Experience with IMRT and Hormone Combination

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don826
Veteran Member


Date Joined May 2008
Total Posts : 1010
   Posted 5/8/2008 8:24 AM (GMT -6)   
I am newly diagnosed with PCa. Age 58, PSA 22, Gleason 4+3, T3 with possible lymph node. Bone scan and chest xray clean. Urologist will not do surgery because of lymph node and has recommended radiation. I am scheduled to begin in June with IMRT/IGRT 45 sessions and have started with Casodex and will recieve first Lupron shot next week. I am looking for experiences of other people who have gone through the radiation with the IMRT. How many, how long since, results and side effects. Any advice or information will be helpful.
 
Thanks to all who repsond.

Doting Daughter
Veteran Member


Date Joined Aug 2007
Total Posts : 1064
   Posted 5/8/2008 9:22 AM (GMT -6)   
Sorry to hear about your diagnosis, but you have obviously done your research. In my opinion, you found the best source of information on the web. You will see from my signature below what my father's course of treatment has been.
His PSA was only 5.5 prior to surgery and the post op path report showed a positive lymph node. He just completed 37 IMRT treatments and has been on HT. The radiation was a breeze for the most part. He had minimal discomfort from the actual treatment and a couple of weeks of diarrhea, however it was controlled with over the counter Imodium. He was really against HT, but even the HT he is tolerating well. He does have trouble sleeping at night and has occasional hot flashes. He has been able to maintain an active life style and has a year and a half left of HT.
Good luck and God Bless! Feel free to contact me with any questions regarding our experience.

Chayna
Father's Information
DX July 15, 2007
Age 62 (now 63)
PSA 5.5
Original Gleason 3+4=7
Post Surgery Gleason- 4+3=7
DaVinci Surgery Aug 31, 2007
Focally Positive Right Margin
One positive node
Bone Scan/CT Negative (Sept. 10, 2007)
T3a N1 M0
Oct. 17 PSA 0.07
Nov. 13 PSA 0.05
Casodex adm. Nov 07
Lupron beg. Dec 03, 2007 2 yr
Radiation started March 03-April 22, 2008- 8 weeks 5x a week
8 weeks of radiation down!!!
Praying for a cured dad. First PSA 3 months!


don826
Veteran Member


Date Joined May 2008
Total Posts : 1010
   Posted 5/8/2008 9:33 AM (GMT -6)   
Thank you Doting Daughter. I assume that the radiation was recommended because of the positive margins. I went to a world renowned facility and the doctor there recommended surgery, radiation, and hormone. I think your dad is on the right track. Just a rough one.

I would like to know how he does on the first PSA. I am betting it will be good news.

Don

jwb187
Regular Member


Date Joined Apr 2007
Total Posts : 101
   Posted 5/8/2008 10:29 AM (GMT -6)   
Hi Don,

I have had IMRT radiation, 35 treatments, plus I am currently taking Lupron, have had almost a years worth. I however did have surgery (da vinci), although had a failed surgery (see psa's after surgery in Sig). I suffered no ill effects from the radiation treatments, and really have only had hot flashes from the Lupron. I see on this site where others have had major problems (depression, pain, etc with their hormone treatments). Fortunately so far.....I haven't experienced any of that. I didn't take casodex, just started on Lupron immediately after higher than expected psa readings...Good luck in your journey...jwb.
age: 62
PSA 4.57 - Positive DRE
Biopsy 3-19-07 - Gleason 4+4=8
Negative bone scan 3-20-07
DaVinci 4-24-07
Catheter out 5-01-07
post op pathology:
positive margin left side of prostate
left seminal vesicle involved (both removed)
No lymph node involvement
New gleason score 9
T3B....radiation consult on 5-9-07.
June 5, 2007 1st psa post surgery 0.62
June 27, 2007 second psa post surgery 0.59
June 27, 2007 started Lupron injection (24 mos)
September 6, 2007 scheduled to be marked and prepped for radiation therapy.
Start IMRT therapy on September 13, 2007.
September 26,2007 psa test .08
Finished IMRT therapy October 31!!!
January 17, 2008 psa test .<.05!!!!
April 8, 2008 psa test .<.05!!!!


don826
Veteran Member


Date Joined May 2008
Total Posts : 1010
   Posted 5/8/2008 10:34 AM (GMT -6)   
Thank you, jwb. Your note makes me feel better about the treatment recommendation I have recieved. I hope your numbers continue to be good. And thanks for taking the time to post a reply. It is appreciated.

