Hello everyone! I would like to start off by saying thank you for visiting my blog. The amount of support that I am receiving is unbelievable.
I think that I need to take a moment to add a little background. I am 25 years old, otherwise healthy, and just lucky enough to snag the most beautiful girl in the world, my wife of nearly 4 years. Marissa has been at my side every step of the way and without her I would be fighting an uphill battle. As it is, with Marissa by my side, and with your help, I truly believe that there is nothing that I cannot beat.
Back to the background, I started showing some symptoms around 1 year ago. I would occasionally complain of some pain in my stomach. The pain would linger for a couple of days, but it was nothing that I couldn’t tolerate. And just as it came, it would go. I would feel great for a month or two, and then it would return. This occurred with some regularity over the next few months until I became concerned. In late December, 2007 I decided that I should have the doctor take a look.
Marissa had been seeing a Family Practitioner that she seemed to like, Dr. Sangita Sharma, so I decided to let her take a look. I visited with her just after Christmas, explained my symptoms and she seemed to be at a loss. She thought that perhaps it was bladder related, but wasn’t sure. She ordered a CT scan to further investigate her hunch.
After checking with my insurance company about the coverage of the CT scan, I was surprised to see that it was not covered at all. The out of pocket cost would be in the range of $3,000. At that point I really began to feel better, physically. The pain just seemed to melt away, as the thought of parting with $3,000 for a test that may or may not yield results concerned me. Dr. Sharma was outraged (at the healthcare system, not me) that my health care coverage seemed to be controlling my decisions about my health. She was sympathetic, and agreed to help me pursue other avenues.
Since the first hunch was bladder related, I was referred to Dr. Stark at Georgia Urology. My visit with Dr. Stark a few days later was quite uneventful. I received very little care from Dr. Stark in that visit, but rather had to listen to him rant about Dr. Sharma’s hunch that it was even Urology related. He ordered a CT scan as well and sent me on my way.
Well, of course, if I am not willing to pay for a CT scan for Dr. Sharma, then Dr. Stark is just out of luck as well. Obviously, it was discussed that I would not be having the scan performed, but he ordered the test anyway. I believe that I have relieved all doubt that I will no longer be receiving care from Dr. Stark.
After the horrible visit with Dr. Stark, I received a follow-up phone call from Dr. Sharma. We discussed the visit and that Dr. Stark seemed certain that it was not urinary related and decided that the next best place to visit would be the gastroenterologist.
A few days later, now early January, I went for a visit with Dr. Talapaneni at Atlanta Gastroenterology. After a short and, again, uneventful visit, Dr. Talapaneni seemed certain that it was not GI related, but would like a CT scan to verify. She also ordered a colonoscopy.
At this point, I am really getting the feeling that we are grasping at straws, and each time we are getting the short straw. Dr. Talapaneni said that she wasn’t sure what was going on either. Every doctor that I have seen wants a CT scan that I am not willing to have, and one doctor wants a colonoscopy. My Urologist thinks that I have a GI related problem, my GI doctor thinks that I have urinary symptoms, and my family care doctor is stuck in the middle. My decision seems easy. I have only a mild pain, which comes and goes at random. I decide to wait for insurance open enrollment with my employer.
Over the next few months, the symptoms began to become more persistent. As I mentioned earlier, the pain in my abdomen would come and go. As time went by, however, each “wave” of pain became more intense and stayed for a longer duration. The pain began to hang around for a week or two, whereas in the beginning it would last a day or two. Of course, as anyone else would, Marissa and I would research my symptoms on the internet. But with relatively few symptoms, we would always come up empty handed. It wasn’t until late one night, maybe early April, that I began to press on my abdomen and noticed a firm “mass”. I could press on it and really not feel any pain. I could, however, create pain with it. For instance, if I pressed on the left side of my abdomen, I would feel pain on my right side, and vice versa. At that point I began to put the pieces of the puzzle together. I had self-diagnosed a mass in my abdomen, that seemed to have no sensation of pain itself, but rather caused pain by pressing into the other organs in my abdomen and pelvis.
