Tom's TC Story

In early August of '92, I was taking a shower and noticed something just not right with my left testicle. I had no idea what to do about this but my mother was a nurse so I sheepishly called her and asked what kind of doctor I should call and does she know any. Boy, I tell ya, asking your mother about your nuts was not all the comfortable. Maybe girls have already been there during puberty - talking about the sex-organs stuff, but it took a little bit of gumption to get over it. But she was fine, she was a nurse and seen worse things.

Well, I had the ultrasound the next morning, and that confirmed a tumor. A tumor! I thought... NO. So surgery was scheduled for the following Wednesday. In the mean time I had the blood work, chest X-rays, and a CT scan (boy, that wasn't fun). They never offered me an epidural approach, though I wouldn't have accepted it. And surely enough it was malignant. Mostly seminoma with elements of embryonal carcinoma. In between the time of the surgery and return of the path report, I jumped into the med-school library (I was living near the Univ. of Cincinnati at the time) to learn as much as I could as fast as I could.

I ended finding a great text book (the name escapes me at the moment, but is something like "Management And Treatment Of Testicular Cancer") that was essentially a collection of papers by various doctors on the subject, each one focusing on a different area. VERY informative, but was dated 1986, which meant that the papers in it were at least 1-2 years old at the publish date, so I couldn't take it for up to date information. The Web didn't really exist at the time, Mosaic was still being written, or was just out on the streets so there was nothing there, and I didn't think enough to check out newsgroups. So really there was no collective information sources like TCRC's put together.

So from the Urologist perspective, RPLND surgery was the next thing for me, and what I read basically confirmed it. Even though I was Stage I, this was the way to go. I never talked to an oncologist, and didn't feel the need for a second opinion, since the path report was cancer - not much room for argument from my p.o.v. And all of what I read said that surgery was the way to go. Chemo only came into play if the RPLND was positive.

So I was scheduled for that surgery for about 3 weeks later. Yea kinda late you're thinking, but at my stage, a 2 week difference wasn't going to make that much of a difference. And besides, my parents (who lived there in town) were already scheduled to be gone for a long planned week visit with my sister out west and seriously wanted to be there for my surgery since I would be staying at their place afterwards. (Oh, I should mention that I was 27, single, and dateless at the time as a matter of fact, and lived by myself in an apt across town.) Besides, it gave me some time for autologous blood donation for the surgery - which I pushed for actually. My feelings were that I know it was unlikely that they would need it, but just in case, I wasn't going to chance it.

Well that went OK I guess, everything was negative - no spread, I was clean. But my post op experiences were a little different. I had an NG tube to pump the stomach clean all the time (that one that goes through the nose and down and rigged to a pump), and a foley catheter. Thankfully I was not awake with either as they went in. And the PCA pump, I requested that over scheduled pills. NG tubes really really really suck, big time. It was extremely painful to swallow since this thing made an appearance in the back of your throat after it exited the nasal system, just in time to get in the way of swallowing. But it was interesting sucking on ice pellets, that is all they would allow me, and watching it be sucked right back up and out - kinda sick humor really. I was about 3 days before that came out and my condition shot up dramatically after that. Oh, and I never had to do and the GI flushing stuff either.

So after that I was essentially done. Follow up followed and I just had AFP/xray tests every once and while, but I was done. Yeah, I lost the ejaculation part after it since they must have hit the nerves in the process, even though the intention was nerve-sparing RPLND. But then I was in no position to be needing to have kids and figured - hey free sex for a while. Besides, the doctors told me they could restore that later with drugs and such when I needed it.

I never really had a hard time emotionally with it, mainly because it was only surgery - I never had to feel like I really had cancer or something. More like a bad appendix or something, just that I only hurt after surgery, never before. And so I never went through any major life assessment phase or anything. I laughed a lot about it, which made it easier for me, but threw off some friends who expected me to be more serious. In retrospect I guess I was able to live off of denial and since I still had one left, the long term impact was not all the great and I just viewed it as a blip in my life, and something to tell stories about.

And I thought that was the end of the story. Until this past Fall.

In July I noticed that something was not right with my remaining one. It seemed to all of a sudden be a little larger than normal - kinda like looking in the mirror and wondering when did my hair all of a sudden get so long?. Well it didn't look that much bigger and so I kept a watch of it since after my first surgery the remaining one had gotten a little larger (to take up the slack I guess!) so I was bothered but thought I would just watch it. Besides, I had my latest blood work in May. After a few weeks it got to me and I made an appointment with the old Doc. My initial plan was to talk about my impending move out to San Fran/Silicon Valley (work move), but my agenda completely changed by the time of the appt. My mental state was slowly going down hill as I began to guess that this might be cancer again. I had the appointment on Monday in Sept, and the movers where supposed to be coming on Thursday.

By the end of the day we had the ultrasound and pretty much confirmed that it was indeed probably cancer AGAIN. Holy shit, I thought. Well I was a wreck instantly. I immediately went over to my girlfriend's house and started crying. You see, this time there was a whole lot more to be scared of: being completely castrated, never being able to have kids, wondering if any woman would ever accept me this way, what about hormones (or lack of), and so on. Whoa, what a list.

The web now *really* existed and so I tried poking around there, but found nothing more than what I already knew. Certainly nothing for repeat customers. So I tried the group and found some people to talk with - but again, no two timers. I had so many questions and wanted so many answers. This time was really messing with me, although there was only about one weekend when I was down and out and was the worst. My existing relationship was ending since I was moving (and she wasn't) and unfortunately she was not to receptive to giving me a lot of her time so I felt *very* alone. Thankfully I had lots of other friends to rely on which I did heavily, not to mention my parents who still lived across town. In retrospect I am actually glad the relationship ended since I was able to more fully appreciated the compassion and friendship I had that I we tend to take for granted. I think I am stronger for it.

We tried to save some sperm to bank since this was the last opportunity, but alas, the analysis showed that there were none to save - either the existing tissue was already gone, or the retrograde problem was present from the RPLND. Either way there was nothing that we could do there. I asked about taking the testicle during surgery and sucking all the little swimmers out then, but was initially told that there wasn't much that could be done with the immature sperm cells extracted that way. But eventually we got to thinking that that was only a limit of current science but we could try and saving them anyway hoping technology will improve enough to use them by the time I was having kids - certainly not yet if I am just ending a relationship. [Editor's note: This is theoretically possible, and if you find yourself in this situation, I would push the doctors to try and do this.]

So that was my only hope, surgery. Didn't work that way. They sliced it like a ham right there in the OR and had the reproductive guys all ready with their little suction thingeys, but could find no active tissue - all succumbed to cancer. Boo Hoo. Boy did that attempt really rile the pathologist who is supposed to measure the thing and whatever else - they don't like people messing with stuff they are supposed to get intact. So the kids issue was settled. This time it was pure seminoma, which meant radiation. Something new to go through. But thankfully Stage I again.

So it was time to get ready for radiation. But I was still supposed to me moving which was now on indefinite hold. I considered moving out here and having the radiation at Stanford since I would be living nearby there. But eventually I came to my senses and decided to move after that was all over after I found out I would only require about 17 exposures, not 6 weeks like I heard. I actually had a very easy time with the radiation, all things considered.

And here I am now. I finished up radiation just before Thanksgiving and finally moved the week after. I now live in Mountain View which in on the SF peninsula nearer to San Jose. I spend my days programming computers with a company I started several years ago (there are longer stories here, but unrelated to the immediate topic).

Well, its late now, and I have an hour's drive home so I best be off. I'll be sending more mail soon...

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