I went to hospital.. and today too.

[LeeDH]

Hi, this is my second posting here.

My Bleo shot was one day delayed by the mistake of hospital but they said it's ok.. Originally it was scheduled on Tuesday but I should've go there again on Wednesday.. Could I be relieved inspite of one day delay?

I asked doctor about my blood markers and how much my limph node is enlarged as I wrote in my first thread.
The lastest marker test was after 10 days from I/O(07/20/07).
AFP : 2600 -> 360
HCG : 550 -> 8
I wanted to check it again on that day but she said I can around next week.
And I was told that my lymph node is about 1.2cm enlarged and it doesn't look caused by metastasis or so.. but other reason.

I guess the markers became normal now thinking of the decreasing speed of them. Of course I'll take a test again as soon as possible to verify it.
The most worrying thing is the enlarged lymph node(I saw 'lymphovascular tumor emboli' on my pathology but I don't know what it means but looks relevent with the enlargement) but PET-CT showed all clear.. Does there any problem apear left yet? Additionally I'd like to take a CT scan again to check if its size changed to be sure.
In this situation could I feel relief? Doctors here tend to recommend 4xBEP for a preventive therapy. The most famous urology doctor in Korea said that he has seen 3 cases of nonseminoma stage1 until now and did 4xBEP and all of them were cured.

I've done 1xBEP and I hope surveillance now so go to consult a doctor today.
I think 4xBEP is not good for me by considering how people do in US or Europe now. The biggest problem is that there looks few experts in Korea.. It looks that they follow the outdated way which seems done in US 1 or 2 decades ago.
And my parents strongly insist that I should follow Korean doctors.
It looks some mess now..

[Scott]

Doctors here tend to recommend 4xBEP for a preventive therapy. The most famous urology doctor in Korea said that he has seen 3 cases of nonseminoma stage1 until now and did 4xBEP and all of them are cured.

The thing is: they may well have been cured before they started chemotherapy.

[LeeDH]

..

Thank you Scott for your quick reply and I think you pointed it out well..
Soon I'll leave for hospital(it takes 2hours.. the biggest hospital in southern area of Korea but few TC patients there either) and tell doctor I hope surveillance. The most difficult thing is to persuade my parents.

[petep]

all of the protocol standards are on this site...

but as scott wrote, if you have the IO, and the markers are normal, and clear scans...there are basically 3 choices here...

- rplnd
- 2xBEP
-surveillance

I believe the stats are 70-80% of the time, if the above is the case, you may already be cured...thus why some choose surveillance.

if a recurrence, and if markers are up, and you show an enlarged node (not in the lungs)...it's usually BEP or RPLND...with embryonal, sometimes many will suggest 3xBEP...just because some times embryonal will go right to the lungs via the vascular system.

but 4xBEP is reserved for the higher risk cases...high markers, extensive mets...

the best advice would be to have docs there consult with a tc expert listed on this site....because most of us here have real experience with TC...but are not the real experts.

keep us all posted.

pete

[LeeDH]

..

Thank you Pete

I also hope doctors here contact the TC experts on the list.. But I can't be sure they can speak in English and make a overseas phone call or so for me.. I'm sorry that the right of patients is hardly much here in Korea and most of doctors here don't pay attention to patients as much as in other countries. So I have tried to get informations of other countries through internet..

I saw a doctor some hours ago, I said there is no 4xBEP for a preventive therapy in other countries to her, and she said "Who said so? An urology doctor? It(4xBEP) is written on the textbook all over the world and it's the standard treatment. I strongly recommend you take 4 or 3xBEP wherever you go. The lymph node is enlarged and we will check it after 3xBEP. You'll enter hospital next week." That was all and I went out of the room.

And my mother is very very angry now because of my not consenting.

I'd like to go to European or American hospital to see TC experts but it's just my dream. The most suitable way to choose now for me is to follow the treatment of US or Europe - in the concrete, 1 or 2xBEP, I prefer 1xBEP - I think.
Like most of people here agree, Korea is so hard place to live..
Somewhat gloomy now T.T ;;

[petep]

Lee -

OK - well, you may not feel you are in the best situation...but to offer some thoughts...because I do not think you are that bad off...

when I saw einhorn for a consult before my recurrence, I was told that if BEP was used as a preventative measure, it was 2xBEP....though he mentioned they were "trialing" 1xBEP...the results were very preliminary, so I would probably err towards 2 x BEP if this is simply preventative, post orch.

if the BEP is due to the recurrence (enlarged node) and you are a good risk...it would be 3xBEP....that is what I had to have.

but all that to say...the good news is that you are getting treated with the gold standard, markers are way down, are in a good risk category and will be cured with BEP....so as best you can focus on this positive aspect....

one helpful aspect of TC, is the treatment protocols are very standardized, compared to many other cancers.


Even if they do not speak english well, you can certainly print out the guidelines from the internet and that may have some influence if they are not very familiar with TC...but an email note to the experts would be best.

[Scott]

I saw a doctor some hours ago, I said there is no 4xBEP for a preventive therapy in other countries to her, and she said "Who said so? An urology doctor? It(4xBEP) is written on the textbook all over the world and it's the standard treatment.... The lymph node is enlarged...

One quick note: if you knew that there was cancer in that lymph node, surveillance would not be an option.

Regarding standard treatment options, I'd suggest the National Comprehensive Cancer Network guidelines as a reference. It should help clear things up.

[LeeDH]

..

Thank you very much Pete and Scott..

You all really helped me and I'm so cheered up.

The enlarged lymph node didn't look to change its size by 2 weeks term CTs and it's all clear by PET-CT. Every enlarged lymph node doesn't mean metastasis, does it? I heard that we can check it is so or not by other ways - CTs, PET-CT or so. I don't know why the reason doctors here insist doing 3xBEP in this situation. In case it's not cancer, 3xBEP for what? In fact most of them saw TC at first time and looked not to know well even what TC is.

Additionally, in Korea it's patients who undertake every resposibility of medical accidents all the time. Doctors never do it. So we must take care of it ourselves before something bad happens.

And I can contact TC experts online by e-mail? That's great news for me.. I'll find the addresses now..

Anyway I continue to find the best way for me and post here again later..

[LeeDH]

..

Scott, I downloaded the National Comprehensive Cancer Network guidelines now and am reading it and it's so wonderful data I think! I couldn't find something like it out by oneself. Thank you very much!