Our new pathology from Dr Ulbright at IU

[Margaret]

I think the reason most have the large opening is that like my husband, they had a bi-lateral RPLND, where the lymph nodes had to be removed from both the left and right side. Either way, I am sure your doctor will help you decide what is best. Good luck!

[mercyriver]

Boyce-Thank you for the information on the L-RPLND, I had no idea the risks were higher. I'll have to mention all of that to my husband.

Davie-I will have to ask about smaller incisions when we finally get to talk about the RPLND, I know my husband would much more prefer that.

Chris-Good to hear that he is anal, one place in the world to be so. And anytime you want to hop down to Colorado and take the snow you are more then welcome. Thankfully we did not have any Dr's appointments today. But after 30 inches, then 20 inches and now about another 10, we are running out of places to pile the snow up because it isn't melting fast enough in between storms. And if you work fast enough you beat the next storm to town to get some fresh snow, they have another snow storm forcasted for next Thursday already....not sure what state we live in anymore.


Dadmo-I had seen Centers of Excellence mentioned before, but never thought to look up the closest one to us. Would you believe The University of Colorado Cancer Center is one of them. Right here in Denver. How could I have been so blind! I will be looking up more information on them today. I am not sure where they are in the Testicular Cancer arena, but it is better then what we are currently dealing with. Thank you so much for mentioning that.


Margaret-I can understand why they would have to make a larger incision for removing lymph nodes from both sides. And my husbands enlarged lymph nodes were on both sides as well if I am remember correctly. At least on the first CT there were on both sides.

Thank you all for your great advice and wisdom, it makes figuring out things that much easier.

Becki

[Scott]

The mortality rate during procedure is 600% higher than classic RPLND and there is a much higher rate of losing a kidney as well.

Where is that information from? I haven't seen anything like it before. I have seen some reports that claim the opposite, such as this one.

[mercyriver]

I just want to let everyone know we are meeting with the urologist on Thursday.

He was telling my husband over the phone it was a good thing I requested the 2nd opinion on the pathology. He also mentioned he is pushing in favor of surgery, but we would go over all options on Thursday.

He told my husband he is a very unique case and doesn't fit in a box.

My husband on the other hand has done a 180. He wants the Urologist to call Dr. Einhorn. He says he will not move forward on this until Dr. E has consolted on it, I am bringing Dr. E's phone number with us to the appointment.

My husband also said if the urologist waivers and can't decide what to do or if he won't call Dr. E he will switch Dr's all around, to the Cancer Center that Dr. Golde works for in fact.

So everything has really swung in a very different direction. His urologist really is great, he is the one who recognized that TC wasn't something to mess around with and did the surgery that same day.

I am very confident we will have answers in the direction we will be moving by the end of this week.

Becki

[dadmo]

Becki:
The history of this case is troubling and the delays are inexcusable. Let's for a minute forget about the past and focus on what to do now. In a standard case of tc the doctor determines what you have, he can then go to the book or call an expert, the treatments can be very standard (sort of off the shelf) but as you said the doctors admit you husbands case is doesn't fit in a box. Well that means they wont know how to treat it, with those words "doesn't fit in a box" an expert must be consulted. This form of cancer is very curable if caught early and treated properly, in your husbands case time is slipping away and the doctors don't know how to treat it. This would seem to put your husband in a very bad situation, life threatening actually.

[Chris'Mom]

I also hope that you get things settled as soon as possible....we took my son to Sloan and his treatment started a few weeks after he was first diagnosed....after chemo he had his RPLND at Sloan with Dr. Sheinfeldand he is doing great....the Fellow who was under Dr. S at the time said that Dr. Sheinfeld performed the surgery and would only let him "watch"...not touch....so in my opinion I thought he only did the surgeries....I hope everything works out for you...Mary Ellen

[Savin16]

Becki,
I'm just shakin my head at this whole situation and how all too familiar this sounds. My brother was diag. Oct. 2005 R I/O then cat scan showed inlarged lymph nodes, but surveillance was an option for 3 months, my brother let it go longer than that, he thought he was invincible, had I know then what I know know through my new friends here, that never would have been a way to go, if nothing else, a second opinion should have been done, so 5 months later the cancer had spread, 4 round of aggressive chemo followed by open RPLND, and now waiting for more chemo. and now it's 2007.
Best of luck with your appt. on Thurs. and as for contacting Dr. E, my brothers Dr. said he always consults with him and did so in his case, all reports were faxed and we received a response from Dr. E the next day. This is still CANCER, and fast action is required. Stay strong

[Fed]

A friend of mine that has rotated at Sloan told me that for TC treatment it is crucial that you have an accurate path diagnosis and films obtained expediently. You have those now.

Clearly the data show that it is likely something is going awry, and for situations like these, you need to act fast. You cannot let this get out of control. The only way to a cure is to be diligent. You should know by now that delays will almost certainly make things worse (just look around other posts through the site). Thursday is too long to wait.

I don't know whether you are now taking action, but if you haven't done so, take care of this by first thing tomorrow morning.

[Scott]

Also, Dr Ulbright wrote " Pathologic stage 2" so again, I hope this tells you something.

If I'm reading everything right, he said "pT2 NX MX," because of lymphovascular invasion, but that does not mean the cancer is stage II. However, the growing lymph nodes and positive (if not definitive) PET scan certainly point that way. The important thing, I think everyone agrees, is to get to an oncologist with testicular cancer expertise in short order.

[JAYHAWK]

I feel compelled to add a comment to this discussion....on numerous occassions I have been in my medical oncologist's (also a urologist) office awaiting my appointment and had conversations with other patients or overheard conversations where they had been referred to him the day before. Need equates urgency!!