Our new pathology from Dr Ulbright at IU

[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!!

[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.

[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.

[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

[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

[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.

[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

[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]

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

[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!

[dadmo]

Becki:
IU is a center of excellence in the treatment of tc so don't focus too much on who exactly does the treatment. Dr. Einhorn will be the primary contact and he will hand the work off to whom ever he feels is best for the job. Many of the procedures can be done by several people at centers of excellence.
My son had his RPLND at Sloan I know Dr. Sheinfeld was there but to this day I don't know if he participated or directed. We met with Sheinfeld at 6:30am and he was still involved with surgeries at 11pm. It's hard to picture him doing all of the actual work.

[Davie]

I had a postchemo RPLND done in the UK, for resection of all my right-sided lymph nodes, including some residual mass.

I had an open procedure, but my surgeon did the procedure through a 5 inch mid-line abdominal incision (2.5 inch either side of my belly button). I was his 389th, so he'd practised a bit before he got to me. Like any other RPLND my abdominal muscles were separated and then stiched together. I'm sure the small size of the incision really helped me get back on my feet very quickly.

The same surgeon did this guys www.timstollery.com. Click on gallery and scroll to page 3, to see what is a relatively small scar. If anything my scar is slightly smaller.

I've seen pictures of guys with 14"+ scars for a primary RPLND, which seems excessive to me, and I'm sure must be more uncomfortable and lead to longer recovery times.

If your husband has to have an RPLND, maybe you could quiz the surgeon on incision length.

Davie

[boyce]

Laproscopic RPLND

Hi Mercy,

I felt just like your husband wanting to avoid big surgery. The problem is that the lap procedure is SO new. The best in the country do 6-8 per year. We found 1 Dr. in St. Louis, 1 at Johns Hopkins and 1 in NJ that even attempt it. Ther mortality rate during procedure is 600% higher than classic RPLND and there is a much higher rate of losing a kidney as well.

I went to Sheinfeld in NY who does 100+ per year and had the big one. Healing time is similar, big surgery generally has more post-surgical pain, but mine lasted about 3 weeks or so. Lap procedure has different healing complication.

In my case, the 3 lap surgeons looked at my info and agreed that even if they went in for lap procedure, a 70% chance existed that they would have to convert to a full RPLND anyway. So I went to Sheinfeld, recognized as 1 of the 3 best in the world.

That's just my story, but I was VERY pro laproscope and had my mind changed...am glad I did it the way I did

[mercyriver]

Well the good news on that is that I trust our urologist. He has been great from the start and I also know he will consulte with anyone at anytime to make sure he is doing the right thing.

Question though, will Dr. Einhorn work with my husband's urologist? I have a feeling this will all move faster through him and since it has been handed back over to him I am wondering if Dr. Einhorn will work with the urologist.

Guess I will have to ask!

And Chris, just so there is no confusion, my husband started out on surviellence, the first CT showed slightly enlarged lymph nodes none bigger then 1.3 cm. The second CT showed continued enlargment. This all was done with blood work as well. And once a chest xray. I know proper protocol has not been followed for surviellence, but surviellence is what we did pick originally.

And we here in Denver have once again been hit by yet another snow storm, 4-10 inches this time, hopefully it doesn't slow things down, yet again.

Becki

[Lori]

Becki, I would suggest one of two ways: have your doctor call Dr. Einhorn and ask him to review your information. Or you can call his office directly at 317-274-3515. I set up an appointment through his secretary Ann and we took all the reports with us. If you simply want him to review the reports but not see him right away you may want to have your oncologist start the process.