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**Scott** · 03-07-07, 09:55 PM

Welcome, Bob. Do you have your pathology report? If there's embryonal carcinoma, not pure seminoma, then radiation therapy is the wrong treatment.

Have you had an abdominal CT scan and chest x-ray? Blood tests for tumor markers?

**Fed** · 03-08-07, 09:43 AM

Greetings Bob,

What Scott says is crucial: while seminoma is sensitive to radiation, embryonal carcinoma is not. When there is a mix of tumors, one must follow the non-seminoma treatment route. Radiation is indicated ONLY if you have pure seminoma without a gemisch of other cell types. Tumor markers and radiology should be able to fill in the blanks in your diagnosis for staging purposes.

As far as the I/O recovery is concerned, you should take it easy for the next few days, and don't do any heavy lifting. Each day should be better than the last. The soreness will go away within a few weeks, and, as your doc said, you will almost be at pre-I/O status after 6 weeks or so.

In the meantime, make sure you understand the appropriate course of treatment for your particular case. Check http://www.tcrc.acor.org/ for details on treatment courses. Best,

**Bob cp** · 03-08-07, 01:07 PM

Thanks

Scott,

Thanks for the info. The lab report does indicate embryonic carcinoma as well as the seminoma. Should I contact my urologist or mention what you and Fred said when I go see the oncologist next Wednesday? The oncologist has the lab results as well.

Maybe the urologist(who is on the American Board of Urology)only suggested the radiation because the report says everything was contained to the testicle.

On the other hand, some sort of almost testicular size lump now exists just above where the testicle used to be, and the doctor says that it a normal condition following the surgery related to blood flow. Although it is somewhat painful, like a 3 on a scale of 10.

I look forward to your post.

Bob

**Scott** · 03-08-07, 06:31 PM

Since your urologist's job is already complete, it's best to discuss treatment options from here with your oncologist, who I believe will know that radiation therapy isn't appropriate for non-seminoma.

The lump you're feeling now is almost certainly a hematoma, a collection of blood that will gradually shrink away to nothing over the next several weeks.

**dadmo** · 03-08-07, 06:52 PM

Just to add to what has already been said, radiation is not the proper treatment for a mixed tumor. You really need to see an oncologist who should know that and if he doesn't find another oncologist.

**Bob cp** · 03-09-07, 11:15 PM

lab update

Thanks to all for your info. In looking over the lab report one more time, I noticed it said there wer mixed germ cell tumors with 60% seminoma and 40% embryoma carcinoma. Also, it said someting about intratubular gem cell neoplasia. I am not sure what that is.

I will know more next week.

Bob

**dadmo** · 03-10-07, 04:19 AM

With that written on the lab report you can be assured that the oncologist know to use chemo if further treatment is even needed.

**cbuysse** · 03-10-07, 10:01 AM

If it were me I would get a new urologist. If he read that pathology report " mixed germ cell tumors with 60% seminoma and 40% embryoma carcinoma" and suggested radiation as a treatment course then he has no clue on the treatment of TC in my opinion. You said in your post that he referred you to an oncologist to start radiation treatments so I am curious did he refer you to a radiation oncologist or a general oncologist? You should be seeing a regular oncologist not a radiation oncologist.

**Karen** · 03-10-07, 10:19 AM

Once the urologists gets the rest of the staples out you are done with him. He is misinformed. You need and oncologist with experience in TC. Radiaition is NOT an option with your pathology. Spend a lot of time reading on the site Fed pointed you to...excellent information. Markers and CT are critical for the staging.

**Bob cp** · 03-10-07, 10:21 AM

He sent me to a general oncologist.

**Already Bald** · 03-10-07, 10:31 AM

For further treatment on mixed germ cell tumors, you MAY need an RPLND and chemo. Radiation will not help.
If your oncologist talks RPLND, it is important to go to an experienced urologist for that surgery. It is an intense procedure, however there are many on this site who have gone through it just fine.
In any event, I think it's critical for any cancer patient to get second, and even third opinions- and in a hurry.
Keep us posted,
Joe

**petep** · 03-12-07, 03:33 PM

OK - I'll heap on what has already been said -

I was shocked at how many people I met where I was treated (University of Miami, sylvester center - Dr. Benedetto, recommended by einhorn)....had been misdiagnosed and followed a poor treatment path before being sent to an expert in TC.

The stories were all the same - "he was recommended as a good oncologist...and I trusted what he said..."

after my surgery, but before I went to see einhorn and benedetto I had to check back into the local hospital for a fever - they thought I might have an infection...I met with the local hospital oncologist...I shared my pathology and what little I knew from reading over the prior week, I knew more than he did...he was talking radiation and I had 95% embryonal...it was just chit chat as I already was planning my flight to indy...but had I not known better...very scary.

My point is that you need to be your own advocate...do not worry about hurting someone's feelings etc. I told my oncologist and einhorn each, that I was getting a few opinions from experts...they all said no problem....but each wanted to read the slides themselves...

The treatment protocols and standards and follow up data are so well documented for testicular cancer it is far more science than art...this is really a great thing.

**Margaret** · 03-12-07, 03:50 PM

Bob, at the risk of beating a dead horse to death...I will also post and say that I think you have gotten some poor advice. And we only say that because we ALL care and we want you WELL ASAP!

Dealing with embryoic, radiation is not the best chance for a cure, and I know that a cure is possible for you! Also you happen to live in a great state, Indiana, where some of the best TC doctors are.

In response to the pain and lump where the testicle used to be...my husband's removed testicle was larger than the one he got to keep for about 2 months. He thought maybe the doctor put in an implant while he was under. But as some have posted, that is normal and it will go down over time. But my husband also found it surprising because he expected to wake up and feel nothing where the old testicle used to be. I hope the pain goes away soon, if not mention it again to your doctor.

Please get a second opinion and let us know how you are doing.

Margaret

**Bob cp** · 03-13-07, 11:35 AM

Thanks for the words of support. I visited my urologist yesterday and had the rest of the staples removed. What a relief! The hematoma is still there and it does not appear to have gone down yet. He said this is normal. Of course it is about the size of the remaining testicle.

With all the information each of you have given me, and with other research I have done, I will go into my oncologist appointment tomorrow (Wed.) with reams of information and questioning. The urologist said all the next steps are in the hands of the oncologist now--with ct scans, etc. I will know within five minutes whether I have an oncologist who knows his stuff on testicular cancer. And I have all of you to thank. God bless.

I will let you know what I find out.

Bob

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Lump first noticed: 11/2006 Went to see doctor: 1/2007 Final diagnosis: 2/22/2007 Right orch.: 2/26/2007 Lab report: 3/1/2007: seminoma 60% embryonic carcinoma: 40% mixed germ cell
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