A sad developing case : PSA 7 (6 weeks after robotic prostate surgery)--advice needed
let me first summarize my situation, then make a list of questions and
comments, followed by some detail info, which you may not want to read.
Would like people to comment --from those who have similar situation and
survived (what they did, what works for them, etc.) as well as those in the
medical field (unfortunately, those similar to me who did not survive will not
be able to contribute, but perhaps their spouse/family/friend could comment)
Any suggestions on experimental drugs/treatment would be welcome, especially if
these have brought some good result.
-------------synopsis of my current situation -------------
6 weeks after my robotic prostate removal surgery on my 65th birthday (October
9 2009), my PSA level was found to be 7 and 6.4 (retest).
The next steps (my surgeon requested) bone scan; followed by CT scan fused with
prostascint (look for soft tissue metastasizes); then hormone treatment (Lupron)
which will hope to keep cancer at bay for 5-8 years (IS THAT REALISTIC ??).
Option of radiation treatment at prostate site 6-9 month from now (WHY NOT
SOONER ?? he said to wait till recovery, including incontinence/impotence/etc.
). Is that the best treatment ??
My prostate surgery was due to Gleason 7 (4+3) biopsy on Aug., 2009 triggered
by a 4.2 reading in April 2009, on PSA (doubling time of ~2 years, I
believe). The PSA just before surgery was 6.7.
The surgery post-mortum was Gleason 7 (4+3), T3b, right seminal vesicle
cancerous (removed), Surrounding tissues removed. Adjacent lymph nodes removed
but not cancerous. (I sort of wish that once spreading was confirmed, he could
have switched to open surgery to remove more surrounding tissues and to examine
a larger area--but that was not done; I thought that this switching is fairly
common, correct or not ??). Of course, if there were global spreading, then
this would not have helped.
---------------------Questions, request for comment -----------
(0) Is Lupron the best avenue for me right now ?? Should I have radiation
treatment ASAP (Impotence is not important for me ) ?? Are there any other
better options ?? are there experimental treatment/drugs that I could partake
??
(1) I guess robotic choice may have been a mistake. From my web investigations
--many hours; Google is very frustrating to use, giving 80+% useless links with
general repeated info, and only a few good sites, which one have to skip to the
important parts --prior to surgery, Robotic is recommended for Gleason 6 but
for Gleason 8-10, Ope is recommended (for the reason like muy case) but Gleason
7 if in the borderline. I should have realized that 4+3 =7 Gleason is actually
like Gleason 8 --and opt for Open. BTW, Radiation would likely have been a bad
choice, since it will likely not remove the cancer in my seminal vesicles (is
that correct). Of course, Global spreading might have taken place, so it
probably did not matter.
(2) My wife berated me for waiting 7 weeks to do surgery after the biopsy
results --and claimed that the spreading might have been due to the
waiting--but my surgeon said that almost certainly the spreading occurred at
least 6+ months (perhaps even years) before the biopsy. Is he right (or is my
wife). Actually, it took me one week to make up my mind, the I scheduled it for
the first available slot, which was in 6 weeks. My medical treatment was
thorough a large (200+ physician) medical group with my HMO--and I had been up
to now quite satisfied with my medical experience. Should I look outsode for a
2nd opinion and perhaps treatment ?? Can someone recommend someone/somewhere in
the Chicago suburbs or perhaps the city ??
-----some more details ---------
(1) I have a family history of Prostate and other cancer --My father and his 2 brothers all have cancer. Father had it at 85 (watchful waiting) and died at 90 not of Prostate cancer. Middle brother had brain cancer at 62 and died a long time ago. Youngest brother had cancer at 75 (Gleason 6), radiation treatment, and is doing fine after 4 years. My 3-year older brother is so far fine.
(2) I have other medical problems --high cholesterol (family) controlled by statins (Zocor/Lipitor/Simvastatin) since 10 years. Pre-diabetes controlled by Metformin since 4 years (A1c 6 to 7). Otherwise reasonably healthy but overweight (I do do exercises, and try to eat healthy).
(3) Incontinence recovery is slow (some control, but still on diapers and
pads). BM is fine (thank G...). Impotence not yet recovered (but not important for me) .
(4) PSA history 0 (2000), 2.6 (5/06), 3.6 (5/08), 3.9 (12/08), 4.2 (4/09),
6.7 (10/09)--after Cancer diagnosis. Based on the 4.2 PSA, my primary doctor refer me to a urologist because he does not like the velocity (doubling rate of about 2 years) --which lead to a biopsy and Gleason 4+3=7 diagnosis of Prostate cancer (2/12 samples, one left and one right(69% mostly 4).
Comments
-
John, Just a few brief
John, Just a few brief comments right now.
