Update: Dxed in 2001 aged 56. Now 71, 15 yrs. out. Did IMRT Radiation in 2001. PSA was 5.6 and Gleasons, all 3 + 3. PSA nadir .54 in 2005. By 2011 PSA up to 2.0. Re-biopsy. Cancer again found in prostate, one 4 + 3, two 3 + 4. Brachytherapy then. 6 months later nadir of PSA at .6. PSA been gradually rising ever since then, for the past 5 years. Past 6 months going up .7 each month. Consult with Urologist. Refers me to Mayo (Minnesota), for C 11 Pet Choline Acetate test, imaging PET scan highly touted to show cancer "hotspots". Met with Dr. Eugene Kwon, big-shot here and well known for his work with recurrence. Lo and behold, with the rising PSA I anticipated the worst. Turns out after 15 years, and the rising PSA scores, Pet Scan found only one faint activity in right seminal vesicle. Great results and quite a surprise since PSA rising so quickly past 6 months. Plan now is to have hotshot Urology doctor at Mayo, Meinders (sp), do another biopsy of prostate and seminal vesicle. I will be sedated, knocked out, for this. Kwon unclear as to source of PSA rise. Could be some PSA from prostate gland yet, since perhaps there is a bit of alive tissue left over from two radiation treatments. U guys believe that? So wish your feedback on what is going on here. Do U folks trust this new Pet Scan c11 acetate procedure? I am relieved yet cautiously hopeful that my cancer may be a slower growing one, and yet the PSA rising much faster lately than previously in my whole history. One problem Kwon noted is that a seminal vesicle is a vehicle for PC to travel further into the body. If Cancer is found in this round of biopsies, treatment choices unclear. I am adamantly opposed to hormones because of crappy side effects. Can't do the proton because more radiation in area already radiated. HIFU? Feedback please. Docrok, Minneapolis
docrok; 15 year update. Rising PSA, ... - Advanced Prostate...
docrok; 15 year update. Rising PSA, Pet Choline Acetate Scan test results Mayo Clinic, Minnesota.
docroc, interesting. I had Brachytherapy 6 years ago. Currently PSA is zero point ten (0.10). Has remained right about this reading for the entire 6 years. When I asked the Brachytherapy Doc about that number I was advised that is an excellent reading and that since I still have my prostate, there will never be a true PSA reading of 0.0
How fortunate u R Blaster. U do not have any recurrence. I had hoped for similar results, but alas, it is not to be so dude. Tx for writing BBob. doc
Unfortunately, this is the story of this disease!
i.e., different tests of all kinds, different results, further complicated by differing opinions of the many well known Specialists!
All I can offer is that take your time, do not rush into any severe invasive procedures and/or killer medications and get tests at other facilities (calibrations vary) , read by different doctors.
Exercise, drink POM Juice (!!) and stay healthy....and, ENJOY LIFE 
Hi 198: Good advice for sure buddy. I am taking my time and am glad that after 15 years of cancer, it seems I may have a slower progressing one. I do exercise, have drank my share of POM, and will be adding Pomi-T again to my regimen. Supplements from Life Extension. Plus I am big on turmeric-curcumin with added black pepper for additional benefits. Best regards: Doc
docroc: I don't know why so many guys are so averse to trying hormone depletion (Lupron + casodex). I recurred in 2001 after Pd seeds + XBRT in 98, been on IADT-3 since and doing ok..at age 80...I think. Walk my dog, play racquetball. Can't complain.
Remember, if you don't like the side effects of ADT, you can stop and the side effects will "wash out" within a few months.
herb
Hi Herb:
I know that I am highly sensitive to meds and I can tell when I am taking stuff. I have quality of life right now and do not want to lose it. I need all of the vitality I can muster as I am now in my 70's. So I hear U about the tradeoffs and I will have to weigh it all when I get the results of this next round of biopsies. Tx much for your reply. Doc
I freakin' hate ADT. Hope you can control in other ways!
Well, *I* resisted ADT because of its LONG list and high likelihood of dozens of SEs, which are less likely to "wash out" ... ever) as our age increases past 60-ish. Sounds like you got lucky.
Everyone is different and so the side effects of each medication fits the individual. I have very little side effects so far for any of these meds. If you have bad side effects from a drug stop it. Most side effects lesson or go away after taking the drugs for awhile. Better with side effects and being alive than being 6 feet under.
