The Diagnosis Process

This is all old news. But it might be interesting to some.

As I mentioned before, we found the cancer because I contracted pneumonia. It started as a typical cold, but turned into a cough pretty quickly. I didn't think too much of it at first, because I had been visiting family, and my sister-in-law reported that it had taken a few weeks for some of her kids to get over something similar before I arrived. Then, like a good educated healthcare consumer, I looked online and read a bunch of websites that said if you go to the doctor before you've had a cough for five weeks, they will just send you home again anyway.

At about six weeks of persistent cough, with some days getting better and other days getting worse, I had a series of getting worse days all in a row. So I ended up in urgent care on a Saturday morning getting a chest X-ray. Something about the image didn't look right to the nurse, so she sent it on to the radiologist, and sent me home with a hefty dose of antibiotics for the pneumonia with instructions to rest for the next 3-6 weeks.

That night I received a phone call from urgent care, wherein they told me the radiologist felt I needed a CT scan ASAP. So the following Tuesday, I went to an imaging center for a contrast CT scan. Tuesday afternoon, I had another call from urgent care - could I come in to review the results, and by the way, I probably wanted to bring someone with me. All this checking and re-checking had been concerning up to that point, but this minute was the first that it really started to sink in that something might be more than a little wrong.

Our meeting with the urgent care nurse was sweet. She conveyed the news - the CT scan showed a "very large" mass in the anterior mediastinum, the space in the chest between the lungs and the rib cage, just to the right of my sternum. In this case, very large was about 10 cm x 7 cm, or about the size of my fist. The radiologist suspected the mass was a lymphoma, and the recommendation was that I find an oncologist to fully diagnose the problem. When we finished our conversation, that wonderful nurse hugged me, prayed for me, and asked me to keep her updated on how things went for me. She is a lovely woman.

Fast forward a week; next I met with an oncologist and his PA, both of whom are used to seeing people like me all the time. They ordered a battery of tests to further identify what we are dealing with: blood work, a PET scan, and a consult with a surgeon to determine the best way to obtain a biopsy.

Aside from the actual injection (I don't do needles well...), the PET scan was an interesting experience. They inject you with radioactive sugar, then have you lie down and not move for an hour or so while your body processes it. The idea is that cells that are active use more sugar (energy) than cells that aren't, so cancer cells (which are really active) will take up lots of the radioactive sugar, allowing you to image exactly where the cancer is located in your body. When the resting period is over, they put you in a PET/CT scanner and it uses cool physics principles to create a 3D image of your body that also shows where the radioactivity is most prominent. Once I had a copy of the scan in my hands, the biology nerd in me spent about two hours going over it, trying to determine what it all meant. Of course, it made a lot more sense after I went over it with my doctors. But it was still neat.

(Side note to anyone who has major health issues: always ask for a copy of scans and tests and other records for your personal files. They are about you, so they are yours. It makes seeing new doctors, switching doctors, and keeping track of your health record a whole ton easier than it would be if you had to chase down the records after the fact from each of the many places you will end up going.)

Getting a biopsy was the next major hurdle. Lymphomas are tricky to diagnose without a good-sized piece of tissue, I think because there are so many subtypes of lymphoma that you have to do a lot of tests to ensure the pathology is correct. With many cancers, getting a little sample via a CT-guided biopsy is sufficient. In my case, they recommended a minor surgical procedure instead, partly because the tumor is so closely packed in with vital organs (heart, lungs, major veins/arteries), and partly to get a large enough tissue sample to get good pathology. Fortunately for me, I was referred to one of the best doctors in the area for the surgery, and he really knows his stuff. So on the day after Christmas, I checked in to the hospital. The procedure is called a VATS (video-assisted thorascopic surgery) procedure - they make three small incisions in your side and, using a video camera to see what's going on inside your body, they deflate the lung and use the space that creates to get to the tumor and take a piece for pathology. While I was under general anesthesia, the surgeon also put in a port-a-cath so they could do chemo infusions more easily. (And I am REALLY glad. It makes it way easier.)

The first 24 hours after surgery were challenging, but I had good people taking care of me. My favorite was my nighttime CNA - he was optimistic, friendly, compassionate, caring, and just plain good at what he did. He made the time in the hospital a little easier to manage.

It took two weeks to get the pathology back, because after they did all the tests, they sent it to be reviewed by a board of pathologists to confirm the diagnosis. It was an anxious two weeks. During that time, I also had a bone marrow biopsy and few other tests, mostly to confirm my body could handle the chemo. (The bone marrow biopsy, while not fun, was way easier than surgery. I suppose it's all a matter of perspective.)

Finally, 31 days after the first suspicion of lymphoma, I finally had a diagnosis - primary mediastinal B-cell lymphoma. It was a huge relief (and a little mind-blowing, truthfully). No more waiting two weeks in between appointments, and no more tests! We were moving on to treatment!

(And since I already told you about the first treatment, this ending feels sort of anticlimactic. And I'm too tired to think of something interesting that would change that, so there you go. The End.)