First, I don't think "waiting" 1 week to decide and 6 weeks for a surgery slot made any difference. You were about as fast as anyone ever is in going from diagnosis to surgery.
Your wife would understand this if she knew more about the subject.
In fact, had they wheeled you into surgery, 10 minutes after your biopsy, I doubt anything would have changed.
She really needs to get off this subject of "waiting too long". She is simply wrong.
What makes that all the more true is that your post surgery PSA is essentially the same as your pre-surgery level.
I am not a doctor, but that seems strange to me. Its as though all your PSA was/is coming from areas outside the actual prostate. Seems even open surgery would not have made the difference.
Did the doctor do any bone scans, CT scans fused with
prostascint (look for soft tissue metastasizes); etc prior to surgery?
Its not a given to do so, because your PSA wasn't all that excessively high, but it is frequently done just on the small chance something might show up.
If not, then when its done, it would seem that might well show up where the current PSA is coming from. Until that is done and the main source of the PSA is found, then it would be or could be useless to do radiation.
How soon will you be doing those scans?
If you haven't already gone to the hundreds of stories on YANA then you might do so, to see how long many men go under various conditions.
http://www.yananow.net/Links.html
Otago0 -
Thanks --some responseRiverRider said:John, Just a few brief
John, Just a few brief comments right now.
First, I don't think "waiting" 1 week to decide and 6 weeks for a surgery slot made any difference. You were about as fast as anyone ever is in going from diagnosis to surgery.
Your wife would understand this if she knew more about the subject.
In fact, had they wheeled you into surgery, 10 minutes after your biopsy, I doubt anything would have changed.
She really needs to get off this subject of "waiting too long". She is simply wrong.
What makes that all the more true is that your post surgery PSA is essentially the same as your pre-surgery level.
I am not a doctor, but that seems strange to me. Its as though all your PSA was/is coming from areas outside the actual prostate. Seems even open surgery would not have made the difference.
Did the doctor do any bone scans, CT scans fused with
prostascint (look for soft tissue metastasizes); etc prior to surgery?
Its not a given to do so, because your PSA wasn't all that excessively high, but it is frequently done just on the small chance something might show up.
If not, then when its done, it would seem that might well show up where the current PSA is coming from. Until that is done and the main source of the PSA is found, then it would be or could be useless to do radiation.
How soon will you be doing those scans?
If you haven't already gone to the hundreds of stories on YANA then you might do so, to see how long many men go under various conditions.
http://www.yananow.net/Links.html
Otago
Thanks for the info. yana site is quite interesting on looking at a few posts
(I guess I have several hours of reading to do). It does look like many people
do survive years with hormone treatment (some even without--but that might be a
biased sample)--so I should not be too depressed.
One more question--many seems to do Casodex rather than Lupron, are they
similar in their side effects ?? The Lupron the doctor recommended is one I
need to take another shot in 4 month, I am aware of the possible side effects,
and is resigned to it. Hope it does not impact my work as well as my enjoyment
of life.
As for the other issues you raised
--CT pelvic and chest scans were done soon after biopsy, about one month
before the surgery, with no sign of spreading. Bone scan were not done before
the surgery, nor the CT/Prostascint scan (since, with a Gleason 4+3=7 scan, it
was not obvious that the cancer has spread beyond the prostate)
--Bone scan is scheduled for this Friday (in 2 days); I was told that if the
bone scan comes out negative, only then I should schedule the CT/Prostascint fused scan.
I have an appointment with the doctor for Lupron next Thursday (though the
result of the CT/Prostascint scan will likely not yet be ready--should I wait
for that ??)0 -
Psa risingJohnK11 said:Thanks --some response
Thanks for the info. yana site is quite interesting on looking at a few posts
(I guess I have several hours of reading to do). It does look like many people
do survive years with hormone treatment (some even without--but that might be a
biased sample)--so I should not be too depressed.
One more question--many seems to do Casodex rather than Lupron, are they
similar in their side effects ?? The Lupron the doctor recommended is one I
need to take another shot in 4 month, I am aware of the possible side effects,
and is resigned to it. Hope it does not impact my work as well as my enjoyment
of life.
As for the other issues you raised
--CT pelvic and chest scans were done soon after biopsy, about one month
before the surgery, with no sign of spreading. Bone scan were not done before
the surgery, nor the CT/Prostascint scan (since, with a Gleason 4+3=7 scan, it
was not obvious that the cancer has spread beyond the prostate)
--Bone scan is scheduled for this Friday (in 2 days); I was told that if the
bone scan comes out negative, only then I should schedule the CT/Prostascint fused scan.
I have an appointment with the doctor for Lupron next Thursday (though the
result of the CT/Prostascint scan will likely not yet be ready--should I wait
for that ??)
