Our newest appointment

[mercyriver]

Well, we met with the urologist today who recommended surgury right off the bat, of course, he is a surgon. Though he did recommend laprascopic over the normal RPLND, because of the assumed lack of bulkiness of the disease.

The newest measurments off of the PET scan for the size of the lymph nodes was 2.2 x 2.2 cm and 2.4 x 2.3 cm. They were 1.4 x 1.8 cm and 1.9 x 1.4 cm a month earlier. There were only 2 lymph nodes that were seen as actively eating the glucose up. One was at the L2 vertebral, the aortocaval lymph node and the other at L3-L4 level just anterior to the inferior vena cava.

After talking about surgury and chemo and why he prefers to see surgury done and then chemo if disease is found we finally said we just want Dr. Einhorn to review it and then we will do what every IU recommends.

He agreed and said he would start the process right after we left.

So...I know alot of you will be upset we still don't have a decision made but at least I know for a fact Dr. Einhorn is being consulted at this moment.

Couple of the funniest things that struck me was the urologist mentioned that teratoma is to slow growing to suck up the glucose but yet he thinks the lymph nodes are teratoma. Secondly my husband asked how quickly we needed to make the decision about the surgury and he actually said "Oh a month or two would be OK.". I almost burst out laughing. I couldn't believe he actually said we could wait that long!! He honestly thinks because there are no elevated tumor markers it is OK.

Hoping to have an answer/decison tomorrow or Monday at the very latest.

Becki

[boyce]

RPLND Experience

Einhorn and IU do not do lap RPLNDs at all. Please ask detailed questions about it. Much higher mortality rate, more complications from surgery. Mine was done at Sloan-Kettering and I had the non-lap surgery. Was back at work in just over 2 weeks.

Also, not easy to find a lap RPLND surgeon. I could only find 3 in the country with any real exp, and they do 6-8 per year each. My surgeon at SK does 100+ per year. Nerve sparing procedures get better consistently as well.

I was totally pro- laproscope until I fully researched it. Has some advantages, but it is not without risk.

[dadmo]

Now that IU will be involved things should move quickly. It won't take Dr. E. long to make a decision but as boyce mentioned neither IU or Sloan do the LRPLND. I don't have a problem if you choose the LRPLND just make sure your not his first and that if he needs to he will go to a full open.

[mikeygti]

With enlarged lymph nodes,and a large component of E/C in the original tumor,he should be headed for Chemo. Surgery would then be required to remove any remaining masses >1cm .

I would be surprised if Einhorn suggested anything different.

Best of luck !

[mercyriver]

Yeah, I kind of picked that up before that IU doesn't recommend or do L-RPLND. I am fairly certain they will say chemo first.

Which honestly is better for us as a family too. We would have to fly somewhere with out knowing anyone there. With three young children even if they stayed home with someone, well just not the best option.

How ever it turns out we have lots of great family and friends here in Denver that will be great help for anything that occurs here.

And yes, my opinon of the urologist dropped a bit today. Good news is he is the top urological surgon in the state and has done pleanty of RPLND's. He just doesn't like the risks involved in doing surgury after chemo. He says everything is much more delicate and he has had men that everything you touch bleeds. He was just trying to find the easiest surgury. But as my husband put it, he wants what is best for him, not for the surgoun.

Becki

[pvarela07]

Becki,

I live in Hawaii and I came to Denver to have an open RPLND done in the University of Colorado by Dr. Shandra Wilson two weeks ago and I couldn't feel better. The University of Colorado also have great urologists and oncologists specialized in testicular cancer. I would contact them to avoid all the hassles of getting surgery or treatment away from home. Below is their contact information, best of luck.

Tiffany Colvin, Testicular cancer coordinator, 720.848.0664
Dr. Shandra Wilson, Urology, 720.848.1800
Dr. Thomas Flaig, Oncology, 720.848.0170

[Scott]

Much higher mortality rate, more complications from surgery.

While there are reasons to favor open surgery, I don't believe this statement is true.

[Scott]

lap RPLND is the easiest surgery????????

Open RPLND is hard, and laparoscopic RPLND is harder. I suspect he meant easier recovery for the patient, not easier operation for the surgeon.

[dadmo]

I don't understand where the "much higher mortality rate" idea comes from. Dr. Sheinfeld at Sloan has done more then 100 RPLND's per year for the past few years and has never lost a patient on the table. I believe the higher risk for LRPLND is that they might miss a bad node not that you will expire on the table.

[Scott]

I live in Hawaii and I came to Denver to have an open RPLND done in the University of Colorado by Dr. Shandra Wilson two weeks ago and I couldn't feel better.

Congratulations, and welcome to the forums!

[Scott]

...but current NCCN guidelines specify the open approach.

Specifically, those guidelines say:

In general, an open nerve-sparing RPLND rather than a laparoscopic RPLND is recommended for therapeutic purposes. For example, a concern exists that a laparoscopic RPLND may result in false-negative results caused by inadequate sampling, and no published reports focus on the therapeutic efficacy of a laparoscopic dissection. Because the recommended number of cycles of chemotherapy is based on the number of positive nodes identified, inadequate sampling may lead to partial treatment.

[Scott]

...neither IU or Sloan do the LRPLND.

I remember reading in this bulletin from June 2005 that Sloan planned an L-RPLND study:

For example, attention is being focused on whether laparoscopic surgery for RPLND is as effective as the current "open" surgery approach. Dr. Joel Sheinfeld, vice chairman of Urology at Memorial Sloan-Kettering Cancer Center, observes that this new approach remains subject to debate: "It's unclear what is the therapeutic efficacy of laparoscopic surgery as compared with open RPLND, where the therapeutic efficacy is well established," he says.

Memorial Sloan-Kettering plans to initiate a study of the less invasive RPLND technique, Dr. Sheinfeld continues. "We're going to do a study of the laparoscopic operation so that it exactly mimics the open operation. This will be for patients with low-stage, seminoma stem cell tumors. Patients with low-volume disease will not get chemotherapy."

[Scott]

The bigger question here is whether it's better to do RPLND now, because it might be teratoma and it's easier to perform RPLND before chemotherapy.

Becki, you must be incredibly eager just to get a good decision made, whatever it turns out to be!

[Scott]

I think you're merging the oncologist and the urologist treating Becki's husband into one person, but I can't argue with the main point: it's necessary to get to an oncologist with testicular cancer expertise right away.

[boyce]

LPRLND vs. classic RPLND

When I was investigating surgical options, Sheinfeld himself said that mortality rate of LRPLND is up to 6 times higher than classic open surgery. Also, there are more lost kidneys with LRPLND. I'm telling Y'all that I researched the heck out of this thing. Open surgery was right for me, but lap may be better solution for others. One of my complicating factors was that I was post chemo and had the "stickiness" of the tomors attached to nerves, etc.

Certainly invesigate all options, and all I know is my experience. The open surgery IS painful and it is a major surgery. But the LRPLND is very new with a limited number of experienced surgeons.

For whatever that's worth....