The Short Version
The PET scan today revealed no additional cancer in my body - very good news! At the consultation with the radiation oncologist, Dr. L at Highland Park Hospital, the recommended course of action was 13 treatments of full-brain low-dose radiation over 3 weeks followed by chemotherapy to address the cancer in the lung and other microscopic cells that may be stealthily carrying cancer in my body.
Based on the fact that I have no detectable cancer in other sites, am asymptomatic for the lung cancer, young, otherwise healthy and have small mass and lesions; the doctor believes I have a good chance of being one of the 20% of outliers exceeding the 2 year life span.
Next step is to get a second opinion ASAP and we are going after two local well-reputed doctors for this. Our hope is to have the second opinion by next week so treatment can commence by a week from Monday at the latest.
The Longer Story
I had the PET scan this morning. They inject a radioactive glucose compound into your system and let it settle in for 40 minutes or so before then using a proton emitting scanner to search for other cancer sites (it strikes me as very strange that to help me, they are mainlining me with radioactive substances). The actual PET scan consistes of me laying completely still on a board that moves back and forth under the scanner for about 20 or 25 minutes to complete the scan.
We got good news this afternoon that the results of the PET scan showed the cancer has not progressed to any other sites beside the primary lung mass and the brain lesions - it is not in the glands or lymph nodes or anywhere else. This is very positive news!
The consultation was probably one of the longest one poor Dr. L has ever had. Doug, my sister Susan and I grilled him mercilessly to get a complete understanding of the approach he wants to take, the reasons for it, alternatives, risks and benefits. We were there for over two and a half hours. In a nutshell, Dr. L believes the best course of action for my condition is likely to meet a pretty significant general consensus, but we still intend to get at least a second, and possibly a third opinion to verify. The plan as he explains it is to do 13 treatments (once a day, 5 days a week for about 5-7 minutes total, including prep, each time) of low dose total brain radiation. The reasoning behind this is that there are likely microscopic cancel cells that don't appear in the MRI that we need to get ahead of before they bloom into lesions that can cause more problems. The other option of using higher focused radiation on the 5 identified sites would actually lead to a higher overall dose of radiation and could miss those microscopic cancer cells. I would have some fatigue, lose my hair and may have a loss of appetite. There is also a risk of some short-term memory loss but that wouldn't become apparent for a long time after the treatment is complete. The radiation causes more inflammation in the brain, which is treated with oral sterioids, which carry their own side-effects but seem relatively manageable. After the 13 treatments, they wait 3-4 weeks before doing another MRI to allow the inflammation in the brain to subside and then see how the lesions reacted. If there are still lesions present, they are then evaluated, monitored and may be treated with a more focused form of radiation or other therapy for removal or reduction. MRIs would continue to be taken every 2-3 months or so for the rest of my life to watch for lesions.
After the initial radiation therapy, we would then look at chemotherapy to address the cancer from the lung mass. It seems like the damage from the lung cancer has already been done since the cancer got into the blood stream and found its way to my brain. The lung mass itself does not seem like it will be any more of a threat than it already has been. However, there again are likely to be microscopic cancer cells in my body that have traveled from that lung mass and the chemo would be used to destroy these. The behavior of the lung mass throughout the course of chemotherapy would be an indicator of our success with the microscopic cancer cells we can't actually see. The chemo would commence somewhere between one day and four weeks after the full brain radiation treatment is finished. There are many courses of chemotherapy available and we don't know yet which course would be the one to apply. There is also flexibility in changing the chemotherapy course midstream if it is not working or is causing other problems. Each different type of chemotherapy comes with its own set of side effects and issues. I guess we cross that bridge when we come to it. We are still waiting for the results of the additional biopsy tests to see if I have the epidermal growth factor receptor (EGFR) genetic marker that would indicate I am a good candidate for the Tarceva drug therapy that has been having some success. This information should be available in the next few days. To the best of my understanding, this drug exploits specific proton functions in a cell so that it inhibits the cancer from spreading. I will have to continue to have CAT scans every 3 months to monitor the cancer in my blood stream for the rest of my life as well.
Because of the fact that the cancer has not spread beyond the lung and brain; that I do not have any symptoms that are caused by the lung mass; that the mass and lesions are small; and that I am overall healthy and young; Dr. L seems to believe I am a good candidate for exceeding the typical lifetime of a lung cancer patient. He says that 20% live beyond 2 years and I could very likely be in that 20%. And "beyond" is wide open to interpretation.
Our next steps are to quickly get that second opinion. With help from family and friends, we have honed down the prospects to a doctor at University of Chicago and one at Rush-Presbyterian, both highly recommended and with excellent reputations. I will be calling them tomorrow to try to set up appointments ASAP. We hope to have our second opinion completed by next week so I can begin treatment no later than a week from Monday. Time is of the essence to avoid a brain lesion causing irreversible damage, so no messing around here.
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