Pathology question/ newly diagnosed

[JKD]

First off, thank you all for your contributions to the forums. I have been digging around for hours and I have learned a lot.

I was diagnosed a week and a half ago and had my orchiectomy last Thursday, June 14th. My CT was clear, notwithstanding a 3mm lung nodule that I will remember to worry about another day. My blood work was mostly normal although I don't have a copy in front of me (one reading was 6.4 instead of <6.1 but I don't recall which one). Anyhow, the reason for my post is my pathology report, which is not back yet.

On Tuesday my urologist called to tell my that he spoke to the pathologist and his preliminary finding was that tumor was mostly teratoma, but he was doing extra slides so that he could make a more confident identification of the remaining cells. Today my urologist called to tell me the pathologist had called him to let him know that my case was being referred to Johns Hopkins' pathology department for their expert opinion. Although they are still telling me it is mostly teratoma (I think he said "almost entirely teratoma"), there are abnormal cells that they can't identify with certainty. (I have been treated at Lake Forest Hospital outside of Chicago thus far.) He also mentioned that the tumor was completely encapsulated within the teste with no sign of abnormal cells on the 'edges'. The pathologist did not mention anything about vascular invasion and my doctor didn't ask.

Anyhow, I would love to hear any opinions you all might have as I am about to pass out from Google-exhaustion. Is it normal for a local hospital to not issue a pathology report without consult or do I have one of these ultra-rare tumors? Why didn't they just send it out in the first place, I was going to get a 2nd opinion regardless (and now I am already thinking about a 3rd)? I am seeing my urologist tomorrow (staple removal), what should I ask him?

Thanks for reading this far. I know I should save the worry until I know what to worry about but the waiting is just awful. Any and all comments/speculations are greatly appreciated.

Regards,

John

ps 38 years old

[Margaret]

Hi John,

Just wanted to say that I know this is stressful but this forum will be supportive. It does sound like you have an excellent doctor and that is a great first step. Let us know how you are.

Thinking of you,

M.

[Fed]

Welcome to the Forum, John. I second Robert's call on your pathologist, and for very good reason. Teratomas are among the most bizarre of tumors. Under the scope, then can adopt pretty much any cellular morphology. I have seen slides in which teratomas look like intestinal tissue and others where the teratoma actually looks like cartilage! A second opinion will be invaluable.
The lung nodule is quite small, but it will definitely warrant further observation. Once you get all the details of the pathology, post them here. The wait sucks, but in a case like yours where most of the suspected tumor is teratoma, the wait will actually produce a more accurate result.
I hope your recovery is going well. Best,

[JKD]

What's up with the lung nodule?

Were your markers elevated before the I/O ?

Hi Robert,

Re the nodule, the radiologist expects it is scar tissue, my urologist recommends keeping an eye on it with follow-up scans in a month or two.

I have not had blood work after my I/O, I expect that will be done at today's appointment. My blood work was done two days before my I/O and we discussed it while I was in pre-op so my mind wasn't very focused. We were going to look at everything together when we got the path report in a few days which is now 8 days, so I will be talking to him about the blood work specifically today. Everything was normal except the one test, 6.4 vs <6.1, I am embarrassed to say that I do not recall which test it was. All I know is that my urologist was very matter of fact about it and at the time I was content to wait for the path report to discuss it further (not so content now).

Thank you for you comments, I will surely keep the board updated.

John

[JKD]

Margaret & Fed,

Thanks, I appreciate the comments and support. I will be sure to post updates as I get them

John

[JKD]

Hey John,



I wouldn't place any significance on him sending it to J.H , as if it was some crazy tc stuff, he probably would have sent it elsewhere. My speculation to that would be that he knows someone there that he trusts.


R

Hi Robert,

You were right on, the pathologist at LFH worked under Dr. Jonathan Epstein at Johns Hopkins and Dr. Epstein is going to personally review my case.

My urologist told me today that they are looking at possible malignancies, but when I pressed him for details I didn't really learn anything. I want to know if there is a non-germ cell tumor present and they just can't identify it, or they are trying to determine IF there is a non-germ cell tumor present. I also don't know if I have misunderstood what he meant by malignancy as I am assuming they are referring to malignant transformation but my urologist is admittedly not a cancer expert. He has referred me to a urological oncologist who has worked at Northwestern and Evanston Hospital in Chicago. Besides the fact that he has a lot of RPLND experience I don't know how much of a TC expert he is.

I am thinking that since I am a minimum of a few days away from learning what I have I should take this time to research some of the experts discussed here. I am very close to Chicago and not too far from Indianapolis, should I just skip over this guy from Evanston and start trying to get appointments with these other places? Are they hard to get in to? My urologist said he would make whatever calls I asked him to if I didn't want to see his Evanston contact, but he doesn't know anyone personally on the Indiana staff.

BTW, it was my AFP marker that was 6.4 and I did not get anther blood test today. He said he wanted it to be 10+ days and said the new urologist/oncologist would know to take care of it.

I have left a message with my urologist that I would like to speak with the pathologist at my local hospital. I have not heard back and may have missed him for the weekend but I figure the pathologist can't leave me any more worried than I am and he might just put my mind at ease a little.

Regards,

John

[dadmo]

John:
It sounds like you have a great team working for you. From what you posted so far they seem to be on top of everything and certainly willing to drill down to an answer. Trya nd not stress to much about them wanting to nail down the pathology, that's a very good thing. I do have one question, what makes the doc's think the lung spot is scar tissue? They are probably correct but did they give a reason for that assumption?