Dennis
Hey 4835; I know from past experiences with different dudes with PC that reactions to meds can vary. I am a sensitive person who listens to his body closely. I can tell when something new and foreign is in there. Luckily a beer or two gives me a light buzz too. Good news and bad news how my body responds to various chemicals. I would like to be one of the fortunate ones if I must go on Lupron/casidex that I do not experience the many side effects that I dread, i.e., fatigue, wt. gain, hot flashes, depression, breast enlargement, etc. Tx for writing 48. Doc
Hi again Doc,
I must be the anomaly. No hot flashes. I have actually lost 20 lbs since I started lupron. I don't think I am more tired than when I started lupron. In 2002 I had a gastric bypass surgery and have lost over 200 lbs. I did not have the loose skin removed after the weight loss because of insurance problems. I can't tell if my breasts are larger or not since I have lots of loose skin leftover from the bypass. I now weigh a little under 190. That's a lot better than the 410 lbs I weighed before. Doc the most important thing now is keep on living. I'm sure your and your oncologist will find a way that is best for you. Keep yourself positive it really does make things easier.
Dennis
Tx Dennis: I know that some of the men who take hormones do not seem to experience any side effects. In knowing my own body, I experience a sensitivity to any drug rehab. Not keen on just living without quality of life. Lots for me to consider here. Glad to hear that U felt little side effect consequences with your meds. Tx for the feedback. Doc
Ok Doc you may know your body but you still don't know what it's reaction to a new medication will be. If, it could, maybe, it will probably are not real reactions to a medication. If your body doesn't like it after a few rounds of therapy stop the medication. It almost sounds like you are frightened to try something new.
Dennis
Dennis/DFZ4835; You are lucky! Good for you (ADT side-effects). God Bless!
It's that quality of life versus length of life struggle again! I go for quality.
Re: "Most side effects lesson or go away after taking the drugs for awhile. Better with side effects and being alive than being 6 feet under."
HIGHLY personal choice, depending on countless variables including severities and whether they get worse or better with time.
You may want to look into a PET/CT with the contrast agent that received FDA approval 5/27/16: Axumin (brand name)/fluciclovine F-18/FACBC (earlier name). It is reportedly as good and in some instances better than C-11 choline, which is not FDA approved. Could be a challenge to find someone offering this since it is so new. If so, talk to Emory Univ (Atlanta). More here: urotoday.com/categories-med...
Tx much Dave 2 for the heads up on this test. I saw a red dot on the map at the website on Axumin that might indicate somebody, somewhere here in Minnesnowta, may have the machine. I will scope it out. Any more ideas please write. Best regards: Doc
The other scan that I would consider is a 3T multiparametric MRI with and without contrast, including endorectal coil. Scan would be of the pelvis and potentially supplemented with a limited MRI of the lumbar spine.
I recently had a NaF PET/CT (much more sensitive than technetium bone scan) that found a spot in my sacrum "highly suspicious for bone metastasis." A pelvic mpMRI w & w/o contrast found the same suspect area but the radiologist pronounced it non-cancerous, at least to the level of detectability via MRI. Oncologist's interpretation was to "trust the MRI." In doing more research on mpMRI vs PET/CT for staging local PCa, my conclusion is that PET/CT has the potential to be more sensitive while the mpMRI has significantly higher specificity (proportion of negatives that are correctly identified). Best to talk to a knowledgeable radiologist who routinely uses both scan modes for PCa before making a decision on this.
Since Kwon is recommending another biopsy, would also suggest that you pursue a fusion biopsy. It goes by different names besides UroNav, and is available at more and more centers. Go here for add'l info: health.clevelandclinic.org/...
Dave
Yes Dave. Tx for your input. I believe that Meinders, my next doc from Mayo, who will complete my next round of biopsies, is using the fusion method of protocols on the biopsy. With my recent MRI they will use the ultrasound, up my butt of course, and I will be sedated, knocked out this time, and thus I believe Kwon is on top of this, as well as Mayo, to do this procedure. Tx again for your support and info. Much appreciated. Doc
Hi Docrok,
Thanks for writing for us ... While you don't want hormone treatment because of the horrible side effects - I have the 'worst level' of side effects from Lucrin - BUT the alternative is to not live as long so there's a strong argument for me to 'put up with' the side effects.
