New here- EGCT diagnosed in April

[jeffreymb]

Hi all,

Sorry for the long intro but I figured I'd type out all the info I have right now.

I have been lurking for awhile but figured it was time to introduce myself. My name is Jeff, 25 years old. I was diagnosed with an extra gonadal germ cell tumor in early April. There is no evidence of primary tumor in the testes (ultrasound was done on March 31 and again May 16, both came back clear). A blood test on March 30 shows my only evevated tumor marker to be b-HCG at 101.

The tumor was found in my abdomen with a CT scan on March 26. The reason for the scan was I had been having abdominal pain. The tumor measured 9.3 x 5.4 cm (pretty large from what I understand). A biopsy of the tumor was done on April 1. They were expecting to find lymphoma but the pathology report came back as a mixed germ cell tumor. The pathology report states that it is a mixed germ cell tumor with predominantly embroyonal carcinoma. I am going to ask at my next appointment what the other elements of the tumor are (considering it does say "mixed"). My oncologist tells me my staging is non-seminoma stage IIC.

I had a PET scan and MRI on April 8 which confirmed the findings CT scan but showed no other spread. I started chemo on April 19 and am doing 4 x EP. I have finished two rounds to date.

My b-HCG level actually increased to 267 on May 10 (measured before the start of round 2). My oncologist's explanation for this is that it probably increased from March 30 to when we started the first round of chemo on April 19. We didn't take a tumor marker test on April 19 when I started chemo. I am a little frustrated by that. I contacted Dr. Einhorn and Jackie at IU to get their input. Dr. Einhorn wasn't concerned with the 267 marker level, which was very reassuring. I just had a PET scan this past week and my oncologist tells me the tumor has shrunk by about 60% in size which is good news.

Looking back I wish my oncologist would have suggested 3 x BEP because I have already experienced hearing loss/ringing in the ears from the cisplatin. At the time I hadn't done enough research to know that was a possiblity and equivalent to 4 x EP. I understand the ringing may be temporary, but the hearing loss is probably permanent. It really frustrates me as I am a music person. I am especially worried because I am only half done with chemo and the effects of the cisplatin seem to be cumulative. The hearing issues were definitely worse after round 2. If anyone has any suggestions/experience on that I would love to hear it. I start round 3 of chemo on Monday.

Is there any other info that I am leaving out? How do you attach a signature to the bottom of your posts? This forum has been a great help to me so far.

Thanks,

Jeff

[Fed]

Welcome to the forum. It is great that you are having this taken care of. Primary extragonadal germ cell tumors are quite finicky, but with the treatment line you are following, you should do well.

To change your signature, go on the blue menu bar and look under the "Quick Links".

[dadmo]

Jeff:
Have you mentioned the hearing problem to your doctor? My son got 4xEP and the doc was always asking about that.

[jeffreymb]

Originally Posted by dadmo

Jeff:
Have you mentioned the hearing problem to your doctor? My son got 4xEP and the doc was always asking about that.

Yes, the oncologist is well aware. I didn't have a baseline test before starting chemo (no one suggested it). After I noticed some hearing loss after the first round I went to the audiologist and had my hearing tested. I was in the "normal" range, not perfect hearing but still ok. Therefore my oncologist wasn't too concerned. Since it has been worse after round two I am having another hearing test today and we can compare to the first test. Another member here used fosfomycin to protect his hearing and I am going to ask my oncologist about that possibility. Any other suggestions? Obviously the dosage of cisplatin could be lowered but we would really like to beat the cancer too.

[richy77]

Welcome Jeff to the forum. I'm also an EGCT victim, and your staging isn't far off mine. My primary tumor was a little smaller, but I had a slight spread to the lungs. I was diagnosed with lymphoma at first, but after blood markers were taken it became clear that I had a germ cell tumor. As Fed alludes to, these can be tricky to manage, but it sounds like you are on the right path. Feel free to PM me if you want to have a chat. You've certainly reached the right place to ask questions.