Doting Daughter
Veteran Member


Date Joined Aug 2007
Total Posts : 1064
   Posted 5/8/2008 10:50 AM (GMT -6)   
Hi Don! My father did radiation because his first PSA came back as .07 and then a .05, which would have been great had the lymph node not been involved. Even though his PSA was undetectable, since the lymph node was involved there was a 90% chance the cancer would return and a recent study showed in situations, such as my father's that radiation immediately following surgery reduced the likelihood of recurrence in 5 years. Therefore, we were able to talk him into IMRT in combination with HT. Don't get me wrong, he was not excited....actually I would go so far as to say angry. He was mad that he did the surgery to begin with, however, I think now he is at peace with the treatments. I am happy he agreed to do the course that he did. I know it is a lot easier for me than for him, however, I feel this course is the best chance he has. He agrees, but as I am sure you know, once diagnosed everything happens so fast.
I am confused as to which urologist won't do surgery. Is it the same urologist from the world renowned institution? I personally am very happy my dad did the surgery first. Are they assuming based on your PSA that there is lymph node involvement or how do they know? The reason I ask is that there are a number of men on here that have had high PSA's that do not have lymph node involvement following surgery. (Tony) On the flip side, my father and "myman" both had lymph node involvement with relatively low PSA's prior to surgery. Regardless, I am happy with the decision my dad made to have the surgery, and if needed then to have the radiation. Regardless of whatever treatment decisions you make, just be confident that you are making the best treatment decision with the information given and don't look back. My father's situation was not what the statistics had suggested and his tests had come back negative prior to his treatment for spread of disease. Lucky us :( Anyways, we feel good about the course he has taken and hope for the best. I hope for the best for you too!
Father's Information
DX July 15, 2007
Age 62 (now 63)
PSA 5.5
Original Gleason 3+4=7
Post Surgery Gleason- 4+3=7
DaVinci Surgery Aug 31, 2007
Focally Positive Right Margin
One positive node
Bone Scan/CT Negative (Sept. 10, 2007)
T3a N1 M0
Oct. 17 PSA 0.07
Nov. 13 PSA 0.05
Casodex adm. Nov 07
Lupron beg. Dec 03, 2007 2 yr
Radiation started March 03-April 22, 2008- 8 weeks 5x a week
8 weeks of radiation down!!!
Praying for a cured dad. First PSA 3 months!


don826
Veteran Member


Date Joined May 2008
Total Posts : 1010
   Posted 5/8/2008 11:55 AM (GMT -6)   
Doting Daughter,

My urologist locally has said the surgery would not help and that he is sure from the PSA and Gleason that the organ would have positive margins. The other facility has a bias towards doing the surgery. My research indicates that there is no significant difference in overall survival for surgery and ADT vs radiation and ADT. Therefore why do the surgery when you will need to do the radiation anyway? I have found some articles that indicate surgery first is better in determining the reoccurence of the disease. However, like your father, I am already showing lymph node positive be it minor.
It makes sense to me, as a layman, that if you get the prostate out you have gotten rid of the primary source of the cancer cells. Then, you can use the radiation and ADT to finish off the rest of the buggers. I think your dad and you will be happy with the outcome.

Thanks again for your reply and concern.
Don

DanmanBob
Regular Member


Date Joined Feb 2008
Total Posts : 467
   Posted 5/8/2008 12:13 PM (GMT -6)   

Don,

For what it might be worth, I linked below the Partin Tables from Johns Hopkins.  They show the statistical probability of the following cancer invasions:

1. Organ confined
2. Extraprostatic extension
3. Seminal vesicle involvement
4. Lymph node involvement

http://urology.jhu.edu/prostate/partintables.php

As my urologist said, every case is individual, but these at least are averages that should give you some idea based upon actual experience at Johns Hopkins.

I am also linking the Han Tables, also from Johns Hopkins, which show the likelihood of cancer recurrence based upon pathology results at biopsy or post-surgery.

http://urology.jhu.edu/prostate/hanTables.php

Good luck in your journey.

