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Dr. Kwon suggests salvage lymph node surgery...

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Posted 8/7/2015 12:23 PM (GMT -5)
In preparation to the conclusion of our long extended trial at NIH , Marie and I decided to get yet another 2nd opinion before simply going back on lupron. That led us to Dr. Kwon at Mayo (thanks to HW Brothers,Gunner34 and Compiler) where I had both an MRI (with rectal coil-MOST pain I've ever experienced!!!) and of course their C11 Choline scan. The scans showed only one node that lit up the screen. The same single node seen in 2 recent nih "trial" scans.
A week later we returned to discuss the findings and Kwon suggests Salvage Lymph Node Dissection.
http://www.ncbi.nlm.nih.gov/pubmed/25150640 Salvage lymph node dissection for prostate cancer nodal recurrence detected by 11C-choline positron emission tomography/computerized tomography.
We're going with it for several reasons that Dr. Kwon listed It will be my second robotic surgery on September 29th at Mayo in Rochester MN with Dr. Tollafsen.

Sadly we miss the GFMPH Gathering in Rochester NY in Sept. but we hear Halbert will be representing Illinois so not too bad.

JIm and Marie (wampuscats)
Posted 8/7/2015 1:45 PM (GMT -5)
Interesting approach. I wish you all the luck with this. Knowing you, I know you've done due diligence, so I would love to hear more about it. Some questions: How do they find the LNs when they are doing salvage ePLND - do they use a fluorescent dye? Do they keep a pathologist standing by to examine them and keep dissecting until LNs are clear? What did he say the expected side effects are - lymphedema? lymphoceles? What are the relative advantages/disadvantages/results compared to salvage LN radiation?

- Allen
Posted 8/7/2015 2:00 PM (GMT -5)
Are you sure you would have to miss GFMPH?

I was expecting that since Sept 29 is a Tuesday that GFMPH would be the prior week Thur Sept 24 - Sun Sept 27 but you have been to more of these than me.

So not sure if it is the last full week of Sept or the last partial week in Rochester. Since we will likely drive, I have not made any specific plans yet other than to be there.

Even more importantly congrats on identifying a solution.
Posted 8/7/2015 2:44 PM (GMT -5)
@Allen,
I wondered about the dye also. Kwon says he/they(Mayo) always take 30 LN during surgery. He said he gets alot of Henry Ford patients with leftover +LN. I know Compiler saw him, but that not 'alot'.
Tollafsen will get as many LN as reachable(?60?) and yes there is a pathologist there. That would be great if the P told him "OK stop now". I'll add that to our list of questions as well as any others you may think of Allen! Kwon also said that we should get pathology on everything removed and that Radiation can be done easier/better after SLND rather than before. Sounded sensible. and yeah there can be SE. They use self administer Heparin among other things. Jim is pretty possessive of his great urinary continence and fears what rt could do. I'm doing my homework but if you have anything to add, send it to us, Allen!
@Nomar,
We have pre-op stuff ALL DAY Monday beginning at 7:30 am. We will be driving. (unless you find us some FREE flight money for 2 ;) It will be long wait til March to see everyone....

Marie and Jim
Posted 8/7/2015 5:14 PM (GMT -5)
Your treatment plan sounds like good news to us. Please let us know how you do. Details of your treatment would be appreciated. Denny is supposed to begin the DCFBC NIH study this month (not scheduled yet). You give me great hope that perhaps they can pinpoint his micro metastasis and treat it--I have never quite understood why this isn't an option. If someone could just give us some hope for a cure! I feel like we're just waiting for things to get worse.
Posted 8/7/2015 6:05 PM (GMT -5)
Maurie and Jim,

I have a pelvic lymphadenectomy on July 2nd at the Duke Cancer Center.

They removed 25 LN from me. 12bilateral obturator lymph nodes; 5 bilateral external iliac LN; and 8 Bilateral common iliac lymph nodes.

I'll be glad to share a recap of the experience. Just PM me. I'll spare the details for now.

As far as continence, there have been no issues. They used a foley catheter and removed it the next morning (mine was an overnight stay). I was able to urinate within an hour and have had no issues since then.

I hope this info helps.

Tony
Posted 8/7/2015 7:47 PM (GMT -5)
Thanks for the replies. .
@Tony,
Very interested in your experience with SNLD. Not many postings here about it. Lots more happening across the pond with LN surgery. Our email is active if you click on the envelope to the left under our screen name. Any side effects like lymphoceles. Did you do the heparin shots? Did your PSA go down after surgery? Who was your surgeon?

@Dyank
YUP. We've been feeling the same way since surgery. Theres got to be more than Lupron for a few years..castrate resistance..then xtandi or abi..then chemo...then .. well..nothing. Jim had the DCFBC at Nih and will be there again on AUG. 25.

Jim and Marie

Post Edited (wampuscats) : 8/7/2015 6:53:31 PM (GMT-6)

Posted 8/8/2015 7:50 AM (GMT -5)
Nothing useful to add to the discussion just wanted to wish you well and success.

Don
Posted 8/8/2015 1:55 PM (GMT -5)
Jim and Marie:

Awesome to hear the new plan ... sounds like you guys are going after it where it lives. The best ...

Ray
Posted 8/9/2015 1:57 PM (GMT -5)
Looking forward to your updates on this...

BTW, I think I mentioned a place in Rochester to stay when receiving cancer treatments at Mayo. The Hope Lodge is the place I was referring to. I just looked it up and it says you need to be receiving ongoing treatments at least 3x per week to qualify but it might be worthwhile to check it out anyway. I met a guy during chemo treatments that subsequently received radiation and ended up staying there (Hope Lodge) for the last few weeks of his treatments for no charge.
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