Here is the latest...

[NavyHoldi99]

...and unfortunately not so greatest!

I met with my urologist this morning regarding my upcoming bi-lateral RPLND on Tuesday. I'm having a left orch done as well. My blood work came back and my bhCG is elevated (89). My AFP is still within normal limits but higher than before (it was negligible). Those numbers...coupled with the fact that the left nodes are all enlarged now...has her leaning to more cancer. I chatted with my oncologist today and he has the same feeling. Obviously...nothing is certain until they look at the nodes.

If the cancer is back...I'll recover from the surgery and then start chemo in early July. My doc is heading to Chicago tomorrow (as most of yours are I'm sure) for a big oncology convention and will hopefully track down Dr. Einhorn to chat some more about me. It looks like VIP might be in my future...but he mentioned other options for treatment as well.

I also found out that they were unable to totally break down my cancer makeup from last year. I never had a tumor removed...just some tissue removed from one of my lymph nodes. Anyway...they found embryonal carcinoma with the possiblity of others.

Once I find out more...I'll be sure to keep you all updated! Hope you are all having a great hump-day!

[matthias]

Brett:

None of this makes much sense!! So you were diagnosed w/ TC IIIb in 7/06, underwent grueling chemotherapy (4x BEP!!), and now they decide to do a left I/O almost a year later? What about EGGCT?

Do yourself a favor and run this by Mark and Doug on the tcrc listserv. From what you have been communicating, I would be very concerned that you are not getting the best medical treatment available.

...and unfortunately not so greatest!

I met with my urologist this morning regarding my upcoming bi-lateral RPLND on Tuesday. I'm having a left orch done as well. My blood work came back and my bhCG is elevated (89). My AFP is still within normal limits but higher than before (it was negligible). Those numbers...coupled with the fact that the left nodes are all enlarged now...has her leaning to more cancer. I chatted with my oncologist today and he has the same feeling. Obviously...nothing is certain until they look at the nodes.

If the cancer is back...I'll recover from the surgery and then start chemo in early July. My doc is heading to Chicago tomorrow (as most of yours are I'm sure) for a big oncology convention and will hopefully track down Dr. Einhorn to chat some more about me. It looks like VIP might be in my future...but he mentioned other options for treatment as well.

I also found out that they were unable to totally break down my cancer makeup from last year. I never had a tumor removed...just some tissue removed from one of my lymph nodes. Anyway...they found embryonal carcinoma with the possiblity of others.

Once I find out more...I'll be sure to keep you all updated! Hope you are all having a great hump-day!

[NavyHoldi99]

Hey Matthias -

Thanks for the concern...I appreciate it. Between other posts and this one...I think I did a poor job of laying out all the details...sorry!

The reasoning behind the left I/O is precautionary. I had an ultrasound today and there was still no tumor on the left or right testicle. But since it looks like my left nodes are affected first...they want to take out the left testicle just in case.

I talked to both my oncologist and urologist today and mentioned the EGGCT idea (specifically the retroperitoneal) and they both think that is the case. Hopefully (if it is, in fact, cancer) the RPLND, the left I/O, and follow-on chemo will wipe any residual cancer out. Thanks again for pointing me in that direction yesterday!

Thankfully my doc has talked to Dr. Einhorn about me and is looking to get some recommendations regarding treatment post-RPLND.

Again...sorry for my poor communication!

[matthias]

Brett,

as a final, parting thought: I would hope *YOU* to become the world's foremost expert in the treatment of EGGCT. Because if anything goes wrong, neither your urologist, oncologist, or Dr. Einhorn will bear the "ultimate" consequence.

At least, when boarding a commercial airliner, I am assured that the PIC/FO will go down w/ me .

Hey Matthias -

Thanks for the concern...I appreciate it. Between other posts and this one...I think I did a poor job of laying out all the details...sorry!

The reasoning behind the left I/O is precautionary. I had an ultrasound today and there was still no tumor on the left or right testicle. But since it looks like my left nodes are affected first...they want to take out the left testicle just in case.

I talked to both my oncologist and urologist today and mentioned the EGGCT idea (specifically the retroperitoneal) and they both think that is the case. Hopefully (if it is, in fact, cancer) the RPLND, the left I/O, and follow-on chemo will wipe any residual cancer out. Thanks again for pointing me in that direction yesterday!

Thankfully my doc has talked to Dr. Einhorn about me and is looking to get some recommendations regarding treatment post-RPLND.

