For Patients: What to Expect
This information is provided to help you plan for your appointment. Please feel free to call if you have any questions: 800-573-3515.
Pre-registration and Preparing for Your Hospital Stay
Please pre-register before your appointment by calling: 617-573-4200. They will ask for your insurance information, so have that handy. You should also contact your insurance company to see if you will need a referral or preauthorization for your appointment, surgery, testing, or radiation treatments.
If you have had any tests completed in the past month, please bring the reports of these tests with you. It is not necessary to bring X-ray films unless they are not normal. Copies of fluorescein angiograms are helpful. Please also bring a list of any prescription medications you are taking.
You should plan to be in Boston for four days. If you are coming from a distance, see the Accommodations Directory for places to stay. Your radiation treatments usually begin two weeks after your surgery. Radiation treatments are done at the Francis H. Burr Proton Therapy Center, across the street from Mass. Eye and Ear.
Day 1 - First Office Visit
On Day 1, you will visit with your doctor at his or her office and have some tests done. If you need to be cleared for surgery, and were not able to meet with your own medical doctor before coming to Boston, you will be examined by a general medical doctor on this day. You can expect to be finished at Mass. Eye and Ear no sooner than early afternoon, or as late as 4 pm. You should eat and take your prescription medicines per your normal routine. You will be given prescriptions for eye drops and eye ointment to use after surgery, and you will need to fill these prescriptions on this day so you will have them ready for after surgery. You will also be given specific instructions about your schedule for the rest of the week.
Day 2 - Surgery
Do not eat or drink anything after midnight on the day before Day 2. You will be given an appointment time on Day 1 for your arrival at Mass. Eye and Ear on Day 2, the day of your surgery. In most cases, general anesthesia is given for this procedure. For the surgery, the doctor will sew four tiny tantalum rings around the edges of the tumor. Each of these rings is about the size of a small circle you might draw with a pen, for example: Θ (2.5 mm wide). He does this by leaving the eye in place and going behind the eye. The rings are markers at the tumor edges so that the proton beam can be aimed exactly at the tumor. The operation lasts about one hour. Usually, you will be discharged from the hospital on the same day. It is hospital policy that you must be accompanied by an adult who can be responsible for you at the time of discharge.
Day 3 - Postoperative Examination
On the third day, you will need to report to the 12th floor of Mass. Eye and Ear at the scheduled time you have been given for your postoperative examination. Before you leave, the nurse will also review your schedule for appointments and radiation treatments. You will also meet with the doctor at the Francis H. Burr Proton Therapy Center, and have a custom-molded mask and bite block made for use during radiation treatment.
Day 4 or 5 - Radiation Treatment Process
You will report to the Francis H. Burr Proton Therapy Center where you will be walked through the radiation treatment process. Here is a video that will walk you through the treatment process. This practice meeting or simulation lasts about one half hour. Please do not use any eye ointment prior to this appointment. This meeting is a very important part of planning your radiation treatments. You can leave Boston after your meeting at the proton therapy center is complete.
You can resume your prescription medications the day you leave the hospital.
You will be given eye drops and eye ointment to use two times each day – once in the morning and once in the evening. The eye drops will dilate your eye so it can rest and heal, and the eye ointment is an antibiotic that will prevent infection. When you begin proton beam radiation, you can use the eye drops one time per day in the morning and the ointment one time per day in the afternoon. When you finish treatments, continue using the eye drops once a day for one week, and the eye ointment twice a day until the tube is empty. It is normal for your eye to be red and irritated. You should feel free to use artificial tears for this irritation.
You will be wearing a white cotton patch on your eye for about five days after surgery. You will need to wear the metal shield for bedtime use for a week, to protect the eye while you sleep.
Avoid strenuous activity after surgery and for a week after proton beam therapy. It is all right to immediately continue normal activities including showering, washing your hair and shaving. There are no restrictions on sex, but you should not bend or lift heavy objects until after proton beam therapy. If you have a personal fitness program, ask the doctor at the Proton Beam Center when you can resume that activity.
Your Next Appointment
In about six weeks, after you finish proton beam radiation, you will need to follow-up with your local retina specialist or your doctor at Mass. Eye and Ear. At six months, you will need to return to Mass. Eye and Ear for an appointment where you will only need to be in Boston for the day. This examination will include an office visit and may include an ultrasound, fluorescein test and photographs. You will be given this appointment prior to leaving Mass. Eye and Ear on Day 3.
It is very important for you to have repeat blood tests of your liver function one year after treatment and every year after that. The purpose of the blood test is to check for spread of the tumor to your liver. You can arrange this test with your own doctor or have the test done on the day of your follow-up visits here in Boston. Please ask your local medical doctor to keep this office informed of any changes in your general health.
NOTE: The tantalum rings which are placed in your eye are NON MAGNETIC. They do not affect an MRI or airport security. Read "Safety and Effectiveness of MRI After Proton Beam Irradiation."