[Itsadeepbluesea]

One of the reason your levels may have risen is the time between blood work and start of treatment but also when the chemo kills the cell it lyses them and they spill there contents into the blood. From my understanding it is not unheard of for there to be an initial rise before the levels start to drop. I actually asked my doctor not to tell me the results of my first blood test as i knew this could happen and I knew it would me me worry.

[Crimson617]

Jeff, I also experienced ringing in my ears and a little bit of hearing loss (but not much). From what I was told, tinnitus and hearing loss occur because of nerve damage. I tried eating foods that were high in Vitamin B, such as a lot of leafy vegetables....I even forced myself to eat kale. I have no idea if it helped, but I can tell you that I don't have tinnitus now and I don't have loss of hearing anymore. But you should keep your doctors in the loop on how it's progressing so that they can make any adjustments to the dosage.

[jeffreymb]

Originally Posted by Crimson617

Jeff, I also experienced ringing in my ears and a little bit of hearing loss (but not much). From what I was told, tinnitus and hearing loss occur because of nerve damage. I tried eating foods that were high in Vitamin B, such as a lot of leafy vegetables....I even forced myself to eat kale. I have no idea if it helped, but I can tell you that I don't have tinnitus now and I don't have loss of hearing anymore. But you should keep your doctors in the loop on how it's progressing so that they can make any adjustments to the dosage.

Crimson- Thanks for this information. I'll have to eat some more vegetables I'm glad to hear that your tinnitus is gone and that the hearing loss has recovered. Hopefully it will be the same for me. I have kept my oncologist in the loop. I had another hearing test after round 2 of chemo which showed a little more hearing loss (compared to my test after round 1), but nothing major. I still notice the loss though and it bothers me. My oncologist told me he would write a prescription for fosfomycin (to potentially prevent hearing loss) for my 3rd round of chemo which starts Monday, but he never did. He isn't on call this weekend and Monday is a holiday, so I won't get it until Tuesday at the earliest

[jeffreymb]

Originally Posted by richy77

Welcome Jeff to the forum. I'm also an EGCT victim, and your staging isn't far off mine. My primary tumor was a little smaller, but I had a slight spread to the lungs. I was diagnosed with lymphoma at first, but after blood markers were taken it became clear that I had a germ cell tumor. As Fed alludes to, these can be tricky to manage, but it sounds like you are on the right path. Feel free to PM me if you want to have a chat. You've certainly reached the right place to ask questions.

Richy- I sent you a PM. Thanks for the support and glad to see that you are all clear!

[Karen]

Just wanted to welcome you here, Jeff! I see you are in good hands with advice from the guys.

[richy77]

Originally Posted by jeffreymb

Richy- I sent you a PM. Thanks for the support and glad to see that you are all clear!

No probs - I've just sent you a reply. Dont worry about asking lots of questions - thats what we are here for!

[jeffreymb]

Hi everyone,

I just found out that my b-HCG has increased slightly to 288. This was measured before the start of round 3 of EP on May 31. Previously is was 267 before the start of round 2 of chemo. Is this a cause for concern? I would have thought it should be decreasing, especially since the latest PET scan shows a significant reduction in the size of the tumor. What gives? I am trying not to let it worry me, but would like opinions. I will also discuss with my oncologist, but would appreciate your thoughts as well.

Thanks,

Jeff

*edit- I just talked with my oncologist who basically said as the tumor is dying b-HCG can become elevated as it is released into the bloodstream. I am still not completely satisfied with this answer as I would still be expecting a decrease based on the experience of others on this forum and b-HCG half lives. I don't want to get worried over nothing, but this lack of tumor marker decrease seems fairly significant to me*

[Fed]

Typically markers rise transiently after chemo begins. When the cancer cells are whacked with chemo, their contents spill into the bloodstream causing an apparent increase in marker levels. You might want to get another test in a few days.

The one issue of concern to me is that you are depending heavily on PET scans. PET scans are not recommended in cases of non-seminoma because they can give you a false negative if you have teratoma. Teratoma is not PET-active, so you will have to depend on CT scans alone to determine whether there is any around.

