Diagnosis: Carcinoma of the Rete Testis

[LuisPerna]

Hi guys,

My name is Luis Perna, 35 years old and I am from Lisbon, Portugal

In the April I did a right orchiectomy and two weeks ago I received the final report from the Pathologist. It took a while because the Portuguese Pathologist was not sure about the result so he sent it to an American Pathologist and the diagnosis was carcinoma of the rete testis, size 8 millimetres.

The tumour was found in a testicles examination by change. I never had any pain or reason to think that I had a tumour.

From what I understood this type of cancer is very malignant and rare and information is not available. I went to a Portuguese Oncologist (consider one of the best) and he told me that he was going to research about it and then call me.

Meanwhile I did a body scan to look for metastasis and it came out negative.

I feel “lucky” because it was found in an early stage but at the same time there is no information for cases like mine and has you can guess I have a lot of question to be answered.

Please help me with any information you consider relevant and feel free to place questions.

Sincerely,

Luis

[Scott]

Hi, Luis. Most of what we talk about here assumes germ cell tumors, so it won't apply to carcinoma of the rete testis, which is, as you said, rare. What have you heard so far about plans for follow-up care?

[LuisPerna]

Hi Scott, thanks for your reply.
As soon as I have an answer from my doctor about follow-up care I will post it.

Luis

[Frank1969]

Hi Luis,

my name is Frank (41) and I´am living in Germany. In June 2009 I received
the same diagnosis than you (adenocarcinoma of the rete testis). Since
June last year I am searching for people with the same disease but until
now I didn`t find anyone. You´re the first !!
My disease started with an painful epididymitis on right side. After some antibiotics
I felt better but my oncologist found a small knob on ultrasound and sent me to
hospital immediately. An orchidectomie was the recommended treatment and they
did it at the beginning of July last year. The pathologic findings were unclear because
they never saw something like that. They assumed an adenocarcinoma of the rete testis
and sent my pathologic samples to university hospital berlin and leipzig. They also
never saw something like that and also assumed the diagnosis mentioned above.
As further treatment a CT was done to perclude a metastasis diseases. Thanks god
because they found nothing. To be sure that there is really no further metastasis
disease, they additional recommended me an retroperitoneale lymphadenectomie (RLA).
I also did this and they also found nothing. Since this time I`m going to follow ups each
3 months. (next tomorrow). Follow up consist of ultrasound, blood anylsis and 1 CT/year.
Up to now everything ist OK and I`ll hope for the future....
Best regards to Lisboa and I would be happy about your answer
Frank

Originally Posted by LuisPerna

Hi guys,

My name is Luis Perna, 35 years old and I am from Lisbon, Portugal

In the April I did a right orchiectomy and two weeks ago I received the final report from the Pathologist. It took a while because the Portuguese Pathologist was not sure about the result so he sent it to an American Pathologist and the diagnosis was carcinoma of the rete testis, size 8 millimetres.

The tumour was found in a testicles examination by change. I never had any pain or reason to think that I had a tumour.

From what I understood this type of cancer is very malignant and rare and information is not available. I went to a Portuguese Oncologist (consider one of the best) and he told me that he was going to research about it and then call me.

Meanwhile I did a body scan to look for metastasis and it came out negative.

I feel “lucky” because it was found in an early stage but at the same time there is no information for cases like mine and has you can guess I have a lot of question to be answered.

Please help me with any information you consider relevant and feel free to place questions.

Sincerely,

Luis