new and worried

[Eric_Z]

Its been a strange turn of events, starting with abdominal pain. A couple of visits to the emergency room led to a CT scan. The doc saw an abdominal mass. From there I was scheduled for a biopsy for the mass. I waited and worried for a day and a half to get the results. Then the doc says I have seminoma. I dont know what stage this is in, but I do believe it was caught early. Thats about where I'm at with the whole thing. I am seeing an onocologist tomorrow morning at 10:00. We are just taking this one day at a time. Any suggestions or experiences that others have been through would be helpful and encouraging to me. Thanks

[Paul54]

Hi, Eric. We are so sorry you have to go through this, but you are welcome here. Hopefully we can help you navigate the complexities. We know this can be overwhelming.

Is the abdominal tumor the origin, or was a tumor found in one of your testicals? If the abdominal was the origin, then this is called an extra-gonadal germ cell tumor. These are as treatable as if they resulted from spread fron a testical tumor. The oncologist will probably recommend chemo or possibly radiation. It is usually very wise to get a second opinion, preferably from a center of excellence such as Indiana University, Sloane Kettering, Dana-Farber, etc.

Were blood tests done to check for tumor markers, i.e., chemicals released by some of the types of TC cancers? What were the results?

Get copies of all reports for future reference. It's a pretty good idea to bring someone with you to all appointments and take lots of notes to make sure you catch ever speck of info. Ask lots of questions.

Some of our members here have had extra-gonadal seminomas and hopefully they will be along shortly with additional advice.

Best of luck. You will be in our prayers.
PAul

[Eric_Z]

actually the ultrasound I had came back normal, but I do have swelling in the right testicle. The docs havent informed me of much, mainly because I didnt know the questions to ask. Thanks for your reply.

[Already Bald]

Hi Eric,
Good luck tomorrow.
Based on what you've written, I would suggest you seek a second opinion at a center of excellence. (Actually, regardless of what you have written, a second opinion is always a good idea when dealing with cancer.).
Best,
Joe

[Karen]

Eric,
Welcome. This site http://tcrc.acor.org/ will help a lot with terms as well as questions to ask. You should have had blood markers (LDH, beta-HCG and AFP) done, as well as an abdomibnal and pelvic CT scan, and a chext X-rayor CT scan. If the tumor was biopsied you should have the final patholgy report. Always a good idea to get copies of all labs and scan reports. It is very important that your doc communicates with you and gives a very clear picture of what you are dealing with. That is his job, regardless of whether you can come up with all the right questions.

Good luck with your appointment tomorrow. If you can post your results we can guide you more.

[MRMRSU]

Best of luck tomorrow, Eric. I see you've already received some great advice and we're hoping that you can keep us posted so we can be of further help. I would highly encourage you to bring someone with you to your appointments. It all comes at you so fast, that sometimes it's hard to concentrate and focus. Having another set of ears will really be helpful.

[Eric_Z]

I have seen a family doc and the surgeon, and I have had the abdominal/pelvic exam. Ive also had the ultrasound. But does any one think the docs are wrong or I just need to be more aggressive in getting copies of all my tests? The other question is does any one know a good cancer center her in western NC? Thanks to all replies so far.

[Paul54]

Eric,
TC, especially extragonadal, is so rare that family doctors and even urologists see few cases in their lifetime. I hesitate saying they might be wrong, but they may need to do their homework, and doctors being human don't always communicate as well as they should. The oncologist should have more experience. Be your own advocate. You have the right to get copies of all records.

Check this link for experts in NC and TN as well as the major centers. http://www.acor.org/TCRC/experts.html

Good luck today.

[Karen]

You must be your own advocate. As Paul stated, TC is rare and extragonaldal is rarer. Some docs go their entire career without ever seeing a case of TC. If you get copies of everythign and post summaries here we can help guide you. The collective experience of the members on this site is huge.

[jonwil]

Hi Eric. Good luck for today. Others have pointed you in the direction of questions to ask, but given on my experience in the UK, you may need to push for answers. Far too often, the initial response has been that "things are OK" which is meaningless. This was particularly true of blood test results.

