist that afternoon and he agreed that I should have radiation and chemo prior to surgery.
He went on to explain that he and the gastroenterologist believed that my tumor was of rectal origin and the standard protocol for treating rectal cancer is neoadjuvant therapy. It would help shrink the tumor, making it easier to resect and the risk of recurrence would be lower. While I understood his rationale for wanting to pursue neoadjuvant therapy I couldn’t help wonder why the radiation oncologist had changed his tune. After talking with the surgeon I put in a call to my radiation oncologist. My mind was still trying to process the conversation I had with the surgeon. The more I thought about it, the more frustrated and agitated I became. I wanted some answers and a concrete game plan…no more surprises.
Friday, November 26, 2010
“Now I’m verklempt”
My side of the family came to our place for Thanksgiving this year. A few days before my sister, Margaret had called and asked if would be okay if she brought some music, said a few words and did a laying on of hands after dinner. She and her husband are very spiritual people and I agreed.
After Thanksgiving dinner that evening my sister Margaret played a CD with the chant “Veni, Sancte Spiritus – Come Holy Spirit”. My brother-in-law stood, placed his hand on my shoulder, read a short passage from scripture and said a few words. One by one, each person at the table came over, placed their hand on my shoulder and said a few more words. In the beginning I felt nothing, but as each one of sisters spoke I could feel the lump in my throat growing and before long I was starting to tear up. My wife came over and wrapped her arms around me. It was a profound spiritual moment and one I will never forget.
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| Linda Richman - Coffee Talk |
Tuesday, November 23, 2010
“Doctor, my eyes, tell me what you see…”
Monday, 11/22/10
I met with the radiation oncologist to discuss my case. He reviewed all of the scans including the MRI that was performed on Saturday. We talked about the differences between colon and rectal cancer. He mentioned the same things that my oncologist had told me and added that the lymphatic drainage is different for the two types of cancer. The lymph fluid from the colon drains into the mesenteric lymph nodes while the lymph fluid from the rectum drains into the pelvic lymph nodes. He went on to say that there would only be two reasons for performing radiation prior to surgery.
1. If the tumor was low in the rectum, i.e. closer to the anus it would be more difficult for the surgeon to remove and radiation would help shrink the size of the mass making it easier to resect. The same would also apply to cases where the tumor exhibited extension into the pelvic area, which can be seen in advanced stages of the disease.
2. If the lymph nodes appeared to be involved.
He said that based on the MRI, the majority of my tumor appeared to be in the distal end of the sigmoid colon with a slight dip downward into the rectum and there didn’t appear to be any extension of the tumor into the pelvis. The lymph nodes were clear on the CT & PET scans and measurements taken from the MRI determined the lymph nodes were about 6 mm in diameter, which was within normal limits. Therefore, I didn’t need radiation and chemo prior to surgery. This was great news!
I told him that I was worried about the long-term effects of radiation exposure, e.g. chronic gastroenteritis, bladder or prostate cancer. In years past, radiation was administered using a relatively broad path and other organs could be affected. He said that radiation treatment had changed quite a bit just in the last five years and new technologies had been developed like intensity-modulated radiation therapy (IMRT), which uses a much smaller beam. Target areas can be painted with surgical-like precision, thus avoiding other organs. He went on to say that while I didn’t need radiation or chemo before surgery we would have to wait for the pathology report on the lymph nodes harvested from surgery to see if I needed post-surgical treatment. If any nodes were positive I might need to have IMRT, but we would cross that bridge after surgery.
"I get by with a little help from my friends"
Saturday, November 20, 2010
“Do you hear what I hear?”
Saturday, 11/20/10
I went to the hospital and checked in at 8:00 AM so that I could fill out another stack of redundant paperwork before my MRI. The tech came and escorted me down the hall to a dressing room near the machine. I was able to keep my tee shirt on, but the jeans had to come off because of all the metal, e.g. button, zipper and rivets. They gave me two of the one size fits none hospital gowns, one to cover the front and other to cover the back. I walked into the adjacent room and laid down on the table connected to the MRI, shading my eyes from the bright lights above and listening to the chirping of the machine in its resting state.
