I had a RP/PND 5 years ago at MSKCC (Dr. Touijer). I had called up cold and was given an appointment for an MRI, followed by a TRUS biopsy (Dr. Ehdaie); everything followed from there.
Now, my twin brother presents with an elevated PSA, and wants to be evaluated at MSK. He calls and is told they will NOT schedule an initial visit without a PRIOR DIAGNOSIS OF CANCER (!) Has anyone heard anything like that--that MSK wouldn't do an intake for a workup? Of course, if he goes elsewhere for a biopsy, for sure MSK is gonna want to repeat it anyway. My brother is not exactly a shrinking violet, so I'm not sure why he's not doing a tapdance on their heads over this. I've already called Touijer's office, and they seem to know nothing about this apparently new policy.
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dentaltwin
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He was told basically to get worked up--somewhere else. I doubt he asked specifically about getting an MRI (though that was step 1 for me--I had requested Touijer as my surgeon, and I can't remember whose office wrote for the MRI. I was sent to Ehdaie for the biopsy because he could get me in sooner. I had originally asked for Dr. Scardino, who had been the chief, because he'd done my kid brothers RP (open) several years before; I was told Scardino could do my biopsy but he wasn't doing surgery anymore. When I asked why, I was told he'd developed Parkinson's disease, so I said, "OK, maybe you can find someone else for the biopsy."
Of course I've told him what I learned from my experience--and what I've learned here. Of course, it's not a foregone conclusion he has cancer, but...he was the only first-degree male relative of mine that hasn't already.
If it comes to that, I'll certainly tell him to do another 2 things I didn't--first to send his slides to Epstein at Johns Hopkins, and to get a consultation with a RO at MSK. Whom do you like at MSKCC for that?
Sounds odd. I can tell you if he has a biopsy elsewhere they will want to review the slides but should accept them. At least they did for me. I had the biopsy at NYP but ended up being treated with radiation at MSKCC.
Send the the slides to Epstein but his and the MSKCC analysis were nearly identical both were a significant downgrade from NYP.
Hmm--thanks. So MSKCC had their path look at the slides? Good to hear they accepted the outside biopsy. They made a big deal about the "fusion" biopsy--maybe it's become SOP in most medical centers. My brother has an appointment with someone at NYU in about a month. For sure I'll urge him to try and get a transperineal bx if needed. How long ago were you treated?
That is exactly how my husband ended up at NY Cornell, they would not see him with just a high PSA of 864.42. They wanted a biopsy first, So, Cornell jumped threw hoops for us by getting my husband in and did a pet scan, mri, Ct scan and bone scan and started him on a hormone within a week, transperineal biopsy within two weeks, Added the second hormone within a month he started Docetaxel Chemotherapy of 6 sessions. He is Oligo Metastatic and had an RP with LNPD. He had Germline and Genome Testing as well.
Maybe try Cornell Dr Tagawa and Dr Nanus are excellent. More information in Bio
Interesting. My dad was diagnosed maybe over 20 years ago with a PSA of 5000 (!) They didn't bother with a biopsy, just did a bone scan (lit up like a Christmas tree) and put him on ADT, to which he responded very well.
As others have posted, I had my biopsy done by my urologist in his office. He used his lab which came back with their findings. Then I went to MSK and they had their pathologists study the slides and my RO wouldn't make any determination until their own study of the slides was done. They came back with some differences, were more precise.
But I do have a friend who had the biopsy at MSK, but went to their Sidney Kimmel Center for Prostate and Urologic Cancers on E 68th street. A different building from where the ROs and treatments occur. I'm not sure of the doctor he used, but I remember it was a urologist there. This was in the December of 2021, so it's possible policy changed. On their website they say they offer prostate cancer detection, screening, diagnosis.
Yes, I went to MSKCC with only 2 sequential elevated PSA readings, followed by MRI and biopsy, then surgery (yes, at the Kimmel Center). But that was 5 years ago, and their policy has apparently changed.
I had the same experience 12 years ago. Elevated PSA and MSK would not see me without a confirmed diagnosis. Had mpMRI at NYU and then a targeted biopsy which was negative. Then had a 14 core biopsy at Mount Sinai which was positive. At that point MSK did see me and they used the slides from Mount Sinai. Ended up having surgery at NYU.
Before I was actually diagnosed with G6 prostate cancer and was only dealing with "indicators" (high PSA, PIRADs-3 MRIs), I was only seeing a urologist there (Dr. Sogani). His office read my PSAs, set up MRIs, biopsies, etc.
After I was diagnosed with G6 cancer and went on AS, I was able to make appointments with Dr. Ehdaie, Dr. McBride, and Dr. Zelefsky.
