Angiosarcoma: A Radical Cancer with Too Few Treatments

At the end of June, 2008 Kevin Boitson, my husband of 1.5 years, developed trouble swallowing. He went to the Dr, who told him it was most likely an inflammation due to acid reflux and prescribed him prevacid. A week later, we left to travel to visit Kevin's family in Winnipeg, Manitoba Canada.

During our trip in Winnipeg in early July 2008, Kevin's inability to swallow properly increased immensely, leaving even just water painful to swallow. During our 1 week vacation in Canada, we placed two calls to our home physician who told us not to worry, just visit him when we got home.

We left a day early and arrived home at the end of the first week of July. The following Monday Kevin visited with his physician, who increased his dose of acid reflux medication and switched him to Nexium. He also scheduled Kevin with the gastroenterologist for an endoscopy to look at his esophagus the next week.

The next day, Kevin called me at work to tell me how painful his swallowing had become and that he couldn't take it anymore. After several phone calls, I left work to take Kevin to the GI dr. at the Lancaster General Hospital's local health campus. The nurse practitioner at the GI office seemed very concerned while taking notes about Kevin's symptoms. 30 minutes later, we were sitting down with her and the Dr. discussing all the STAT procedures te GI Dr. wanted Kevin to have done: Chest Xray, CT scan, Endoscopy, blood work, etc.

The next day, Kevin had an emergency endoscopy which showed a mass of about 3 cm growing at the base of esophagus. He told us he was nearly positive it was cancerous, and sent the biopsy to pathology for examination.

While waiting for the biopsy results to return, Kevin was sent for a PET scan to see if any other parts of his bodies showed cancerous/active cells. The following week it was confirmed Kevin had cancer, but pathology was unable to identify his type of cancer. It was decided they would try surgery first, and go from there.

That Friday, July 25th, Kevin and I went to Hershey Medical Center for an endoscopic ultrasound. The procedure was very painful for Kevin and did not go very well due to lack of sedation. The weekend following, Kevin's symptoms and pain increased, and by Monday morning the 28th we were in the ER at Lancaster.

Kevin was admitted to the hospital after the ER visit where they told us he most likely had pneumonia and was running a fever. Throughout the next week and a half, Kevin was moved, moved and moved with more and more tests being done. He had another endoscopy done for another biopsy because not only Lancaster, but also Johns Hopkins hospital was unable to determine the type of cancer to then proceed with treatment.

While Kevin was in the hospital, fluids built up in and around his lungs and heart, and they were unsure of the source. Wed, August 6th, we were informed Kevin would be transferred the next day to Johns Hopkins hospital in Baltimore due to the possibly rarity of his tumor.

Thursday, August 7th, due to Kevin's lack of proper breathing, it was agreed to put him on a ventilator. That afternoon, Kevin was transferred via ambulance to Johns hopkins hospital, after having a chest drain put in, and put on the ventilator.

Early in the morning on August 8th, the surgeon at Johns Hopkins decided that Kevin would most likely need an emergency esophagectomy due to a possible perforation in his esophagus. They hoped at the same time to remove the tumor, but the surgery had very high risks. That evening, around 8pm, when my parents and sister arrived, Kevin was taken into surgery.

We were able to get a medical emergency flight for Kevin's mom to be here, and we all waited anxiously for about 7 hours until 3 am Saturday morning for the surgery to end. Kevin made it out of surgery, but they were unable to remove the tumor due to it attaching itself to other organs. They did biopsy it again, as they still had not determined the type of tumor.

Kevin remained on the ventilator for almost a week, when they finally took it off, and removed his catheter. The night before he was taken off, it was finally confirmed he has Angiosarcoma, a very rare type of tumor. Sarcoma cancers account for 1-2% of all cancers, and Angiosarcoma accounts for 1-2% of all sarcomas-roughly 100 people per year. With the location of Kevin's tumor, running from the mouth to stomach, his tumor was very invasive, and extremely rare.

Kevin was on chemotherapy (taxol) treatment for 5 rounds and did ok. There is no cure for angiosarcoma, but it is known to respond well to chemotherapy. We prayed and trusted in God to shrink and disintigrate the tumor so we could continue on living a normal, happy, healthy life. Kevin had hoped to one day have his esophagus re-attached so that he could eat/drink again-something he missed dearly, but in order for that to happen, he would have had to be cancer and chemo free for 3 months. That was a very weak possibility.

Kevin was discharged from Johns Hopkins in early September, and after 3 weeks of freedom (and one last escape to Assateague Island together to fish), Kevin was back in the hospital for another week with GI bleeding issues and pain. He was discharged after a week, and suddenly after 3 days, Kevin developed an excruciating new pain on his left side. He was transported to the hospital, and within 1 day, he was on the ventilator, dealing with a horrible infection.

The night, after being placed on the vent, he had to be shocked for irregular heart rhythms and an extremely high heart rate. He was then put on pressors and heart-rate medication, and stabilized. 3 days later he was already off the vent and appearing much better. We were anxiously awaiting a transport to Hopkins, and that took a week due to their record number of admitions.

Finally, the following Saturday (late October), we got on the transport list for Hopkins. In the meantime, Kevin had remained fairly stable, but was still fighting these infections, and lacking strength. We arrived at Hopkins late on Saturday and adjusted to being in Baltimore again.

On Monday, we met with our oncologist, who told us the discouraging news that the chemo had stopped working and the cancer had spread to his abdomen and around his pancreas. Because of Kevin's lack of mobility, he had also developed a blood clot in his lung. Unfortunately, due to Kevin's weak condition, treatments were no longer an option, and we decided to go onto Hospice care.

That night, I spent next to Kevin on a chair, and noticed his breathing becoming increasingly more difficult. Early Tuesday morning, October 28th, Kevin passed from complications with Angiosarcoma. I continue to work towards Angiosarcoma and Sarcoma awareness so that others may receive better treatment options and more information.