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Should i see my surgeon?

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Posted 3/6/2018 4:43 PM (GMT 0)
I have been doing follow ups with my surgeon since my RALP 3 years and 3 months ago. First it was every 3 months, then after a year, it was every 6 months. Then after 2 years PSA started creeping up so back to every three months, ALTHOUGH i haven't seen him since November, nor have i checked PSA since then, mostly because I DONT WANT TO. I'm ini Florida for the winter and dont want any negative s hit in my brain until i get back to NY.
My PSA "progression" from 2 years of <.02 has been: .02, .033(new lab), .033 (3 months later) .046 (3 months again, in November)

At .033 i saw RO, who told me that i may or may not be recurring, and to see him if and when i had a clear trend. He did an MRI for baseline, it was clear of course.

So thats where I'm at. I am leaving for NY around March 20th and will get my PSA checked around end March 1st week April. I WOULD normally make an appointment with Tewari (my surgeon) for a day or two after the PSA test. I was about to make the call, then started thinking about it.

So my question is- do i really need to keep seeing him? When i see him, its always the same conversation. "We dont do anything till .1, and then we do imaging (why). How is your continence? Fine. How is your erection? FINE. Come back in 3 months. Dont worry. Exercise, lose weight. Your psa is still very low. And your Decipher score is low so BCR is not yet a foregone concclusion. "

On the one hand, whats the point. I feel like its a waste of my time. On the other hand, if i stop going to him, realizing that his work is done, i feel like I'll be out at sea, alone. I dont really have a relationship with the RO yet, i dont know what he means by "a clear trend". (SURE I SHOULD CALL AND ASK). I'm guessing one more rise is a clear trend.

I would essentially be my own doctor.

So i'm just putting it out there for comment
Posted 3/6/2018 5:13 PM (GMT 0)
I'm gonna give ya a gutsy call...take a year off from pca period...docs oncs rads uro...live free...then take an ultra psa test...the results will be definitive...and your mortality will not suffer...it will actually be stronger...true release from the fears will work wonders...you asked and you know what...I would only share the year with those very very close to you...but that advice{the share aspect ,,,not the vacation from pca} may be a bridge too far... I go there at times... " let your yes be yes and your no be no...anything else is of the evil one"....circa the common era... Off to the gym to say yes to life in all it guises...
Posted 3/6/2018 5:45 PM (GMT 0)
as far as PC goes, I think you're done with a surgeon. Honestly, you've been your own doctor for awhile.

General heath and stuff (even PSA tests) can be managed just fine with a PCP.

Your next PC treatment would be with the RO, so I'd just be checking in with the RO if your PSA rises.

That's what I would do anyway.
Andrew
Posted 3/6/2018 5:57 PM (GMT 0)
My situation is completely different I realize. I had radiation, you had surgery. Increases in my PSA can be from prostatitis, radiation irritation, and the other usual benign causes which dont apply to you. We both share the concern that the increase can be from recurrence.

I decided to take a PSA holiday in 2017 after my PSA had fallen to .75 after bouncing to 2.56 six months prior. It was more relaxing than I had imagined it would be. I loved putting it out of my mind. I cant do that with a test every three months or even six months. Then, after twelve moths off my PSA had increased to 1.41. Another bounce—I dont know. I'll see in April what it is. I have to wonder if I made the right decision to wait. Knowing what it was in July 2017 might have some value.
Posted 3/6/2018 6:28 PM (GMT 0)
I agree with Andrew's comment, which was well put. (Although not in the form of a poem...)
Posted 3/6/2018 6:45 PM (GMT 0)
I agree with Andrew too - the surgeon's work is done. Unless you have a urological problem, what do you gain by seeing him? When he says, "We don't do anything till .1" - my reaction is-- who's this "we"? The urologist never does anything beyond surgery -- it's not his job.

