3/18 - Leiomyosarcoma

Well here we go the first of many posts to update friends and family on Kristine’s progress. Kristine will begin her first cycle of chemotherapy on Monday to treat a rare type of cancer known as sarcoma, specifically leiomyosarcoma (lI-O-"mI-O-sär-'kO-m ). Leiomyosarcoma is a malignant tumor formed in smooth muscle tissue. Smooth muscle is the major structural component of most hollow internal organs and the walls of blood vessels. It can occur almost anywhere in the body but is most frequent in the uterus and gastrointestinal tract.

The original mass that formed in Kristine is especially rare as it originated in a blood vessel behind the clavicle (i.e., collarbone). The cancer has metastasized (i.e., spread) forming two smaller tumors in Kristine’s lung. Cancers that have spread to other organs are classified as stage IV – a classification meaning that the disease is advanced.

An additional complication, one that lead to our initial visit to the emergency room, is that the mass is compressing a major vein that transports blood from the head, neck and shoulders to the heart. The compression of the vein has caused a clot which in turn has caused substantial swelling in Kristine’s head, neck and upper body. She is taking blood thinners to reduce any further clotting.

So how did we uncover this in the first place?
Kristine and I (Ryan) had taken a week long ski vacation to Aspen, Colorado in February. We met up with Kristine’s cousin Cris and her husband Biff. On the second day of our visit, we found ourselves at Aspen Valley Hospital after Kristine woke up with substantial swelling in her face and upper body. Several CT scans and blood tests later, the attending Physicians discussed their findings. The CT scans showed lymph nodes that were 5-10 times the normal size. They had also uncovered a clot in one of Kristine’s veins. The doctors thought the symptoms were a primary concern for Lymphoma (cancer of the lymph nodes) but needed a biopsy to tell for certain.

We thought it best to wait until we got back to Philadelphia to get the biopsy and seek counsel from our primary physician. Kristine was admitted to the Aspen Hospital and I bunked up in the bed next to her. We broke the visitor rules a bit by bringing in a couple of beers and playing cards with Cris and Biff in the hospital room.

Returning to Philadelphia, the appointments had already been set up. But Kristine’s biopsy uncovered a surprise. When the surgeon attempted to extract the large lymph node that appeared in the CT scan there was nothing to take. The lymph node was not large enough to get a biopsy. It seems the blood vessels around the lymph node were so enlarged from the clot that the upper lymph nodes just appeared larger in the scan. This little set back cost us about a week.

The next day after Kristine’s surgery, her right arm became very swollen. Fortunately, Kristine’s sister Colette was in town and took her into the emergency room. I rushed home from work. The physicians in the ER were updated on Kristine’s condition but had little to offer. They suggested that she be admitted to the hospital in order to expedite her diagnoses (after all it had been almost 3 weeks since the original symptoms appeared). An MRI was a needed next step to identify if a tumor in fact existed. It was the weekend, however, and the MRI was booked solid. The hospital stay was looking fruitless until the attending oncologist came to Kristine’s room to discuss her case. Dr. Staddon (there is a link to his profile in the right margin) really got things moving and became an important champion. Within a week Kristine was scheduled for an MRI, MRA and biopsy, which leads us to the present and Kristine’s impending chemotherapy.

We are all hoping for the best and will keep you updated.
Ryan