Yesterday morning I was back at RMG for another PET scan, just six months after my last one, to investigate the lump I found in my chest. The experience was similar to last time, although I learned a couple of new things. One, that the fluorine-18 radionuclide tag used by RMG comes daily from a cyclotron in Las Vegas, even though there’s a cyclotron in San Diego county. That facility was purchased by another medical imaging company, who apparently doesn’t want to sell the radioisotope to competitors. That’s unfortunate, because it’s my understanding that production of the short-lived (half-life, 110 minutes) fluorine tag is a major portion of the high cost of PET scans. Second, that during the scan, I was also getting bombarded with gamma rays from an external source. I had thought the PET scan was completely passive, but apparently the gamma ray bath helps define the image of my body and its internal organs, making the scan easier to read. I guess it doesn’t really matter whether my exposure is from a source inside my body or outside, it’s still only about 7 milliSieverts, about 7-8 times the normal annual background radiation level in San Diego. My doctor should get the results later today.

In the afternoon I went in for a biopsy of the lump. Twice, I had a needle inserted into my chest, and the doctor moved the tip around vigorously as he sucked in a tissue sample. It wasn’t really very painful, but the first time I bled all over the place. He said the results should be available by Friday. I can see why he wanted to wait after the PET scan to take the sample – after this rude treatment, the semi-firm lump now feels like a hard knot.

The PET scan should be a good indication of whether the lump is malignant or not, and the biopsy should determine whether I have a metastasis of my melanoma, male breast cancer, or nothing serious.

Posted by Greg as Melanoma, Posts About Me at 08:54 PST

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This morning I met with the surgeon recommended by my oncologist, a Dr. Paul Goldfarb. He went through my medical and family history, and really started laying into me about my smoking. He said that I’ve dodged the bullet so far, and with my weight and smoking, plus the high cholesterol indicated by my niacin regimen, he basically told me I was going to keel over at 60, even without cancer coming back into my life. Now that I’ve had a few friends do so, plus the math – 60 is only twenty years away, and it means I’m already two thirds of the way through my life – this is starting to hit home. He recommended gradual reductions – half a pack a day for a month, then five cigarettes a day, then quitting – and I’m going to give it a try. He recommended against nicotine gum and patches on the grounds that they’re just as addictive and would only prolong the problem, and told me to use a cigarette case, filled daily, so I can’t easily cheat. He seemed impressed that I was able to take 1000 mg a day of niacin, and recommended Lipitor™; I told him I was using the flushless form, inositol hexanicotinate, and he asked where I found it. I really had to hunt for it myself – all the drug stores that I had checked out either didn’t have it, or had it in small quantities of 100 mg pills for exorbitant prices. You want to know where to find true flushless niacin, not time-release, in 500 mg pills for a reasonable price? Try the Walmart. I’ve found botttles of 60-count 500 mg capsules for less than five bucks under the Spring Valley label from Nature’s Bounty – which is cheaper than buying direct.

He also said my former surgeon, Dr. Michael McCue, had been very aggressive in my earlier treatment, much to my advantage, and I think that that had been part of the reasoning behind the “dodging the bullet” statement. My sentinel node biopsy had pulled one node out of each armpit after radioscintigraphy had indicated two sentinel nodes. The one from my left had a micrometastasis of only 0.1 mm diameter and the one from my left turned up a single cell. Initially, Dr. McCue had thought to go after only the nodes in my left armpit – removing lymph nodes from the armpit leaves you with a life-long high risk for edema, which could result in my arm swelling twice its size for up to a year, and it meant I shouldn’t have any restrictions on either arm, including short duration stuff like a tourniquet for blood-drawing or getting my blood pressure taken, and even wearing a watch was out. But during surgical boards, the consensus was to go after both sides. Good thing, too. After my bilateral axillary node dissection, I had seven nodes removed from my left, which all tested clear, and eight from my right, one of which had another micrometastasis.

So we decided to wait on getting a biopsy from the lump in my right chest until after my PET scan on Monday. He wanted the benefit of the undisturbed scan, which makes sense, and we’ll do the biopsy in the afternoon. If the lump is benign, I’ll be getting a relatively minor lumpectomy. If it’s melanoma, I’m up for getting a good chunk of my right pectoral muscle removed, and if it’s breast cancer, I’ll lose the nipple and any breast-like material above the muscle. Of course, if the PET scan reveals other metastases, the chest area might be the least of my worries. Stay tuned for Monday’s report.

Posted by Greg as Melanoma, Posts About Me at 13:53 PST

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To quote a bowl of petunias.

