Head CT

[sldl1106]

I'm just curious... does anyone think Rob should have had a brain scan? He has the EGCT, no mets to his lungs (they did a chest CT before we started chemo and then another the third day of the first round of chemo) and then that was it. No PET or head CT. Of course, being that he is finished with chemo, it annoys me that I have so many questions now.

One more - now that he's finished, how much longer does he have to stay out of the sun?

[Margaret]

Hi stacy, I always wondered about this myself but Boyce did not have a CT to the brain either. I am certain if your doctor thought there was some risk, he would have ordered one. I drove myself nutty with questons like this...hard to trust when someone you love has been ill. If it really bothers you call the doc and ask. Someone here may correct me if I am wrong, but I thought a more 'typical' path to the brain was presenting itself in the lung prior to the brain. So if the lungs were clear, then that is also a telling sign that the brain is clear. But I am sure Robert or maybe Fed would know.

As far as the sun, just use a really great sunscreen and a hat will also help. He may have to be more careful in the sun for a long time, but I am sure he does not have to be a hermit either. Besides the sun is bad anyway, just remind him how many wrinkles you are saving him from when he moans about you lathering him with the sun block.

[sldl1106]

I'm copying directly off of the pathology report:

"DIAGNOSIS:

1. SP: Testis, left, orchiectomy (sr):
Tumor type:
Mature teratoma
Multifocal areas of scarring are also seen, indicating regressed (burnt out) germ cell tumor.

Tumor size:
The tumor in greatest diameter is 1 cm.

Intratubular Germ Cell Neoplasia: Identified
Vascular Invasion: Not identified
Tunica Albuginea: Not involved
Rete Testis: Not involved
Epididymis: Not invovled
Spermatic Cord and Surgical Margins: Not involved
Non-Neoplastic Testis: Exhibits atrophy

PATHOLOGIC STAGING FOR TESTIS (AJCC 2002):
pT1 Tumor limited to the testis and epididymis without vascular/lymphatic invasion; tumor may invade into the tunica albuginea but not the tunica vaginalis."

Then there is a whole Gross Description; not copying it, but the tumor is of a "white tan fibrotic area in the superior portion of the testis confined to the testicular parenchyma, measuring 1.0 x 0.6 x 0.5 cm."

There is very little else, a breakdown of the summary of sections of the testicle with abbreviations, and that's about it.

The first oncologist who we saw at the cancer center here on Staten Island told us it was a germ cell tumor. I'm trying to remember specifics, but I thought he said it was the AFP marker along with the mass that made it so. But he never FELT the mass in the testicle; no one found it until we got to Sloan. I assume the "extra" in EGCT mean outside the testicle. And then the path report mentions it again.

Lay it on me, Richard. What do you think?

Margaret - thanks for your reply. We were told the same thing, that the path would travel upward; testicle, abdomen, lungs, head. When the lungs got the all clear I didn't think they would proceed, but then I read so many things here that I wanted to see other people's experiences as well. Did Boyce have a high AFP or HcG? Their treatment path seems similar, to me.

As for the sun, Rob likes to golf so I was hoping he could get out there sooner rather than later; also, we're hoping to take our yearly vacation to the Jersery Shore if the July 19th CT goes well. I couldn't remember if the Bleo or the EP made him sun sensitive. And trust me - I know the sun is the enemy but at this point he is so pale he's blinding people!! He could use a *touch* of color!!

[dannysbrother]

Hi Stacy,

Are you sure your husband is stage IIIc? As far as I know, that indicates widespread mets to vital organs such as the liver and lungs. He doesn't show this so I think you should double check with Rob's doctor regarding his diagnosis. As for whether to get the brain MRI, I think many people here on the forum might disagree with me, but I say, if if puts your mind at ease, do it. True, it is very unlikely to yield a positive MRI result and may be unnecessary. Another concern is that it will only fuel future paranoia. That, I think could set a bad precedent.

Still though, I say, YOU'RE the patient. The hospital works for YOU. Even if a doctor says you don't need a scan, it's a waste of your time and money, does not mean you don't have a right to request one and have that request honored. You and you're husband have been through so much. If it aids both of you in moving on and forward from this, why shouldn't he get one?

I say yes, not because your husband is at credible risk, but rather for some closure and peace of mind that I think it will accomplish.

