RPLND Question

[Fed]

Excellent! Yes, I do plan to ride in Austin, too, although I have to finish earning my way there first. I've got a ways left to go in my fundraising. At least Fed and I can plan to meet you there.

Hey Brett,
I've been away for a couple of days, but I was finally able to get caught up on your thread. I also saw that you started another one, so I'll save my comments until I get to read it. Suffice it to say, it will be great to get to meet you in person over in Austin. I'll be there along with most of my crazy Mexican relatives , so it should be a blast.

[Scott]

Keep moving forward, Brett!

[NavyHoldi99]

That was kind of the point to my PM yesterday. It would be something mentioned, I would think.

Is your Oncologist the same as last year?

It makes sense, so, yes, I would be asking. It would have been something I would have wanted to know. Yes, you are doing what your doing, but still. I would be more comfortable with my Dr telling me, if that were the case, and then I would wonder why he didn't. Does he know?

Just goes to show the importance of information......

Your seeing someone tomorrow?

Yes...my oncologist is the same. I asked my wife if she remembers hearing anything about EGGCT from last year and it didn't ring a bell. I'm meeting tomorrow with the urologist doing the procedure but I might swing into the oncology clinic at the hospital and see if I can snag my oncologist real fast and ask him a few questions.

Information is totally vital...but now I think I have too much running through my head! I don't think this is something that was purposefully kept from me. So either it was mentioned last year and I don't remember...or he didn't think it was applicable to me.

I don't know if I'm making any sense anymore!

[NavyHoldi99]

I can't imagine nobody telling you that since last July, then having a Dr say " "We think it's teratoma" . Makes sense, but I can't imagine them not saying so.

You certianly have a point there. Who knows...maybe they said it and it just didn't register in my noggin. Either way...it looks like the protocol for treatment is the same.

[NavyHoldi99]

If you had no primary testicular tumor, not even burned out, you were most likely afflicted w/ an non-mediastinal, extragonadal germ cell tumor. Read up on it, just as you would study your flight manuals and FARs.

Let me assure you that your life depends on it!

Wow...a lot of what I've read so far regarding what you mentioned really fit the bill for what I experienced last year. I'll have to do some more research and ask my oncologist about the specifics and whether it was my situation or not.

[matthias]

Generally speaking, that notion is wrong.

One can be marker-negative at initial diagnosis, and marker-positive on relapse, and vice versa.

Yes, the new markers. Genarally speaking Idea would be that if they were elevated originally, normal after treatment, and the same cancer is somewhere else, it should show elevated markers again

[...]


R

[matthias]

If you had no primary testicular tumor, not even burned out, you were most likely afflicted w/ an non-mediastinal, extragonadal germ cell tumor. Read up on it, just as you would study your flight manuals and FARs.

Let me assure you that your life depends on it!

Robert -

I wasn't even aware how they broke things down...that's good to know. I'll check that next week just so I know myself. I never had the surgery because I never had a tumor in my testicle. As strange as it is...my diagnosis came along because my lower back had been hurting for 3-4 weeks straight and I thought it might have been a kidney stone. My flight surgeon set me up with a kidney ct scan and they noticed the enlarged lymph nodes along my lower spine which was causing the back to hurt. Blood work and a biopsy later...they diagnosed TC. Interestingly enough...an ultrasound and manual inspection didn't find anything on the testicles.

I'm in the Navy so I'm being treated at Portsmouth Naval Hospital. My oncologist is awesome and the whole experience last year was great (given the circumstances, of course).

Krista, thanks again for the info. I'm surprised that his tumor markers were normal with two nodes that had cancer. I'm looking forward to getting my bloodwork back next week...

Thanks again guys...I certainly appreciate it!

