Update from the RPLND versus chemo British bloke

[Stuham]

Dear all

A further update on my situation over here in cold and wet Europe. Since I last wrote I have been working my way through the UK health system to get an appoinment with an oncologist. This is now scheduled for Friday, and in the meantime I have been busy. I just received blood test results which show my AFP to have stablised within normal levels, meaning that for now I am a 'true' stage 1b and not a 1c. For this I am happy. I have also been in contact with my both the US doctor who saw me in DC and, just moments ago, Dr Joel Sheinfeld at Sloan Kettering who was kind enough to take five minutes to chat.

Basically, because of a degree of angiolymphatic invasion, if I was in the US I would be referred for an RPLND quicksharp. However, as I indicated previously, as I am in the UK this is not likely to be offered as as a first option for a stage 1b patient. Instead, it looks like I will be offered the chance of surveillance or two courses of chemotherapy. I am writing to gauge opinion - following discussion with the US doctors (and also through the very helpful people on this list) I am inclined to believe that chemotherapy might be (almost) ineffective at this point (because of the high amount of immature teratoma in my removed tumour (95%) anything left at this point is likely to include a high teratoma component - I hope I'm putting this right). If there is recurrence it seems that chemotherapy would rear its ugly head further down the line anyway, so is there any point in exposing myself to it before I know it is really necessary? What about going with surveillance and then going with the needed treatment if and when something recurrs? (Incidentally I am under no illusions about the possibility of this due to the angiolymphatic invasion. anyone have any stats on recurrence by the way?)

I guess the next step, however, is to speak with the English oncologist and then get another CT scan to double check the nodes. Any advice is appreciated on how I might proceed, and I'll keep you posted on how things pan out. Happy Christmas from Copenhagen where I'm currently working, and good luck to you all!

Stuart

https://www.walkingthestates.com

S/P: Right Radical Orchiectomy Nov 22, 2006
Assessment: Non-Seminoma germ cell tumour Clinical stage 1b
Histologic Type: Mixed germ cell tumour - Immature teratoma 95%/Yolk sac
tumour 5%
Primary tumour pT2, tumour limited to the testis and epididymis with
vascular/lymphatic invasion
Tumour size: 6cm in greatest dimension, Additional dimensions 4.5X4.0

[willgetoverit]

Hey,
If you were in the US, clearly, RPLND would have been what would have been most likely suggested by the docs.

Also, if I were you, and given your tumor composition, I would go with surveillance.

[Lori]

My husband had majority immature teratoma in his original pathology (with seminona and yolk sac). He was stage III so a different case then yours. He did chemo before surgery as his tumor markers didn't normalize after the orchiectomy. The tumors continued to grow during chemo and when surgerically removed were all immature teratoma. I would definitely get a second opinion from someone like Dr. Einhorn here in the states. If the nodes are teratoma then they are chemo resistent, but should still be removed for cure!

Good luck

[Mom]

I guess I thought that immature teratoma responded to chemo and it was mature teratoma that didn't so I am confused. Neither responds to chemo? If someone had EC and teratoma, had 3xBEP because of invasion and markers didn't go down, how long does teratoma lurk in the body before it presents itself? My son is almost two years post chemo, CT fine and markers fine. He doesn't have to go back to the doctors for six months and he is on one CT scan a year. When can I stop worrying? Dianne

[Scott]

I guess I thought that immature teratoma responded to chemo and it was mature teratoma that didn't so I am confused. Neither responds to chemo?

The way I understand it, immature teratoma is a cancerous growth and more likely to metastasize than mature teratoma, which is technically a benign growth that is unlikely to spread, though it sometimes still does. I believe that both types need to be removed surgically.

If someone had EC and teratoma, had 3xBEP because of invasion and markers didn't go down, how long does teratoma lurk in the body before it presents itself? My son is almost two years post chemo, CT fine and markers fine. He doesn't have to go back to the doctors for six months and he is on one CT scan a year. When can I stop worrying?

Aren't all mothers contractually obligated to worry for as long as they live. After two years, the odds are excellent your son is cured, and the schedule he is on should be fine.

[Lori]

Hi Mom, Scott is right in that immature teratoma is likely to metastasize while mature teratoma is not. If immature teratoma is starting to metastasize then it may respond to chemo. When it is still in its benign stage it will be chemo resistent just like mature teratoma. Both are the slowest growing of any of the TC types and should be removed surgically. Most importantly the CT Scans should be conducted to watch for growth. Like I said Jon had immature throughout his body and has a higher likelihood for that coming back then the actual true cancerous piece and he is still only going for CT Scans every 4 months in his first and second year. Then every 6 months and yearly. So sounds like your son is on the right schedule!

Dr Einhorn told us we had two time marks specific to Jon's cancer make-up - one year for the cancerous piece (if no reoccurence in that time then less than 1% chance it will come back) and 5 years for the immature teratoma. Again that is specific to Jon's make up.

Please don't let this add to your worries. Jon's case is very different from others due to the large amount of immature teratoma.

[Mom]

Thanks for clarifying the teratoma differences and confirming that Jeff is following the correct protocol. You are right, mothers never stop worrying, actually I get little panic attacks when I read those reports in the reference section of the forum. Then yesterday it was all over the news about new warnings on pain relievers. I keep wondering how many Tylenols my son took the morning after. If the alcohol doesn't get your liver, then the hangover treatment will and of course let us not forget all of that chemo S**t. However, it could be that car that runs the stop light. So the bottom line is I should be grateful that we are passing the 2 year threshold without a reoccurrence and stop worrying. Dianne

[Scott]

...and stop worrying.

"There is no use worrying about things over which you have no control, and if you have control, you can do something about them instead of worrying." -- Stanley C. Allyn

"Worry never robs tomorrow of its sorrow, it only saps today of its joy." -- Leo F. Buscaglia