Story of my brother

[Bruder Jakob]

Hello everybody.

First at all, I have to tell you I m coming from Slovenia (EUROPE) and I m not very good in English.

I have younger brother, who have a TC.


In January 2008 he had a orchidectomy of his left testis.

Histological results:
50 % seminoma
20 % YOLC-SAC
20 % teratoma
20 % EMBRYONAL CARCINOMA
----------------------------------

At ultrasound exam (at January 2008) of his abdomen they found enlarged lymph nodes in his left side of retroperitoneum. The biggest was aprox. 8 cm long.


After the orchidectomy, He passed trough 3 courses of BEP Chemo and 1 course only EP (without Bleo).
After third course of Chemo, they done US investigation again, and they noticed that lymph node were still there. The biggest one, was aprox. 6 cm long. After that they done CT Scan of his abdomen, and say that lymph nodes are positive and they have had to remove them.

After the 4 th course of Chemo, they told him, that he will must go to PC RPLND surgery.

In July 2008, he had a PC RPLND surgery.
Histological results:
- teratoma
------------------------------

In October 2008, he had a fisrt US exam, after the RPLND surgery. Radiologist noticed, that he had enlarged lymph nodes again on his left side of retroperitoneum. The biggest one is aprox. 3-4 cm long.

They put him on blood test for serum markers, and test was negative.

So they told him, that he will must have another RPLND surgery.

Now I have to ask some questions here:

- how is possible that lymph nodes grow so fast?
- how is possible that lymph nodes grow on same side of retroperitoneum?
- how is possible to have negative serum markers with no primary tumor, and so big lymph nodes only 3 months after the RPLND??
That means the lymph node growth was 1 cm per month in avarrage.
- did anybody of you guys, have two RPLND surgerys in so short time?

GLOSSARY: They = I mean Doctors
US = Ultra Sound


Have a nice day.

Thanks for all.


Bruder Jakob

[Already Bald]

Sir,
I am sorry to read of the problems your brother has/is facing.
Your English is fine- thanks for posting.

You have given us a lot of information, it is what you havn't written that leads to questions.

Has he has CT Scans?
Were his labs positive prior to the I/O?

A second RPLND is extremely rare- I have read about hundreds of primary RPLND'S, only 2 re-do's.

Is it possible to get to the USA for a second opinion?
Joe

[David1969]

Bruder,

I am one of the rare cases and I have had 2 RPLND's. My first was in December 2006 and the second in November 2007. As Joe said this is very rare and also my understanding is that a repeat procedure is a lot more difficult. It is recommended that if a repeat is needed a centre of excellence is used. I was lucky enought o get my second RPLND done by Dr. Foster at Indiana after the recommendation of Dr. Einhorn.

If you have any questions please feel free to contact me.

Dave

[dadmo]

Bruder:
The fact that you brother doesn't have markers may not mean much. Some forms of tc simply don't produce them. In your brothers case with nothing but teratoma in the original RPLND it's quite possible that that's what he has now. My very simple guess is that the doctors didn't get all of the affected nodes the first time. As much as it stinks he really does need the enlarged nodes removed. As others have said if a center of excellance would be the best be for this.

The attached list has some experts that arent all that far away from you.
http://tcrc.acor.org/experts.html#world

[David1969]

I had only very slightly elevated markers the first time around for the recurrence I had no increased markers at all.

[Bruder Jakob]

Thank you very much for yours quick replys.

David1969 I aware, that tumor markers isnt best indicator for recurrence of disease.

So my opinion is also, that they didn t done the surgery right.

We are afraid about second RPLND, because we dont trust our doctors anymore. And if you loose confidence into your doctor, then you are really in chess-mate position.

We will contact Mr. Prof Dr Wolfgang Höltl in Austria to arrange appointment with him. I hope he will help us.

David1969 is now everything OK with you?

You folks have greetings from my brother right now.
I m writting in his name because, he is worthless in English than me.


Best regards.

Bruder Jakob

[David1969]

Bruder,

I have sent you a reply to your private message. As I have said make sure you get the rightsurgeon before you even contemplate having the surgery again.

David

[Paul54]

Bruder Jakob:
Is your name Jakob? Or, is your brother's name Jakob?:)

Your English is very good. Please, do not apologize. Your brother is very fortunate that you are helping him to understand this terrible disease. We will pray for him. Please tell him we are very concerned about him.

I can not offer any advice since I did not have an RPLND. I believe your brother should meet with the experts, either in Austria or Germany.

Thank you for being a good bruder!

Paul

[Bruder Jakob]

Hello everyone,

My name isn´t Jakob, but my brother use to call me that way :)

Thanks for praying for him...

That words means a lot for me and my family...

I will never forget....

I ll keep you intouch...

Bye

[Bruder Jakob]

Hello folks,

I wish you a lot of luck and a lot of lough in year 2009.

I have wonderfull news about my brother.

He went on CT scan at December 2008. At the end of 2008 he got CT Scan results, and they told him, that he doesn't have had any enlarged lymph nodes in retroperithoneum seen on that CT scan.

Thank's God for that.

I wish to you all, to beat the desease.

Have a nice day, week, month, year, life......

Bruder Jakob

[Smartie]

That's great news, BJ. Congratulations to you and to your brother!

[Karen]

Wonderful news! Best wishes for a healthy happy new year for you and your family!