The test you had based on 'Choline' lasted just 6 months and is now replaced by the Gallium 8A nuclear scan which is brilliant. The Gallium 8 scan, here in Australia, is not yet officially approved, but I'm glad that my Radio Oncologist - Professor Jim Denham - is progressive & up to the minute. The generator of the radioactive particle, on which the nuclear scan is based, costs approximately $A64,000 but can 'see' active cancer particles on the wall of cancer cells down to two ( that's right - down to 2 microns ... Millionths of a millimetre!!!
The radioactive particles used in the Gallium 8 nuclear scan are produced for each individual patient as needed AND have a half-life of just 58 minutes which is a very short time ... That's the point where the particles have lost one half of it's electrons and where you can 'radiate' other people.
There's a sign in the toilets to let the 'congregation? ... who've had the nuclear scan ... know that they should let the cistern of the toilet fill twice so that anyone who uses the toilet after them is not subjected to their 'radioactive waste!!!
I was diagnosed with prostate cancer in 2004, Gleason score 4 +3 ... aggressive cancer ... and had radical prostatectomy followed by radiation of the bed of the prostate ONLY AFTER RECEIVING ZARDAX and followed for 12 months with the three monthly implants - I asked for that which was argued against 'we only do that when the radiation fails' ... Later studies showed that should be done and is now BEST practice!
My PSA started to rise so I was placed on intermittent - 3 monthly - Lucrin injections ... They used to give 'on end' continuous Lucrin treatment but tried giving 'breaks' in treatment (you go off Lucrin until your PSA starts to rise again) to try to not get 'resistance' of your body to the drug, that is, it loses its effectiveness and you have to go to a more potent treatment.
PLEASE - DO HAVE T HE HORMONE TREATMENT ... NOTHING ELSE WORKS AS WELL ... I'm still above ground and the cancer hasn't won.
Take heart Docroc
Cheers, Aussiedad
Hi Aussie Dad from down under. Tx dad for the reply. I wish that test would show up here in the USA. A previous writer turned me on to another new test. Very cool that Australia is so up to date with the dude U R connected with. I appreciate your comments on ADT. Certainly I will leave it on the table as an option. I wish the Immunology world of cancer treatment would hurry up and offer an alternative from that point of view. I prefer to work with a targeted therapy vs the broadcast base of any hormone which affects the whole body system. Best regards: Doc
Actually it's Gallium 68a and has replaced the Choline based scan - research is bringing rapid change to the nuclear scanning scene. I have seen replies in other questions where individuals have accessed a Gallium scan in the USA ... See a reply I made to another current entry re the use of the cruciferous family - broccoli, brussel sprouts etc., reply which shows the effectiveness of this family of vegetables - preferably juice them raw for most effect - horrible taste but the compounds work in inhibiting cancer cell growth.
Cheers, Aussiedad
Re: "The test you had based on 'Choline' lasted just 6 months and is now replaced by the Gallium 8A nuclear scan which is brilliant. "
Unless I missed some new, definitive, overriding research very recently, "replaced by Ga 8A" is an overstatement. Last I read just a couple of months ago, each has its own advantages depending on the particulars of each person's cancer, and the only way to find out which is superior is to do both and compare the results. Each can miss some tumors and excel with others, and they won't know which tells them more until after both tests. If someone can update that, please do, as I need repeat scans, too.
What that "The test you had based on 'Choline' lasted just 6 months" means escapes me. The test itself takes < an hour (c-11 choline's half life is 20 minutes, IIRC), and it "lasts" until our cancer advances far enough to warrant further testing. That may take weeks or years. It took four c-11 choline scans scattered over 17 months to find anything definitive in me even with a DT of 4 months, and even then the small lymph node mets they found don't explain my PSA of 52. We're now doing F-18 bone scans to see if I have asymptomatic bone mets that the choline scans haven't found.
OTOH, with PSA = 52 and a DT of 4 months, ADT suddenly became a no-brainer. So far, I haven't felt any SEs at 6 weeks into degarelix/Firmagon, so hopefully we've nipped my advancement in the bud before I have any symptoms. That right there was a solid, unanimous, no-brainer reason to put aside my ADT SE concerns and pull the pin on that grenade.