[NavyHoldi99]

So, are you saying that these nodes are the same ones as before, and there were others on the right side, and you are wondering why left would have teratoma and not the right? If your markers are normal, then there would be a higher % chance that it was necrosis rather than teratoma or cancer singularly. The highest % chance is that it is a combination of teratoma/necrosis. The cancer % they put at I think 13 %. In your instance, Seems like they are going to do the Bilatteral RPLND because they don't know where it came from. That would make sense. You don't want them to do the left, and find out they have to go back in next year and do the right , for instance. Now that they feel ( marker pending) that you are clear of disease in the chest, for instance, they are going to make sure you are clear along the lymph node highway. All of it. I am not sure , but an interesting question would be what if it presented itself in the testicule? Don't know if that's possible. maybe someone does ?

Really though, the bottom line here is that if your markers are in range, they are going to go in and take them all out. Most likely, that will be it.

I hope it is for you. You gotta be going nuts not flying

R

More or less...I think you got it right. Both sides were enlarged last year (to my understanding) but the chemo reduced them back to normal size (save a few which were still decreasing in size...just larger than the rest). Then this last scan shows the some of the left side nodes have grown slightly. If it really is teratoma, necrosis, or a combo of both as the cause...I just wonder why it's only on the left side and not both...since both were affected last year. I certainly hope it is only teratoma/necrosis...but I'm a practical thinker and just trying to figrue all possibilities out before my doc blows me away with something I didn't expect. I do know the numbers are in my favor...so I'm thankful for that.

[NavyHoldi99]

I'm not sure what nodes were enlarged last year during my initial diagnosis. My understanding was both sides...but again, I'm not positive. This time, though...it's only the left side.

Scott...thanks for the info on the low-fat diet.

[Scott]

And what's the purpose of the low fat diet?

Fat in the diet stimulates production of lymphatic fluid. Sticking to a low-fat diet helps take some of the pressure off as your lymphatic system figures out what to do again after surgery that gets it all confused. It reduces the chances that you'll experience chylous ascites, fluid collecting in the abdomen. I highly recommend avoiding chylous ascites; it was no fun!

[NavyHoldi99]

Gee, this seems like RPLND season . It is for quite a few.

You are good. A full sweep of the whole deal is the deal. Should be it. I would say print the RPLND questions off the TCRC, but it sounds like you may have covered alot of them. She can explain it better than anybody but I dont see anything weird about left side/right side. Where there any there before in case I missed that today too? .

Any what before...enlarged nodes?

[NavyHoldi99]

Nice catch about the ball rolling...I crack myself up!

Thanks for the replies. This will be my first surgery and so far I'm happy with how everything is looking. I know I only scratched the surface today with the urologist on the phone. Tomorrow I'll hopefully have a better understanding of what to expect...both with the surgery/recovery and diagnosis.

[NavyHoldi99]

I know she is planning on doing a bi-lateral because I never really had a primary tumor. I guess my biggest "hmmm" stems from the fact that only the left nodes are getting larger. Something's fishy, I say!

And what's the purpose of the low fat diet?

[Already Bald]

RPLND's are done with either right or left templates- and sometimes they are bi-lateral, even with only one primary tumor. You should ask your doctor if she will switch to a bi-lateral once you are open. I'm not sure why she would order an US just because the left nodes are enlarged- but it won't hurt and I'm sure it will be negative.

As for your RPLND, ask her if you will go on a 5 grams of fat per day for 3 weeks after you start eating again. (I did not eat for 4 days post RPLND, then 3 weeks basically fat free- that was done at Sloan-Kettering).
Best,

[NavyHoldi99]

Here's the latest and greatest with me. Robert...tried to PM you but looks like your inbox is full my friend.

Still no word on the bloodwork...hopefully more tomorrow. I spoke with the urologist that will be performing the surgery and am meeting with her tomorrow. The surgery will be next Tuesday. I'm ready to get it done.

She also mentioned that the nodes in question are all on the left side. Now...I'm not trying to be pessimistic...but that makes me think there is something more going on downstairs. If it was teratoma or necrosis I think there would be nodes on both sides affected...not just the left. Anyone care to give your 2 cents?

Because of that...I'm also having an ultrasound done tomorrow. I had one last year and it was clean but that was also before the official diagnosis. I haven't had one since. Maybe that will shed some light on the puzzle.

Regardless...I'm ready to get the ball moving! Hope everyone had a great holiday weekend!