Michael

[Margaret]

Hi Stacy,

Are you sure your husband is stage IIIc? As far as I know, that indicates widespread mets to vital organs such as the liver and lungs. He doesn't show this so I think you should double check with Rob's doctor regarding his diagnosis. As for whether to get the brain MRI, I think many people here on the forum might disagree with me, but I say, if if puts your mind at ease, do it. True, it is very unlikely to yield a positive MRI result and may be unnecessary. Another concern is that it will only fuel future paranoia. That, I think could set a bad precedent.

Still though, I say, YOU'RE the patient. The hospital works for YOU. Even if a doctor says you don't need a scan, it's a waste of your time and money, does not mean you don't have a right to request one and have that request honored. You and you're husband have been through so much. If it aids both of you in moving on and forward from this, why shouldn't he get one?

I say yes, not because your husband is at credible risk, but rather for some closure and peace of mind that I think it will accomplish.

Michael

excellent point Michael...I was thinking the same. Stage II would mean a local spread...like to the nearby lymph nodes...stage III would indicate either a large tumor in a more local region, or a further spread..like to the lungs or brain. Boyce was first told stage IIC but due to the size of his tumors they staged him at stage IIIa and did 4 rounds BEP. Stage IIIC is more advanced. Our doctors, the urolg and oncol had different opinions in regards to staging but were kind of close.

[sldl1106]

Thanks, guys. I absolutely thought the same thing you mentioned. Even though the numbers were high, the spread wasn't so wide. So he must've been a Stage II. Nope.

This is initially why our first doc at Sloan, Dr. Kondagunta, wouldn't pin down a stage for Rob, she just mentioned that momentarily it wasn't important because it was so treatable. I brought in the whole flowchart to Dr. Motzer last Thursday that he helped provide at www.nccn.com and we looked at it together and it was stage IIIC, Poor Risk, because of the abdominal spread, size of that tumor, and the ridiculously high AFP number.

I have the path reports from his original CT scans but I only remember it was about the size of a grapefruit and pressing on his kidney. Margaret, how big were Boyce's tumors?

[sldl1106]

Richard -

Markers on this Thursday the 5th, then Thurs the 12th, and CT with markers on Thurs the 19th, and a meeting w. Motzer and Sheinfeld. Round three the markers went from 78 to 26.

What did you mean by this is starting to make sense? The whole pathology thing?

[Karen]

Hi Stacy,
EGCTs are a different beast than primary germ cell tumors in the testicle, where the metastatic path is more predictable. This link may help you get a better idea, as well as point to to some additional sources of information. Markers this Thursday will give an indication if there is tumor somewhere they haven't found yet. I trust that you will get all your answers from Sloan on the 19th, but I would read up on this all you can, get a list of wuestions together, and suggest a brain scan along with the CT on the 12th.

http://tcrc.acor.org/egc.html

[Margaret]

Thanks, guys. I absolutely thought the same thing you mentioned. Even though the numbers were high, the spread wasn't so wide. So he must've been a Stage II. Nope.

This is initially why our first doc at Sloan, Dr. Kondagunta, wouldn't pin down a stage for Rob, she just mentioned that momentarily it wasn't important because it was so treatable. I brought in the whole flowchart to Dr. Motzer last Thursday that he helped provide at www.nccn.com and we looked at it together and it was stage IIIC, Poor Risk, because of the abdominal spread, size of that tumor, and the ridiculously high AFP number.

I have the path reports from his original CT scans but I only remember it was about the size of a grapefruit and pressing on his kidney. Margaret, how big were Boyce's tumors?

Odd that you mention the 'grapefruit size' because that was what they said about Boyce's tumor. One was about 10 cm x 9.9 cm x 10.9 cm and the doc said that was about the size of a grapefruit. The other tumor was about golf ball size. The largest tumor was around his kidney making the RPLND a bit tricky.

[Fed]

I may have this wrong and my memory could be failing me (it's been a long day), but if I remember correctly, weren't Rob's original markers astronomically high? I believe you said he had on diagnosis an AFP of 13,600. Provided he had any lymphadenopathy, he would automatically be staged at IIIC according to the NCCN guidelines based on his AFP levels (AFP>10,000) and the presence of enlarged nodes.

As far as the metastatic pathway is concerned, it's usually pretty standard in that it "goes north" (i.e. testis up to abdominal nodes, followed by lungs, and from there everywhere else: brain, bone, other visceral organs). The only cell types that have a tendency to skip the usual pathway are embryonal carcinoma and choriocarcinoma (the first because it may travel through the bloodstream, the second because it divides very, very quickly). This is why it's crucial to have a complete picture on the pathology.

