Just joined the club

[Balance]

Good morning. Sept 19, I was one vacation in Pensacola FL and my right testicle was hard and enlarged. I had no pain or discomfort, it merely caught my attention in the shower because it was heavy. I went to sleep that night, woke up and it was still the same, so I went to the Navy Hospital and was seen by the Urologist there. US confirmed a large mass and he wanted to do an Orchiectomy the next day. I opted to drive home to Atlanta GA and see another Urologist for a second opinion, plus I would rather have this surgery near home. The second urologist said the same exact thing, so on Sep 21, I had an orchiectomy on my right testicle. Pre-orchiectomy all my CT scans were normal. My tumor markers were normal except for the AFP. AFP was 855.5. Pathology revealed that the tumor had Yolk Sac tumor 50%, teratoma 30%, seminoma 15% and embryonal carcinoma 5%. It also revealed that there was no tumor anywhere else outside the testicle. Epedidymis and hilarious soft tissues were negative for tumor, tunica vaginalis was negative for tumor.

So yesterday I was diagnosed with non-seminoma stage 1s testicle cancer. The urologist said that we need to check the tumor markers of AFP at the end of Oct to ensure it is going down. He explained that AFP has a half life of 5-7 days. So I am guessing he has a certain number he is looking for when I go back and get my blood drawn again. If he likes what he sees, he is suggesting surveillance/observation. If the markers are still high, then I think the obvious outcome will be chemo. Obviously, I am hoping for great news! But I wanted to share what I have going on, since I have used this forum to gain so much knowledge on the subject and wanted to pass along my experience. Thank you for the support!

Pre-orchiectomy:
pT1b: tumor mass measured 4.5cm x 3.5cm
S1: AFP 855.5 (AFP< 1,000)

Diagnosed: NSGCT stage 1S

White/Caucasian
Age: 37(I turn 38 tomorrow)
Profession: Airline Pilot/Navy Pilot

[axe900]

You are true soldier,no fear in your post.Keep up,I lost both of them but life is going on.
Good luck.

[Ryan Bi]

I think your diagnosis should be stage 1, not 1s, since you didn’t mention post- orchiectomy the level of tumor markers. Am I right?

Amy

[Balance]

Yes that is correct. He said absent of the information he wanted to start out on the side of caution. So if my tumor markers come down, then yes it would be just stage 1... which is obviously what I’m hoping for. I think in my mind planning for worse hoping for the best! I won’t know about tumor markers until the end of the month.

[Ryan Bi]

Thanks for your clarification. I think after orchiectomy very often people take blood test in week later to see the trend, but it isn’t must. I hope your AFP comes to normal, and you won’t suffer more!

Amy ,Ryan’s mumm

[mcintoda]

Best of luck! Did your pathology show lymphovascular invasion?

[Balance]

I appreciate that. The report says that Tumor involves the stroma of the rete testis and no definitive lymphovascular invasion is seen.

[Davepet]

I would ask for a marker test now, it's been about two weeks since surgery & AFP should be in a normal range by now (855/2=428, 428/2=216). Most labs, anything under 300 is nothing to worry about. Also, there is absolutely no way I'd do chemo based on AFP alone. It is not a proper tumor marker, it is a marker of on inflammation & can be elevated due to many causes. Only with a scan showing spread would make me take chemo in your position.

Dave

[Balance]

I discussed this with both surgeon and oncologist separately. They both agreed that waiting would be fine. Although the oncologist seemed a little hesitant. Almost like she wanted to pull her own labs. But then just decided to wait. I would have liked to pull them now as well. I may put in a call to see if we can do it earlier.

Also, once I get all the data, I plan on sending an email to Dr. Einhorn with my data to see what he thinks.

[Davepet]

I can't see any advantage to waiting, why not find out sooner? Blood tests are easy & inexpensive & the results will be as meaningful now as they will be later. JMHO.

[Balance]

Yea I am going to call and see if I can get them sooner. Appreciate the input!

[Balance]

So heres an update...which I feel is promising.
Got my lab results from 1 month and 1 day post operation.

AFP levels went from 855.5 down to 19.3. I feel that is really good, but the urologist still doesn't want to call me cancer free until it is less than 6.1. So we will do more labs in 2 weeks or a month to determine its level.

If it continues this way, then I will be just stage 1 and not stage 1S....so that is very promising.

I think I was just taken back a little by the urologist sayin he doesn't feel comfortable saying I was cancer free, even though the oncologist I met with last month said I already was cancer free and what we were doing was more maintenance then anything else because of the high tumor markers. Next appointment with the oncologist will be Nov 27, followed by an appointment with urologist on Nov 29th.

Unfortunately if I was in a normal profession, I could go back to work, but since I am in aviation, now I get to go through the process with the FAA doctors to determine if I am able to come back to work! Fun times!

Def grateful for what I feel are great results. Hope everyone else are receiving good news themselves!

[Trekga]

AFP has dropped yay! I would ask for another CT Scan if AFP has not dropped lower at next draw. Sorry about work. You will still be on surveillance for next 5 years. Once your marker and subsequent scan come back clear than you should be able to resume work.

[Mike]

To me the AFP results sounds great as they have appeared to have dropped in half about 6 times which is on track for a half-life of 5 days or so. You and your doctor may find it of interest an editorial written by Dr Einhorn in that outside of other evidence that they consider an AFP<25 as normal. http://ascopubs.org/doi/pdf/10.1200/JCO.2014.56.0607

Are you still active with the Navy? If so, there may be some issues to consider as far as next steps and I am more than happy to discuss them with you in more detail. My email is in my signature. In some of the armed forces there are issues with the ability of returning to active duty because of the ability of being able to be deployed given the need for access to CT scanners. I have heard of issues and in other situations have not but at least wanted to mention it if it may come to play.

Definitely keep us posted.

Mike

[Smartie]

I would ask for a marker test now, it's been about two weeks since surgery & AFP should be in a normal range by now (855/2=428, 428/2=216). Most labs, anything under 300 is nothing to worry about. Also, there is absolutely no way I'd do chemo based on AFP alone. It is not a proper tumor marker, it is a marker of on inflammation & can be elevated due to many causes. Only with a scan showing spread would make me take chemo in your position.

Dave

Just to point out, I think there is confusion here. Raised AFP certainly would be cause for concern. It is LDH that is the non-specific marker. :-)