DanMan Bob


Danman Bob, Born 1951
Nerve-sparing, open prostate surgery November 13, 2007
Gleason score 9, PSA 14; Biopsy result - 9 of 12 sticks showed cancer
Post-op pathology stated that cancer was confined to the prostate
Unrelated surgery January 2008 delayed incontinence recovery, which is now showing good signs of improvement (fraction of a pad a day as of late April 2008)
100 MG Viagra 3 times a week beginning December 2007
Osbon Erec-Aid Esteem manual pump for therapy beginning mid-February 2008
30 MG papaverine/1 MG phentolamine bimix injections beginning late April 2008
Five week post-op PSA 0.2, five month post-op PSA 0.1, next test August 2008


don826
Veteran Member


Date Joined May 2008
Total Posts : 1010
   Posted 5/8/2008 12:29 PM (GMT -6)   
Thanks Danman Bob,

I am aware of the Partin tables and the use thereof. The Hans table was new to me. Must have missed it in my search. Probably too late at night. The doctors I consulted liked to use terms like "advanced" and "high risk" when addressing my case. So, I did a lot of digging. My local urologist and oncologist say this is the best shot for me and according to my research gives me an 18% chance of a cure. Slim margin but look at the downside if you don't take the chance. I had three opinions given on my case. Two in favor of radiation and ADT and one in favor of surgery, radiation and ADT. One mentioned a clinical trial that is doing radiation, ADT and chemotherapy. Comes in all flavors. My expectation is simply to buy a little more time and, if I am lucky, a cure. If I am that lucky I will quit playing the lottery as I will have used up all my luck. :)

Thanks again to eveyone who has repsonded.
Don

Tony Crispino
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Date Joined Dec 2006
Total Posts : 8128
   Posted 5/8/2008 12:51 PM (GMT -6)   

  tongue    Hi ~ Don826 and Loved Ones,

 

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Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 5/8/2008 1:05 PM (GMT -6)   
Hi Don,
First off, welcome to the best site on the web for patient to patient interaction. When I was diagnosed this was the site that helped me the best. Look below at my signature information...Look familiar? We have nearly the same numbers. And I found a surgeon that would operate. I wasn't accepting the don't operate tone and my research shows that when PC becomes resistant to hormone therapy it's usually first in areas where it was not removed. Unless they have factual evidence, and not just statistics, I would continue to get opinions. No one will have that kind of proof of lymph node involvement without biopsy of the suspect node. I recommend a second opinion.

But if you do end up on radiation, I recommend that you look into WPRT (Whole Pelvic Radiation Therapy) using IMRT, combined with HT and possibly another attack on the prostate like Proton or surgery. It's too short a message now, I am at work, but we can discuss it later. My numbers are the same as yours. i did have surgery and found late stage pT3b, I have had HT (still on it), and went through IMRT. Good news. I'm in remission. Now let's get well together. Stay close. Add your own signature like mine so that others will know your experience and you don't heve repeat yourself too much. We're here to help and glad to have you with us.

Tony
Age 45 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007 @ The City of Hope
Post-Op Pathology: Gleason 4+3=7, positive margins, Stage pT3b (Stage III)
HT began in May, '07 with Lupron and Casodex 50mg
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (1/08): <0.1
I will continue HT until May '09. 
Years in Remission (3/23/07): 1
Visit my Journey at:
 
STAY POSITIVE!
 
Prostate Cancer Forum Moderator


smilingoldcoot
Regular Member


Date Joined Jan 2008
Total Posts : 338
   Posted 5/8/2008 7:00 PM (GMT -6)   

Don

I like all here, regret the reason your here but wish you the best. 

I have not started radiation yet but give me a week and I start.

Started Lupron and Casodex last week and nothing yet yeah

God Bless
 
Keep Smiling
 
Richard yeah   yeah   yeah
Retired USAF Richard & Debbie on The Shores of Toledo Bend Lake Louisiana
Neg Bios 1997 & 2000 PSA within considered normal range
11/06 PSA 1.9 PSA 11/07 was 4.9 PSA 12/07 was 7.7 MDA 2/12/08 3.3 On Proscar so shud be doubled
Biospy 1/10/08 Gleason 10, Stage T1C  8 of 12 samples positive all Less Than 5% 
Bone scan 1/17/08 hot spot on ribs, CT shows rib enjury CT CHest 1/30/08 Clear
M.D. Anderson 2/12/08 Gleason 9 - CT Abdomin & Pelvis Clear Recommended Hormone&Radiation
2/19/08 Dr Fagin, Austin, TX did not recommend surgery based on medical history
2/22/08 Contacted U of Florida Proton Therapy Institute - Appt 3/13/08 
3/24/08 PET Scan Indicated possible lyphm node involvement
4/1/08 Prostascint Scan indicates no lyphm node involvement
UFPTI  3 day workup April 29th and 30th and May 1st.
Urologist feels nodule during Proton marker seed implant Stage T2A
5/2/2008 LUPRON & Casodex
IMRT to start 5/15/2008 for approx 4 weeks with Proton to follow for approx 4 weeks
Turn Stumbling Blocks into Steping Stones and Keep Smiling