Karen also stated the issue with EGGCTs. Just like she said, they are a totally different beast, and they are far less predictable that regular germ cell tumors.

[Karen]

Stacy,
I'm picking through your posts and I feel like I'm still missing something.

So he had sever back pain, was diagnosed with TC, has AFP 15,600, BHCG 800. Had a left I/O and kidney stent, then chemo. The testicular path is mature teratoma with areas of regression/burn-out and the testicular tumor was 1cm at greatest point.

There was/is a large mass (grapefruit size) pressing on his kindey, hence the stent and chemo. Has the mass shrunk or is that to be removed at the RPLND? I think in all the path posts on the testicular mass I lost sight of the abdominal mass info.

After 3X BEP he has AFP of 26, BHCG is 0. You are discussind an RPLND but the CTs were clean? The mass size? The nodes?

My comment from the previous post hasn't changed, I'm just trying to put the info in one place. The waiting stinks, but Rob sounds like he's been responding to the chemo and you are in good hands. In a few more days you'll have more answers.

[MRMRSU]

As for whether to get the brain MRI, I think many people here on the forum might disagree with me, but I say, if if puts your mind at ease, do it.

Hi Stacy: I agree with Michael that if getting a brain MRI will give you and Rob some peace, then by all means do it. Andy had one also, and as expected it came back clear, but boy oh boy, did I sleep better after getting the report.

And thanks for the link to cooking light! Hope you and Rob have a great 4th of July.

[sldl1106]

Woah... here we go... First thank you all for all this information. Of course, its making me nauseas but it is what it is.

Fed - I have no idea what lymphadenopathy is. I never even heard the term mentioned before. I'll go look it up now. But for the other reasons, Motzer said IIIC.

Karen and Robert - We don't know yet that the mass has shrunk, because Rob is only five days post round four of chemo. The new CT scans will be taken on July 19th, to see where we are in terms of the RPLND. Dr. Motzer said that even if the numbers don't drop to <15, they will probably proceed w. the surgery as long as the numbers stay constant and don't come up.
Rob had lower lumbar, abdominal and pelvic MRIs, chest x-rays, chest CT and scrotal ultrasound just before we went to Sloan. Then Sloan did their own chest and abdominal CTs the day before the I/O. Then the week of inpat. chemo they did a chest and abdominal MRI. The only mass present in all of them was (besides the testis) the mass in the back. I specifically asked about the lungs twice, and was twice told they were 100% clear. I have all the path reports from the tests on S.I., but none from Sloan's tests.

The doctor on Rob's floor at inpatient chemo told him that the mass had most probably begun to shrink since Rob's pain was gone pretty much by the second day. It was really astonishing to have him been on so much pain meds, then go right to not even needing Tylenol. So the doctor, Dr. Fury, (he was very mid-mannered so we got a kick out of the name) said that was a good indication that the chemo was working.

This bothers me - at initial dx here on Staten Island, Rob's AFP was 11,000. When we got to Sloan, they told us post-I/O AFP was 13,600. So we thought it had gone up in the weeks it took us to get the appt., etc. However, I just now found out last week that AFP had risen to 15,047 in that time, and dropped to 13,600 post surgery! Then it continued down to 1,700 by the beginning of round two. No one ever discussed that with us. And now we're at 26 - we only need a drop of 13 to be within a healthy range, but we're hoping for more, of course. We'll know by tomorrow afternoon or Friday a.m.

New question - does the term "non-seminoma" encompass all the types I'm reading about here - embryonal carcinoma, immature teratoma, yolk sac tumor, choriocarcinoma, and mixed germ cell tumors? Or is it a separate type?

Dr. Motzer's office is getting a phone call from me tomorrow a.m.
This is getting more frustrating.

[Scott]

New question - does the term "non-seminoma" encompass all the types I'm reading about here - embryonal carcinoma, immature teratoma, yolk sac tumor, choriocarcinoma, and mixed germ cell tumors? Or is it a separate type?

Yes, non-seminoma covers all testicular germ cell cancers except pure seminoma.

[Fed]

Fed - I have no idea what lymphadenopathy is. I never even heard the term mentioned before.

Sorry about the jargon... lymphadenopathy is the medical term for lymph node involvement (i.e. lymph nodes with cancer in them).