Teratoma after RPLND followed by chemo

[Russell's Mom]

Thanks for the update David...good luck! This is not an easy road!!! I can't help but feel that Monday will help you understand and feel better!! Take care, Sharon

[Fed]

I have requested an appointment at Dana Farber, so hopefully I will get something organized on monday. I will keep you all informed what is happening.

Great move. Like I said, you should try to see Kantoff; but if that doesn't work out, my doc (Robert Ross) is also great.

[David1969]

Thanks for everyones help on this. I have requested an appointment at Dana Farber, so hopefully I will get something organized on monday. I will keep you all informed what is happening.

Thanks Again, Dave

[Fed]

Thanks, since my oncology department failed to take the correct blood works today and I need to go back, I am losing confidence quickly in them. I am certainly going to contact Dana Farber to see if they have any advice.

If you can, you should try to contact Phil Kantoff. He's the chief of the GU clinic at DFCI (my doc's boss). He's one of the contributors to the NCCN protocols, so with him, you'll be in good hands. If you do come to Boston, let me know, and I will do my best to help you out (it is, after all, my neck of the woods).

[dadmo]

Dana Farber Cancer Institute (DFCI) is a great choice.

[David1969]

Thanks, since my oncology department failed to take the correct blood works today and I need to go back, I am losing confidence quickly in them. I am certainly going to contact Dana Farber to see if they have any advice.

[Russell's Mom]

Hi David, I wanted to get back to you...had to leave for work earlier. Russell had Teratoma. The concern with Teratoma is that they can become problematic after chemotherapy. They begin as non-cancerous tumors and as I understand, the Testicular Cancer seems to wrap around them. As the chemotherapy kills the TC, the teratoma can become irritated. At that point, they have the potential to grow different kinds of cancer. I am not an expert, but I do know that cutting into cancer is done very carefully in order to avoid spread of that cancer. I would think that the doctors would want to remove completely rather than do a biopsy. Again, I am not an expert, but would stongly advise that you check with an expert before any further treatments. The information about this was shared by the doctors at UCSF, not the primary oncologist that we saw initially. This is not to say that they can't be dealt with!!!!! It is a lot of information...it really scared me when I first learned about what was going on!! Russell is doing very well!!! Livestrong, Sharon

[Russell's Mom]

Hi David, I just read through your posts and have to agree about the second opinion. In my eyes it will not hurt to start making calls ahead of you biopsy results. The people that you talk with will understand your circumstance and hopefully you can get some of the foot work done early. The biopsy should not be difficult, but just dealing with a treatment deserves some rest. In fact, if other doctors do become involved, they may want to see a different test than what the doctors plan to do. I would check with Sloan first to see if a biopsy is your next best step. It is ok to be assertive!! Keep in touch, Sharon

[dadmo]

I'm going to jump on the band wagon here and recommend that your second opinion be done at a center of excellance. Sloan or Dana Farber.

[David1969]

I was planning on speaking to Sloan, once I knew what I was facing after my Biopsy next week.

[Already Bald]

David,
I concur with Karen. It is best to get a second opinion at another facility, and with our disease, a center of excellence.
Best to you,

[Karen]

David,
Just my 2 cents here, , but when docs are colleagues from the same hospital or group they will usually not contradict each other, so your second opinion may be a second doctor reiterating what the first one said to be collegial. I suggest you go outside that group with a consult at DFCI or Sloan for an unbiased second opinion.

[David1969]

I had the RPLND done by Dr. Laudone at Hartford, CT.

I am seeing a Dr Siegil also at Hartford for a second opinion.

[Karen]

David,
The second opinion will be important, so please use an expert if you can. Hang in there and keep us updated when you can.

[dadmo]

David:
Where did you have your RPLND done and who are you using for a second opinion?