Hi everyone. Short time reader, first time poster. Please allow me to share my somewhat unusual lymphoma story.
At the beginning of August, I began noticing some blood in my stools. Thinking it was just hemorrhoids or something not so serious that would go away on its own I just kept an eye on it, but after a month with the bleeding only increasing I finally went to a proctologist. A rectal exam confirmed the blood, but not the source of the blood, so I scheduled a colonoscopy that I had to wait another month for because I wanted to do it on a Saturday so as not to miss work (which is funny, given how many days of work I would go on to miss...) I was also still secretly hoping that the problem would go away on its own and that I wouldn't have to do this, but the bleeding kept increasing to the point where a small stream would come out of me, so I finally realized that I would have to actually go through with it.
The colonoscopy itself at the Yokohama clinic (oh yeah, I'm an American living in Japan!) was actually mostly painless, but near my rectum, they did find a very large, bleeding lump, far too big to take out. He did take a biopsy, told my wife and I that it was very likely colon cancer, and said that we should not await the biopsy results and immediately see a doctor that he knew at the University of Tokyo Medical Research Center.
The doctor did a digital exam and said that, if this cancer had spread, we would be talking about how to improve the quality of life for the few months I had remaining. Two very long days later I went through a battery of tests that included a CAT scan and barium enema. A little while later, he gave us the good news that the cancer had not spread, and was most likely a Stage 2. Given the difficult location of surgery near my rectum, he suggested a month of radiation treatments to shrink the tumor before surgery, at which point he said he could improve my chances of not needing a stoma (artificial anus, ie, doing number two in a bag for the rest of my life) to 50%. This was scheduled to start at the end of October, before which he also wanted to take some additional biopsies to confirm the diagnosis.
On the day of the biopsy and the day I was to begin radiation treatment, the doctor called us into a room again and apologized, saying that there had been a change in my diagnosis. The results of my original biopsy had come back, and they said that the results said that the lump was not colon cancer, but Diffuse Large B-Cell lymphoma. This, he said, would change everything, and there would be no radiation or surgery. Having finally gotten used to the idea of having colon cancer, and knowing nothing about non-Hodgkins lymphoma, this threw me for an even bigger loop than my colon cancer diagnosis. "Good grief, now what do I have!?"
After scanning the internet a bit, I eventually came to understood that this wa, in fact, good news. This condition could not only be treated with chemotherapy, but actually cured! But extra-nodal lymphoma, especially in the colon, is apparently quite rare. And I was again surprised when the results of the second, more extensive biopsies came back "inconclusive". What? You poked me seven times and couldn't confirm the diagnosis from the previous one!? So November passed with attempts to get the original Yokohama sample and confirm from that. Meanwhile, all the biopsies had increased the bleeding to the point where I had to go to the bathroom literally every two hours to spit blood out of my arse. A good night's sleep was of course out of the question, and the blood loss was starting to make me anemic. So when they still couldn't confirm the original diagnosis, I was hospitalized for observation and for another battery of tests to confirm that the lymphoma was nowhere else to be found while the issue was taken up at a monthly meeting of lymphoma specialists.
At the end of November, the specialists and doctors were finally convinced that this was indeed NHL. A couple of days later, the doctors were also finally satisfied that the lymphoma was nowhere to be found in any of the other suspicious places like, um, the lymph nodesAt last, after months of uncertainty, I had a diagnosis of Stage 1E DLBCL. So I was perhaps the happiest person to ever hear a confirmed diagnosis of lymphoma!
R-CHOP treatment began on December 3rd. It was my hope that the bleeding would slow down and I would be able to sleep normally by the end of the year. But by December 5th, the bleeding had completely stopped! I still don't know how much the lump has decreased in size, but the fact that the other day I passed by far the largest, thickest stool in recent memory seems to be a good sign.
Although they wanted to keep me for observation through the second cycle, I was able to convince them to let me out two days ago, once they saw that my white blood cell count after Day 14 was around 2900. Side effects of the chemo have been fairly mild thusfar, but I noticed some clumps of hair on my pillow this morning, so I'm having to come to grips with being a bald Santa this year. But that's a small price to pay if I may become another of the growing number of DLBCL survivors in the new year!
Sorry for the very long post, but as I found very little information on the internet regarding primary colonic lymphoma, I write this in the hopes that someday, someone else in a similar situation may learn what to expect. I'll keep this thread posted with my progress!
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