These 2 guys had PCa around the same time but their treatments differed..The URO is doing just fine...The other guy is stone cold dead. I wonder if Ripley had gone for an RP like the URO "to remove billions of cancer cells", if his story might have been different because he would have lived long enough for the newer treatments like Xtandi and Provenge. This sure validates the military doctrine of Know Your Enemy
Gus
Hardly similar stories, one man had regular psa test and presented with psa 6.5, so sure he was a candidate for surgery, the other presented with psa 133 so not really a candidate for surgery, sure it helps to be a Doctor and to be informed as it would for any patient to be informed and have the advice of world class Doctors like Glode. The scarey part for me is I presented worse than Mr Ripley the year after he was diagnosed bpsa 148 gleason 10 stage m1b and am still walking the planet thank God!
I met with a URO recently who said there is not enough follow up with trials to say definitively that there is a survival benefit when getting an RP when there is metastatic spread. The same week, I met with my medical Oncologist who said there is growing evidence of a survival benefit, but (as always) she didn't provide me with any evidence. Has anyone seen any convincing research one way or the other. By the way, a radiation oncologist also recetly told me, there is no role for radiation in my case (diagnosed 12 months ago, metastatic to the bones in 12 places out of the gate).
I was diagnosed with Stage 4 D1, T3N1, Ductal where it had spread to the pelvic lymph nodes but not the bones. Had to argue with my urologist for surgery. That was followed up with radiation and two years of hormonal therapy (about 10 months into it). What I have read there is a benefit with surgery when the cancer "only" spread to the pelvic lymph nodes. More research is needed to determine the benefit for surgery when the cancer has spread to far away organs or bones. Does not mean that in these cases there is not a benefit, just that it has not been studied. Listed below is an article dealing with this issue.
I am looking for a way to get treatment directed at the prostate. If you know anyone who would do it, I would appreciate know what the options are.
My mets are dissolving. I have no idea of what my CTC counts are. Would love to know. But my prostate is intact. And I presume my macrophages are happily tossing chunks of my cancerous prostate into the veins in an effort to clean things up, using the veins as a convenient sewer. We know this tactic is no longer helping, if it ever did.
Ah! A quick look at PubMed has made that now another source I need to get familiar with. Here is an article.
ncbi.nlm.nih.gov/pubmed/280...
patandemma@martingugino
Mark Scholz MD
prostateoncology.com
4676 Admiralty Way
Marina del Rey,California
310-827-7707
He is the oncologist who organizes the annual prostate oncology conference every year in L.A which features such heavyweight as "Snuffy" Myers,Kwon from Mayo,etc.
He is as connected w/everybody who is somebody in PCa as anybody in California w/o being locked up to 1 institution like UCLA,USC,UCSF.
I found him very worthwhile to consult
you think he would do it?
patandemma@martingugino
He will either
1. )recommend it and get you to a radiotherapist who thinks along the same line
OR
2.) he will give you a well thought out reason why not
I know he recommended in my case and being a physician myself,I chose the radiation oncologist and the institution myself
where did you go?
patandemma@martingugino
Dr Carl Rossi MD at Scripps Proton Therapy Center
0730 Summers Ridge Road
SanDiego 92129
858-549-7494
Latest technique proton beam treatment used there-IMPT (Intensity Modulated Proton Therapy)..
the only other proton center (which Dr Rossi helped found) on West Coast is at Loma Linda University and I don't know if they have advanced to that yet.
Thanks Martin, interesting article. It seems there might be some selection bias involved in the superior results of the RP/Radiation group.
Diagnosed 2 years+ with G9, PSA 167, Stage 4, around 30+ bone mets, pelvic girdle lymphs, seminal vesicles. Told radio would kill me as too many mets. Zoladex now in year 3, chemo for 10 cycles and now Zytiga since Sept '16. 1 bone met left, nothing new, no further spread and PSA current 0.06. Surprised yes I am. No side effects other than tiredness. David
Wow, that's amazing. I hope it continues for you.
