Dear Family and Friends,

I do apologize that it has taken me until now to get this update out there. I tried last night but fell asleep and tried today but work got in the way. So here are some of the most important bits of info we learned during our meeting with the oncologist last night. If you all have additional questions please let me know.

Dr. Prados confirmed that Karen's tumor (funny to call it "Karen's tumor" like it's a piece of clothing or a good idea) is indeed a Tanacytic Ependymoma. As the doctor said, it's never good to have a tumor, but if you do get one this is the kind you want to get. This is considered a low grade (grade 2) cancer, slow growing and typically responds extremely well to radiation therapy.

It is also a rare kind of tumor. For some perspective Dr. Prados told us that UCSF is one of a handful of "tumor centers" in the nation so they see a lot of tumors in a year. In fact UCSF sees a total of 3 or 4 tumor patients a DAY but they will only see about 15 to 20 ependymoma cases in an entire YEAR. Only about 150-200 cases of ependymoma occur across the nation in an entire year.

Aside from this being a relatively uncommon tumor he could say that the majority of adults (85-90%) with an ependymoma have "long term success." He gave an example of an ependymoma patient that he treatedwhen he first came to UCSF in 1985 who he just saw recently and who continues to do very well. That’s 20 years later and still no problems.

Also, let me give you a sense for what he means when he says it is “slow growing.” If the tumor was left alone and they didn’t do anything to it, it might be three or more years before any growth was even detected in scans or by symptoms. In fact, the accepted practice for ependymoma patients for whom they believe they have removed all of the tumor is that they don’t even recommend radiation therapy at all.

Even in Karen’s case where they know they didn’t get all of the tumor, they said there is no urgency to starting the radiation therapy. The reason for this is that there is no known difference in outcome between those patients who do radiation right after surgery and those who wait until scans or symptoms indicate significant growth. In terms of our options, the doctor said the choice is up to us, and that the only real question for radiation has to do with the timing of when we begin.

Some of you may be asking why one would want to wait to do radiation. The reason has to do with the effects of radiation on the brain. Although they are recommending a very low level course of radiation that will be focused specifically on the area of the tumor, the radiation can still have an effect on the abilities controlled by that part of the brain.

The short term effects of radiation are typically fatigue, as well as dry skin and possible hair loss at the spot that is experiencing the radiation. But this will go away after the radiation is done. The long term effects, however, could be subtle effects on short term memory. This is due entirely to the fact that the part of her brain where the tumor still resides is the area that facilitates memory. If the radiation did effect her memory it would manifest itself in things like difficulty remembering a new name. He said it would probably not be noticeable to anyone else, and that “she might have to rely a bit more heavily on her blackberry.” All in all even the worst case scenario regarding side effects would be nothing more than an inconvenience easily overcome.

Important to note is that he also said that if she did experience some subtle deficits in memory that this would not be something that she would get back. Damage like that to the brain doesn’t heal. This is the reason to wait for radiation. In waiting you put off these potential problems a year or two more. So Karen and I will have to weigh the options and make a decision, do it now and get it over with or do it later and put off the potential inconveniences. I’ll give you one guess which way Karen is leaning …

Many of the questions that you all asked had to do with radiation. It turns out that though Doctor Prados is an expert Neuro Oncologist, we really need to address most of those questions to the Neuro Radiologist. We’ll be doing that when we meet with them.

Some of you also asked about how much of the tumor was left in Karen's brain. Well, there is no precise answer on this. The reasons for the imprecision are numerous. Some of the reasons include the inability to exactly distinguish where the tumor begins and ends. Also, the MRI, though very good, just doesn’t provide the level of detail necessary to find the edges even if they did exist. In answer to this question, Dr. Prados said that most surgeons would have gone in and only done a biopsy. Our surgeon, Dr. Parsa, was one of few nuero surgeons who could have resected anything, let alone the significant amount that he ended up removing. The take home message on this … we got the best results you could possibly hope for in this situation and the rest should be controlled by radiation.

In the next few weeks Karen will be getting an MRI of her head and spine. At that time the swelling and other effects of the surgery should have gone away so they can get a good look at her brain as well as her spine. They are checking her spine because this kind of tumor can sometimes travel through the cerebral fluids down into the spinal cord. The MRI will help to determine if this has happened, though there are no indications that we ought to really be concerned about this.

On another note, I did ask about the genetic nature of ependymomas and whether we should be concerned about our children or Karen’s brother getting this disease. Dr. Prados said that the factors that need to be present in order for this to be a realistic concern do not exist in our case and that no risk exists of transmission.

In terms of lifestyle issues here are some of the things that Karen can and cannot do:

She CAN

• Walk
• Be left alone
• Bend over
• Drink alcohol in moderation
• Do pretty much anything that she want’s to as long as it doesn’t hurt
  

She CANNOT

• Drive for the next 6 months (legally because she had what may have been a seizure)
• Jog until her head no longer hurts (about 2 weeks more)

Her our the Next Steps:

1. Karen will be getting an MRI of her head and Spine in about 2 weeks
2. We’ll meet with the UCSF radiologists regarding radiation therapy
3. We’ll determine when to start radiation
4. We’ll get recommendations from UCSF as to what radiation centers they would recommend in our area.

I hope that this satisfies some of your curiosity. Like I said in the beginning, let me know if you have any other questions at this point.