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Living on a Sailboat in Norway
John Armitage's Story
(11/98) I am 63 and in good health, enjoying an early retirement living aboard a sailboat in Norway and the UK most of the year, visiting family in Colorado in the winter. I'm fortunate in that I've already had many years of a great life, my kids are grown up, and I have 100% hosp and 80/20 surgical/major-med insurance.
Last Monday, I had the incidental MRI that found a 2 cm AN, Black Tuesday' was reading stories about surgery, Wednesday was rebirth discovering the wait-and-watch and radiation alternative, Thursday was bringing the MRI films home and my internist asking me to please let him know what I found out about treatment and expressing astonishment that radiation could be used on an AN, and today (Monday) I am still plowing through ever more information. I'm even having to learn how to use Netscape!
I have gravitated to the Wait and Watch position, and decided that if/when I had to have it treated, I would choose FSR. I expect soon to ask for either distant or face-to-face consults from Staten Island U and Johns Hopkins. If it weren't so tragic it would be amusing to read about the large number of doctors poo-pooing the FSR treatments used by their own two most prestigeous institutions, Mass General and Johns Hopkins.
(12/98) I have been wait-and-watching, and in the meantime decided to try some dietary and herbal treatments to possibly slow tumor growth down. However, after a very short time waiting, I have now decided to go ahead and am scheduled to start with Dr. Williams at Johns Hopkins on 26 January.
In the past 2 years my hearing has become much worse, in the past 6 months my tinnitus has become somewhat worse, and in the past 2 months my balance problems have become quite noticeable although not serious. After thinking about this for a while, I decided that I would risk the possible downside(s) of the FSR treatment, rather than risk further functional degradation. The possibility of spontaneous stoppage of tumor growth and escaping treatment forever was not attractive enough to offset this decision.
My age (63), lifestyle (living on a sailboat in Europe), and very positive feelings about FSR have all influenced this decision, and I don't wish to suggest that this decision would be the right one for others. Incidentally, in the past week I have heard from two friends who have cancer, which makes me feel pretty fortunate to have 'only' an AN.
(2/99) I've just returned to Colorado after being treated by Dr. Williams and his team at Johns Hopkins University Hospital. Things went as I had anticipated (from communications from other patients of his), with everybody from the parking lot to the LINAC machine being courteous, helpful, and downright kindly. Dr. Williams and his staff made sure I had all my questions answered and I never felt rushed. The technicians were happy to take snapshots for me of the mask-making and radiation treatments, so I have them as well as the mask itself as souvieners.
The mask was different than I expected: the entire head, including the face above the lips, is enclosed in a plastic mesh which is pliable when warm and rigid when cool, with a stub to bite on. As it cools, it is kneaded tightly to the skull, nose, eyesockets, cheeks, etc. The close fit, plus the tooth stub, insures extremely little motion of the head inside the mask. The mask is split into back and front halves for removal and replacement.
The tumor is located with reference to the mask in the CT scanner; the infusion of warm iodine solution into an IV for the CT scanner produced a slightly unpleasant flushing feeling, but easily tolerated. In the radiation treatment the mask is used to locate the tumor exactly on the axis of rotation of the LINAC machine and on the axis of rotation of the patient table. As the LINAC is rotated during the treatment, the tumor receives 100% of the radiation, with tissue outside the tumor receiving much less.
I received 2500 rad in 4 scans repeated on each of 5 consecutive days, giving the healthy tissue time to differentially recover between the days. The first visit, with interview and mask making and cat scanning, took a few hours, but on the treatment days I was in and out in a half hour, with nearly all of that time being taken up in checking the positioning. Each day the positioning on the table was verified. I could barely peek out through the mask mesh, and I could hear the shutter on the LINAC whirring open and closed and the machine buzzing while radiating my head, but could feel nothing.
Dr. Williams said my 2 cm AN tumor was classic, without any surprises, and that I might notice slight temporary worsening of my symptoms in around 2-4 months from swelling of the tumor, but eventually most likely my balance would improve and my hearing worsen somewhat. He said in the very unlikely event the tumor should start growing again, it would be very slowly because of the radiation damage. He said that the FSR treatment could not ever be repeated because the trigeminal nerve would have already received the maximum lifetime radiation to avoid damage. [Ed: There is disagreement over this point among leading FSR providers].
The first evening I had a slight headache, but the next morning several people who had not been treated said they had had headaches from a weather front moving through, so who knows? Later treatment days produced no noticeable symptoms. The worst part of the experience was a nasty head-cold I picked up in my travels! A bonus was sightseeing with friends in the Northeast afterwards, before heading back home.
So now I can get back to a normal life, the only thing to deal with being all those bills which will come rolling in over the next months. Remarkably, nobody at JHUH could tell me what the total cost would be, only that there would be around 30 different charges totalling 'probably $30-40,000', sent to my insurance company.
I've tried to write here what I thought might interest most people, and would be happy to respond in more detail to any contemplating treatment and wanting to know more about why I chose this treatment or about the treatment itself.
John Armitage <johna AT gj.net>
February 1999
Updates
(4/99) During treatment, I was told then not to be surprised to have temporary tumor swelling around 2-4 months after treatment, with possible temporary worsening of hearing and balance symptoms. A week ago, just over 2 months after treatment, I suddenly developed numbness and tingling of my skin, strongest on the leg opposite the tumor. Dr. Williams says that it is unusual for tumor swelling to manifest as symptoms, that it is usually just seen radiologically, but that my symptoms sound just like what swelling would cause (right-side tumor, left-side extremity involvement). He advised taking Decadron (with Tagament) if I chose to, in order to alleviate the symptoms. He said that if I did not take the Decadron, I would not cause any harm to the pinched nerves. He advised that my symptoms might get worse before getting better, and could progress to motor muscle weakness. So far, the skin symptoms are stable and nothing new has appeared.
I received one encouraging email from a surgical patient who took Decadron in the hospital without any problems. I also got an email from an FSR patient who had fairly severe facial nerve problems for several months because of swelling, who was not advised to take Decadron and did not do so, and just waited till the swelling and symptoms went away. This helped put my problem in perspective, and I've decided to take it if I need to in order to keep functioning, but not otherwise.
Since the treatment, my hearing has not changed noticeably, my balance may have improved (or perhaps I am adapting better), my tinnitus is worse. I left Johns Hopkins with a well-developed head-cold, and got another as the first was diminishing. Last week I got a third. These are the first three head-colds which I have had develop beyond a slight sniffle in the past 10 years. I am wondering if it could be a result of the radiation on my immune system?
No other effects have been noticed.
(12/99) Ten months after FSR treatment at JHUH (Dr. Williams) for my 2 cm AN, my status is:
So far, I am happy!
(12/02) I just had a 3.5 year post FSR gadolinium enhanced MRI, and the AN has shrunk from its original 2.0 cm to 1.2 cm. By using my eyes more and my 'instinct' less, I now hardly notice my balance impairment, which is objectively the same as pre FSR. My hearing in that ear seems about the same. So I am still very happy with my choice to go to Johns Hopkins back in February of 1999.
John Armitage
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Last Edited: Wednesday, August 13, 2003