[jeffreymb]

Thanks Fed. I am sure that a CT scan will be done after the four rounds of chemo are over to see what residual mass (if any) remains. Is it normal to do CT scans during chemo as well? So far my oncologist has just done one PET scan after round 2 of chemo (I had a CT scan before chemo started). The reason for the PET scan was to make sure the tumor was responding to treatment, which it seems to be due to a decrease in size. Unfortunately since I have an EGCT all we really know of the pathology is what we learned from the biopsy- primarily Embryonal Carcinoma. We are not sure if there is any teratoma but it can't be ruled out.

[Fed]

Originally Posted by jeffreymb

Unfortunately since I have an EGCT all we really know of the pathology is what we learned from the biopsy- primarily Embryonal Carcinoma. We are not sure if there is any teratoma but it can't be ruled out.

Indeed that is one of the main concerns of an EGGCT.

I can't offer a response to your CT-during-chemo question, but I am sure others that have undergone chemo can.

[jeffreymb]

Hey everyone...any other opinions on the trend in my b-HCG tumor marker? Has anyone seen levels remain elevated during chemotherapy then fall dramatically post chemo? Maybe I worry too much but at this point in treatment I would have really expected to see a drop. It feels good to be done with three out of four rounds of chemo, but at the same time I really want to see some results to help ease my mind.

[Smartie]

I guess the source of your worry is based on whether the increased markers is an indication that the cancer is progressing despite the chemo. I would say that is very unlikely. EC does respond very well to chemo. Also, we know that yours is responding because of the evidence of the PET. I think it's most likely to be the result of tumor lysis - the breakdown of the tumor causing bHCG to be spilled into the bloodstream.

This is a quote from Dr Nichols, taken from the Testicular Cancer Resource Center

Tumor Markers

The tumor marker levels are a very important and convenient way to gauge the progress of chemotherapy. However, sometimes they go up after the first cycle. That does not mean that the chemo is not working. Dr Nichols notes that, "Sometimes there is a surge of markers with initiation of therapy, sometimes the markers are rising rapidly before and you catch it on an up phase. The practical aspect is that very rarely would I let the markers values at cycle two make me change or abandon therapy for first line treatment."

[jeffreymb]

Thanks for the reassurance Nick. I guess I just need to let the chemo run its course and see where I end up. It is hard to be patient. If tumor markers don't normalize after chemo is over I will definitely be contacting Dr. Einhorn for the next steps. Hopefully things won't need to get to that point.

[Paul54]

I'm no expert on chemo, but I'd have to agree with Nick that a significant decrease in tumor size is a very good sign. Hang in there.

[jeffreymb]

Hi everyone,

I just wanted to give an update on my situation. My b-hcg tumor marker level has still not come down after the third round of chemotherapy. My oncologist could not give me answers as to why. Worried, I contacted Dr. Einhorn and provided him with copies of all my pathology reports, scans, tumor marker levels...everything. His response was that I do not have an extra gonadal germ cell tumor, for several reasons:

1. The only definitive information from the pathology report is that I have a carcinoma of unknown primary origin. A germ cell tumor was just a possible diagnosis.
2. My lymph nodes which are enlarged are upper abdominal lymph nodes, typically germ cell tumors present in mid-line abdominal nodes.
3. My b-hcg marker level would definitely be declining at this point in treatment and should probably even be normal by now if I had a germ cell tumor.

Based on all of that, my diagnosis now is "carcinoma of unknown primary origin." Basically, a cancer where the primary site cannot be determined. Unfortunately, it looks like the testicle is not the primary site for me. I now have a very poor prognosis. Cisplatin-based chemotherapy has at least shrunk the tumor somewhat, so that is a good thing and I may have a small chance for a cure. I will be meeting with a specialist at IU this coming Thursday to try to figure out what to do next. Carcinoma of unknown primary isn't Einhorn's specialty, so I will be meeting with another doctor there. I wish I would have started with them from the beginning.

Thanks so much for all the help you all have provided, and I wish the best of luck to each of you.

[Scott]

Originally Posted by jeffreymb

A biopsy of the tumor was done on April 1. They were expecting to find lymphoma but the pathology report came back as a mixed germ cell tumor. The pathology report states that it is a mixed germ cell tumor with predominantly embroyonal carcinoma.

Jeff, I'm confused. This part of your post from May 25 had sounded pretty conclusive.