[JKD]

John:
It sounds like you have a great team working for you. From what you posted so far they seem to be on top of everything and certainly willing to drill down to an answer. Trya nd not stress to much about them wanting to nail down the pathology, that's a very good thing. I do have one question, what makes the doc's think the lung spot is scar tissue? They are probably correct but did they give a reason for that assumption?

I should qualify that my urologist said it was "probably" scar tissue, but it would require observation. There are actually two nodules, the other is <2mm. I don't think he is assuming it away, he has mentioned several times that we need to keep an eye on it and I am thinking about it quite a bit.

Now that I am thinking about it, I will ask him on Monday if an old chest X-ray could be used to verify that they've been around for a while. I've never had a CT before, I'm not sure if these are big enough to be picked up on X-ray.

Regards,

John

[dadmo]

Just for your reference about 10% of the population has lungs spots that are unrelated to any illness so it's not a bad assumption. My son has lung spots even after chemo and they watch them like a hawk.

[JKD]

Hey John,

well, you will get a good pathology report. J.H has an awesome path group.


If the new urologist have alot of expereince with RPLND, he must know some about tc. You still want to review with a medical oncologist when this all comes in. So yes, you can have it all reviewed. I would wait until you get the path report. You are really in a holding pattern until then.

Try to relax and do something for yourself. Take the weekend off from cancer so to speak.

let us know,


R

I know that is good advice, I just don't know if I can pull it off.

I will meet the new Dr. on Wednesday for a consult and to see if I like him. I don't want to get the path back and then have to wait another week to get an appointment with one of the expert centers.

Thanks a lot for your comments, it is very generous of you (and everyone here) to give so much of your time and support.

John

[JKD]

Update

Well, pathology report finally came in today.

Malignant germ cell tumor (5.2 cm) consisting of teratoma 80%, Yolk Sac Tumor 20%. The tumor is organ confined. No angiolymphatic invasion is seen. No intratubular germ cell neoplasia. Spermatic cord and margins are negative for tumor. See note.

The note is underneath and explains why the conclusion is YST and not adenocarcinoma, with reference to a few immunohistochemistry tests and other features that help to distinguish the two. Presumably this is an explanation for my local pathologist. I guess now I know why he sent it out to JH.

I consulted with the new urologist today before I got this report. He said I looked like clinical stage one (pending this path and new blood work). Although surveillance was possible, he would recommend RPLND due to the teratoma being resistant to chemo if it resurfaces later. I liked him and he was able to answer all my questions (frankly I didn't have many after all my research and the great info here) although he is not as experienced as I previously thought with the surgery. He learned nsRPLND while at SK but he only does 3-5 a year now.

I want to consult someone else before I take the next step but I haven't decided who as of tonight. I still haven't spoken with a medical oncologist, but unless my tumor markers have risen since the I/O is there a reason to at this point? I asked the urologist and he said "not yet" (or something to that effect) but it just seems strange to me to have cancer and not have an oncologist.

Anyhow, I have lots a questions about the RPLND (from the end user perspective that is) but I will search through the other threads for a while first because I'm sure they've been asked before. Thanks again for all you support.

John

[Fed]

Hey John,
There are several good things in the report. The first is that adenocarcinoma has been ruled out. Adenocarcinoma is quite nasty and much more difficult to treat than TC, so you have that going for you. Also, the recommendation of an RPLND is quite sound because, as your doc said, teratoma does not respond to chemo (teratoma behaves too much like a regular and healthy cell, so it can evade chemo easily). You definitely need to speak to a medical oncologist, since he/she should be heading your treatment team. Of course, if you do go the RPLND route, that would be performed by a surgical urologist. You had mentioned MSKCC somewhere along the thread. If you are near NYC, Joel Sheinfeld is the man to have the surgery done. He does over 100 of these a year, and he is a quite a purist in his methods. My best friend trained under him, and he speaks wonders of him. The team at Sloan is top of the line, and when it comes to matters of a complex surgery such as the RPLND, you want the best.

[JKD]

Hi Fed,

My urologist learned the nerve sparing RPLND at SK but he is in Chicago now (as am I). I do not doubt his surgical ability (although 100 a year sounds comforting!), however I am a little put off by the fact that he tells me I don't need an oncologist yet.

I have four kids and I have developed the habit over the years of second guessing doctors. I don't think it is necessarily a bad habit, but I don't want to be obsessive about it during my treatment either.

I have some calls out for advice now and my eyes are peeled here as you all so generously share your own experiences. I am just rapidly climbing the learning curve and grabbing as much advice as I can get on the way.

John

[Fed]

ok, so his basis for an RPLND is what again? The lung nodules? If I remember correctly, you have NOT had a ct-scan of the ab yet? If you have not, don't do anything until you see a medical oncologist. If he is worried about teratoma, he is going to take out your lymph nodes without doing a ct-scan? If he hasn't done a ct-scan, or even ordered one, find a medical oncologist, and possibly another urologist. A ct- scan should have been on schedule by now.

This is true, and I would hope that any competent medical oncologist would definitely order an abdominal/pelvic CT and a chest X-ray prior to making a call on an RPLND. To me, that seems like a no-brainer as it should to the med onc.

[Scott]

If I remember correctly, you have NOT had a ct-scan of the ab yet?

John's first post in this thread said he had a clean CT scan.