A clear trend means at least 2 consecutive rises over 0.03 (you've had only 1) or an increase of at least 0.05 in a year. Also when deciding if an increase is really an increase, leave some room, say ±20%, in a measurement for random fluctuations. If it is a borderline trend, give it another 3 months to see if it's real.
Posted 3/6/2018 7:28 PM (GMT 0)
Prat:
Your surgeon has served his function.
Time to build a relationship with an RO; hopefully you will not need his/her services.

Mel
Posted 3/6/2018 8:59 PM (GMT 0)
Do what I do. This has worked well...

My only urologist visits ever have been PC-related. I've had no reason to see my uro-surgeon since he "released" me a relatively short time after surgery, and I haven't been to his office since then (roughly speaking 9-years since surgery, 8-years since I've been to his office; the office is about 35 miles away). His office used to send in scripts to Quest for me to go in to a nearby facility for monitoring tests; the Physician's Assistant then emailed me the PSA result. After about 2 years (about 7-years ago), I pointed out to the PA that I had blood work done by my internist for my annual physical...why don't I just do the PSA test then? The PA said that the surgeon's office wanted to continue tracking my (and all patient's) PSA results, so we agreed that after my annual physical I would simply email the PA with my results. I get the blood work done about a week before my physical, and I review all the results before walking into the internist's door. Been doing that ever since.

I would suspect that your surgeon is also interested in continued tracking of your PSA (and all his patients' PSA); you could ask...but his work is done.



BTW, I'm aligned with your subconscious associations:
...FL=good
...NY=bad

Post Edited (NKinney) : 3/6/2018 3:01:23 PM (GMT-7)

Posted 3/6/2018 9:19 PM (GMT 0)
I still go to my surgeon for the simple reason I get my PSA results 45 minutes after the blood draw. It's funny how I get asked the same questions: Incontinence? Erections? When he asks me about my erections I always reply, "Wasted".
As far as your situation, I would get to know an RO just in case. Good luck.
Tom
Posted 3/6/2018 9:28 PM (GMT 0)
Prato, I agree with what most of the other guys said...the surgeon is done. Get your PSA tested regularly by yourself or PCP and then move on to a relationship with the RO if you have concerns.

BTW, hoping the trend reverses so the discussion is moot.

Jim
Posted 3/6/2018 9:29 PM (GMT 0)
I'm kind of on the same plan as NKinney. After my follow up with my surgeon to discuss my path report, I had two more follow ups via conference call to talk about my progress and PSA numbers, and then he cut me loose "as long as I have no concerns." I see my regular doc every 6 months for a 'med check' visit, so I've just been having him add the PSA test to the list and all the results are back the next day. I'm supposed to be faxing my PSA results to my surgeon, but I've been slacking on that. I'll try to get better organized after my next visit this month!

I've figured the same thing as others. If I have to get more treatment at some point, It won't be with my surgeon anyway.
Posted 3/6/2018 9:37 PM (GMT 0)
I'll suggest a different route. For me, as my uro was also my surgeon, I've stayed with him in the role of uro. Since he has passed the paliative treatment to the onco, we just keep in touch for uro issues.

In my town, that continued relationship is critical, as it is virtually impossible to get a first appointment with a class-act uro in less than 8-9 months. So I do 6 month appointments just out of general principle.

So I suggest keep a uro in the loop.
Posted 3/6/2018 10:09 PM (GMT 0)
Prato—
I understand the urge to take a PSA holiday, but I wouldn’t do it. You’re close to finding out if you’ve got a real trend, don’t stick your head in the sand. Make sure the next PSA is from the same lab. Seek out an RO, but keep in mind that ROs themselves have a professional bias and financial incentive to favor early salvage. Every doc believes that what he has to offer is the cat’s meow. Always it’s your call.
If Tewari’s office is like Patel’s, he imagines you’ve put yourself completely in his hands unless and until he determines you need further treatment. For some patients, this paternalistic, omnipotent attitude is probably a good thing, because otherwise they wouldn’t get regular post-RP PSAs or other followup to see if the PCa has recurred. They’d go on their merry way until mets pain. For such patients, there’s an upside to aggressive post-RP control by the surgeon. The downside, for folks like us, is that the surgeons don’t pull the trigger until 0.2 or higher.
Posted 3/6/2018 11:02 PM (GMT 0)
at this point you can probably get in to see your surgeon with a phone call anytime you want to. (or at least I can) You've got him in your hip pocket if you ever needed him for anything again.