Hang in there.

[richy77]

Jeff - sorry to hear about your latest uncertainty. Please continue to hang around, and I hope you get some answers soon.

[jeffreymb]

Thanks guys. I am trying to hang tough but it is really hard right now. I'll post some updates once I learn more at IU.

Scott- The interpretation of the pathologist at my local hospital was mixed germ cell with predominantly embryonal carcinoma. The biopsy sample was then sent to Mayo Clinic and various stains and studies were done. All of their stains failed to pinpoint the primary site, although now that I read the pathology report carefully it does state that the patterns do not fit the profiles of embryonal carcinoma.

Apparently the diagnosis of cancer of unknown primary origin happens somewhat regularly. I think I read that approximately 5% of all cancers diagnosed are "cancer of unknown primary origin." You can google it to learn more.

My oncologist did tell me at our last appointment that the treatment of etoposide + cisplatin was being used in my case because they suspected germ cell tumor (although it wasn't certain), AND because it was the only curative treatment. You can see why I am somewhat desperate right now. Obviously I am not giving up hope. I'm also not too happy with my oncologist because I wasn't informed of this from the beginning. I was under the impression that I had an extragonadal germ cell tumor and there was no question.

The good news is that carcinoma of unknown primary is usually treated with cisplatin based chemo, so my treatment hasn't been for nothing.

[jeffreymb]

I guess I should have said that the reason they were treating me with etoposide + cisplatin was because germ cell tumor was the only CURABLE possible diagnosis. Obviously I really want to hear what they have to say at IU. Hopefully they can offer me some hope.

[Fed]

I'll just throw this in, though it may fly in the face of what Einhorn said in point 2. Could this be teratoma? I just can't think of anything else that would maintain your HCG levels elevated .

[jeffreymb]

Originally Posted by Fed

I'll just throw this in, though it may fly in the face of what Einhorn said in point 2. Could this be teratoma? I just can't think of anything else that would maintain your HCG levels elevated .

Does teratoma cause HCG levels to remain elevated?

[Fed]

Originally Posted by jeffreymb

Does teratoma cause HCG levels to remain elevated?

Here's my hypothesis (and it's only a non-medical hypothesis at that). Since teratoma is derived from a germ cell tumor, it follows that it may produce HCG. Also, teratoma is resistant to chemotherapy and it can only be removed surgically, so that could explain why you still have elevated levels of HCG and not a full-fledged reduction in tumor burden. Again, this is just speculation, but it is something worth considering.

[jeffreymb]

Originally Posted by Fed

Here's my hypothesis (and it's only a non-medical hypothesis at that). Since teratoma is derived from a germ cell tumor, it follows that it may produce HCG. Also, teratoma is resistant to chemotherapy and it can only be removed surgically, so that could explain why you still have elevated levels of HCG and not a full-fledged reduction in tumor burden. Again, this is just speculation, but it is something worth considering.

Correct me if I'm wrong, but isn't it standard procedure to wait until HCG levels have normalized after chemo is completed to do an RPLND to remove any residual teratoma? If that is the case, then how could teratoma produce HCG?

[jeffreymb]

Hi guys,

Thought I would give you an update. I met with the doctors at IU last week. They were very good. We did an endoscopic ultrasound (EUS) and a liver MRI in an attempt to identify the primary site. The EUS showed nothing. The liver MRI showed that half of my liver was atrophied due to the enlarged lymph nodes pushing up against it. So, we still don't have a diagnosis, I am still cancer of unknown primary origin. This week I am finishing my 4th and last round of EP. Then, on July 14 I will go to IU and have surgery to remove the remaining enlarged nodes and the half of my liver that is atrophied. I did learn that livers regenerate, so it should grow back to normal The surgery is sort of like an RPLND but it is the upper abdominal nodes. My surgeon's name is Dr. Nakeeb and from what I can tell he seems very good. The intent is to remove all of the cancerous nodes. At that point they can get a detailed pathology and try to figure out what I have. Removing all the nodes probably does not mean a cure. There may be adjuvent chemo or radiation later. We really won't know what needs to be done until we get the results of that operation on July 14. I'll keep you all posted. The other doctors at IU are still hoping to find a germ cell tumor, even though Einhorn doesn't think it is likely. He is still on board with the planned surgery though.

