Plot Twist: It isn’t over until it’s over

I had the 4th PET scan on May 20th to determine how well the chemo worked (or if there was any cancer remaining).

The results were inconclusive. I have a Deauville score of 4. There is still something there. It might still be showing cancer or it might be showing inflammation (common with lymphoma after chemo).

Not what I was hoping for.

Then I saw a radiation oncologist. He is recommending  proton radiation because it uses lower doses and  causes less damage to surrounding tissue. My mass is directly in front of my heart. I would have to go to Miami for this. The other option for radiation is standard radiation. Either type of radiation treatment will be 5 days/week for 5 weeks.

Then I met with my oncologist to discuss the PET scan, the discussion with the radiation oncologist, and next steps.

Both doctors (radiation oncologist and my oncologist) would start radiation just because. Both doctors acknowledge that I will likely have some amount of late effect issues. Their only goal is to eliminate the cancer.

I have serious concerns about those late effect issues from radiation. I used to be a really active person. I ran every day, lifted weights, and more. I want to return to being an active person. If radiation damages my heart, I could end up with a chronic heart condition that prevents me from ever being an active person again. And that doesn’t even think about lung damage or secondary cancers.  My goal is to return to being that active person again.

My options are: start radiation (either proton or standard) as soon as possible, have a biopsy (the biopsy is not a great option because while a positive is a positive, it is really difficult to know that they biopsy the correct location so a negative does not mean a definite negative), or wait and do another PET scan.

This is not an easy decision. This is a decision tree to show you how it looks.

So the plan is to wait 8 weeks and do another PET scan. If it is cancer it will still be there. If it is inflammation it should be reduced or gone. It will probably take 8 weeks to talk to the doctor who would do the proton radiation  anyway.

I am going to spend the next 8 weeks working on rebuilding my strength and recovering from the chemo. This starts with lots of walking (I have to rebuild the muscles in my legs and regain my balance) followed by running as soon as I am able. And I am going to be following the Mediterranean diet (an anti-inflammatory diet).

If the cancer is gone, then I am well on my way to returning to my active life. If the cancer is still there then I will be much stronger going into any radiation treatment.

So, the chemotherapy treatment is over, but the cancer treatment may not be.