The room was quite chilly and the technician draped a warm blanket over me. The equipment is very noisy while in operation and she gave me a pair of headphones that played Christmas music for the duration of the scan. I placed my arms above my head as the table moved into the machine. I thought the chamber for the PET scan was confining, but that was nothing compared to the MRI chamber. My face was about four or five inches from the opening and my arms were held tight against the sides of the chamber. My oncologist had ordered a scan with and without contrast so I figured the whole process might take a hour. The technician did a couple of quick scans and then pulled me out of the chamber for about 15 minutes while a radiologist across town read the images and decided what protocol should be used for the remaining scans. I could be wrong, but “reviewing protocols” sounded like code for a Starbucks run.
The table moved back inside the chamber and three more scans were performed. I hadn’t taken any Aleve that morning and my back was really starting to hurt from lying on the hard table so long. In retrospect, I should have taken a muscle relaxer and maybe some Vicodin…paging Dr. House. Toward the end of the third scan I couldn’t feel my right arm because the gown was tight through my shoulders and it was also pressed up against the machine. I hadn’t eaten anything that morning and just had a little water to drink, yet another mistake. I still can’t feel my arm and now my heart starts beating faster and my chest is feeling tighter with each breath. I was having a hard time catching my breath. I’m usually not claustrophobic, but I could feel the anxiety building and I knew if something didn’t change soon I was going to panic. I kept trying to tell the technician, I can’t breathe, I can’t catch my breath. Of course the response I got was a patronizing voice saying “yeeeaaaaah, we know...” and I’m like, no you don’t know, I really can’t breathe!
They pulled me out of the machine and my right arm fell to the side. It took a few minutes before feeling came back and I could move it. I was able to take a few sips of water before going back in for the last scan without contrast. They did the scan, pulled me out and tried to run an IV, but I was so dehydrated by this time that the techs weren’t able to it. They had to call in the “IV Team”, which is like the A-Team only for IVs…they pitied the fool (me) and got the contrast solution pumped in right away.
Friday, November 19, 2010
Heads it’s colon, tails it’s rectal
Friday, 11/19/10
I met with my oncologist and we talked about the results from the PET scan. There did not appear to be any increased metabolic activity in the liver, lungs or elsewhere, which was good. However, the origin of the tumor was still in question. He thought that it may be a colon tumor that had a slight extension down into the rectum rather than a true rectal tumor. The distinction was important because colon and rectal cancers are treated differently.
Typical treatment for rectal cancer
1. Neoadjuvant therapy consisting of radiation & chemo using 5-Fluorouracil (5-FU)
2. Surgical removal of the tumor
Radiation is used in rectal cancer to help shrink the size of the tumor making it easier for the surgeon to remove. This is especially true in advanced cases of the disease where the tumor has penetrated the rectum and extended into the pelvis. In addition, clear margins (unaffected areas of normal tissue lying adjacent to the tumor) can be difficult to obtain if the tumor is low in the rectum near the anus.
Typical treatment for colon cancer
1. Surgical removal of the tumor
2. Follow up chemo using FOLFOX (Folinic acid, 5-FU & Oxaliplatin)
Radiation carried with it a certain amount of risk depending upon how the treatment was performed and the size of the area being treated, e.g. chronic gastroenteritis if portions of small bowel were in the path of the beam and increased risk of bladder or prostate cancer in the future. Rectal tumors not treated with radiation had a higher chance of recurrence.
The CT scan had provided basic anatomical detail and the PET scan had characterized metabolic activity, but more information was needed to pinpoint the location. There were two options, endoscopic ultrasound, which isn’t currently available in Fort Collins or MRI. He scheduled an MRI for the next morning and was referring me to a radiation oncologist who would interpret the results and determine if radiation treatment was necessary.