It might be that those very specialized doctors (Ehdaie, Dr. McBride, Zelefsky) are so busy and in-demand that they have to restrict their new patients to those who already have a positive diagnosis.
This may be true. I've noticed that it's jammed up there. For my RO they're backed up, the wait with an appointment is well over an hour. They also lately have seemed to be pushing everyone onto seeing only the nurse practitioner--instead of alternating every 6 months with the RO and NP. I know because they did it to me and I pushed back and said I want to see my RO. Then in the waiting room I met a couple of other guys for whom they tried to do the same thing.
Oh, I've had to wait quite a long time down in that dungeon. But since the pandemic most of my visits have been telehealth. And if I'm still undetectable next visit (fingers crossed) I only need to check in once per year.
Could be. How long ago was your diagnosis? As I said, I had no difficulty being worked up there, but that was 5 years ago, and their policy may have changed. My brother did not make his initial call asking for a particular surgeon.
I'm a longtime graduate (and current paYtient) of the MSK school for Pca (22 years)....I have always been told that if you haven't been declared a paYtient with full blown Pca try again when their not so busy......Don't hold your breath waiting,,,,
Hello, I've just been diagnosed with prostate cancer. Have had BPH for one year prior to this. I don't want to go into my story but a surgeon at a top hospital is recommending robotic radical prostatectomy. I am feeling really depressed and scared. You mentioned you had RP, which I'm assuming is radical prostatectomy 5 years ago. Can you tell me your experiences and if your sexual and urinary function returned and if not how close to normal they are? I'm just beginning this journey and want to get a lot of information before making a decision. Thank you very much, I really appreciate it.
Please remember that my experience has been my experience; yours may be different, and you will hear many different stories here. You will find that the advanced prostate cancer newsgroup is by far busier than this one. That definitely does NOT mean that most PC patients eventually wind up there; in fact the majority of localized PC patients go on with their lives and move away from these mailing lists eventually. I'm one of the few that has stuck around. One other is Allen E, who posts as Tall_Allen. He is not a medical professional, but he has collected an astounding amount of material about diagnosis, treatment and prognosis. If you have specific questions you can be fairly sure he will come in with useful and germane information.
With that disclaimer, this is a summary of my history. My dad had advanced prostate cancer at diagnosis. He is gone, but the PC wasn't the immediate cause of his death. My younger (by 7 years) brother was diagnosed several years before I was. He is doing well over 10 years later, although his PC had some high risk features. He also had an RP--done open. I was diagnosed at 66. I had a fairly large cancer on both sides of my prostate, mostly along the base, adjacent to the bladder. My initial MRI was read as PI-RADS 5, "suspicious for extraprostatic extension. My biopsy was unacceptably painful. I should have yelled and screamed, but I did not. My surgery, on the other hand, laid me up less and with less pain than I expected. My surgery was laparoscopic, but not done with a robot. The suggestion of extraprostatic extension was not confirmed with postop. pathology. I think I took a week to 10 days off work (I'm a dentist, retired now). The worst part was living and sleeping with a catheter and a bag for a week. I think I may have taken one hydrocodone, but I wanted to avoid the nausea and constipation it could cause. (The surgeons and PAs recommended I avoid NSAIDS too, probably their fear was bleeding--personally I doubt it would have been a problem). I was pretty incontinent for several weeks, and wore diapers and pads maybe for 3 months. After about 3 months I was more or less continent. Occasionally I leaked, and I had to stay closer to a toilet for some time. I still get up to pee once or twice a night. I haven't considered my continence to be a problem for a long time. My sexual function was something else again. My surgeon told me postop that he'd spared the nerves on one side and partially on the other. But my erections have not been the same. During my recovery my wife was being treated for lung cancer. We did have sex occasionally, though I was seldom hard enough for insertion. She died about 2 1/2 years ago. We were both older, and while ED at my age is hardly rare, I'm sure my sexual function has been impacted. Tall_Allen will advise you to consult with a radiation oncologist, and I agree. I might have gone for the surgery anyway, but that was (I'll admit) mostly an emotional decision. I believe that on average, impact to sexual function tends to be less with RT, but that's just an average. I had a patient who had had RT for PC some time before my treatment--he as well had significant impact on his sexual function. Treatment success for localized PC is about the same in the hands of good doctors.
If you have specific questions, you'll get more responses if you start a new topic. Good luck to you!
Thank you for being so frank and open about your situation. At this point I'm trying to assemble all the info I can to get second and third opinions, I will post again when I have more info, thanks
I asked him about active surveillance but he said you could do that but he would recommend surgery, this was actually the regular urologist but I'm going to see an oncologist urologist.
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Your thoughts - treatment plan
Lupron in my future
55 and prostate cancer - Scared shitless
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