Love, The Hayes'
Wednesday, February 10, 2010
The doc said that the tumors have grown since the Dec. 15th MRI to the point that they need treatment. He said that he has plans to call other cancer centers around the country to see what they have done for my situation and how often they see my specific situation. He said that the way my case is presenting is very rare and the manner in which the tumor is spreading is rare.
Attached are a few images from the MRI. I have outlined the tumor areas.
He wants to do about 4 weeks of radiation and then get another MRI about 6 weeks after that. This has been the consensus of the numerous doctors that he has talked to in the Ohio Valley about my case. He said that the tumors just are not in a good place to make surgery an option and that chemo just doesn’t do a good job in the head area. That chemo is really good for things like the lungs, liver, kidney, etc. but that for some reason it just doesn’t penetrate to the head / brain area very well.
Below is the list of questions that I asked him today and his answers.
· How many tumors are there? Are there new tumors in the new MRI?
It looks like there are 2 tumors with a gap in between them. But there are probably some straggling cancer cells in between the two tumors.
· Have they grown since the last MRI?
Yes, they have grown since the Dec. 15th MRI.
· When a tumor does get to the size that it needs treated, will we be able to completely kill it or will we just be able to shrink it and manage the symptoms?
The radiation should definitely shrink the tumors. While it is possible that it will completely kill them it is statistically unlikely that they will be completely killed. Plus there is the chance of microscopic cancer cells that are not visible as tumors on the MRI that could form into new tumors.
· Are new tumors just going to keep forming in the Dura? Am I going to have to live with the cancer for the rest of my life?
It is a real possibility that the cancer will never be completely removed from my body. Since the tumors start from just the undetectable microscopic cells and there is no good way to detect them, monitoring MRI scans is probably the best way to go. There has to be a good balance of getting enough radiation to kill the cancer but yet not so much radiation that it damages the brain. Dr. Barrett said that the brain is actually pretty resilient to radiation and the biggest possible side effect that he listed was short term memory loss (which would be a very uncommon side effect).
· How does all this affect my life expectancy?
If the cancer was left untreated, and continued to grow at its current rate, I would most likely be having major problems in a matter of months. This is why we are going to go ahead with the radiation treatments.
· How often do we need to get the MRI scans to monitor tumor growth?
Recommended about 4 weeks of daily radiation treatments followed by an MRI scan 6 weeks later. Then probably another MRI about 3 months after that.
· How likely is this type of cancer to spread to another part of my body?
This is possible but it is very unlikely. Most likely it would / will continue to grow / spread locally in the Dura.
· What exactly is the name of the problem that I’m having (so that I can do my own research)?
Dural recurrence of sinonasal cancer
· I know that you can’t say with certainty what my prognosis is, but you are the expert and I’m sure that you’ve got an idea of how you think this will all play out. I’m very interested in your opinion of what you think is going to happen. I just want your realistic honest opinion of what’s in store for me.
A few years. He wasn’t very specific, which I didn’t really expect him to be. Especially with how cancers and tumors in general behave it is hard to determine this with any degree of certainty. But he did say that he’s seen some miracles before. He’s seen people worse off than me still going strong after 15+ years.
· How many patients do you see with my condition and what is there typical prognosis?
Said that they see a lot of nasal / sinus tumors and cancer but the way mine has recurred and spread in the Dura is rare. This is why he plans on contacting other centers to see if they have had any specific cases like mine.
· What about Gamma Knife treatment for this type of cancer?
The Gamma Knife is really for a better defined tumor with more finite edges that can be accurately aimed at. The way I understand it is mine is more of a broad area so the Gamma Knife is not ideal for my situation. He did say that he thought about it and that it is possible that if the radiation kills most of it and leaves a little tumor that has better boundaries that the Gamma Knife may be a good treatment to finish it.