Next Steps

We met with Dr. Haas-Kogan from radiation oncology at UCSF this week to discuss treatment options for Carly. Radiation is the preferred treatment from her perspective and it was the consensus from the UCSF tumor board meeting, as it has a good track record of success for craniopharyngiomas. Radiation is not without issues though, and there are some side effects that we need to consider. Treatment would cause some hair loss and will likely make Carly extra tired during treatment, both of which are pretty minor. The biggest risk is pituitary damage, but Carly has already lost her pituitary gland during surgery so this is not an issue for her. The radiation can also cause damage to her vision, which is already affected to some degree, but she felt that this risk is very low. The most concerning risk is neuro-cognitive damage, which is unavoidable to some extent. Because Carly’s tumor is very small at this point the overall radiation dose and area that requires treatment are both small which will minimize this risk. Dr. Haas-Kogan believes that because of this, the expected damage would be less than 10%.

The type of radiation treatment that Carly would receive at UCSF is called IMRT (image modulated radiation therapy) which is a method that allows them to control the intensity of the radiation to help preserve nearby tissue. She would get treatments for 30 minutes each day, five days a week for six weeks. Since she would have to hold perfectly still for the treatment, and she would need to have anesthesia each time so she would also need to have a central line placed. (Placing an IV each day would be impossible.) This treatment would most likely begin on March seventeenth, and Carly could stick with her school and weekend routine during the treatments if she felt up for it.

One other radiation option is proton treatment. This is a less common treatment method and only five centers in the United States offer it. The advantage of protons is that they are very targeted, slowing down very quickly after hitting the tumor. This helps preserve surrounding tissue and may reduce some of the potential side effects that are seen in other radiation methods. We are consulting with Harvard/Massachusetts General on this option now and will see if it is a suitable alternative for Carly.

Whichever option we go with, treatment will begin soon so the tumor does not have time to grow any larger. We all know that Carly is an incredibly strong little girl, and with the support of Team Carly she will get though this. Your support also helps Christa and I each day, and we are very grateful for it.

Love, Brad