While I understand the feelings of being alone during this possible transition period.....you're really not. You actually have more options and care....not less....by seeing the RO

but....then again....feelin's are feelin's

good luck

With me.... the feeling of being alone is intensified by breaking an established structure....and knowing the reason that I'm having to do that....it can put the fears in one's face by making things more real

Post Edited (island time) : 3/6/2018 4:34:50 PM (GMT-7)

Posted 3/7/2018 2:18 AM (GMT 0)
Pull the trigger, Prado, and move to FL full time. You don’t need a surgeon anymore, just an RO and a physiologist.

You don’t have BCR, you don’t have a clear trend, you’re not “out at sea alone”, and Tewari is correct about you dieting, exercising, losing more weight and...stop worrying/obsessing.

Do start building a relationship with an RO down in FL, you have some good names. Good luck with your next PSA; worrying about it will not help. smilewinkgrin
Posted 3/7/2018 5:14 AM (GMT 0)
Thanks everybody for the responses, I'm going to think about it. I'll call Tewari a office for the scrip to get the PSA done, then I'll,see what the result is. If it's up again, I might just call and talk to the NP about what he thinks next steps,should be. Or maybe just call Zelefsky's (RO) office and ask if I should come in.
The more I think about it, the less unnecessary Drs appointments I have the better. I've got enough necessary ones, I don't need wasteful ones.

@S.P. - Richard, you may have misunderstood, as much as I'd like to skip psa's fir a year, I am not considering doing so. In fact, I doubt I could even if I wanted to. I'm not built that way. Also, I agree most Ro's have a bias toward early treatment. Although I think that the RO's at the major cancer centers like mine (MSKCC) tend to make recommendations that are based more on science.

@Island Time - good point, I have no urologic issues and if I ever did, I could always get back in to see Tewari.

@TA - I have a Feeling that the reason Tewari wants to keep seeing me is so that if I do need treatment, he can keep me in the Mt Sinai system. He's Chief of Urology at the hospital, so maybe he has some vested interest. I do have a lot of respect for him and that does make me think of continuing to see him. I don't consider him a just a surgeon, I consider him a scientist.

Also, yes, I figured this will be a crucial result coming up,as if it's up again, it's 2 rises in a row above .02. However, think I'll be very cautious about letting them put me through SRT due to my low Decipher score and good (although maybe borderline good) pathology.

@Gary - not ready for Florida full time yet. But I might go see Smilowitz next time I'm down here if I can get an appointment (I'm only here for another 2 weeks.)

@everyone thanks again for taking the time to respond

Post Edited (Pratoman) : 3/6/2018 10:17:40 PM (GMT-7)

Posted 3/7/2018 4:13 PM (GMT 0)
Agree with all you’ve been advised.
One thought from visit with Dr. Mychalczak yesterday — he said my psa’s of .10, .11, and .12 each six weeks apart are too low to establish a doubling time. Yours are even lower so maybe trend is not yet clear.
Guess that’s because at these numbers there’s enough variation to put noise into the calculation.
Posted 3/7/2018 8:35 PM (GMT 0)
One thing I believe is this...Prato is not going to die from pca...he quite possibly may not even die with pca...the only thing for sure is...Prato is going to die...and with that he is in great company...with or with out the gnashing of teeth...other than my own advice...which is doubled down...for the record...Garyi's is and has been consistently the best advice for closure since this saga has begun...and I believe Prato would agree...it has the best chance for such closure...but sadly...im not sure{ I could say sure and be equally baffled} Prato would also agree that he may never be free of his not so unique neurosis...like us all...he will fight on....in his own way....that he will do this...is in itself...a victory...this is why...we love him...this is why...I have always seen him as and referred to him now and then as pratoeveryman...how else can one explain his allure....
Posted 3/7/2018 10:25 PM (GMT 0)