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 5/8/2008 7:06 PM (GMT -6)   
Hey Don welcome to the site, wish it was for more favorable reasons. I to had a failed surgery due to lymph node involvment, I had 44 IMRT's, 20 Casodex, and just had my 3rd Lupron shot. The radiation made me real tired and a bit tender, I could not tell what the Casodex did, the Lupron the longer you are on it has some strange side effects, but none you can't live with. To my knowledge what you are doing is the best combination. I would like to ask though, how do the doctors know you have lymph node involvment? I think you said that you have not had surgery.
Keep the faith strong my friend, and you will find many blessings in this battle.

peace and love
Dale
My PSA at diagnosis was 16.3
age 46 (current)
My gleason score from prostate was 4+5=9 and from the lymph nodes was 4+4=8
I had 44 IMRT's
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
 


don826
Veteran Member


Date Joined May 2008
Total Posts : 1010
   Posted 5/8/2008 7:36 PM (GMT -6)   
Gentlemen,
I will try to answer the last three posts here. Tony, the lymph nodes were visible in the CT scan as I understand it. One external illiac and one obturator. Both on slightly swollen. (1.9cm and 9 mm) The local surgeon believes that the high PSA and Gleason scores would indicate extension beyond the gland. He does say that there is no evidence of seminal vesical involvement and a cystoscopy indicated no lesions in the bladder or ureter. I did not have a rectal MRI done but that has been recommended by one of the three. My treatment has been prescribed as follows:
Pelvic and prostated radiation with IMRT/IGRT 45 sessions total nine weeks
Casodex for thirty days starting 8 week prior to radiation
Lupron every four months for two years first shot on 05/15/08

Richard, I hope your treatment goes well. You are the first I have heard to use IMRT and Proton beam. Did your urologist recommend the Prosta Scint? I have gotten mixed reviews on this procedure. If I had access to the Proton Beam I would do that as everything I have read about it is positive.

Dale, you are correct. I have not had surgery nor a biopsy of the lymph nodes. The evidence according to the urologist is the CT scan an noted above.

Don

Age 58
Diagnosed 4/10/08
PSA 22
Gleason 4+3
16 of 16 samples positive. Lowest 35% and highest 85%
DRE left side tumor
Gland 33cc's (about normal according to the urologist)
Lymph node involvement per pelvic CT scan
Bone scan and chest xray clean
Cystoscopy clean
No symptoms. First and only PSA test on a follow up to a kidney stone. (first time for that too)

livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 5/9/2008 4:11 AM (GMT -6)   
THanks for the reply Don, I know these are confusing times for you. In my limited knowledge and the difficulty in diagnosing PC I just assumed you had to have a lymph node disection and have it pathologically reviewed, however that does not seem to be the case here. I do agree with the course of treatment if surgery is not an option. Please keep us posted as to how things go. How are you feeling emotionally and spiritually?

peace and love
Dale
My PSA at diagnosis was 16.3
age 46 (current)
My gleason score from prostate was 4+5=9 and from the lymph nodes was 4+4=8
I had 44 IMRT's
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
 


goody5
Regular Member


Date Joined Mar 2008
Total Posts : 66
   Posted 5/9/2008 5:14 AM (GMT -6)   

Don,

Take a look at my signature. My Uncle's PSA was an 8 (jumped from a 2) and his CAT scan showed an enlarged node in the pelvic region.  After 4 opinions he is having Hormone therapy and radiation (casodex and eligard). We are in the begining stages. Yesterday he had an MRI and body molding for radiation. Has been on Casodex for a few weeks and had his first Eligard shot last week.  He only complaint right now is fatigue. He wanted his prostate removed but was told no doctor in our area would do that. I think they are looking at his age and they feel combination radiation and hormones will do the job.  The two doctors that he really feels comfortable and come highly recomended are not on the same page as far as long term or intermittent.  Conclusion is lets get started and see how things go.  The doctor who is in favor of intermittent is from Fox Chase where studies have been favorable.  The other doctor feels the studies have not been done long enough.