Background
Cancer is a subject that many of us choose not to discuss. The word itself evokes fear and is often associated with grief over the loss of a loved one. It takes residence in the back of our minds as we go through life and from time to time we hear of others who are afflicted, but we never think it’s going to happen to us. Even when warning signs are present we may choose to ignore them or pass it off as something else until it’s too late. Often times people are too embarrassed to discuss symptoms they may be experiencing, especially when it comes to certain parts of the anatomy. While silence is golden in most cases it can also have devastating consequences. To quote Sir Francis Bacon, “knowledge itself is power”, but I say all the knowledge in the world is powerless unless it is shared. It is my intent to share my knowledge, my feelings and few laughs so that others may be informed and empowered to seek the help they need.
I’ve studied breast cancer most of my career and more recently colorectal cancer. In an ironic twist of fate I coauthored and published a paper this year on a new method for analyzing early changes in colon tissue that are related to the development of cancer, all the while unaware of the cancer that was growing inside me. I knew all of the warning signs of the disease, but failed to make the connection right away.
"Denial isn't a river in Egypt"
About six months ago toward the end of April, 2010, I was in the midst of moving my family to a different house here in Fort Collins. I noticed some small traces of bright red blood in my stool. At first I thought, is this real or am I dreaming? I tried not to think to much about it about it. Perhaps it was just the stress and strain associated with moving. It cleared up the next day and I thought nothing more of it until it happened again in mid June. I did a little more research and found that black or tar-like stools were often linked to problems in the colon or higher up the intestinal tract. The bright red color I had noticed was typically linked to internal hemorrhoids. I had no pain or any discomfort related to these episodes, which again pointed to symptoms of internal hemorrhoids. Two of my sisters had problems with hemorrhoids and I found out later that my father had surgery for hemorrhoids. I hadn’t been eating much fiber and I was sitting behind a desk all day long at work, so it stood to reason that internal (secondary) hemorrhoids were to blame. I knew I should probably go to the doctor and have it checked out, but my 12 year old daughter had just had surgery and I wanted to focus on getting her well first. In hindsight, this was probably just an excuse to procrastinate.
I was feeling pretty sluggish most of the summer and early fall. I wasn’t watching what I ate very well so I just attributed the fatigue I was feeling to diabetes, which I had been dealing with for the past eight years. The bleeding returned in August and again in September. The episodes were becoming more frequent and I knew I should probably discuss this with a physician, but the researcher in me wanted to see more data. I went to Walgreens and picked up a fecal occult blood test (FOBT) kit to see if blood was still present in my stool during those times when I couldn’t see anything noticeable. It’s simple $10.00 test kit consisting of paper test strips with a positive control packet and results can be read in about two minutes. Two out of the three test strips showed positive results.
Monday, 10/11/10 – Uh, we just met...
My doctor had left the practice a year ago and I was going to be seeing a new physician whom I had never met. We discussed my symptoms and she thought it would be a good idea to refer me to a specialist. She said that a digital rectal exam (DRE) needed to be done and that she could do it or I could wait until I saw the specialist. “I’ll wait!” I said without hesitation. It wasn’t until that moment I completely understood the feeling of trepidation many women must have with male doctors. She referred me to a male gastroenterologist and I was lucky enough to get an appointment the next day.
Tuesday, 10/12/10 – The scoop on the scope
My sister, Margaret had been encouraging me for a quite some time to get a colonoscopy, totally unaware of my current condition. She had one performed at age 48 and a polyp was found during the procedure. Another sister, Libby had a colonoscopy performed at age 53 and a polyp was found during her procedure too. I met with the gastroenterologist, told him my symptoms and family history, which included my grandfather who died of colon cancer in his seventies and two older sisters who had polyps removed during their colonoscopies. I was trying to prepare myself mentally for the dreaded DRE knowing that at any moment he would whip out the gloves and lubricant.