Definitively the Gallium 68a scan has replaced the choline based one if you can find a centre with the Gallium 68a generator - they cost about $Au64,000... it produces a resolution down to 2 microns ... the best before this was 5 microns. Research is intense in nuclear scanning and the choline based scan effectively had six months before the Gallium 68a turned up which has better resolution AND a short half life ... - that's the period when you are 'radioactive and can harm other people ... especially kids and pregnant women if you get close to them. It is usual to also have a Dexa scan to check the bones.
Cheers, Aussiedad
Docrok,
N of 1; we are are different and react to treatments differently. Unfortunate to be diagnosed at age 57 with stage III with Gleason 4+4, but PSA never above 5.6, I feel fortunate to have been treated with Cryosurgery by a very experienced urologist with thousands of successful patient outcomes. My only alternative was radiation and ADT nearly 200 miles commute. After penal rehab I was back to normal except for less semen. I did have a occurrence thee years later with lymph node cleaning out some micro mets and went on ADT for 9 months until it clearer up and PSA returned to 0.0. Now for near six years I have been on quarterly check ups with urology, but on occasion PSA reminds me cancer is a chronic medical condition.
Speak to your local medical team about active surveillance, I did several years ago and have happy not to suffer the side effects of medication. Best of good fortune!
Pete
Tx Pete for your reply. Yes, each of us are individuals and must deal with our particulars of our Cancer Journeys. Cryo could be done yet if cancer is all in Prostate according to my Urologist. I already have ED and some mild incontinence. I do not want to exacerbate the incontinence, and have been living with the ED for several years now. I do have a steady partner, so not facing that issue head on. Good for you and your penal rehab efforts. I plan Active Sur. and will see what happens with these next batch of results from biopsies. Cancer sure is a chronic condition since I have been coping with it, living with it, for over 15 years now. Best regards Pete.
Hi Beast: Great moniker! Yes, I think Kwon is very informed. he now wants me to do more biopsies. I will see what he recommends after that process. I presume these additional biopsies with verify cancer present. I wonder what the Gleason score will be? Tx for your support Beastie Boy. Doc
Very interesting lecture by Dr. Kwon. I strongly believe in what he said about cancer. Be aggressive in your cancer fight and never give up. Push your doctors to keep the fight up as long as you live. To settle for palliative is to give up and wait for death.
Tx 4835. Not yet ready for palliative. Still engaging and waging my war with the emperor of all maladies. I would use med weed for palliative care if I can score it out here in Minnesota where the rules are very tight, restrictive, and cumbersome for use. Not only battling the cancer, but the govt. bureaucracy's red tape and paranoia also. Tx you rulers of the rights of others! They ever dealt with a life-threatening disease? Such a lack of empathy for the sick and struggling. Big bummer. Trust I will carry on 4835. Tx for your support my man. Doc
U R fortunate to have nurse Mary in your corner. I mistakenly replied that really, I do not have a companion partner right now, so I do this mostly on my own with a "some help from my friends". I will carry on and prevail? Against the emperor of all maladies, I wonder dude? Tx again Pete.
Please don't rule out Hormone therapy. I take Abiraterone and have Zoladex injections. I jog 10 miles a day and have a largely vegan/vegetarian diet together with assorted supplements.
My condition diagnosed in Oct 2013 with PSA 620 and widespread bone metastases. I have also had Radium 223. I feel great and do everything that I want to do.
The only side effect is the sexual side of things which has disappeared. For me that is a price worth paying.
Best wishes.
Niall
I don't know. I saw a video of Dr Kwon discussing "oligometastatic cancer" (available on YouTube). He looks like an awesome doctor and Mayo is the best there is. I only wish I had access to that level of care.
Mayo may be ranked tops, but that's debatable. All Kwon prescribed for me was the same Lupron + Taxotere + Prednisone crap I can get down the street from my house. And as far as access is concerned, Kwon is just a phone call and a plane ride away. Still, I chose a prostate cancer medical oncologist in a city and state I vowed in 1984 never to set foot in again, and he's two plane rides away. No regrets yet.