Hi John......since we have similar stats, I'll weigh-in. After a 3+4 gleason 7& PSA 5.7 , I had Davinci May 21 at age 65. Surgery went well with some ED the only lasting side effect. Was told cancer was contained in prostate. However, at 6 week test...PSA was .3 & up to .7 by late Sep. Pet/ct scans showed very small activity in right side seminal vesticle area. Bone scan negative. I started IMRT radiation in late OCT.
I am halfway through with no real side effects other then more frequent urination. I feel great & with the doctors...optimistic.
I am suprised your Dr. does not recommend radiation AND possibly hormone therapy.
In my reading I have found some men start with casodex & then lupron or the newer FIRMAGON which has fewer side effects for some. I would wait for those scan results before starting on hormones. As hormones reduce testosterone, you can expect hot flashes & a host of other side effects. There are other posts on this site where men who are currently undergoing hormone therapy express their experiences. Hope this helps.
George0 -
Some other sources for you to exploreJohnK11 said:Thanks --some response
Thanks for the info. yana site is quite interesting on looking at a few posts
(I guess I have several hours of reading to do). It does look like many people
do survive years with hormone treatment (some even without--but that might be a
biased sample)--so I should not be too depressed.
One more question--many seems to do Casodex rather than Lupron, are they
similar in their side effects ?? The Lupron the doctor recommended is one I
need to take another shot in 4 month, I am aware of the possible side effects,
and is resigned to it. Hope it does not impact my work as well as my enjoyment
of life.
As for the other issues you raised
--CT pelvic and chest scans were done soon after biopsy, about one month
before the surgery, with no sign of spreading. Bone scan were not done before
the surgery, nor the CT/Prostascint scan (since, with a Gleason 4+3=7 scan, it
was not obvious that the cancer has spread beyond the prostate)
--Bone scan is scheduled for this Friday (in 2 days); I was told that if the
bone scan comes out negative, only then I should schedule the CT/Prostascint fused scan.
I have an appointment with the doctor for Lupron next Thursday (though the
result of the CT/Prostascint scan will likely not yet be ready--should I wait
for that ??)
John, you are asking questions about Lupron and Casodex that I am not well versed in.
Others can perhaps tell you more.
Or going to all those hundreds of individual stories on YANA might give you some similar examples.
YANA also has some limited discussion on its board.
If you have not already visited, you might find the board at healingwell.com very useful.
That board is very, very active and many men have gone through all the things you are potentially facing.
Also cancerforums.net
Between this site and those other three you should find some who can go over your particular issues and give better advice than i can.
I must say, it would appear that most of the basics were apparently followed in your case in terms of diagnosis, and not waiting forever on the PSA's, the biopsy, and the surgery.
Of course, after you get your various scans you should get a second opinion.
AS to the type of doctor that would be best, others can give you better advice.
For example, perhaps a prostate cancer oncologist instead of a standard urologist.
I'm not sure, but ask for advice and read about the value of each type of doctor for someone in your situation.
It will be informative to find out where the apparent 6.0+ post surgical PSA is comming from. It just seems to me that the surgery would have knocked it down quite a bit from the same score prior to surgery. Seems the CT scan etc would have shown more outside the prostate itself... but then i know very little about CT scans and such matters as to what they show and don't show.
Try those other 3 boards as well as waiting for other responses here.
The healingwell board is often quite responsive and active.
Look at some of the posts there and how they give a bio at the bottom of their posts.
Fill in what details you have and then introduce yourself and write your regular questions in the actual post.
Thanksgiving day may be a little slower for responses.
Take care this weekend. Both you and especially your wife need to stop looking for what you may have done wrong or not soon enough. Nothing I've see in your collection of data seems to indicate you were doing things wrong. Until the 10/09 jump to 6.7 there was nothing very extraordinary about your situation for a 65 year old man, even with your family history. You eventually faced a very good chance of getting diagnose, but I suppose one would have thought it might be 5 or 10 years down the road.
Keep following up and I'm sure the picture will get clearer in the near future.
It may end up being just another unwanted longer term health condition like your cholesterol and pre-diabetes, each of which is also significant, but they just don't have the word "cancer" associated with them. As you may have heard, lots more men die with prostate cancer than because of prostate cancer.
My father diagnosed in his early 60's and lived until his late 80's. His case was designated as "inoperable" and thus he had to do radiation and hormone treatment.
He lived 25 years after diagnosis and died of unrelated causes.
Every case is different.