Jon

[dadmo]

Eric:
Extragonadal tc is extramly rare but still highly curable with the proper treatment. I have to jump on the band wagon here and recommend that you at least send copies of your information to a center of excellance. You can suggest this to your doctor, the good ones won't be insulted.

[Fed]

If you indeed have extragonadal retroperitoneal seminoma, you are still considered to be in the "good risk" group, and the likely treatment will be either 3xBEP or 4xEP. Also, as others have stated, due to the rarity of this type of germ cell tumor, you might want to consult with a center of excellence, maybe even drop an e-mail to Larry Einhorn at Indiana once you have all of your scans and reports. All of these consultations are expedited if you have all of your results and reports on hand.

Fed

[Eric_Z]

Today I got copies of all my test results from the oncologist office. The doc said the treatment would be BEP and I dont understand what that means but I do know it is chemotherapy. He said we could possibly try it without one of the drugs. It would be one drug for two weeks and then a 5 day stay in the hospital for three drugs at once. Lots of test and monitoring. Does any of this make since? Thanks to all of the replies so far it has been a huge help to me.

[Karen]

Eric,
Please post the summary off the final path report, the CT scan, and the tumor marker values bloodwork. We can make more sense of this if we have more details.

[Smartie]

Try this link for good info about BEP (Bleomycin, Etoposide CisPlatin), and about EP.

http://www.acor.org/TCRC/chemo.html

[Eric_Z]

RESULT: Lung bases clear. Liver, gallbladder clear and adrenal glands normal. Spleen normal with adjacent splenule. Kidneys normal. Suggestion of minimal circumferential thickening of the bladder wall may be due to incomplete distention. Mild stool retention. Appendix normal. Mild nodularity of the seminal vesicles. 6.6 cm long x 4.6 cm AP x 4.8 cm transverse mass in the anterior aortocaval region which displaces the third portion of the duodenum anterior and the pancreas head superior. 2.4 cm similar mass posterior to the pancreas head. 1.5 cm mass anterior tho the right psoas muscle, image #47 for which a necrotic lymph node cannot be excluded with mild surrounding stranding suggested

IMPRESSION: Retroperitoneal masses, as above. The differential includes, but is not limited to lymphoma.

FINAL PATHOLOGIC RESULTS

1. Retroperitoneal lymph node #1; Necrotic nodule with surrounding histocytes, chronic inflammation, and fibrosis, see comment

2. Retroperitoneal lymph node #2; Metastatic seminoma extensively replacing lymph node, cocider testicular primary site most likely.

COMMENT:
Speciman 1 shows a necrotic nodule with surrounding fibrosis, chronic inflammation and histiocytes. The nodule appears to be within fibroidipose tissue and I would consider the possibility of a nodule of fat necrosis. No recognizable neoplastic cells are identified, but cannot completely exclude the possibility of necrotic neoplasm.

Does this make any more since to any one. By the way the doc ordered MRI of brain and PET scan. He also told me that chemo was the way to go with this. HELP!

[Fed]

It does, indeed, look like a primary retroperitoneal seminoma. The necrotic tissue probably arises from "burnt out" cancer that was unable to build a blood supply to feed. The pathology report shows definitive evidence of active cancer, so the correct approach, as noted by your doc, is chemotherapy for good risk disease (3xBEP or 4xEP) pending the results of the brain MRI and PET scan. Have you gotten a chest CT to complement this (my guess is the PET will cover the chest, too)?

It sucks that the pathology confirmed what you probably didn't want to hear; however, you should know that your case is still quite curable (otherwise, they wouldn't call it "good risk"). Hang strong, and keep firing questions as they arise. We're here for you every step of the way.

Fed

[Scott]

Sounds as though you have a pretty big tumor in your abdomen. Chemotherapy is unquestionably the right treatment.

[MRMRSU]

Hey Eric..you will get through the chemo and you will beat this thing!

[Eric_Z]

Is it normal or standard procedure to have a hearing test, PFT, brain MRI and a PET scan before starting chemo. My insurance denied the PET scan, are there any other options in getting this done by another method. All this is delaying treatment and I'm a little worried.