Hello Mr. Its_Baaaack; Tx for your note. I am moving onto the U. of Mn. in Minneapolis for another type of imaging test. Kwon likes the C11 Acetate at Mayo. It may be 60% or so conclusive I read. Now going to get the Auxium Pet Scan next week at the U.of Mn. Auxium measures amino acids in the bloodstream that Prostate Cancer likes. Auxium was approved by the FDA in May of 2016. Nearest place to the Twin Cities to get the compount is Chicago. Someone there produces the Auxium substance that is injected into us for the Scan to do its readings. Plan is if I can identify where the Cancers is/are, perhaps I can use Kwon's approach of treating specific areas of my body where the PC is emerging. Otherwise only ADT and Chemo await me and I am not interested in that kind of systemic therapy yet. Oh were are the Immunology scientists for developing an Immune Response format with fewer side effects and complete ablation of our Cancers? This is the plan Stan! Time will tell its helpfulness or not. Docrok
Re: "Plan is if I can identify where the Cancers is/are, perhaps I can use Kwon's approach of treating specific areas of my body where the PC is emerging. Otherwise only ADT and Chemo await me and I am not interested in that kind of systemic therapy yet."
Nor was I, until Dr. Kwon walked in after my fourth round of c-11 choline scans with a grim look on his face and minus his usual kidding and informed me that I was beyond whac-a-mole due to too many tiny specks of mets, a PSA near 50, and a doubling time of 4 months. He, then the Seattle counterpart to the Mayo Clinic, then my local med onc, then very emphatically Leibowitz of Los Angeles said, "You NEED systemic treatment beginning with ADT ASAP."
Leibowitz added very persuasively, "Get on that right away and begin chemo as soon as further tests rule out complications that may change your prognosis and treatment dramatically."
Despite my 12 years of staunch resistance to ADT and/or chemo, he and my numbers changed my mind. I'm now in my 3rd month of ADT and second month of chemo (about 18 drugs altogether) with great results and no SEs. Like many of his patients, I walk out of my chemo infusions feeling better than when I began, and I had/have no symptoms yet. I have a spring in my step as I walk at 4-5 mph through the streets and airports just because it feels good the whole afternoon and into the night after my infusion. I might be feeling a little fatigue now, but it's nothing like what I hear from men getting 75mg of Taxotere/docetaxel all in one massive, institutional, habitual (the number 75 came out of thin air decades ago) overdose every 28 days.
Tx for the feedback dude. I know the routine from others and will wait and see what the Auxium test yields. Curious that it took U for C11's to finally find the mets in your system. Hmmm. Glad to hear U R handling the SE's so far in that they are minimal. More decisions ahead buddy. Tx for your feedback. Docrok
It took 4 sets of scans to find a "hot" node because only c-11 choline spotted them and they were too small to be definitive until my PSA topped 45. Even the c-11 choline could not see what may be the main source of all that PSA ... an 8 mm spot in my T6 vertebra. If ADT and chemo shrink it, it was highly likely a PC met. If not, it's probably an asymptomatic old injury.
Dear W. Peddie: Tx man for your shout out. I know, I do feel very grateful that Kwon is in my neck of the woods and is accessible. My case is curious in that after 15 years of living with PC, my cancer is still just getting started outside of the capsule. In my right seminal vesicle only so lightly. His next advice is to get a biopsy, ugh, of my prostate again and that right seminal vesicle. I will be under for this procedure and intubated, which I do not like. Upon the results of those biopsies, I will plan my next move which could very well be active surveillance. I will see. Keep in touch dude. Docrok
Under and intubated? I know a guy who rode his bicycle to his biopsy, walked out the door afterwards, and put in a normal day at the office. I don't own a bike, but it was a simple pit stop out of an otherwise ordinary day for me, too.
Hey Doc, I'm in the Twin Cities and have just finished adjuvant radiation (after surgery about six months ago). I also enjoyed the Youtube presentation by Dr. Kwon. I like his aggressive approach and would definitely like to see him at the "appropriate time." It seemed like he only takes patients who have gone through the full cycle of treatment options and have failed them all. Yet, it sounds like you don't fall into this category if you haven't done any ADT. Is my understanding incorrect? Do you think he would see me if my PSA starts to rise but I have not yet started chemo? I'm on ADT, and it's not so bad, but I do fear chemo and would love to avoid it unless it's in combination with something else under the guise of curative rather than palliative. I'm currently being treated at the U, but I don't love the medonc that they referred me to initially so I'm open to a change. As of now, my treatment is still being led by my urologist (Dr. Konety), I suppose because my post-surgical PSA is at 0.05 and not high enough to warrant a case transfer to a medonc.