Otago
PS... My dad was so scared when first diagnosed, that he booked a quick summer trip to Europe, thinking it was his last chance to see all the treasures of the world. Ran himself ragged as my mother didn't want to race around Europe on such short notice. Anyway, he worked for 4 more years and then spent most of his last years in Hawaii, living on or near the beach, still hiking in the hills into his 80's. You never know how things will turn out.0 -
John,
Do not berate yourself
John,
Do not berate yourself for waiting. I really doubt that had ANYTHING to do with your PSA rise. My cancer was found in April 2009 and had my surgery in Aug 2009. My Pre Gleason was 4+3 (7) then downgraded to 3+4 (7) after davinci surgery. My first Post surgery PSA came back as 0. I have a positive margin post surgery and might have to face radiation in the future. Is this my Doc's fault? I don't think so. I picked an excellent surgeon with huge experience level. Its just the nature of cancer and the cards we are dealt.
Most likely that cancer had allready spread in your case and waiting had nothing to do with it.
As far as the Doctor not switching from robot to open I doubt had any effect either. What more could he cut then he did? The Doc's have a very fine line on how much to take with either method of surgery.
As far as follow up know I would also recommend you logon on to healingwell.com and look/register on their prostate forum. I love this site hear but find that healingwell has a larger audience of active men/women.
Take a deep breath, enjoy the Holiday and let us know how you do.
Larry (lewvino)0 -
Who has time to second guess? Move forward!
Your wife is totally wrong about the waiting 7 weeks; you HAD to wait 6 wks after the biopsy and 1 more just was NOT significant. No sense second guessing the surgeon or your choice of robotic procedure now. It is not usual to switch between robotic and open procedures; it's one or the other. With an immediate elevated PSA like yours, you must pursue the next step positively, and that would be both hormone and radiation treatment, I think, from my research. (My husband has his surgery Tuesday; I feel like I've taken a crash course in cancer, the prostate, and options!)A second opinion is always a good idea (we should have gotten one after the first negative biopsy 9 years ago) but if you haven't already done so, find a radiation oncologist: if you have an aggressive cancer, you have to fight it aggressively! There could be clinical trials to participate in, also. Good luck and God bless.0 -
T0+3 month update--still bad (though not the worse) news
3 months after Robotic prostate surgery update
PSA trend
Pre-biopsy (Apr 09) 4.2
Pre-surgery (Oct 09)6.7
6 weeks post surgery 7.0/6.4
10 weeks post surgery 9.2
taking Trelstar (Lupron surrogate).
Both the Bone scan and the Prostascint/MRI scans were negative (the uro says that most of the time, one would not see cancerous modules in these scans until your PSA is 40+.
Note that Prostascint/MRI scan can not detect liver problems (though Prostate cancer cells almost always attack lymph nodes and bone preferentially) since the liver will be hot due to dead red-blood cells collected there regardless.
However, my PSA was (12/11/09) 9.2 (it was 7/6.4 1 month before, which was 6 weeks post DaVinci--so my doubling time is 2+ months, pretty bad); so, I just got a hormone injection (Trelstar) (12/16/09) and hopefully my reaction (which is not due for another 2-3 weeks or so) will be mild and my PSA will drop to 0. Wish me luck.
Jan 5, 2010 update (almost 3 weeks post injection) --so far, no severe reaction from the trelstar--the reaction is not supposed to kick in until 3 weeks post injection (in fact, unlike Lupron, Trelstar is supposed to give an initial boost to testosterone level for the first week or so).0 -
johnk11JohnK11 said:T0+3 month update--still bad (though not the worse) news
3 months after Robotic prostate surgery update
PSA trend
Pre-biopsy (Apr 09) 4.2
Pre-surgery (Oct 09)6.7
6 weeks post surgery 7.0/6.4
10 weeks post surgery 9.2
taking Trelstar (Lupron surrogate).
Both the Bone scan and the Prostascint/MRI scans were negative (the uro says that most of the time, one would not see cancerous modules in these scans until your PSA is 40+.
Note that Prostascint/MRI scan can not detect liver problems (though Prostate cancer cells almost always attack lymph nodes and bone preferentially) since the liver will be hot due to dead red-blood cells collected there regardless.
However, my PSA was (12/11/09) 9.2 (it was 7/6.4 1 month before, which was 6 weeks post DaVinci--so my doubling time is 2+ months, pretty bad); so, I just got a hormone injection (Trelstar) (12/16/09) and hopefully my reaction (which is not due for another 2-3 weeks or so) will be mild and my PSA will drop to 0. Wish me luck.
Jan 5, 2010 update (almost 3 weeks post injection) --so far, no severe reaction from the trelstar--the reaction is not supposed to kick in until 3 weeks post injection (in fact, unlike Lupron, Trelstar is supposed to give an initial boost to testosterone level for the first week or so).
i have not seen you post lately, hows it going i hope good? what is going on with your fight of the beast. griff0
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