Barb:
If you are checking back, hope for real, that you had a better day, or at least an improving day.
All my tests (least what has been scheduled thus far, are complete). Been nothing but scans and special blood work for nearly two months straight. Hopefully it will be enough for the two specialist to put together the diagnosis, that should lead to treatment(s). Got a lot of faith in these two doctors.
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Forgot to mention, while scan operators are reluctant to ever give signals or hints at what they have seen while conducting scans, my operator tipped me off a bit.
I noticed during this brain scan, as opposed to the one a few weeks ago, that the sounds and sound patterns were very different. Just prior to pulling me out to inject the contrasting agent into the IV, she warned me that the last 3 minute scan, was going to be extra noisy and even violent. She wasn't kidding. It literally shook the whole MRI bed, especially from my mid section and my entire head. Even though my head was held fast by bolts, my head was getting shook from side to side, and the noise was like nothing I have ever head in a MRI before.
After it was over, she took the time to explain what some of the different types of noise meant. None of this I knew before. It gets slower and louder, when they are scanning deeper areas of the body, or in this case, my head. And it goes fast and quieter, when they imaging shallow and less dense areas. And in areas where there is lots of different densities, there is a lot of variation between speed and volume.
I found that interesting.
Near the end, she said the next 3 minutes were on my scalp itself. I found that intriguing. She said the doctor ordered a close look at my scalp (which all of our scalps are thin, of course, just covering over the skull itself. She said the doctor was looking for any evidence, not of PC spread, but specifically looking for porocarcinoma back in the picture.
For those that remember my story, I had porocarcinoma 3 times, from around 1997 -2000. The first two events were in my scalp, about
in the center of the top of my skull, slightly more to the rear, then the front. After surgery removed it the first time, there was a lot of positive margins. In less than a year, it grew back with a vengeance, went from being the size of a dime the first time, to a silver dollar in that short a period. Also, the 2nd time, it constantly bled at the slightest touch, or if I brushed my hair, and it was very dark and "angry" looking. The second surgery, was more serious, as it involved extensive plastic surgery, and they had to remove skin from my thighs to help cover the space. I still have a redish looking, large sunken triangle on the top of my head from that. As I lose more and more hair (old age, lol), its getting harder to cover it.
After the 2nd surgery, there was no known protocol for treating it, other than surgery. Less than 2 years later, I noticed a large rectangular lump in the left side of my throat while shaving. It was just below the surface of the skin, but it didn't hurt. A biopsy proved that it was 100% porocarcinoma, and it was spread in much of the lymph nodes.
Took surgery on both sides of my neck, followed by 70 gys of old school neck and throat radiation. There was no known treatment protocol for this, so my oncologist went on a hunch.
For those that don't know, porocarcinoma is one of the rarest of cancers. Technically, its a "sweat gland" cancer. At the time, I was one of only 38 known cases in American medical history to have it, with less than 300 cases known in the world. I have found out in the years since, that they have lessened the number of known cases, due to better testing. But having it on the scalp is the rarest
location of all for this cancer type. I am one of only two known cases in the world to have it in the scalp, and I had it twice there.
So point of my story, tells me these specialists are sharp and being thorough, because they are making a point of making sure that rare cancer hasn't made a come back. It is not a cancer type that would normally being looked for by pathologist. The ACS doesn't even list it as a cancer type.
Hoping cancer is not the root of all this new damage, but if it is, I would much prefer it be from the spread of PC, then for the porocarcinoma to have returned after a break of some 14 years. Once it spreads, the mortality rate is above 50% regardless of treatment.
Just glad the doctors took those cancer events so seriously as they try to determine what is happening to me. Will be most happy if I get the "all clear" signal from that part.
David
Post Edited (Purgatory) : 2/24/2014 10:24:22 PM (GMT-7)