Recently, my Urologist's office contacted me, asking why I'm cancelling scheduled visits. Told them the "active surveillance" strategy failed miserably after year 5, my pelvis MRI looked like scrambled eggs when PCa diagnosed (Dx) with PSA 1000+, your office only recommended radical prostatectomy (RP) as an option. Then, to my luck, my second opinion, a Dana-Farber Urologist doubled up on RP - as the only way, dumbo me, both are surgeons.
So, does anyone think should resume seeing my Urologist? At least still have my prostate...
I had radical prostatectomy and for me it was the right thing, but now there are so many different radiology options you might want to see a medical oncologist and radiologist before making your life changing decision.
The role of the urologist is to make the diagnosis and a prostatectomy if indicated. The urologist could also have a role if there are local complications in the urinary tract caused by the cancer. You should consult with a Medical Oncologist specialized in prostate cancer and with a radiation oncologist . The continuity of treatment should be handled by the MO. If a prostatectomy is not indicated you do not have to consult with the urologist.
I agree, but my question, why would an Urologist claim I need consult by practice. What benefit will a patient with prostate cancer metastatic disease have with an Urologist Care?
You do not have to see an urologist unless you have urinary problems or you are contemplating to have a prostatectomy to control potential local complications in the future. The lupron treatment , new anti androgens, chemo etc should be administered by the medical oncologist.
Yes, totally agree, my specific question, why would this Urologist claim I need to visit him.
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$$$$$
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Exactly, when was referred to my "first" Oncologist, the Urologist made a quick schedule for getting a 6 month Eligard shot!
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I’ve had few years clear . I had pain in my RT site called my uro they said talk to your GP. They don’t want to see me. The6 hav3 a “ New” group arriving daily to keep them busy. Take care NYMets
I continued with my Urologist because after 42 radiations I had urinary problems with incontinence. At one point I had to use a catheter to urinate. Also I had urine just drip out (not a steady stream). I have had to have 2 operations where they opened up the opening at the bottom of my bladder. I go back now that I no longer have prostate cancer or bone cancer because I take two medications - Flomax and Myrbetric. My urologist found the cancer in me and I used him as a second opinion.
Lupron, when prescribed, is usually done at the urologist office. That is one reason to see one. Of course problems with peeing, bladder etc are other reasons. Obviously you don't like your old one. Find a new one for future reference. So you are metastatic but not on Lupron?
I'm a little perplexed at your stating that you were on active surveillance ? and progressed to a PSA over 1000 ( am I reading this right? ).... Did the urologist not suggest active Tx during the progression TO this PSA level??..... I feel I must be missing some thing here...
A little over 6 years ago, from a routine physical, PSA 5.8, so my GP referred to an Urologist, got all the scans and biopsy findings - Gleason Score 6. The Urologist recommend radical prostatectomy (RP), actually started to schedule it!
So, after some research, discovered that Gleason Score 6 was not considered cancer. And, at the time, Urologists were criticized for over treating prostate cancer. Consequently, went to Dana-Farber for second opinion and consulted an Urologist and Oncologist. Both doubled up on RP, I just didn't want the surgery option, 51 years old and recently married for the first time.
So, with the first Urologist, elected for "Active Surveillance", after about 4 years of scans and biopsies, the surveillance visits become every 4 months apart, with some skips in between, because of no progression.
The last few years of "Active Surveillance", were not active at all, my bad, spending most of my time in the Philippines.
Then, all of a sudden, no early warnings, became incontinence, weird, was not gradual. Urinating was painful, burning sensation, semen full of blood.
Called the Urologist and explained the symptoms, got a visit next day, then a message the following day from the nurse: "The doctor needs to see you urgently".
Well, skipping the drama, was shown the labs, PSA 1000+, eventually, the pelvic MRI revealed extensive metastasis, large tumor extending from prostate invading bladder wall.
Oh, interesting note, when prescribed Casodex, amazingly in just a few days, all my symptoms rescinded.
