HealingWell
Search Close Search
☰

Active Surveillance

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/26/2016 7:27 PM (GMT 0)
Can anyone recommend an AS program that will accept someone with three cores 3+3 and in both lobes?
Posted 10/26/2016 7:46 PM (GMT 0)
I can't honestly tell you which programs would accept your pathology, but I'm sure someone will soon. With only 3 positive cores, all of GS6, I'm sure at least one will fit your needs (unless there's something I'm missing in your stats).
Posted 10/26/2016 7:59 PM (GMT 0)
Robert, Sorry to see you here but this sight is very helpful. I have been on AS coming on five years in March. I am being seen by Dr. Behfar Ehdia at Memorial Slaon Kettering. He is very pro AS. If New York is convenient you might want to give him a call.
/www.mskcc.org/cancer-care/doctors/behfar-ehdaie
It looks like your PSA has been stable for two years, that's a good thing. Best of luck
Posted 10/26/2016 9:01 PM (GMT 0)
I suppose it would help if I gave my location; I'm in the Nashville area and travel back to Chicago frequently.
Seems like many programs only accept those with fewer than three cores and confined to one lobe.
Posted 10/26/2016 9:50 PM (GMT 0)
Hi Robertmp,

Be aware that you don’t really need a “program” per se. You need a doctor (urologist) knowledgeable and experienced with AS. Some of the large institutions—like MSKCC, for example, which has one of the strictest program criteria—have a “program” with a common, shared set of constantly-evolving standards & thresholds…but they are not necessarily common with any other “programs” anywhere else. In the big picture, there are probably far more men “on AS” through their local urologists than through any more formal “program.” Call some of the larger urology practices in your area, and ask which doctors have a lot of men on Active Surveillance under their care. Call Vanderbilt. In fact, it wouldn’t surprise me if Dr Smith also has AS patients under his care.

Your case is highly eligible for AS. Your questions about fewer than 3 cores and being confined to one lobe-only are the criteria for the “very low risk” category…you are in the NCCN’s “low risk” category.

Basically the NCCN is now recommending AS as the first-line management option for (a) very low risk, (b) low risk and (c) “carefully selected” favorable intermediate risk cases. You don’t really need to worry about what the “carefully selected” criteria are, but for Dr Laurance Klotz, who runs the largest and oldest AS “program” at the Univ of Toronto/Sunnybrook, the intermediate cases which are clear candidates for AS are 3+4 with only low volume (<10%) of tumor involvement.
Posted 10/26/2016 10:16 PM (GMT 0)
Added later…

Dr David Penson, chairman of Urologic Surgery at Vandy, for example, has published several papers on AS, including:
Factors influencing patients' acceptance and adherence to active surveillance
--/www.ncbi.nlm.nih.gov/pubmed/23271775
Active surveillance: not your father's watchful waiting
--/www.ncbi.nlm.nih.gov/pubmed/19947350

I'd call him if I was in Nashville.

Post Edited (JackH) : 10/27/2016 1:09:28 PM (GMT-6)

Posted 10/27/2016 11:19 AM (GMT 0)
JackH, Dr.Smith didn't recommend anything but surgery for me during my consult. I guess you don't get the experience of thousands of RP surgeries by dissuading people from them, although admittedly if I were to undergo said surgery I'd want him to do it.Vanderbilt is also where they tried to do a DRE before the PSA blood draw until I stopped them. They were also most uncooperative in forwarding my pathology to Epstein. In summary I did not have a good experience with them.
Before seeking treatment at Vanderbilt I did go to a local urology group on the advice of my GP and they were pushing RP before I had even had a biopsy. Needless to say I'm not keen on revisiting them. Your advice has been appreciated (and thanks to the others).
Posted 10/27/2016 1:19 PM (GMT 0)
If you want to know what your cancer looks like, call Dr. Joseph Busch in Chattanooga. He'll go over your images with you and show you exactly what's going on. He'll teach you a lot. He did me. This man is all about no cutting unless absolutely necessary. A word of caution, you won't be able to shut this guy up. He'll call you at home, talking PCa 'till midnight. He eats this stuff up. Vanderbilt isn't what you want for AS.

www.drcradiology.com
Posted 10/27/2016 1:33 PM (GMT 0)
He will also target your lesions for biopsy. You'll need that. (possibly)
Posted 10/27/2016 1:48 PM (GMT 0)

island time said...
Vanderbilt isn't what you want for AS.



You are right. I had a momentary lapse of recall. That's a good, first-hand input for Robertmp.
Posted 10/27/2016 1:54 PM (GMT 0)
Thank you island time, I'll look into Dr. Busch.
Is there a back story on why Vanderbilt is a no go for AS?
Posted 10/27/2016 6:23 PM (GMT 0)

Robertmp said...
Seems like many programs only accept those with fewer than three cores and confined to one lobe.

Which programs said that to you? Vanderbilt? I'm surprised that any programs have rejected you. NCCN advocates AS as an option for all low risk men (which you certainly are). Urologists will usually work with patients according to what the patient wants.

I think that the essential feature you'd want in an AS program is a radiologist experienced at reading multiparametric MRIs. I'd assume they'd have that at Vanderbilt, U of Chicago, and Northwestern.
Posted 10/27/2016 6:54 PM (GMT 0)
In the spring of 2015, Vandy had no 3T MRI machine. (If they do/did, they wouldn't use it for prostate cancer evaluations). That's one of the 2 reasons Vandy wasn't helpful for me. The second reason was the same as your's Robert. Smith scared the absolute be-hejus outta me when I mentioned AS. I left my consult with him scared out of my wits about AS. He's done some good work with surgery with guys on this site. How they do that without imagery, I have no clue.

JackH....your links don't work.

Penson at Vandy, I never consulted with.

You'll need a urologist to write an order for Busch in Chattanooga to do a guided biopsy (That may have changed in the past year and a half. Call him and see.). I did one somewhere else and sent the CD's to him.

Hey Robert....it can be done, putting together one's own program. (on a personal note) In the end, it left your's truly feeling far from shore and exhausted. I found myself on my own as far what most doctors were suggesting as well as having a worse pathology than internet forum AS members had. Those two items together unnerved me. It may not you. (and I wouldn't blame ya if it didn't)

TA's right about urologists working with patients. They question is, do they have the technology focused expertise?
✚ New Topic ✚ Reply