Fast forward to May 1, 2008. I reviewed the health insurance options with my employer, and opted for the best of the group. I now have a $1,000 deductible and 100% in-network healthcare coverage. I knew that I needed to have this checked as soon as possible, and had a hunch that it might require some type of surgery for its removal.
So……back to Dr. Sharma’s. I scheduled the CT scan for the first available appointment, May 9, 2008. I haad a CT scan performed with and without intravenous contrast. I was told to expect results by Tuesday, May 13.
I was working on Tuesday morning when I received a telephone call from Dr. Sharma regarding the results of my CT scan. She said that the results were in and that she would like to meet with me to discuss. I was asked to report to her office within one hour. Luckily, Marissa was not working on this day, so I invited her to come along.
As Dr. Sharma entered the office, she seemed anxious. As she began to read the radiology report, she became nervous and asked Marissa to stand by my side. The one thing that you never want to see from your doctor is emotion. Her anxiety was obvious as she read the report. The report said that a there was a mass in my abdomen, later described to be the size of a “nerf football”. At this point, I think Dr. Sharma was expecting me to show some emotion, but the emotion that she received was unexpected. Maybe I should have been a little more upset than I was, but sometimes naivety can work in your favor. My thoughts: I was actually a little bit excited at the diagnosis. I have basically self-diagnosed myself as having a benign mass in my abdomen and I was excited that I was at least partially correct. So, now it is confirmed, I have a mass in my abdomen that is causing all of my pain. Removing this mass should be a simple procedure, as the abdomen is easy to get at for surgery. Once the mass is removed, I will be pain free. And because this tumor is actually new growth that is being removed, it seems clear that all of my other organs are in great shape, if only a little crowded.
Dr. Sharma seemed relieved at my reaction, but did not seem nearly as confident that the mass was benign. The radiology report included a section at the bottom entitled “Impression:” which said that the mass appeared to be lymphoma or a long-standing sarcoma. It was recommended that a tissue biopsy confirm the “impression.”
Dr. Sharma referred me to a General Surgeon, Dr. Kramer, who was able to work me into his schedule the following morning for consultation. At this appointment, we discussed the radiology report and he looked at the images from the CT scan that I had brought with me. He explained that I basically had four options in proceeding with my diagnosis. 1). We could do a CT guided needle biopsy. 2). We could do a surgical tissue biopsy 3). We could remove the entire mass completely or 4). Start chemotherapy and radiation to shrink this “extremely large” abdominal mass. The benefits to numbers 1 and 2 are that you get a confirmed diagnosis, with minimal invasion. The downfall of numbers 1 and 2 are that if cancer is confirmed, that a “trail” will have been left to (although extremely rare) spread cancer cells to other parts of my body. Number 3, while obviously being the most invasive would be the best option if the cancer was confirmed to be contained within the mass. And number 4, would simply be a long process (maybe months) that could not be justified without a diagnosis of cancer.
Dr Kramer, being a general surgeon and not a cancer specialist, decided that he needed the help of his radiology team and oncology team at Emory Eastside to assist him in making this decision. Dr. Kramer then met privately with the “team” and called me later in the morning.
The decision turned out to be number 1, a CT guided needle biopsy. I was scheduled for the biopsy procedure on Monday, May 19 at Emory Eastside day surgery. It was a 45 minute procedure that turned out to be quite painless. A needle was placed into my abdomen, and then with the needle still in my abdomen, a CT scan performed, showing the exact location of the needle. Once the needle was confirmed to be in the center of the mass, a core tissue sample was drawn into the needle. One common flaw with this needle biopsy is that the pathologist frequently receives a sample that is too small to conduct extensive pathology. To make sure this was not the case the pathologist actually reviewed the sample while I was on the table to confirm that the quantity was sufficient. I was told after the biopsy to expect results in 2 or 3 days.
After a few anxious nights, I received a telephone call from Dr. Kramer at noon on Friday, May 23. The conversation was short, but direct. The full pathology report was not yet complete, but they had confirmed that the tumor was malignant. He had spoken with the pathologist and confirmed malignancy, but the exact type, and staging were not yet complete. So that was it. In a simple telephone call, I have cancer.
