We just finished our Neurosurgeon follow-up visit. It went well. Satomi had her staples removed and she passed all of her neurological screening tests with flying colors.
The Doctor supported our decision to forgo whole brain radiation. He said he recommends the same whenever the patient is young and vibrant which Satomi is.
She is being scheduled for the Cyberknife procedure and should be getting the initial MRI/CT sometime next week. The actual procedure may take up to 3 seperate sessions to attack the reminaing tumor so it may be a few weeks before it is completed.
She (not me) had the audacity to ask the Doctor about her returning to work. He was so happy with her progress that he left it up to us. I have mixed feelings about it.
Interestingly, she was perscribed PT and OT. And yes, she is planning to go to her very own Healthsouth Tustin for it!
Since there is no official connection between our original Oncologist and the Radiation Oncologist (RO), this is actually our first second opinion.
Our meeting with our RO went well-not so much for the statistics or miraculous cures but just the amount of useful information. There was so much information that I do not know of a logical manner to present it all. I will do my best to do it justice.
We asked a few basic questions:
- What are pro’s and con’s to full brain radiation?
- Please provide more information on the Cyberknife procedure and is it really a panacea for brain tumors?
Full brain radiation is the old-school standard for metastatic brain tumors. Using this technique may result in dimentia, loss of higher-cognitive functons, loss of short term memory, fatigue, hair loss, and skin irritation. It is also quite alarming to note that these issues may not surface until months or years after treatment has been given. The presence of any of these may likely effect the personality and behavior of the patient. Before the late ’80’s, that is all that was available so these effects were livable given the lack of alternative.
The advantage of full brain radiation is that tumor recurrence rate is reduced to approximately 50% down from 75% for non-full brain radiated patients.
In and of itself, this statistic seems positive however if you consider long-term survivability as the ultimate measure of success (as we do), both full brain radiated and non-radiated yielded very similar long-term survivability rates according to the most recent studies published (Dr. Aoyama published in the Journal of the American Medical Association June 2006) . This was a bit surprising to me.
As it is, it comes down to a quality of life issue.
While full brain radiation may increase the time between recurrence, it will do so at the expense of your mind and personality. You may not be able to live the life you had previously. And in the end, the long-term survivability is the same. In other words, you won’t live any longer if you get full brain radiation so why risk dimentia?
The Cyberknife procedure is not as easy as earlier presented to me. It will be a several hour outpatient procedure and may take several sessions depending upon the size and location of the tumor. Satomi’s tumor is located between the brain stem and cerebellum. The RO indicated that this is the most senstive and dangerous operation that could be done. As many of you know, the brain stem controls breathing, the heart pumping, digenstion, to name a few so it is essential for life. The RO indicated that this operation should be taken very seriously.
To confuse the issue a bit, the RO explained that all focused radiation devices, such as the Cyberknife, will do some damage to surrounding and passed-through brain tissue. Remember that tumors located near the center of the brain will require that all radiation pass though good brain tissue before reaching their respective tumors. This effect is cumulative and will eventually result in radiation damage to those localized areas. Given this phenomenon, the RO indicated that their basic rule is the removal of up to and including (4) tumors using the Cyberknife procedure before overall brain damage will be approaching that attained following full brain radiation. If it the tumors are persistent and numerous, the full brain radiation therapy will be re-considered as the issue then will be life-preservation and not-quality-of-life.
Of course all of my jibber-jabber is an over-simplification but right now, I like simple.
After talking with our Oncologist, we have a basic treatment plan. In concept, it’s so simple:
- Cyberknife the remaining brain tumor.
- Maybe Full Brain Radiation
- Chemo-cocktail of Tykerb and Xeloda
- Bimonthly brain MRI’s and/or Pet-CT’s to monitor condition
- If any further brain tumors arise, Cyberknife will be used to attack them
I went online and got more information about Cyberknife. I got it confused with Gammaknife which is a multi-source Cobalt system that uses a frame screwed to your head and a helmet device that focuses the radiation on a single point. The Cyberknife is a highly accurate robotic device that uses a single source linear acclerator to shoot a single beam of radiation to a specific point. It may sound a bit sadistic but I think this thing is just amazing. The technology really appeals to the engineer in me. Take a look at this video to see what I’m talking about: http://www.accuray.com/videos/redefining_radiosurgery.aspx?video=ACCURAY_Redefining_Radiosurgery
Full brain radiation is the old-school solution to metastatic brain tumors. There are pro’s and con’s to it. We have an appointment to see a Radiation Oncologist on Monday to discuss it in detail.