[Fed]

In your case, the PET is necessary. A PET scan measures metabolic activity in the body, and it can easily pinpoint if certain masses are active seminoma. PET scans are inconclusive in cases of non-seminoma, but for seminoma they are more clear-cut. You should try to get that one done.

The brain MRI is to check whether there are brain mets. Given that your primary tumor is retroperitoneal, it is necessary to cover all bases. Extragonadal germ cell tumors are very unpredictable, hence the need for extensive testing.

The hearing test and the PFT are standard pre-chemo tests. They are needed to get a baseline read on your basic hearing and pulmonary functions. Cisplatin can cause hearing loss and bleomycin can cause pulmonary toxicity.

[Scott]

I'm actually not sure why the PET scan is necessary. Would the results change treatment? You already know you have cancer that requires chemotherapy, so why not get started?

[Fed]

I'm actually not sure why the PET scan is necessary. Would the results change treatment?

It is necessary to determine extent of disease (one of the biopsy masses showed necrotic tissue, so it would help to know what around there is active cancer). It will also help determine whether 3xBEP or 4xBEP should be done. Chemo is a given; it's a matter of figuring out how much. Besides, EGGCTs are very unpredictable, so mets don't usually follow the typical pattern of spread.

[Eric_Z]

The PET scan was declined so today I am having a CT scan of the chest with and without contrast and I am having a nuclear bone scan. Will these test give the same results or is it a process to get the insurance to cover the PET scan? Thanks for all the answers and replies, this forum has been one of the biggest supports I have...THANKS SO MUCH.

[Scott]

I believe you'll get sufficient information from the tests you're having to know whether 3xBEP or 4xBEP is required.

[Fed]

I would think that a bone scan won't be as much help because the bones are one of the last places mets go. The chest CT will certainly help, and I am assuming you will still get the brain MRI, right?

[Eric_Z]

yes I have already completed the brain MRI, bone scan, chest CT and PFT and I go back to the oncologist next Tuesday and he should have all of the results from the test.

[Karen]

Well, you seem sufficiently scanned...now focus on the treatment and keep your mind on the cure! Good luck next Tuesday and please keep us posted.

[Eric_Z]

I'm back from my second visit to the oncologist, all of the test looked normal, tumor markers are good. The doc says the cancer has not spread. I will start 3xBEP on Monday 12-1. I will report to the hospital that morning and stay for five days. So everything looks good so far. Now its time to prepare for chemo and hope the side effects are not to bad for me. I want to thank everyone here for replies and support (the doc and PA did comment on how I was very educated on my cancer) It has made me so much more comfortable going into this.

[Fed]

I am stoked to hear that there is no evidence of spread and that you are set to begin the fight in earnest. One of the advantages of doing chemo inpatient is that you will have ready access to nurses and docs. You have also done a great job of getting informed; this arms you well and it helps you deal with what to others might seem the unexpected. Have a great holiday. We're here for you every step of the way.

Fed

[dadmo]

Eric:
Congratulations on the wonderful job you've done being your own advocate. I have no doubt you're going to kick cancers butt. Good luck next week and please keep us posted.

[Cricketer]

Hi Eric

All the best with the chemo. It isn't the most pleasant experience but it is a means to an end. Remember, all the side effects will pass and it will be over before you know it. Drink plenty of fluids, take your meds and stock up on DVD's

Best Wishes
Mike

[Scott]

I will start 3xBEP on Monday 12-1.

The best news is that you have a plan of attack -- and that plan is going to work.

[Eric_Z]

I will start chemo soon. It is a little after midnight and I have to be at the hospital at 8:15. I am really nervous. I dont know what to expect. I am doing my chemo inpatient, so is it normal to have more test done when I arrive at the hospital before I start with the actual chemo? They told me on the phone that I will need more test before I can begin. I dont think I can post for a while. I dont have a laptop to take with me to the hospital. So when I get home I will fill everyone in on how it was for me. Thanks to all of the replies and support so far. I will be back Friday 12-5.