I came back to reality and he mentioned that the risk of colon cancer goes up significantly for those who have had relatives diagnosed with the disease before the age of 50, but since my grandfather was diagnosed later in life it wasn’t too alarming. His diagnosis was leaning more toward internal hemorrhoids, which is what I had been thinking all along. I asked about a colonoscopy and generally they’re not performed until age 50, but since I was only 3 years away from being 50, had diabetes and family history of colon cancer and polyps he decided that we should go ahead just to make sure. In addition, he would check my prostate during the procedure since I had a uncle who had been diagnosed with prostate cancer. It would give me some peace of mind and I wouldn’t need to have another one for a few years. I felt quite relieved that I would be getting a colonoscopy instead of a DRE.
Tuesday, 11/2/10 - “Let’s get ready to RUMBLE!”
The day before my colonoscopy I had to perform “the prep”, which my sisters said was the worst part of the whole procedure. I couldn’t have any seeds or nuts for five days prior and today I was to eat a light breakfast consisting of hot cereal and/or boiled eggs. After that I could only have beef or chicken broth and lots of clear liquids, e.g. apple juice, white grape juice, 7up, Sprite or water. At 4:00 PM I took a couple of Dulcolax per the instructions. At 6:00 PM I had to down a bottle and half (22.5 oz) of lemon flavored magnesium citrate, which is basically lemon flavored salt water, much like what I imagine a McDonald's margarita would taste like if they offered such a thing…McNasty! After about 30 minutes I was wondering when the effects of my McMargarita would kick in when I felt a sudden sense of urgency. When they tell you to remain close to a toilet they mean it. I had to keep drinking fluids throughout the evening, but things finally calmed down around 10:00 PM.
Wednesday, 11/3/10 - “Thank you sir, may I have another!”
Just a few hours of rest and I was up at 3:30 AM to down another 22.5 oz McMargarita. I had to be at the surgery center at 6:45 AM and kept thinking how is going to be possible in my current state, but I made it. Fortunately, I had filled out the plethora of paperwork a couple of days before so all I had to do was check in and wait. It wasn’t too long before called my name, took me back and gave me a one size fits none hospital gown. While my wife, Andrea was in the waiting room the door opened for a moment and she caught a glimpse of me on the gurney. Seeing me lying there motionless was an emotional moment for her. Throughout our entire marriage I had always been the rock, there to take care of her and our daughter. For the first time she saw me as a vulnerable human being.
As they wheeled me down the hallway I could only see the ceiling tiles and listen to the seemingly disembodied voices of nurses and others around me. I thought about our daughter who had just had surgery a few weeks before and how bewildered she must have felt. She has autism, can’t speak and has the cognitive abilities of a toddler. I knew why I was there and what was going to happen to me, but she had no idea why she had been pulled from her bed so early in the morning only to have a group of strangers poke and prod.
The good news is you’ll be saving money on haircuts. The bad news is...
I don’t recall a thing from the procedure itself. They used a technique called conscious sedation, which has lower risk than general anesthesia. They said I would remember nothing and they were right. I was talking to the anesthesiologist one moment and the next I was waking up in recovery. They brought my wife back to see me and the doctor came in. I was still a little loopy from the anesthesia when I asked him, “so what’s the story”? I expected him to say that he confirmed his suspicion of hemorrhoids and maybe a polyp was found. Instead, he looked at me and said the three words no one wants to hear, “you have cancer”.
He proceeded to tell me it was a 3 cm mass in the rectum about 18 cm from the anus. He had taken a biopsy to confirm the diagnosis, but we wouldn’t have the pathology results for a couple of days. He also found a polyp in the hepatic flexure between the ascending and transverse colon. I was trying to wrap my head around what he was telling me. I didn’t know how to respond and I was still trying to shake off the effects of the anesthesia. He said that it was serious and wanted to schedule a CT scan right away, that day if possible. He also said I would need to schedule appointments with a surgeon and oncologist, but would give me a couple of days to process the news. The nurse came in to draw some blood for general labs and another test called carcinoembryonic antigen (CEA), which is normally present, but elevated in patients with colon cancer. I’m a pretty tough draw and she had to stick me a couple of times to get enough blood before the vein would collapse.
