Two questions..

[LeeDH]

Hi,

My chemotheraphy already began but I have two questions and couldn't get understanding answer from the hospital and there are not many experts in my country to go. So please help me as much as you know..

1. At first CT showed that my abdominal lymph node is somewhat enlarged and doctor said it could be metastasis of the tumor. After I/O, there was 2nd CT scan again it still looks enlarged. But after that, PET-CT shows all clear now. But doctor said enlarged abdominal lymph node by CT is suspicious so I'll get 4xBEP and they'll check whether it decreased or not by CT.
In this situation, should I worry about the enlarged thing although PET-CT showed no problem?
And I remember that I found out the word 'tumor emboli' on my phathology, what does it mean? is the enlarged thing 'tumor emboli'?

2. In the case of nonseminoma and stage1, after the orchiectomy, the treatment is different in US and Europe?
I read on internet that in Europe some patients take 1 or 2 cycles of BEP for 'preventive' therapy but in US they don't, and there are two ways : RPLND or Surveillance.
Frankly, I most prefer 1xBEP for preventive therapy of Europe but wonder that why it is not chosen in US although many studies say it cures nearly 98%.
Soon my first BEP is over and I'm really considering taking only 1xBEP like European do.
Would it be okay or not? It's so difficult problem for me and my family to make a decision and my parents never agree with me. Another problem is that my case(nonseminoma stage1) is very very rare whole my country.
So please give me some advices..

[AdrianB1971]

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How much are your nodes enlarged ?? They may be from some infection. If PET scan shows no active cancer and the markers are normal I think that may be a false alarm. 4xBEP is very much chemo with serios short term and long term side effects. Also RPLND is a major surgery. Only if there are enough rasons tot it..you must do it. It's up to you what path you'll choose. You can also choose a close observation of blood markers and regular cat/pet scans to see how is evolving the lymph nodes. If you'll see any clue of cancer growth then 3 x BEP is recomended [RPLND can be usless for nonseminoma - embryonal carcinoma especialy]. IT IS JUST MY PERSONAL OPINION ! DO NOT ACT BASED ON IT.

[Scott]

As Adrian asked, how large did that lymph node appear to be? Based on what you've posted, I can't imagine why you would need 4xBEP. What country are you in? I'd suggest asking your doctor to contact a testicular cancer center of expertise. See this TCRC page for some contacts.

[Margaret]

Scott...I am glad this question was asked because something has been bugging me for a week now.

Boyce and I went to the cancer center last week to take them some goodies and we met their newest TC case. A young man, maybe early 20's who was geting chemo. Of course we spent a long time speaking with him. He had the OT of course and one lymph node in his abdomen is enlarged, but only slightly...maybe 2-3 cm. I was stunned when he said he was on 4XBEP. I told Boyce as we left that although I am not a doctor, I thought that seemed like way too much chemo. That MORE is not always better. I guess it is still keeping me up at night.

M

[Scott]

A young man, maybe early 20's who was geting chemo. Of course we spent a long time speaking with him. He had the OT of course and one lymph node in his abdomen is enlarged, but only slightly...maybe 2-3 cm. I was stunned when he said he was on 4XBEP.

Maybe he also had very high tumor markers?

[LeeDH]

..

Thanks.. I'm in Korea and it is so hard to find out the experts in this field because TC is too much rare in Asia you know..(I've heard 1 : 0.2million in Korea)
And my doctor didn't explain how much it was enlaged so I'll ask it tomorrow, going to hospital for chemo.
In addition, before I/O my AFP was about 2500, HCG 500 and I heard it is getting lower and lower like normal person after I/O. I'll ask the present ones too tomorrow.

[Mom]

My son had one swollen lymph node that an MRI picked up, not the CT scan. He had the MRI done because there were a couple of spots on his liver and even though the doctor did not think they were TC related, he ordered an MRI of his abdominal lymph nodes, his liver and his brain. The liver spots were not anything of concern but the lymph node showed up. He did have vascular invasion and because his markers did not go down as expected, he ended up with 3 x BEP (except they stopped the last bleo shot because his PFT showed lung impairment). His markers went down during the second round of chemo. Your markers are higher than his but not by much. Perhaps you can find out what they are during your second round and if they are normal, he won't go the 4th round. I truly believe in fighting this disease aggressively. I am more concerned with "what could have been" then "what might happen" in the future. I agree with the others in saying that 4 x BEP sounds excessive; however. Also, you should have had a pulmonary function test (PFT) before you started chemo as a base line. Hang in there, you will get through it. Dianne

[AdrianB1971]

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I meet a young TC patient [25 old] with stage I nonseminoma and normal markers. He was under 4xBEP!!!! This kind of doctors should be killed !!!
I told him that close surveillance or 1 or 2xBEP adjuvant chemo it's enough to ensure over 90% cure rate.
...what should I say ?? It's sad

[spinsta]

My experience

I had a case fairly similar to yours - I also had nonseminoma with an enlarged lymph node (2.7 cm) - I did 4xEP and then the RPLND. I guess if it appears to have spread to the lymph nodes, they don't take any risks - keep in mind that CT scans are only 80% correct - that means 1 in 5 people with enlarged nodes appear to be clear on their CT scans. I know it seems like a lot of chemo, but I am glad I followed what Dr. Bosl at Memorial Sloan-Kettering in NYC recommended. JUST MY OPINION.

[LeeDH]

..

Thank you all very much.

Here is one of a few places I can get TC informations.

I envy you all in US..