At Dx, I was St. 4, Gl. 4+5, with lymph node involvement. Both docs I saw agreed that I was not a candidate for RP. That was 7 years ago next month. If I had known how debilitating the ADT would be for me, I would have chose the RP route. Not getting the RP, and going the IMRT route is something I regret. The 45 doses of radiation did quite a bit of damage. And, no one told me that it might come back and literally bite me in the ass after six years. Two things happened, my prostate closed my urethra over a few time, and Melena, caused by radiation proctitis. I had three hospital visits over this. Hindsight, huh? And it can return.
Joe
Hey Joe, what do I mean 'over a few time'? You meant 'over time', like it took a long time. OK? Yea got it.
Joe, it was posts like yours here, that warned of the damaging effects of radiation, that pushed me down the HIFU road. I wasn't metastatic. I was being directed towards 45 radiation treatments after being told I wasn't a candidate for surgical removal of the prostate. I had several problems with radiation (and I'm not a doctor of course): 1. afraid of the kinds of damage you talked about. 2. afraid that radiation wouldn't do the job -- i.e. wouldn't snuff out the cancer. 3. radiation seems like a blunt instrument campared to HIFU. I guess time will tell. I still have a few months of my 6 month eligard to get through. That was the other thing about radiation: one URO recommended 18 months of ADT to go with the radiation, and another recommended 36 months. If radiation is so great why the lengthy ADT requirement. I did get HIFU so I am biased.
Hey Ed,
When I started the ADT, my Uro had me on three month shots. After I went to nil, he put me on six month shots. At the end it was basically 18 on/18 off. When my PSA rose, I started full time Lupron and added Zytiga, PSA is now 1.1. I'm told I'll be on it from here on out. It don't matter too much, I feel OK for a sick guy.
Joe
As others have noted, the two cases Gus noted should not be compared, however I did read the article by the urologist with PCa and it was a fascinating personal account of his journey which I highly recommend. ncbi.nlm.nih.gov/pmc/articl...
Sorry, this is the full link: ncbi.nlm.nih.gov/pmc/articl...
Thanks for the link Len. Controlled and calm reasoning that inhabits the lives we lead.
Sure they can be compared on the basis that the URO received state of the art treatment and Ripley did not...The URO had GS 8 and Ripley GS 7..also they both developed mCRPC...Granted Ripley had a starting PSA of 135...so what...Dr. Myers treats guys like Ripley all the time and if Ripley had been a patient of Dr. Myers he would be alive today...Myers had patients who initially presented with PSA's of 6000 and kept them alive following a protocol similar to the URO
Another consideration is that the urologist received his treatment in the US while the other poor chap was in the UK, where treatment options are fewer. Not even sure if Provenge is reimbursable there. In any case, thanks for bringing the urologist article to our attention.
Len,
Looks like you have pretty aggressive PCa....what treatment are you following now...You are a smart guy and I always read your posts.
Gus, After 48 sessions of IMRT my PSA was down to 0.1, but my medonc said he believed that small amount represented resistant cells so he obtained permission for me to get Zytiga which I just started on January 2. I'll have PSA tested in March. If undetected, I'll go on drug holiday. Feeling fine so far. No problems with Zytiga.
When I went to see Dr. Myers 10 years ago,I drove for 2 and a half days to get there. I had an appointment for 2pm,So I arrived a little after 1 and it was after 5 when I got in, and all the office staff had left, he put me on triple dose casodex which is the only time my liver numbers went high, he gave me a lot of hope, However when he was typing up the report for my local oncologist he had my name completely wrong, so that was confusing ,I did not notice it till I handed it to my local Oncologist. I wrote him a check for what I think was close to 2 thousand dollars, as he did not take insurance. He said he would have my scans looked at by his tumor board and get back to me, but I never did hear back I did get all his books and liked his method of thinking out of the box.And his ideas on food. At my Locals insistence I found a Oncologist who was at a major teaching hospital and specialize in PCA and was only 4 hours away.
It was a great article about the urologist, all should read it.
How to get free research articles and not pay. Tutorial. 
Getting my head around the whole PCa thing
hoping for some feedback from you guys.
Getting Medicare to pay the VA
How long have you warriors been on ADT for advanced low volume PCa?