Dr. Kramer, again, being a general surgeon, implied during our short conversation that I was being released from his care and that I should handle all further concerns with Dr. Allan Freedman at Suburban Hematology – Oncology. I was given a name and telephone number, and very little support. I was really expecting to receive devastating news such as this in the doctor’s office, but then again, it was noon on the Friday before Memorial Day weekend.
After contacting Dr. Freedman’s office, I was told that the first available appointment with Dr. Freedman was June 12. If I would like to see an associate of Dr. Freedman, Dr. Singh was available on June 3, and Dr. Sarma (not to be confused with my family doctor, Dr. Sharma) was available June 9. The receptionist actually told me that these appointment dates were unacceptable but that there was nothing that she could do to help. She recommended that I call Dr. Kramer and have him speak directly to Dr. Freedman to request an earlier appointment. Multiple attempts to reach Dr. Kramer came up empty handed, and I actually have still not received his return call today, 6 days later. Thank you, Dr. Kramer. My only option was to speak with Dr. Sharma about the appointment scheduling. As it turned out, she actually knew the doctors and gladly called and scheduled the appointment on my behalf. My appointment was scheduled with Dr. Sarma on Tuesday, May 27.
Meeting with Dr. Sarma on May 27 yielded little information. He had contacted the pathology department at Emory University regarding the pathology report that was scheduled for completion 6 days prior. The report was still not complete, but they had a few more comments to add to Dr. Kramer’s assessment on Friday, May 23. The most significant of these comments was that my cancer had been diagnosed as an undetermined variety of soft tissue sarcoma. Dr. Sarma told us that there are around 5,000 cases of sarcoma diagnosed each year in the U.S. Further research has told us that there are over 50 types of sarcomas. These factors combined, according to Dr. Sarma, make this type of cancer rare. He said that if you take that number of annual sarcomas, divided by the number of oncologists in the U.S., that most oncologists have never seen any type of sarcoma. He also noted that sarcomas in general are notorious for spreading to other organs very easily.
Dr. Sarma also noted that there was a 1 centimeter spot on my liver which has aroused suspicion. He said that he wanted some tests run over the next couple of weeks to investigate. A PET scan was scheduled for Friday, May 30, and two MRI’s were scheduled for Monday, June 2. The PET scan would show any cancer that has spread into my bones as well as other major organs. The MRI’s will consist of two different scans. One scan will be of the brain to check for brain tumors, the other scan is of the pelvis. The pelvis scan will address a relatively new symptom that has presented itself in the past two weeks. I am experienced severe pain in my lower back and left leg that feels like a pinched nerve. Dr. Sarma thinks that my tumor has actually become entangled in my Sciatic nerve, causing the symptoms of a pinched nerve. The pelvic MRI will determine the extent of this problem.
A follow up appointment was scheduled to review the results of this test on Monday, June 9. Now hopefully you just caught the same ironic clue that I caught. When I was trying to make an appointment with Dr. Sarma on Friday, his next available appointment was Monday, June 9.
I spoke with Dr. Sharma today, Thursday, May 29 and was told that the pathology report was still not completed, 1 week and 3 days after the biopsy was conducted. The original time estimate for the release of the pathology report was 2 or 3 days. I expressed my concern with Dr. Sharma that I was worried about the delays in the diagnosis. To me, it appears that they do not have an answer. They cannot determine the type of sarcoma. Dr. Sharma agreed.
Basically, I am losing hope in the health care system at Emory. I feel as though I am not getting the attention that my case deserves. The doctors lack any sense of urgency.
Internet research has turned up a few possible solutions, the most promising of which is MD Anderson Cancer Center, University of Texas, Houston. Our research has lead us to this facility, ranked #1 in the nation for cancer treatment. MD Anderson has a department that is dedicated to the treatment of sarcoma cancers. We have since discussed this facility with Dr. Sharma, family, friends, and those who have personally been to the center. Everyone agrees that seeking treatment at this location gives me the best possible chance to beat this cancer.
If you have made it this far into the blog, there is no doubt that you are sincere in your efforts to help Marissa and me get through this tough time. I am sorry for such a long and wordy background, but hopefully now I can begin to make brief posts of the day’s news without extensive explanation. The beautiful thing about this blog is that if you lose interest, you do not have to continue reading.
Please check back frequently for updates, which should be daily now. Thanks for reading.