logoslidat said...
One thing I believe is this...Prato is not going to die from pca...he quite possibly may not even die with pca...the only thing for sure is...Prato is going to die...and with that he is in great company...with or with out the gnashing of teeth...other than my own advice...which is doubled down...for the record...Garyi's is and has been consistently the best advice for closure since this saga has begun...and I believe Prato would agree...it has the best chance for such closure...but sadly...im not sure{ I could say sure and be equally baffled} Prato would also agree that he may never be free of his not so unique neurosis...like us all...he will fight on....in his own way....that he will do this...is in itself...a victory...this is why...we love him...this is why...I have always seen him as and referred to him now and then as pratoeveryman...how else can one explain his allure....

Logos: Kudos on both of your comments in this thread! Not only do I enjoy hearing about your different way of looking at things than is common, but I did not need an interpreter, which I am thinking i often do. Which confirms to me that you are fluent in more than one language!
Posted 3/8/2018 12:24 AM (GMT 0)
I met Prato in FL in January and could have sworn he was immortal.
Posted 3/8/2018 12:35 AM (GMT 0)
Prato, I second all of those who have said continuing to see the surgeon is not required.

I had my surgery in Detroit by Dr. Mani Menon. I have never been back. They send me a questionnaire once a year so I fill it out and send it back. Other than that no contact.

If you don't have a good relationship with your Onco find another one. The Onco is what you need to lead the team going forward. They will know who to call in for consult if needed in the future.

Also you know that I really echo logo's suggestion to lay this crud down for a while and get on with living the good life ever day.

BTW, lets talk in the next day or so. Since you are still in Florida, I need to drive over to say hello. This weather is great for a Corvette-Top Down-Road Trip right now.

Sonny
Posted 3/8/2018 12:55 AM (GMT 0)
Thanks for the felt...Mrs Calabash...wherever you are...a rhyme of dimensions...let it be...
Posted 3/8/2018 8:07 PM (GMT 0)
Prat-

We used the same surgeon. I also stopped seeing him for regular checkups. As you mention, it became a 3 minute conversation ("How is your continence?", "How are erections?", "See you in 6 months".)

I still go to his office for my PSA check every 3 months since it is near my office anyway.

-Gedman
Posted 3/8/2018 10:48 PM (GMT 0)

logoslidat said...
One thing I believe is this...Prato is not going to die from pca...he quite possibly may not even die with pca...the only thing for sure is...Prato is going to die...and with that he is in great company...with or with out the gnashing of teeth...other than my own advice...which is doubled down...for the record...Garyi's is and has been consistently the best advice for closure since this saga has begun...and I believe Prato would agree...it has the best chance for such closure...but sadly...im not sure{ I could say sure and be equally baffled} Prato would also agree that he may never be free of his not so unique neurosis...like us all...he will fight on....in his own way....that he will do this...is in itself...a victory...this is why...we love him...this is why...I have always seen him as and referred to him now and then as pratoeveryman...how else can one explain his allure....

I understand and agree with everything you said logo. yeah
Posted 3/8/2018 10:52 PM (GMT 0)

Sonny3 said...
Prato, I second all of those who have said continuing to see the surgeon is not required.

I had my surgery in Detroit by Dr. Mani Menon. I have never been back. They send me a questionnaire once a year so I fill it out and send it back. Other than that no contact.

If you don't have a good relationship with your Onco find another one. The Onco is what you need to lead the team going forward. They will know who to call in for consult if needed in the future.

Also you know that I really echo logo's suggestion to lay this crud down for a while and get on with living the good life ever day.

BTW, lets talk in the next day or so. Since you are still in Florida, I need to drive over to say hello. This weather is great for a Corvette-Top Down-Road Trip right now.

Sonny

Sonny, I assume you mean a Radiation Onc, not a Med Onc

Post Edited (Pratoman) : 3/8/2018 4:10:59 PM (GMT-7)

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