Recurrence - Advice Needed

[David1969]

Not got a copy of the path yet, but my operation report described the original tumor as mied germ cell carcinoma with a high percentage of embryonal cell carincoma, a focus of yolk sac and also seminal.

[dannysbrother]

Hi David,

I am sorry you are dealing with this. If it is at at humanly possible, forget completely that you were ever told a percentage of any kind. They mean nothing. Believe me.

My brother is currently being treated at Sloan by Dr. Bosl, one of the two 'Germ Cell Superstars' in the country. (the other being Einhorn in Indiana)

Dr. Bosl's office number is 212-639-8473.
His nurse coordinator is Anna. She will help you set up an appointment. Describe the situation and the urgency. If it is difficult to get an appointment very soon, ask about seeing Dr. Motzer. He is another big name doctor.

Regardless of what is protocol, I have always contacted doctors directly, without the referal of Danny's treating doctor. When Danny was taken as a patient of Dr. Bosl it was done independently. However, I recommend that you alert your treating oncologist that you will be seeking a second opinion and ask if he would be willing to discuss your case with another doctor at Sloan/Dana Farber/ect. I can't imagine any doctor every saying no. Danny's doctor back home in Phoenix spoke to Dr. Bosl. I'm sure that Dr. Bosl or any other expert would find it helpful to speak to your oncologist. In the meantime, definitely get your records together asap. The records department at your hospital can fax these things directly to any other hospital.

I can tell you that Sloan and most any institution will require:

CAN BE FAXED:
pathology reports
radiology reports
recent blood work
last doctor's notes

TAKEN IN HAND:
most recent CT/PET scans (we got ours on CD)
pathology slides

I hope you are able to make strides in the right direction soon,
Mikey

[Savin16]

David, I am so sorry for you having to deal with this again. Not sure where your currently being treated, but we aren't to far away from eachother, and there really isn't a specialist around here as good as Sloan or Dana F. My brother didn't go to Sloan like I wanted him too, but if you can't get there, (which I hope you can) get everything sent to one of the specialists, and get their take on things, that's what we did, not until after the RPLND though. If we did that in the beginning, my brother would have had the RPLND first, (since he showed enlarged lymph nodes) then chemo, instead he had 4 rds. BEP, RPLND, then Chemo. Please post as soon as you know something, we will all be waiting.

[Already Bald]

You can test the waters by asking your doc to consult with an expert over the phone. Hope your doc is open to 2nd opinions (the good ones are). This call can even be made in your presense and can be done pretty quickly.

Be your own best advocate. Press for action and answers.

Best to you,
-chris

Chris, you may not know this, but you are my hero- you and Dadmo that is. You doing the century after all your history- Amazing.

David, when I wanted a second- and then a third opinion, I just simply told my docs that that was what I wanted. They all supported me, and helped me get the appointments. The good ones all talk to each other anyway. My insurance company is BC/BS, and they were real easy to deal with. Just talk to them.
Best,

[Russell's Mom]

From my nurse hat and mother hat...the oncologists that I work with say that when it comes to cancer, "you can never get too many eyes looking!" Don't be bashful about calling!! Sharon

[Scott]

Just to summarize the posts here: we don't know yet whether this a recurrence, but consulting with a testicular cancer center of expertise is a good move. Hang in there, David; we're with you.

[Karen]

David,
Any luck on obtaining copies of the path, CT and markers? Keep moving forward on this...if it is a recurrance you want to act quickly.

[Fish]

David:

Sorry to hear you might be dealing with a recurrence. I really can't add to the great advice you've already gotten. Definitely move quickly on this and don't listen to doctors when they quote statistics!

Best wishes.

[David1969]

Thanks everybody for the kind thoughts and support. I hope to get my latest bllod works results today or tomorrow, and should get a copy of the path report with this.

I have spoken to another local oncologist (who is a fellow of Dana Farber) and I am hoping to get a formal second opinion from him, before deciding what my next step will be.

Thanks Again.
Dave

[Margaret]

You sound like you are on the right path! Once you get your test results back and you get a second opinion, you will be on your way to knocking this thing out once and for all!

[Fed]

David,
Let me know if there's any way I can help at Dana-Farber. Their GU team is fantastic. My doc (Robert Ross) sees several others in the Forum, and Phil Kantoff, the guy that runs the GU service, is one of the leading experts in the field. You will be in great hands here.

[David1969]

Still not got my path report yet. But mt blood works showed my tumor markers to be normal AFP 2.0 and the other 5<.

[Scott]

Glad to hear tumor markers are normal. That's a good thing.

[David1969]

Set an appointment up for a second opinion, but have to wait for a couple of weeks.

In the meantime my oncologist has set me an appointment up to try and get the growth biopsed, on the basis he eblieves there is a good chance it is Teratoma left over from my chemo and my tumor Markers are not elevated.