“Stickin’ it to the man”
I was able to get the CT scan scheduled for noon that day and they left the IV in since the scan was being performed in the same building. I went downstairs to the imaging center and had to drink a liter of contrast solution. It tasted like crystal light and was so much better than my McMargarita from the night before. I had to wait for a little over a hour for solution to make its way through my body before doing the scan. By the time I got into the imaging room my IV had clotted. The nurse tried to flush it, but was having a difficult time. She said that another IV would need to be started. “Are you sure?”, I said…big mistake. She told me the IV would be hooked up to a machine that administers the contrast dye and then proceeded to demonstrate the flow rate using my blocked IV. The pressure was so intense I just about jumped out of the chair! Like I said, I’m a pretty difficult draw and my veins are hard to find under normal conditions, but being dehydrated had made it even worse. As she was thumping my arms and hands she kept giving me this look of uncertainty like she didn’t know if she could do it or not. I told her at least I couldn’t be accused of being an IV drug user and that broke the tension. She was able to get the IV started and had me lay down on the imaging table, which is about as narrow as an army stretcher and less comfortable than a hide-a-bed with that metal bar that slices into your back.
She injected the contrast dye and said I might notice a metallic taste or smell and that I might have a warm or flushed feeling. In addition, she said that I might feel a sensation in my lower body like I had soiled myself. A moment or two passed and she would ask if I felt anything. I couldn’t taste or smell anything and didn’t feel warm then all of the sudden I felt this weird sensation like I had soiled myself, the dye was working. I injured my back over a year ago and ever since then laying down and getting up had been somewhat precarious. The nurse used a pillow to elevate my knees and as the table moved in and out of the scanner I had to keep holding my hands in the air above my head. As my body moved further into the scanner my arms were extending backward putting pressure on my back. I was convinced the CT scanner was really just a medieval rack shrouded in technology.
“Quod me nutrit me destruit - what nourishes me destroys me”
We left the surgery center and got a bite to eat at Red Robin. I ordered a burger and fries out of habit and I as sat there eating I couldn’t help but think that this stuff was killing me. It was at that moment I decided to make significant changes to my diet. Eating meals loaded with fat and carbohydrates are okay once in a while, e.g. special occasions and holidays, but my problem was I treated every day like a holiday. No longer would continue down the path self-destruction. I would decrease the amount red meat, fat and carbs and increase the amount of fresh vegetables and fruits, in essence I was choosing a plant-based diet.
A couple of days later the gastroenterologist called with the results. The pathology report confirmed his diagnosis. It was a moderately differentiated invasive adenocarcinoma. The good news was that the CT scan showed no spots on the liver and the lower chest looked clear. The liver and lungs are both sites where rectal cancer can metastasize. In addition, none of the major lymph nodes appeared to be involved. However, we wouldn’t know about involvement of the minor lymph nodes until the tumor and mesenteric lymph nodes were surgically resected. The next step was to see the surgeon and onocologist.
Tuesday, 11/9/10 – “Speaking words of wisdom”
My wife accompanied me to the surgeon’s office in the morning. I checked in and was handed a stack of paperwork to fill out. The top sheet was a computer print out of all the pertinent information that was needed, yet they we’re still wanting me to waste time, paper and ink filling out form after form with the same answers. I was so irritated that before long I was shaking my head and mumbling expletives under my breath with each page I turned. I just kept thinking, there’s got to be a better way. Once the paperwork was done it was time to hurry up and wait. I was still irritated, but I was also starting to feel anxious about meeting with the surgeon. My biggest fear was that a colostomy would need to be performed. As I sat there thinking about what was yet to come, I was listening to the music in the waiting room when The Beatles “Let it be” started playing. The song had helped me so many rough times in the past and today was no different. A calm came over me at that moment and I knew it was going to be okay, that I should stop worrying and just let it be.
