Path for treatment

My mom has asked my brother Pat and I to write up a factual account of her appointment at Beckman Eye Clinic (link) at UCSF yesterday. Below are our collective notes.

We arrived at UCSF Vision Center for an 11:30 appointment. While waiting we were told how the day would progress. There was a sign in / registration period, initial screening, a sonogram on both eyes, photography of both eyes and two in-depth consultations one with the Fellow of the clinic and one with Dr. O’Brien the clinic lead.

Mom, Patrick and I were extremely impressed with the level of care. Everyone was exceptional, from the receptionist to Dr. O’Brien. I cannot stress this enough. We were so impressed with their depth of knowledge and attention to mom’s care. Mom described it as sensing a feeling of hope upon entering the clinic.

The initial interaction was a simple eye test, some health history and then dilation. After Mom’s eyes were dilated we sat and waited in a room for the sonogram. The sonogram technician had been there doing this one task for nearly 20 years. She was operating with a brand new machine which took sonogram digital movie file of her eyes. She was able to measure the width, length, and depth of the tumor inside mom’s right eye. She was very gentle with mom, attentive and answered the litany of questions we came up with. This sonogram was much less invasive than the one she got in Montreal. A second set of sonograms with the same technician was able to measure depth and density of the tumor. This set confirmed that indeed the mass in mom’s right eye was a tumor. About halfway through the sonogram Pat showed up and spent the rest of the day with us. The sonogram lasted over an hour, and mom was a trooper through the whole thing. By the time we finished with the sonogram it was close to 3pm and we had our first consultation.

This consultation was with Dr. Tsai, the clinic Fellow. Dr. Tsai was sensational. He started with, “I understand you were a Chaplain …. , thank you for your work!” He confirmed that Mom indeed has a cancerous tumor, diagnosed as ocular melanoma and he gave mom great information. Things like

• Melanoma is a cancer of the body’s melanin cells (cells containing color or pigment), and it not just skin cancer.


• 6 people in a 1,000,000 are afflicted with ocular melanoma


• Nothing about mom’s genetics or lifestyle can specifically be attributable to the occurrence of this cancer


• There are two centers in the US that treat this; UCSF and Harvard


• There are three main treatment options 1) removal of the eye, phased proton radiation, and a plaque radiation. This clinic specializes in phased proton radiation.


• He also confirmed that there is a spot on mom’s left eye which is a birthmark (also called a nevis). It is unlikely that this birthmark is cancerous, and the doctors state that there is an exceedingly low chance of a patient developing cancer in one eye after having cancer in the other. Although it is technically possible, Dr. O’Brien, the chief physician at this clinic has never seen a patient in her career where this has happened.


• The tumor in mom’s right eye is classified as ‘big’ for two reasons. It is long and it is thick (about the size of a chick-pea). For comparison the eye is about the size of a quarter.


• Due to the size of the tumor, the plaque treatment is not possible.


• The phased photon treatment has about a 50% chance of killing the tumor, due to its size. The risks are minimal, but there are potential side effects.


• The potential side effects are: 1)dry eye 2)damage to the optic nerve 3)glaucoma (a painful condition of increased pressure behind the eye).


• If the radiation treatment does not sufficiently kill the tumor, the doctor’s will remove her eye and replace it with a prosthesis.


• There was no way of estimating or knowing if her eyesight will return after the treatment.

Overall, this is positive news for several reasons: 1)Mom is at one of two clinics in the country that treat this kind of cancer. Patients come from all over the US for treatment here. 2)the eye, like the brain is unique in that it is isolated and protected from the rest of the body, dramatically reducing the chance that the cancer will spread.

Mom has decided to pursue proton radiation treatments. The clinic schedules these radiation treatments every four to six weeks, and while there is no urgent reason to begin the radiation therapy, Mom has decided to receive the treatments the week of Aug 6. She are several steps to prepare the treatments, including chest x-ray, MRI, blood tests and several pre-operational appointments in the next two weeks. She will then have a preparatory surgery to place markers on her eye in order to focus the radiation at the tumor. The surgery requires a general anesthetic and she will stay in the hospital for one night of recovery. The radiation therapy is scheduled for two weeks after the surgery in order to let her eye recover from the surgery.

The radiation therapy will occur over four days at UC Davis. Each treatment requires a two hour visit at the hospital, but she is only exposed to the radiation for less than two minutes each time.

She will then see Dr. O’Brien at the clinic for follow ups every six months. There was no time element for how long the follow ups would continue.