Again...sorry for my poor communication!

[NavyHoldi99]

You couldn't be more true on that point. But did you have to use flying as an example? I am a pilot after all....

Seriously, though...I'm truly glad you mentioned it yesterday. I've done some reading on it and feel much better knowing what I know now.

Thanks again.

Brett,

as a final, parting thought: I would hope *YOU* to become the world's foremost expert in the treatment of EGGCT. Because if anything goes wrong, neither your urologist, oncologist, or Dr. Einhorn will bear the "ultimate" consequence.

At least, when boarding a commercial airliner, I am assured that the PIC/FO will go down w/ me .

[tccancercop]

navyholdi99

Are you a pilot in the Navy? What aircraft? Have they given you a rough time since you came down with TC? Are they allowing you to fly at all now?

[NavyHoldi99]

navyholdi99

Are you a pilot in the Navy? What aircraft? Have they given you a rough time since you came down with TC? Are they allowing you to fly at all now?

I fly the FA-18 Hornet...well...I did anyway. I went med down last June when everything started. After treatment I put in for a waiver and was approved in Feb. So I started flying again then up until last week when my current fiasco began. Blah! I'm guessing it'll be a good year before the medical boards even entertain a waiver request again. Kind of a bummer...but I'm sure I'll stay busy doing something else in the meantime.

[Fed]

OK, now I have caught up. Wow, you indeed have an oddball of a case. It sucks that the markers have gone up, but if it was indeed a retroperitoneal EGGCT, then the RPLND will likely be the best option to rid yourself of the beast. My guess is that this is probably easier to treat than a mediastinal EGGCT. Regardless, it looks like you are handling things quite well. I'm glad that you have found us; we're pulling for you, dude.

[Already Bald]

Brett,
If I remember right, EP or BEP will be uneffective to treat a primary tumor in the testicle without the I/O. From what I'm reading here it would seem that the same is true for an EGGCT- so the RPLND is the move. Once they get rid of that primary, you will be in much better shape. I would recommend additional opinions on your pathology, TC is very rare- and your case even rarer.
Best,

[NavyHoldi99]

OK, now I have caught up. Wow, you indeed have an oddball of a case. It sucks that the markers have gone up, but if it was indeed a retroperitoneal EGGCT, then the RPLND will likely be the best option to rid yourself of the beast. My guess is that this is probably easier to treat than a mediastinal EGGCT. Regardless, it looks like you are handling things quite well. I'm glad that you have found us; we're pulling for you, dude.

From what I've read...you are exactly right. RGCTs seem to be easier than any of the other EGGCTs. So that is most definitely a good thing.

I would recommend additional opinions on your pathology, TC is very rare- and your case even rarer.

I talked to my doc yesterday about that. They never did get a full patholgy last year because there was no turmor. Again...as far as we can tell...there isn't an acutal tumor this year. Will they be able to get a full pathology from the lymph nodes that are removed?

[Already Bald]

Will they be able to get a full pathology from the lymph nodes that are removed?

Yes, they will study the nodes- specifically the enlarged nodes- looking for germ cell makeup. I wonder if they will also find the original tumor as well...
I would ask for a second opinion on these slides, you can have them sent to MSKCC or IU.

[dadmo]

Brett:
That's great news about your oncologist being at a meeting with Dr. Einhorn. For a non-standard case of tc it looks like all the pieces required for a cure are falling into place. Good luck and next time you're up tip a wing for the tc crowd.

[Fed]

I wonder if they will also find the original tumor as well...

In principle, this would be feasible. Metastatic tumors are very similar to their primary of origin, but they have additional mutations that enable the spread. I don't think there is a standard procedure in place to tell them apart, and I gather this is probably an important area of research.

[NavyHoldi99]

quick update...

Just wanted to bump my post and give you all a quick update. I'm heading in for my RPLND in the morning...a 0530 showtime. They have it slated for 6.5 hours...so it should be a good time for all!

I have a caringbridge website set up that my wife, Andrea, will update tomorrow when she gets the chance. Feel free to swing by and see what the good word is! If nothing else...hit refresh a few times in a row to bump the total number of hits up and make me feel loved!

https://www.caringbridge.org/visit/brettholdiman

Take care and see you this weekend!

I'm out!

[Fed]

Best of luck tomorrow, dude. Looking forward to hearing from you next time.