A couple of days ago, I was at work, slouched in my chair, scratching my chest, when I felt something that wasn’t supposed to be there. There was a lump in the fatty tissue over my right pectoral muscle – an area I cannot help but describe as my breast.

Normally, I wouldn’t be so concerned that this might be a metastasis of my old melanoma, because it’s not an area that I was lead to expect a metastasis would appear. I was under the impression that it would be more likely to happen in a blood-rich organ, such as the brain, lungs, liver, or so forth, and I just had a PET scan last October that said I was free of any sign of hypermetabolism. But that was six months ago, and I have a family history of breast cancer – maternal grandmother and an aunt – and a local tv personality here in San Diego just recently had a well-publicized case of male breast cancer. So I took the uncharacteristic step of actually going to see my doctor about it in less than a week.

My oncologist, Dr. Jurgen Kogler, a staid German gentleman, confirmed that there really was something there. He wants to check it out thoroughly. His words were guarded – he didn’t give any indication as to whether he thought it was more likely to be a melanoma metastasis, a completely different case of breast cancer, or merely some sort of benign growth. But his body language said differently. Normally calm and reserved, he practically paced around the examination room, and I could tell he was concerned. I got blood drawn right away, I have a consult with a surgeon tomorrow morning, and I’m scheduled for another PET scan for Monday morning.

Hopefully, this will turn out to be nothing important. My research indicates that melanoma metastasizing to the breast is very rare – I found one study of eight patients, all women, with a median time from original diagnosis to discovery of 62 months. It’s been 66 for me. And one case of it occurring in a man. So it behooves me to go through the various tests and wait for something definitive rather than worrying, but I did learned one thing – if it is melanoma, I have awfully dismal odds of living another five years.

I’ll be reporting further as I learn more.

Posted by Greg as Melanoma, Posts About Me at 00:27 PST

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I created and posted an animated gif of the upper torso portion of my PET scan, but it’s pretty big – 5.5 MB. I’ve put it on a separate page so it won’t unnecessarily slow down any visitors. If you want to see it, it’s at 2005 PET Scan. I’ve also posted some details about my diagnosis and treatment.

If you found this page because you’ve been diagnosed with malignant melanoma or know someone who has, I’d be more than happy to answer any questions about my experience. I know that when I was first diagnosed, I was starved for information.

Posted by Greg as General Science, Melanoma, Posts About Me at 08:09 PST

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My Mum and Dad both emailed me (Dad was traveling) to congratulate me on the PET scan results, which was a little embarrassing because I posted in my blog before I called to tell them. Dad also called on Saturday.

Although I described the PET scan testing down at the subatomic level and included some calculated physics, I apparently was very skimpy in my description of what it felt like. People who know me would nod and think “typical” about this. Dad and others have asked about it, and I promised to post a picture of the machine. So here it is, boosted from the Siemens site:

I lay on the sliding bed part, which is 195 cm long – exactly my height, and there was some concern prior to the exam about whether I would fit. They asked me whether I was more than 17 inches across at my shoulders, and it turned out I was 18 1/2 inches, but upon consultation, the technicians had said I should fit. It turned out to be a little awkward, though – when I was slid through the aperture on a dry run, my elbows hit the sides and were squeezed in. On the actual run, when my arms first entered the hole, I had to clench them up against my body so that they would be in the same position once my elbows entered the ring. It was a little uncomfortable, and it took maybe twenty minutes to half an hour from the time my hands entered to the time my elbows were up against the sides and I could just relax. That’s a long time when you’re trying to lie completely motionless.

The technician explained that I could move the parts of my body that weren’t in the actual hole, but I figured that too much movement could lead to small distortions, so I limited myself to relaxing my arms beforehand and wriggling my feet a little afterwards.

I reported earlier that I was disappointed but not surprised that the viewing software that came in the mail was pretty limited, but since then I have played with it a but and found that the tools and buttons give a little more functionality than I first thought. There’s just no help files to tell you how to do this. The image I posted can actually rotate around the vertical axis in a sequence of 32 images, which looks pretty cool, and the moving view makes the whole thing look a lot more detailed than the single image. You can see many bones and internal organs quite clearly. Still, although I found a “Save As” function for each image, the extracted image is horribly crippled as far as resolution goes. I wanted to extract all the images and make an animated gif for posting. I guess I’m back to hacking the images out of the data files. However, this might make a gif too large for posting – maybe I’ll try the extracted version first.

