May 14, 2012 - 2:16 pm
Bill just finished a week of tests at M D Anderson to assess his progress 5 weeks after 2 months of chemo followed by 6 weeks of chemoradiation (no surgery due to other health problems, as many of you know). We were terrified to find out the results, but as they trickled through during the week, they were more than we could have hoped for. Last Monday he had a PET scan, then Tuesday a colonoscopy (he had a 15mm polyp back in November whan all this started that our local doc had not removed as he thought there was a risk of tearing the cecum - said it would require surgery once the EC was dealt with) and the esophageal endoscopy. Colonoscopy result - the large polyp was gone, the doc had no idea why - he said he looked and looked and even used some special sort of light and there was nothing in the cecum - he did remove a smaller polyp. The endoscopy - everything looked normal all throgh the esophagus and upper stomach - no sign of the tumor, just some redness likely due to radiation. He gave us pictures of the two scopes and we were amazed at the pictures of the esophagus. We have the pictures of the original tumor which was a huge and ugly beast. To see it looking so normal was just stunning (and yes I know this cancer can lurk and hide, but still it was wonderful). He took biopsies of all areas.
Then we saw the radiation oncologist on the Wednesday and he seemed a little bemused by how well things looked. He decided to go and look up the PET scan results and everything looked normal, no hot spots, no sign of disease. Later that day, Bill went for a CT scan.
Thursday got a phone call with the biopsy results - all in the esophagus were benign, the redness is an ulcer. The colon polyp was precancerous. They will do follow up colonoscopy when they do the follow up endoscopy.
Finally Friday we saw our main oncologist's PA. CT scan - all normal. The pain on eating is from the ulcer, which is not uncommon after radiation. That have given him some medication for that. The pain in his side - he has a broken rib which showed up on the scans. He had no trauma, so they plan to monitor it closely because of his cancer history, but currently they see no sign of any pathological cause on either the PET or CT scans. Because of the rib, the follow up in August will be a PET scan rather than the originally planned CT scan (my understanding is that the PET is preferred but because of insurance issues the 3 month check up is usually a CT, but the fractured rib makes it necessary to do the PET and insurance will allow it - I think).
So we get to relax and rejuvenate for a while before we come back in August. The doctors at M D Anderson are happy with the progress (Yes, I have read the many stories of people who were at Bill's stage and seemed all clear and did not have the surgery and it came back, but surgery is not an option for him as they doubt he would survive the surgery - so please resist the temptation to tell us he must have the surgery - we know it's preferred, but he can't have it). FWIW There was one guy having a scope that had had chemo and radiation but no surgery and was still in the clear 2 years later. And one who had had the surgery a year ago that was no longer in the clear. This horrible disease and its outcome seems so random, no matter what path you take.
We know this is a tricky beast, and we know the high risks of recurrence, but for now we are overjoyed. We were terrified that the treatments had been ineffective especially as the trouble swallowing made us think it might have grown, but the ulcer is the cause of it. We are not quite done with Houston - we will travel back to Galveston in 2 weeks for our daughter's beach wedding - so wonderful to be able to really start looking forward to that and to spending the rest of the week in a beach house with my brother, who is flying in from England, and our son who is coming from SC.
To be honest, I was a little reluctant to post the news here, but in the end decided that for others in our situation, where surgery is not possible, it may give them some encouragement. This disease is cruel and capricious and the outcome seems to be a combination of talented doctors and then ultimately just sheer luck, good or bad. We are so happy to be where we are and are trying to follow the "one day at a time" mantra (not something I am good at - I am a planner and a worrier and a horrible pessimist!!!) and enjoy life. 2 weeks after Bill was diagnosed, we went to our neighbor's son's wedding and I cried during the father/daughter dance thinking Bill and Caitlin might never get to do that. Yet here we are, 6+ months later and 13 days away from her wedding where her daddy will be there to dance with her - wearing his overalls because that is what daddy wears and that is what she wants.