I posted a very similar post on an old thread about insurance for proton therapy. I thought perhaps I ought to post as its own topic so it is not buried. My 90 year old father was diagnosed with stage III colon cancer a year ago. Otherwise he was unusually healthy for his age so it was felt he could tolerate surgery despite his age. Surgery removed the primary tumor and cancer was found in 2 of 40 lymph nodes - so stage III. Within a month he had 2 tumors in his liver -so stage 4. The largest was about 2.5 centimeters. His CEA had gone from 27 before the surgery to 117 when the liver tumors were detected. One was inoperable because it was near the portal vein. His oncologist gave him less than a year to live and suggested palliative care or a small chemotherapy trial to increase his life by a couple months. We left that doctor and went to the University of Pennsylvania . After several rounds of chemo the tumors did not increase but were still not operable.
During my father's chemo, I had been corresponding with a triage nurse at MD Anderson in case the chemo did not make the tumors operable. I wanted to have a "plan B" set up - if this were possible. They required a lot of tests to take my father as a patient for proton therapy. There was a very specific profile identified to be a successful candidate for proton treatment of colon cancer liver metastases. There need to be 3 or fewer liver tumors. None of the tumors could be larger than (I think it was) 4 cm. There must be a healthy liver. There must be no sign of cancer anywhere other than the liver mets. My father had to have a PET scan, a CT scan and a chest x-ray at University of Penn and send them to MD Anderson. Once my father made it through that step and was still being considered, we had to go out to MD Anderson to have them re-run these tests to verify what they were seeing. All this took a few months which was very nerve wracking because my father had not yet been accepted as a patient and there was no "plan c". He had two more months of chemo in hopes of keeping things at bay so he would not become a bad candidate while waiting for MD Anderson to decide if he would be a good candidate. Additionally, possibly because of his age or it could be a general requirement - I am not sure, he had to have no history of heart disease, stroke, diabetes and generally had to - other than being stage 4 liver cancer patient - be in excellent health.
They finally accepted him and we went out there and stayed a month while he had a combined proton therapy and Xeloda, 5 days a week for 3 weeks. He became increasingly tired during the treatment and the last couple days developed a neuropathy with sores on his feet and it became painful to walk or stand so I took him to treatments in a wheelchair. His Xeloda was stopped for the last two day because of that and thankfully the neuropathy completely disappeared. That was November 2010. It is now June 2011 and he has had a normal CEA since December. His CT scans, and MRIs are showing no new cancer anywhere. The tumors have taken on a "post-proton therapy appearance". Since it is a radiation treatment, the tumors sort of melt over time and scar tissue ideally is left. His liver and renal tests are normal. He is walking around living his life and has no symptoms, pain or lingering side effects from the treatment. Obviously he will still have MRIs every 3 months and blood work to verify that things continue like this. But he is now 3 months beyond when he was suppose to be dead, is pain-free and is living his normal life.
About insurance.... my father was covered by medicare. Medicare does not cover experimental treatments. The fact that Medicare covered proton therapy for colon cancer might be useful when challenging a denial from an insurance company who insists it is (after being around for decades) that it is "experimental."