THAT is one very unfortunate story...I'm sorry. I completely understand you're reasoning for choosing not to undergo RP at a Gleason 6. What distresses and disturbs me is that what happened to you flys in the face of other things I've read about the indolence of Prostate Ca.... how many years did you let it go without surveillance while in the phillipines??.... I worry too because it sticks a monkey wrench in my own thoughts about letting my current situation just play itself out without treatment.... any one ever offer an explanation re: how such a " non " cancer metamorphosed into an aggressive killer over , what seems, a relatively short period of time?? It sound as though your PSA was not rising precipitously as you were actively surveilling........ Would you have done things differently if you had it to do over again ( besides, of course, not allowing the time to pass with no surveillance).... Big decision to treat G6 aggressively when one has just gotten married.... again.... really sorry about your story...
If you are not having urinary issues, then see the MO and/or an RO....If you are at Dana Farber Urology then lose the local Uro.....I will not bother going back to mine....he was a watchful waiting MD and after I had my biopsy, I had sepsis....he insisted on cipro for the biopsy and there is a lot of E coli resistance to cipro...I do wonder if my stage 4 started courtesy of the sepsis...matters not now... I'm in the scrap of my life and do not feel he can add much...his response to my positive axumin scan was ---we'll get you on Lupron and you'll be around for years...glad I listened to MO and got started on zytiga...your choice..
Absolutely, I'm totally self-referred now, if don't like Dana-Farber RO, then plenty more around the Longwood area and MGH.
I like my Dana-Farber Oncologist, Mark Pomerantz, whatever question I ask, he jumps all over it, although will be interesting once he sees the notes with Dr Bob's office. I'll detail this in another post.
Oh, by the way, did your wife sent out the dinner invites?
No one for dinner for a while...we just made it official and got hitched on April 14th after 8 years together...she is my best friend, my partner, and my love...like Jhazph is yours... one day, perhaps....dinner...the lamb stew or cutlettas... we will not go wrong either way...
She sees me laugh or smirk about something when I am on the laptop, and says, "Are you on that forum again?" "Are you chatting with LuLu?"...I just laugh... she is easy to get along with...her anger is always short lived and 5 minutes later....we have found middle ground and moved on....beats my ex-wife every day and twice on Sunday....ROFL...now there was a woman that could stay angry...
Read it again and laughed again---who says old jokes aren't funny?....getting like my grandfather, he would keep old magazines and read them again...when my Dad asked why, he said,"I forget, and when I read them again, it's like news to me." Have a great week, funny guy...
i started out with cancer nw and at least one of my oncologist was worthless. i switched to a combination of urologist and oncologist and he knows more then these docs from cancer nw by far.
I still see my uro every three months to get a cystoscopy to check for recurrence of bladder cancer. The MO handles all the prostate cancer treatment including Lupron.
Happy to say there's been no need for subsequent DREs. I suspect he's no more eager to give me one than I am to receive it! Speaking of DREs, the most amusing advice I've heard is to choose a female urologist because women typically have skinnier fingers than men.
and now for a bit of humor....knew a Gynecologist and he remarked to me,"It ain't love unless you take off the glove !"....Interestingly, his wife was a former patient...
There are some that require a third opinion...So Greedy !!!
Fish
Bailed on the Urologist and went a RO then MO once metastatic. Didn’t need another Urologist until 13 years later to check on stones. My RO and MO handled any urologic problems.
my urologists staff would not greet me with any eye contact unless I had check or credit card in hand for the co pay. The final blow came when they no longer took Amex cards..
We stopped going to the urologist. The experience we had with two urologists was it appeared as if they were not current on modern strategy. They both suggested we not see an MO; we should wait until Lurpon failure. They also suggested Lurpon only for metastatic PCA. Thanks to this site we went to two MO's and both suggested adding Zytiga+Prednisone.
We are regularly seeing our Uro for quarterly shots of Eligard and these days more often than usual because of urologic problems and pains which he says are coming from the nerves surrounding the prostate. And yes he likes doing that nasty DRE too!
I have stage 4, prostate cancer and have not seen a urologist in over 2 years, if you have issues urinating then by all means visit an urologist. l take Flomax twice a day no issues at all todate, both of my O's say not necessary. 7
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Anyone have an opinion on this issue as I prepare to see a MO?
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