[Margaret]

Thinking of you...starting the fight is half the battle, you will do awesome!

[Smartie]

Eric - you may not read this until after your first week of chemo. My advice is to rest up for a day or two after you return from hospital - and then do as much as you feel able. Your immunity will be low around day 10-15 or so so avoid crowds at this time (you may feel a bit grim at this time, too).

Many guys say chemo is not as bad as they imagined - at times you'll feel wiped out, but at other times you'll feel pretty normal. Take it as it comes and it'll soon be over.

All the best!

[LBu]

Hi Eric
Wishing you well
Karen.

[Eric_Z]

I would have gone insain without this laptop I just got for the occasion. I am doing well so far. As long as this doesnt get worse its a peice of cake. So far I have had two treatments of Etopaside and Cisplatin and one treatment of bleo. I will get bleo on my off weeks, once a week. Well thanks for the support this forum is a blessing. I will post again soon.

[Eric_Z]

WOW the chemo hit me yesterday like a ton of bricks. I'll put it this way I got lots of sleep. Does this very tired feeling get alot worse as time goes on. Tomorrow is Friday and my last day of round 1 in the hospital. I never thought I could even feel this tired.

[Fed]

Chemo, unfortunately, is cumulative. Just make sure you eat and get lots of rest.

[Manny]

WOW the chemo hit me yesterday like a ton of bricks. I'll put it this way I got lots of sleep. Does this very tired feeling get alot worse as time goes on. Tomorrow is Friday and my last day of round 1 in the hospital. I never thought I could even feel this tired.

I found I got very tired on the Friday of every chemo session and would be drowsy / tired through the weekend. And was okay by Monday. My last cycle (I had 4XEP), I got wiped out on Thursday and was very tired for the next 10 - 12 days. But okay after that.

[Eric_Z]

my doc seems it will be best for me to stay the extra day. Even though I am done this week, he is worried about post poned nausia. Does anyone have the stats again in the cure rate for this EGGCT?

[Smartie]

It always feels good to get home after a week of chemo. I used to feel a bit grim for about two days after chemo, and then back to normal after that. I'd also feel pretty wiped out around day 11-14 or so. I'd feel back to normal for about a week before the next cycle started.

Good luck with the rest of it. It goes quite quickly once you're into it. Soon you'll be half way through.

[dmann999]

Eric, joe my son just finished his first week also and he sounds very much like you. Little nausea here and there but mostly TIRED.... Little grumpy too. BUT VERY TIRED.

He is doing his outpatient. He prefers to be home each night. Let's keep in touch. We are all here for you.... Dawn

[Eric_Z]

Just as finished my first round of 3xBEP I got a bad virus. I couldnt hold any fluids at all. I am in the hospital now but am going back home tomorrow. I start round 2 on the 22nd. I was thinking that the sickness was effects of chemo until my doc told me I caught a virus. I was absolutely miserable. I thought I was going to die, it just felt that bad to be so dehydrated. I dont feel 100 percent but I think this now is what chemo feels like to me. Tired, a little dizzy headed, and cranky. But I have my sanity and my fluids in my body now. So thats where I am at with treatment for now and hopefuly the rest is uneventful. Thanks for reading and responding, it gives me some hope of the future.

[Fed]

Ah, dude, that's rough. It's very unfortunate that you ended up with a stomach virus. Now that you've reached the end of your first week, though, the tiredness will be kicking in. Make sure you keep taking all of your meds as indicated so as to mitigate any side effects. Try to get as much rest as you can.

[...] it gives me some hope of the future.

And a bright one it will be . Hang strong, Bro.

Fed

[Eric_Z]

ALL CLEAR !!!!!! I even got to skip the last two rounds of bleo. I'm not going to lie , its been hell for me. But I'm cured so it was worth it. I still feel really bad now and I'm wondering how long it will take to get back to normal?

[boyce]

Awesome! Fantastic!! Wonderful!!!

Next beer's on me!

[ally30736]

I completely missed this thread when you were going through treatment. Congrats on your good news!!!

Ally

[dadmo]

Gotta love the sound of "All Clear". Congratulations.