Anyone from Oklahoma??

[lovesKev]

We have been seeing a urologist Dr Saint here and he's recommending an RPLND. He says he does most of the ones on this side of the state.. I was wondering if anyone from OK has been treated by him?

[dadmo]

loves:
I can't comment on Dr.Saint but I do have a question. Can you post the percentages of the cancer components in Kev tumor? The embryonal component of the tumor has a habit of skipping the lymph nodes and going directly to the lungs so removing the nodes may not be a cure. Were all of his scans clear?

[dadmo]

Loves:
I looked around a bit and the only one who listed OK as a home state is lynjames from Edmond. You can search on her post but I don't believe she ever visited with Dr. Saint. You can send her a private message but she doesn't check in much anymore.

[lovesKev]

40% yolk, 30% teratoma, 30% E.C.

I had read that about the E.C, but the doctor didn't mention it. He just said that teratomas don't respond to chemo and that if he relapsed later with observation his mortality rate would be higher. This upset me slightly bc it seemed he was saying observation wasn't an option and he didnt really say how much higher. I think Kev is wanting it as peace of mind really. He's the nervous type... also he didnt mention sperm banking. Which is something that I am really concerned about bc I dont have children. (Kev has an almost 2 year old)

and thanks for replying so quickly..

[lovesKev]

yes his CT scan of abdomen and chest were clear..

[Aegean]

Kev is Stage 1. Although suveillance could be an option, the chances of relapse are rather high due to the tumor mix. The doc is quite right about teratoma and chemo, but it can be surgically resected. Please note that there is a possibility of still needing chemo after RPLND, particularly if the nodes do not come out clean as EC is very agile in terms of traveling through the blood system. I would want to get a second opinion from a centre of excellence prior to proceeding. It may very well concur with original assessment, but then there would not be any hesitation.

[lovesKev]

thanks for the info..

should we be worried if our urologist hasn't referred us to an oncologist? or are we supposed to get one on our own? we have an HMO so we can't just pick someone..

and how would we get a second opinion from a TC center of excellence?

[Aegean]

You should definitely be seeing a medical oncologist as well. The uro is not conversant with chemo, and is not fully qualified to comment on it as on RPLND, though he certainly should be leading you to an oncologist. I am sending you a PM with some info.

[dadmo]

At this point a medical oncologist should be directing your treatment plan. I wouldn't make a move until a oncologist has been consulted with.

[dadmo]

What was the date of the IO. In general you have about 6 to begin any treatment. Has surveillance even been discussed? It's certainly an option at stage I. I'd hate to see Kev over treated. You did mention that he's the anxious type so agressive treatment might be what you both are more comnfortable with, that's important, just realize that the RPLND may not be a cure and if cancer is found in the lymph node he will need some chemo.

[gilly6993]

As the others have said, you need to see a medical oncologist to quarterback the treatment....

[TC Destroyer]

I just want to note about sperm banking. I would bank spern now.

RPLND has the chance of causing retrograde (semen goes into the bladder instead of going out). This won't cause infertillity as they can get it out of there, it just isn't fun. Not to mention that insurance policy of having some stored is always a comfort.

[soonerjon]

Hello loveskev,

I know this is a very tough time for both of you right now, but I hope you can find some peace of mind in the support and resources on this forum. I don't have any doctors in Tulsa to recommend, but if you are willing to make the drive to OKC I would highly suggest Dr. Aleda Toma of Cancer Specialists of Oklahoma. I found her and her entire staff to be both extremely knowledgeable and readily available at all times. She exactly followed the treatment plan set out by Dr. Einhorn from IU. I will say the one point she hammered home to me was that if I was going to have an RPLND, I needed to go to IU to have it done. I'm sure Dr. Saint is a fine Urologist, but if I was in your shoes I would contact Dr. Foster at IU. For a surgery this invasive I would want the guy who does this procedure all the time. Just my two cents. If you have any other questions feel free to message me.

Soonerjon

[TCdoc]

I echo everyone else in saying that you need to get an oncologist on board. In the UK and Europe the first line would be surveillance or adjunct chemo (especially if there was LVI). Chemo is usually first line to get rid of the EC and yolk sac which are faster spreading and more likely to hit the nodes and lungs. Teratoma can be removed surgically later should it arise.