Regarding my first op (called the inguinal orchiectomy, or testicle removal), I told the doc after his initial diagnosis that he had to be wrong, but as reality set in, I said, "You want to cut off WHAT?" Of course, as long as the other one works, you can function just as well like you could with one kidney.
Before doing the RPLND, they usually order a CT scan to see if anything is observable. If there is, it sure narrows your options. If the CT does show suspected enlargement, you can be certain its surgery time. [Editor's note: This is not true. If the CT scan show enlarged lymph nodes, it means something will be done, but by no means is surgery the only option.] BTW, false negative Alpha Fetoproteins (AFP) are common. They, along with Beta HG tests, are often used, but they are unreliable for TC. If they are positive, you've got cancer. If they are negative, however, they are meaningless. As for the chemo, some non-seminomas (like teratoma) are not chemo sensitive. It just doesn't work. When it does work, it seems it is usually done before the surgery. This may have an impact on your recovery time.
My experience wasn't the most pleasant. Strange, my two-year anniversary is only a couple weeks away...I was told I would be out a couple weeks, not even close--try a couple months (consistent with what others have told me since) and, in my case, more complications.
I guess you know that RPLND is a pretty long operation, 4-6 hours. Its a nasty incision that starts right under the rib cage and goes down.... well, let's say you wouldn't want them carving any lower. The neat thing about the incision is when they cut around the belly button. They start out right down the middle but take a turn when they get to it so as not to slice right through it. Then they keep on going. Personally I wouldn't want to go through it again. My only real concern was what would happen when the anesthesiologist wanted a lunch break or needed to go to the bathroom! I figured all the surgeon could do wrong was leave a sponge inside me but the sleep doc could leave me brain dead...the last thing I remember before going off to la la land was telling him I would order something for all of us from Pizza Hut. Just some interesting trivia: Nearly all the guys I have spoken with told me they got the right side whacked. I did a Medline search about this but couldn't find anything. The best place for an answer would be Indiana Univ, what I call Ball Hall. They do more research than anyone so if you have a question, give them a call if you can't find the answer anywhere else. The phone number for the Urology Dept. is (317) 274-7451.
Virtually all the RPLND TC surgery today uses a "nerve sparing" technique designed to avoid penile dysfunction. The technique is great but sometimes there is an "oops" and the nerves are severed anyway.
I'm sure you've been told that if you might want to have more children, plan on (sperm) banking it before the op. Most guys are quite fertile after the surgery but a few are not. Just a personal opinion here but I think the recovery time might be tied to the extent of hormonal damage. I'm sure some guys bounce back real fast (I even got laid the night of my first op - she just had to try it out to see if the plumbing was okay). Here's what you risk by getting it done even if you don't need it.
The worst that happens is you have a 12" incision that you really didn't need. Assuming no extraordinary complications, the scar should heal pretty well and if you have chest hair, you won't even see it.On the other hand, if you do need to get it done and you don't, you risk a near certain spreading of the cells, "travelin" North" as my oncodoc says. Typical next stop - lungs, liver, or brain, though there are some cases of other places.
The risk to the other testicle is only about 3%. The chances it will return even after the second op? Depends on the type you have (usually a combination of two or more varieties) but for most, if you can get past the first couple years without it acting up, it drops to less than 10% chance after that. Cases after two-three years are rare but there are enough to be reported.
My tumor was what is known as teratoma. No mixture with any other. I needed the lymph node dissection because the scan showed it was traveling. The standard classification for me was Stage IIB. To get up to a III, it has to get to another area beyond abdominal lymph nodes. This is a Stage IV for most every other type of cancer but for some reason unknown to me, our TC typing is different than the others. I'm also an unusual case in that I've had lots of hormone problems. Just one of those freaks whose testosterone plummeted after the op. Getting the level back up to where it might have been has been a real challenge.--this is something really important to keep in mind. If you feel after a few weeks that you just don't feel right, say something to your doc.
I have yet to speak with one doc who before the first op did a testosterone count. It won't be perfect, of course, but at least it will give some kind of a guide to where you were before the surgery. I'm the living alternative. It took 18 months just to get me up to a level I could work with because the increase was negligible each time. Even now, I'm sure mine could go higher as it searches for my own normal range.
I'm sure they've told you that there really is life after this, and you certainly immediately realize what is really important in life. Once you get over the initial shock, you realize that as far as cancers go, this one isn't too bad--you have to be real negligent to die from this. Even those that spread to the lungs and brain rarely result in death. What I'm getting at is that unlike so many other forms of cancer, this is certainly no death sentence. There are even great examples of people who made some lifestyle and dietary changes and actually feel better because of them. I wouldn't describe it as the perfect gift for someone who has everything(!) but compared to so many types, this one pretty much comes and goes. So many others are constantly trying to rid their bodies of this beast with constant chemo and surgeries or being bombarded with radiation...
Speaking of military (were we?), the Royal Navy reported a finding similar to what the U.S. Navy found. Seems there is a significant number of TC cases reported for crew members who serve on the flight decks of aircraft carriers. No definitive reason given but guesses included constant exposure to jet fumes.
In hindsight, easily the most difficult thing for me was to tell my son about it. He was just hitting puberty, 13, and to hear this had to scare the shit out of him. We have always been very close but this brought us even closer together. He refuses to talk about it but I think there are times when he wonders if it might come back. My oncodoc suggested I bring him to one of my appointments but he decided against it. Nevertheless, I think the fact that I was willing to share it with him and the doc would be there to answer his questions, gave him some additional comfort. Like you, I jumped on the net to get some more info. I think I know more about this than any subject I ever studied in school--I'm sure I know more about it than my oncodoc!
This has all been a long way of saying my position has been there are three things this beast will never take away from me. I conceded a few body parts to this demon, but it will never take away my memories, my sense of humor, or my faith. I have everything with those three and any other goodies I get out of life are warmly appreciated benefits. I even stop now to hear the birds chirp or watch a squirrel in the back yard, the little things that all of us take for granted each day. Our lives were all different before it happened but as Loren Buhle says, "this will change your life forever..."