Jeff

[Scott]

Glad to hear you have a plan of action set, Jeff.

[ally30736]

Congrats on finishing the EP this week. I hope the surgery next month will provide you with some answers. Quite a strange case you have....

Ally

[jeffreymb]

Originally Posted by ally30736

Congrats on finishing the EP this week. I hope the surgery next month will provide you with some answers. Quite a strange case you have....

Ally

Yes, mine is unfortunately a very strange case. Cancer of unknown primary is a terrible one to be facing. Unfortunately I have my latest b-HCG marker level back and it still rising, up to 365 now, sigh. At this point things look bad, as I think this seems to definitively rule out a germ cell tumor. All the other options seem to be terminal. It is nice to be working with some very knowledgeable doctors at IU, but even with their level of expertise it looks like there isn't much hope for me. At least they are willing to give surgery a shot, which I am excited about. I'll write more as things progress.

Jeff

[Aegean]

Jeff,we're all behind you. I don't have any ideas to offer, just a hearty good luck with the surgery.

[mahalomom]

Jeff,

I've just caught up on your thread. I'm sorry things are still unkown. I am glad that you're at IU and have some of the best docs in the country looking over you.

Please don't give up hope....keep fighting. We're all behind you.

Mary Ann

[Andycoles]

Jeff,

I've just read through this thread; sorry you are going through such a hard time.
What does shine through it all is your 'never give up' attitude, which is a real credit to you.
I really hope you get some answers soon.

Please keep us posted.

[jeffreymb]

I got some pathology results back from the Endoscopic Ultrasound done at IU on June 16. They did a fine-needle aspiration biopsy of a lymph node near my stomach and here is what the report says:

"Fine needle aspiration, lymph node, peri-gastric, 2 x 4 cm.

Malignant cells are present which include large, bizarre cells and multinucleated cells. Many of the cells have abundant cytoplasm. The cytologic findings are suggestive of a non-seminomatous germ cell tumor, specifically choriocarcinoma. However, there is no tumor on the cell block preparation, and therefore immunohistochemical stains which would be required for a definitive diagnosis cannot be performed."

I did have immunohistochemical stains done after my initial biopsy on April 1 which failed to identify the primary site or provide a definitive diagnosis.

This is the first time that I have heard choriocarcinoma suggested in my case. From what I understand, choriocarcinoma usually presents with mets to the lungs and sometimes the brain, and bHCG is usually very highly elevated at diagnosis, often 10,000+. In my case I just have enlarged abdominal nodes and bHCG is slightly elevated (100 at diagnosis and 300+ now). My tumors have been somewhat chemo-resistant, which would be in-line with chorio. Hopefully we get some answers after the planned surgery on the 14th (which I am super nervous about by the way). In the meantime, thoughts?

[Fed]

This is specifically looking like choriocarcinoma based on the pathology report. This being active chorio, you will need to move quickly. This will definitely be expedited because Einhorn is already on-board. My guess is you won't have surgery at all and go straight to the next round of chemo (could be either 4xVIP or possibly high dose as second-line). Your markers are low for chorio, so I think that bodes well for you. I believe Einhorn should be notified at once.

[Krehan]

Well, looks that they found the tumor's origin? Im sure that you gonna be fine! Just dont stress yourself too much.

Hang in there, Jeff

[jeffreymb]

Well, I hope we are moving on the right track at least. I have contacted Dr. E and will see what his response is and whether we should move forward with surgery on the 14th. The pathology report is signed out on 6/18 and has just now reached my mailbox. I would have hoped that someone from IU would have contacted me before now if this was something that needed to be acted on right awa. Dr. E is not my primary doctor at IU because they don't believe that this is testicular cancer.

The other issue is that you don't get a very good sample from a fine needle aspiration biopsy since it is such a small specimen, so as the report says, the diagnosis is not definitive.

I don't think we can really say for sure the origin of the cancer yet. I will be interested to see how Dr. E responds and will keep you guys updated.

Jeff