Posted by Greg as Family & Friends, Melanoma, Posts About Me at 16:14 PST

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While I was gone in Illinois, a cd showed up at home for me. It contained the results of the PET scan I took on October 21st. PET, which stands for Positron Emission Tomography, is this very cool (and very expensive) procedure where you are injected with a sugar, fluorodeoxyglucose, that has a radioactive tag, in this case fluorine 18. You sit in a quiet spot for 45 minutes while the sugar is dispersed through your blood stream, and you don’t want to move at all. The first time I did this, the technician also told me to try not to think?!

The sugar is taken up by cells that need it, and they don’t notice the fluorine atoms releasing positrons as part of their decay. The positrons – yes, antimatter, don’t get to travel very far until they meet an electron and the two particles mutually self destruct, releasing energy in the form of gamma rays and in accordance with E=mc². Since the mass of the two particles is about 1.82 x 10^-30 kg, the energy released by one reaction is about 1.6 x 10^-13 kg-m²/sec² or joules – about one 40-quadrillionth of the energy in a single Tic-Tac. I got to lie on a sliding platform that slowly moved my body through the 3D gamma ray detector, and since there’s a lot of me, it took more than two hours. The gamma rays are paired, so the detector can figure out their point of origin.

Cells take up sugar at varying rates depending on how active they are – the brain, heart and kidneys are hard workers, but nothin’ loves the taste of sugar like a malignant cancer cell! So while tumor cells are noshing, the PET scan is looking for them. And here’s a sample of what it found:

Of course, my heart damned near stopped when I saw the big dark splotches, but it was easy to figure out heart, bladder, and brain. Finally, conclusive proof of the existence of a brain, despite the speculations of my wife, teenage daughter, parents, several high school teachers and a couple of drill sergeants.

Well, get to it, Greg! Drumroll please…

“No evidence for hypermetabolism to suggest metastatic melanoma, period”

Well, maybe the period was for his voice recognition software, but I don’t care. I have reached the fifth anniversary of my malignant melanoma diagnosis, a significant milestone, and I only had a 60% chance of getting this far. Melanoma is pernicious in that a single cell can apparently hide out or reproduce at a very low rate, and when you thought it was gone, it can decide to pick a nice spot in another organ and start making tumors. I have a lifetime ban on giving blood, and I can’t be an organ donor. But the most dangerous time for reemergence has now passed, and with continuing improvements in detection and treatment, my prospects of dying from something else, and hopefully a lot later, are just getting better.

So I’m feeling really good about this. At least until the nuclear medicine people get the payment from my insurance company and turn around to hit me up for the rest.

I’m also dying to find a 3D reader for the files on the cd. The software that the medical office sent barely meets the HIPAA requirements for providing patients with copies of their records, but the raw data files appear to be stashed away on the disk. They stripped the file extensions off, but a little peeking has already identified the file types, and there seems to be several freeware applications that can open them. The technician noticed me examining the equipment and asked if I was an engineer, but I already know how the thing basically worked – I was looking for manufacturer and model numbers so I could pull spec sheets, hopefully down to the level of file output. I won’t be happy until I get the full 3D information – maybe I can plug it in to some animation software. I hope the bones and joints are discernible – I’ll need that to accurately replicate movement. The resolution of the full scan results (I was able to get the tech to show it to me after my first scan), ought to be just incredible – way more than the image above suggests. The major limiting factor in accuracy should be how still I was able to stay.

Posted by Greg as General Science, Melanoma, Posts About Me at 10:11 PST

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So what can you say after not posting for almost a month? I guess after a couple of weeks you just have to wait for the impulse to find something momentous to die off, and when you get the chance, post. Right now I’m in a hotel room in Shiloh, Illinois, and tomorrow I’ll start working on the cathodic protection on the fuel systems at Scott Air Force Base.

It’s been a busy month. I’ve tried changing my work schedule to start working at 6:00 am so I can be home by 3:00 pm, and it’s really been kicking my butt. The quiet time at the end of the day, when the baby has gone to sleep, is now gone, because I usually fall asleep right along with him. I used to get some writing in then. Plus, at work I’ve cranked out a series of rush-rush reports and gotten into another job that took whatever spare time I did have at the computer – yes, I’m actually coding on the job! We’re making a database of cathodic protection systems for a client with a small municipal water system, and I’m writing the VBA code for the interface.

I’ve also had a round of doctor’s appointments to go to, which means making up more time lost. This month is the fifth anniversary of my diagnosis of Stage III malignant melanoma, and I’m getting some pretty complete checkups to assess how I’m doing. Considering that a Stage III only has a 60% chance of surviving five years, I’ve already done well, but I’ll hold off on the real relief until I get the PET scan results back.

Well, I’m back, but I’m not going to push it. See you around.

Posted by Greg as Corrosion Control, Melanoma, Posts About Me at 16:19 PST

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