We met with the surgeon and he went over the procedure. The surgery would be done laproscopically and the tumor was located high enough in the rectum that a colostomy wouldn’t be necessary, thank God. He would resect the affected portion with clear margins and join the sigmoid colon to the remainder of the rectum. It all sounded pretty straightforward. The big question now was would the surgery be done first and then chemo or would I need radiation and or chemo prior to surgery, commonly referred to as neoadjuvant therapy. In either case I would need a procedure done for a port placement, a small disc-like device positioned under the skin in the chest with a catheter inserted in major vein through which chemotherapy drugs are injected and blood samples are drawn. The surgeon would need to discuss this with my oncologist before scheduling surgery.
He performed a routine exam and then he said he needed to perform a DRE. Out came the gloves and lube along with a flimsy paper drape that is supposed to create a pseudo sense of privacy. My backside was facing the door and I just knew any second a nurse would be entering the room to strip me of any remaining dignity. The exam was quick and what I had been DREading for so long was really wasn’t that big of a deal.
We left the surgeon’s office and had lunch at MAD greens, my new favorite place. I checked in at the oncologist’s office that afternoon and proceeded to fill out…you guessed it, more paperwork! Filling out the same answers to the same questions at all of the different doctors offices was bad enough, but what makes it worse is the nursing staff and even the doctors ask you the same questions over and over again like a scene from Office Space…”Did you get the memo about the new cover sheets for the TPS reports”?
We met with the oncologist, he went over my family history and determined that there was probably a genetic trait responsible for increased risk of polyps and colon cancer in my family and that metabolic syndrome, i.e. insulin resistance likely played a key role in progression of my disease. Being a histotech, I couldn’t resist asking if we could perform some immunohistochemical tests like Ki-67 to measure the rate of cell proliferation (labeling index) or epidermal growth factor receptor (EGFR).
We talked about other tests such as microsatellite instability (MSI). Microsatellites are repeating sequences of DNA found in normal cells. When DNA damage occurs the length of these repeats can become shorter or longer as the result of errors in the normal DNA repair process. If damage occurs in key areas that code for tumor suppressor genes these genes will become inactivated and allow cells to grow out of control. MSI can be linked to an inherited form of the disease called hereditary nonpolyposis colorectal cancer (HNPCC) or Lynch syndrome. We also talked about looking for K-Ras mutation, which is involved in cell signaling and can stimulate cell growth. While MSI & K-Ras testing were still on the table he wanted to order a PET scan, which would provide more a more detailed view than the CT scan I had done earlier. In the meantime he would confer with the surgeon.
Tuesday, 11/16/10 – “so bright, I gotta wear shades”
The prep for the PET scan was certainly easier than the colonoscopy. I had to eat a high protein no carb Atkins-like breakfast, e.g. eggs, sausage, cheese, all the stuff you aren’t supposed to eat. I had to fast the rest of the day until my appointment at 3:00 PM and drink nothing except water. I was going through coffee/caffeine withdrawal and fighting to stay awake. Andrea came with me to the appointment. I got to fill out more paperwork, but I was getting faster at filling out the forms so it didn’t take too long. I had to empty out my pockets and I just kept giving things to Andrea. She needed another purse just to hold all of my stuff.
The tech came out and escorted me back to a prep room where he started an IV and prepared the contrast solution, radioactive fludeoyglucose (110 min half-life), inside a lead brick-lined box. He injected the solution into the IV and I kept thinking of all the years I had been in the lab and taking precautions not to expose myself only to end up having a radioactive compound circulating through my body. He said that I shouldn’t have close contact with anyone for a couple of hours after the procedure until the compound had time to completely decay...this wasn’t helping my anxiety. I had to wait an hour so that the fludeoxyglucose could be metabolized prior to imaging. Cells with high metabolic activity like cancer cells have increased uptake and will light up on the scan.
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