I did a bit of research on the proposed chemo-cocktail of Tykerb and Xeloda. Tykerb is similar to the Herceptin that Satomi was on most of last year in that it is designed to block the HER2 receptors. As I mentioned in other posts, Herceptin is quite effective except it does not pass the brain-blood barrier and therefore cannot effectively treat the brain. Tykerb is a much smaller molecule and does pass the barrier to treat the brain. Xeloda is the actual chemo portion of the cocktail and is designed to destroy the cancer cells.
According to some medical articles I’ve just read, the Tykerb/Xeloda mix has little effect on existing brain tumors however, it has seen positive results when used prophylactically. After the Cyberknife does it’s thing, the Tykerb/Xeloda mix should help prevent further tumors. That’s the idea anyway.
Ignoring the potential effectiveness of the Tykerb/Xeloda cocktail, the chances of a brain tumor returning is notable. The present plan is to monitor the condition of Satomi’s brain every 2 to 3 months with an MRI with an intermittent Pet-CT scan of her entire body for good measure. If anything is found in her brain, another Cyberknife procedure will be used.
Sounds simple huh? Too simple if you ask me. I am a firm believer that nothing is free.
This is my first real attempt at researching Satomi’s cancer. When she was first diagnosed over a year ago, I started digging in to the details and quickly became depressed. I immediately stopped my online research and relied upon the expertise of our Doctors. That was the only way I remained functional in my day-to-day life.
Now that the cancer has re-surfaced, I am forced to find some mechanism to deal with it all over again. This time the issue is much more serious so I am compelled not to simply rely upon our Doctors recommendations. I need to be educated enough about the issues and alternatives that we can discuss options in an intelligent manner. At least that’s what my head says to do. My heart hasn’t given me a straight answer in several weeks.
This plans scares the crap out of me. I’m a forced to cope with the realities of my wife’s illness and remain functional for my family, my work, and my own sanity. I have been under a tremendous amount of stress. As the days go by, it only increases. Most of you know that I exaggerate details for sake of a good story; I only wish that this was the case now.
Some of you may think that I should have attacked her initial onset of cancer with this sort of fervor. I cannot disagree with you. Maybe things would have been better if I had fully known the statistics of the potential outcomes. I realize that hindsight is 20-20 so I won’t allow myself to be overly fixated on this criticism but it does cross my mind. It’s just another thing to throw into my black hole of a pysche.
Satomi has HER2 positive cancer. During her treatment, Satomi took Herceptin to battle it. For those that don’t know what this is, here’s a short explanation of HER2 from the Herceptin manufacturer’s website:
“HER2 stands for Human Epidermal growth factor Receptor 2. Each normal breast cell contains copies of the HER2 gene, which helps normal cells grow. The HER2 gene is found in the DNA of a cell, and this gene contains the information for making the HER2 protein. The HER2 protein, also called the HER2 receptor, is found on the surface of some normal cells in the body. In normal cells, HER2 proteins help send growth signals from outside the cell to the inside of the cell. These signals tell the cell to grow and divide. In HER2+ breast cancer, the cancer cells have an abnormally high number of HER2 genes per cell. When this happens, too much HER2 protein appears on the surface of these cancer cells. This is called HER2 protein overexpression. Too much HER2 protein is thought to cause cancer cells to grow and divide more quickly. This is why HER2+ breast cancer is considered aggressive”
Our results while on Herceptin were quite good as she was given a clean bill of health after treatment.
As we’ve come to learn, Herceptin is a large molecule drug and the Blood-Brain barrier will stop much of this drug from reaching the brain. According to some articles, “about 25 to 30 percent of metastatic HER2-positive cancer get some form of brain cancer“ with “only” 10 to 15 percent of non-HER2 positive breast cancer resulting in brain tumors.
In other words, this ordeal was a distinct possibility from its onset.
Sorry about no post last night. I was so relieved with the good news that I fell asleep early. I’ll post again later this evening.
Satomi's Cancer Blog 