Re: " It seemed like he only takes patients who have gone through the full cycle of treatment options and have failed them all. Yet, it sounds like you don't fall into this category if you haven't done any ADT. Is my understanding incorrect? Do you think he would see me if my PSA starts to rise but I have not yet started chemo? I'm on ADT, and it's not so bad, but I do fear chemo and would love to avoid it unless it's in combination with something else under the guise of curative rather than palliative."
I had no problem seeing Kwon when my PSA began rising 9-10 years after my surgery. No ADT, no RT ... just a number on a lab slip. No one considers chemo curative, but it can surely give us time to die of something else first, which is a blessing considering what PC does to us in those last couple of years. My chemo, BTW, hasn't been noticeable -- i.e., no side effects -- yet in my second month. I'm just now getting some fatigue, but I can still bust my butt in the gym, and suspect the fatigue is from the ADT more than the chemo. I also suspect the freedom from SEs is due in large part to the chemo protocol Leibowitz uses.
I gotta ask ... do you let your tire shop overhaul your air conditioning or electronic transmission?
I even vet my oncologists (definitely plural) carefully before obeying their advice. I have an excellent urologist, but he keeps reminding me that he is no substitute for an oncologist. He considered getting board certified in oncology, but decided it wasn't worth the extra years and expense.
Yes, I am heading for a Medical Oncologist, I know a few here in the Twin Cities, should I proceed ahead with some form of chemo, or ADT. Time will tell. Doc
Hey Cfrees1. U R in the Twin Cities cool man. I would like to talk to you further to try and answer your questions. I also run two prostate cancer support groups here in the TC. One at the U. of Mn. on the second Thursday of the month, from 6-8pm at the Hope Lodge at 2500 University Ave. SE, Mpls. Our next scheduled is 10/13/16. Konety is coming to be with us on 11/10/16. U ought to come by in October so that we can meet and U can check out the U. of Mn. Prostate Cancer Support Group. I hope to see you at these meetings. Very supportive and educative and interactive, all the right stuff my man. Doc Rok
Update from doc rok. I am going to Mayo and now plan to have my seminal vesicles and 18-20 lymph notes in a surgical procedure. The incision will be like an open radicalprosctetomy. Anyone who has had the open, can U tell me the recovery process, how much pain, how the healing process goes, time frames etc? Please write so that I can respond and get info. on healing after this procedure. Tx men
I'm sure the aftershock is HIGHLY variable and personal. I'm comfortable without drugs for a colonoscopy or EGD or prostate biopsy, the next guy swears they hurt like hell. I felt like playing football a month after my RRP, some guys do not (tip: DON'T EVEN THINK ABOUT IT!) Another tip: Do not even try situps or crunches during recovery (of course, situps and crunches are both useless and harmful for ANYone of ANY age, so skip them altogether ANYway, but here they HURT.)
AT 3+3 IN 2001, most people today would say don't do anything. Wait. So you had radiation. Ok. Now you have had seeds implanted. Kwon will certainly give you better advice than anything I could give you, but I would say - if you feel you need to do something, then do ADT, and use estrogen patches to control the main side effects - hot flashes. If you dont like it after a month then stop.
True that ADT is a serious medical step. But a few months of it, I dont see as any serious medical problem.
Tx for the feedback Martingugino. Still trying to figure out things here. No ADT yet. Looking at Proton Beam Therapy at Mayo and they want me on Firmagon for two months, b-4 25 treatments for three lymph nodes in mid-section of my body. Auxium Pet Scan found those three as possible culprits in my ongoing living with PC. Tx for checking in. Doc
Dismal stats, don’t adhere to those.. He can do much better.. so many are beating the stats. No magic pills. We all suffer. Our loved ones , as much as the patient... we hang in , as long as we can.. you’ve been at this far longer than I. A lot to comprehend and much of our plight is uncomprehendable to those outside APC.. prayers to you !
6 weeks after radiation my PSA is still rising
Still here today
mcrpc , stage iv with aggressive treatments
Good news from visit at Mayo
PSA vs PSMA
