New member 24 yo son with Mediastinal Nonseminomatous Germ Cell tumor

[Trekga]

Exhale at least for a bit! Hopeful, that the surgery removes the tumor with no complications, and that AFP drops afterwards. Thanks for letting us know what the surgeon thought.

[digdoug]

Happy to hear the news. Best of luck with hopefully the last phase.

[MamaAng]

Update: Due to large blood clot in heart, surgery moved to Temple Hospital. Pre-admission testing on Monday, surgery Tuesday. Liver enzymes were high (unexplained) but have dropped into normal so we seem to be a go. So much to worry about and I'm fairly unpleasant.

[Trekga]

I bet you are worried, keeping your son and you in my thoughts. Update when you are able.

[digdoug]

Hoping things went well for your son MamaAng.

[MamaAng]

Hey there!! Thanks for asking. Surgery was last night and It. Went. Great!!!!! Less than 2 hour surgery, massive tumor the size of a large eggplant. Completely encapsulated and not attached to any structures. Lifted right out. Surgeon was thrilled. Now we wait for pathology but surgeon says everything looked good and he doesn’t expect any surprises. AFP was 13 last week. He’s in pain but they’ve already removed his chest tube, he’s up and walking , had pizza and a big dinner!! If he continues on this path he’ll come home tomorrow!!

[Mike]

This is such great news indeed. So glad that the surgery went well. I hope he is wearing his dancing shoes for the December reception.

MIke

[digdoug]

That made my day. Hoping everyone can take a figurative, and literal in your son's case, deep breath and get some peace over the holidays.

[MamaAng]

Hey everyone! Son is home less than 48 hours after the major surgery. He's got a HUGE incision down the mid-line and his sternum, wired together, will take nearly 2 years to heal. He went in at 5:15 pm on Tuesday and they prepared us for a long surgery and difficult recovery. We were shocked when the surgeon came out 90 minutes later! Had him in a chair 6 hours later, up and walking by noon. He ate pizza for lunch!!! He had a small Blake Drain removed around 7 pm after supper and they disconnected his IVs and started oral pain meds. Discharged him at 1 pm today and now he's home, showered and tucked in bed. He does have some pretty heavy pain meds which he takes regularly lol. So now we wait for pathology to determine if he goes into surveillance or requires more treatment. But the surgeon found "nothing abnormal" in his chest and also feels the large clot in heart is attached to the port catheter and may actually come out with the port. He also said the tumor was completely encapsulated and walled off from all surrounding structures although is was pressing on the aorta. It lifted out completely intact but he wouldn't speculate on what pathology will say.

[biwi]

Good to hear. I think his incision will be faster than 2 years? Was it stapled, or actually wires? My RPLND scar (stapled) was pretty well healed up after 6 months.

[MamaAng]

You're right. The incision will heal but the sternum will take 2 years to knit back together, according to the surgeon. The incision is stapled. The sternum is wired.

[JoesMum]

Hi MamaAng, just read your story. So happy to hear that all is going well by the sounds of it. Hope you are on track for the huge wedding in December. As another TC Mum, I can understand what you have gone through. Stay positive - as you are now.

[Ann]

MamaAng - So happy to hear everything is going well.

[MamaAng]

UPDATE: TUMOR WAS 100% NECROTIC!!!!!! Finally saw the surgeon today and he told us the chemo worked perfectly and the tumor was completely dead. Said there was no sign of cancer anywhere. He said my son's case is the talk of the department and oncology seemed surprised about pathology because his AFP was still 13 before surgery. Surgeon feels it's residual AFP and sometimes the liver takes longer to flush it. New bloodwork next week (right before his wedding!) and oncology on 12/11 to see next step. This mom will sleep well tonight!!!

[sanis]

Awesome news!

yes, my oncologist told me that some people develop slightly elevated AFP after the chemo. And some people have simply higher AFP levels...

sleep well..