Long day! At the airport and time to go home. I get to go home to two cute little boys soon, and my beautiful wife!
We ended up not only seeing a neurosurgeon but a radiation oncologist as well. They were surprised how fast we got down there this morning, and the radiation oncologist wasn’t sure how we ended up with both appointments in one day. They just haven’t met me before!
Between appointments, I was on the phone with my insurance making sure all the preauthorizations were sent. I had to make a few phone calls to get my clinical reports “changed” to reflect urgency in these consults for insurance sake. It’s a process, but it’s becoming a well oiled machine.
Thanks to all of you in my life, it definitely helps having people by my side. The news was mixed but more good than bad as far as my case goes.
Honestly, I can only thank God for pushing me to get that MRI. I have no other way of describing it. There was no reason to get one. I am asymptomatic. I just felt I needed to get the scan done. It turns out to be the best thing possible, all things considered.
The location the tumor is in, it could have grown to 3-4 cm before symptoms would ever service. With a blessing in disguise notion, we are very lucky to have noticed it this soon.
The bad news is they are 99% certain it is metastatic disease. The good news is it is very treatable for now. The tumor is small and in a great location (superficial and within the right front lobe).
There are 3 options, but multiple combinations. First, we can do a craniotomy to remove the tumor. Second, craniotomy followed by whole brain radiation. Third, craniotomy followed by cyber knife. Fourth, cyber knife alone. Fifth, cyber knife followed by whole brain radiation. Sixth, cyber knife followed by craniotomy (if cyberknife didn’t work or severe tumor necrosis) followed by whole brain radiation.
So, the break down: whole brain radiation is just that. They radiate the entire brain in hopes of not only getting the primary site that is visible but the other sleeper sites as well. Unfortunately, once you do whole brain radiation, you cannot do it again. It does not make sense to do this path right now. It’s something that we need to keep in our back pockets.
Craniotomy is brain surgery. They cut through your skull, lift the dura mater and excise the tumor. They can radiate the area afterwords.
Gamma knife is very precise radiation, and it really is what the name implies. Gamma rays are projected in such a way to in actuality cut like a very precise knife – without open brain surgery. The efficacy and outcome of both, for my case, is very comparable.
All the physicians seem overly optimistic about the situation, and are eager to get this done. As I share in their sentiments, you always have to keep in mind their statistics are based on multiple cases of varying cancers across the board. You have to understand angiosarcoma to understand our precautions and careful questions and concerns. It’s metastatic nature and poor outcome are very important – not to scare people away but to enforce questions that are very important and questions we utilized for this disease specifically. It is very important to understand where the numbers physicians throw out come from, and it is very important to know your specific disease as much as possible.
First, with surgery, how is the bleeding controlled, as a single cell or bleed out could mean disaster for disease? I do not believe it is coincidental that my recurrence in my hilar node was at the exact location of my surgical clips from my wedge resection.
Second, margins are VERY tight in the brain, if any at all. However, we made a point and she agreed that we should look at whatever margins are possible with gamma knife. She would talk it over with Dr. Lang and the physicist on the day of the procedure.
I also mentioned that upon my review of the scans at home that there is a feeder blood vessel coming from the superior aspect of the tumor. With the nature of AS, would it be possible or worthwhile to gamma knife this as well? She thought that was a good idea and would discuss it.
It started out with three options, but you can see we narrowed it down to two. Whole brain radiation can wait for another day, or never.
With the outcomes about the same, it only makes sense to use gamma knife right now. The technology is quite amazing, and you really cannot avoid the “cool” factor amidst all of this news. You tend to remove yourself from the situation, and look at it from an outsider’s point of view. Science is amazing.
Since everything moved so quickly and efficiently, we are waiting for Dr. Lang (neurosurgeon) to coordinate with Dr. Li (radiation oncologist) to set up a date. Gamma knife is a boat load of radiation to a very precise spot.
It’s one reason we use it against AS since traditional radiation (whole brain, IMRT, etc.) is low doses over a long period of time. AS is very radiation resistant. Instead, you pack a very powerful punch to the tumor itself in a single day – in fact, with the size and location of mine, the procedure should only take about 20 minutes.
Now, there are a lot of little things to take into account – tumor bleed outs, AS recurrence, recovery, additional systemic treatment, surgery as well, tumor necrosis, future scans, etc. However, for now, this is the gist of the consults today.
They should get back to me shortly, but we are probably looking at doing this procedure next week or the following week.
Thank you for your very loving and heartwarming messages, both private and public. I assure you I read them all, and will attempt to reply as the days go by.
Tomorrow isn’t promised, but it is something we can dream about. Don’t lose sight of your dreams and your goals, but make sure you share them. Make sure you allow others to experience your life right along with you.
What I truly appreciate is that you don’t make this about me; you don’t make it about my journey. Instead, you tell me about you, your life, and what matters to you. You understand the true value of life and friendship no matter the day or situation. You know that by sharing you, and me sharing me, our lives are both forever enriched and forever changed for the better. I learn just as much from you as I hope you might learn from me.
We have one chance, and things aren’t always going to be easy. It doesn’t matter. We still have one chance to live, and you must choose to live with a passion and love that can transcend for many generations. You must establish within yourselves an unwavering love and commitment to live your life the way it was meant to be. You have shown me each and every single day how to do this with a smile and a simple hug. You all have it in you. Thank you for being you.
I love you all, so very much.