Is it possible to have Proton after you have done pelvic radiation? University of Penn has the machine but it will not be ready for use until 2009.  This would be so convient for us.

So glad you found this board. The people here have been so helpful. I will be forever grateful.


Cheryl
Father diagnosed 13 years ago @ age 63
Watchful waiting until PSA jumped from 6 to 10
Cancer found in 1 core
Gleason score 6
Seeds implanted
PSA has been low since (don't know exact numbers)
 
Uncle (mother's brother) age 68
PSA jump from 2 to 8 in 18 months (2/08)
DRE was normal (2/08)
Biopsy (3/08) Cancer found
Bone scan (clear) 
Fine Needle Lymph Biopsy (Positive)
Gleason Score
(2) 4 + 3
(1) 3 + 3
(4) 4 + 3
7 of 12 cores positive
Waiting for MRI and another CAT Scan before radiation
Started Casodex and Eligard
 
 


don826
Veteran Member


Date Joined May 2008
Total Posts : 1010
   Posted 5/9/2008 8:25 AM (GMT -6)   
Dale,
I am just learning about all this too. I have found out more than I ever wanted to know. :) I am in good spirits and taking it a day at a time. I just want to get on with the treatment and put this behind me as best as it can be.

Cheryl,
You are correct about the people on this board. Good comments and discussions. I tired another board and there were coded ads for all manner of quackery. Some people lack basic human compassion. I share your Uncle's frustration on the medical opinions. There is no unanimity. This is reflected in the research as well. As for the length of time for the hormone 2 and 3 years seem to be the best results from the medical papers I have read. One noted that 6 months following RP was sufficient but the catch was "locally contained". That is not your uncle's case from what I see.

Thanks again to all who hae replied.

Don

Age 58
Diagnosed 4/10/08
PSA 22
Gleason 4+3
16 of 16 samples positive. Lowest 35% and highest 85%
DRE left side tumor
Gland 33cc's (about normal according to the urologist)
Lymph node involvement per pelvic CT scan
Bone scan and chest xray clean
Cystoscopy clean
No symptoms. First and only PSA test on a follow up to a kidney stone. (first time for that too)

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 5/9/2008 9:37 AM (GMT -6)   
Hi Don,
I would ask that the node be verified. CT scan does not confirm cancer. If it just enlarged you might still benefit from surgery.

Tony
Age 45 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007 @ The City of Hope
Post-Op Pathology: Gleason 4+3=7, positive margins, Stage pT3b (Stage III)
HT began in May, '07 with Lupron and Casodex 50mg
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (1/08): <0.1
I will continue HT until May '09. 
Years in Remission (3/23/07): 1
Visit my Journey at:
 
STAY POSITIVE!
 
Prostate Cancer Forum Moderator


DanmanBob
Regular Member


Date Joined Feb 2008
Total Posts : 467
   Posted 5/9/2008 2:33 PM (GMT -6)   

Don, to reinforce what TC stated, you do not know for sure about lymph node involvement until lymph nodes are biopsied, unless bone scans indicate widespread body invasion.

I believe there is a procedure called a lymph node dissection that can be done before full blown surgery to determine if in fact lymph nodes are involved.  If they are not involved, that MIGHT change your view of including surgery as part of your treatment, although I realize that is a personal decision.

Good luck.


Danman Bob, Born 1951
Nerve-sparing, open prostate surgery November 13, 2007
Gleason score 9, PSA 14; Biopsy result - 9 of 12 sticks showed cancer
Post-op pathology stated that cancer was confined to the prostate
Unrelated surgery January 2008 delayed incontinence recovery, which is now showing good signs of improvement (fraction of a pad a day as of late April 2008)
100 MG Viagra 3 times a week beginning December 2007
Osbon Erec-Aid Esteem manual pump for therapy beginning mid-February 2008
30 MG papaverine/1 MG phentolamine bimix injections beginning late April 2008
Five week post-op PSA 0.2, five month post-op PSA 0.1, next test August 2008


Frank1205
Regular Member


Date Joined Feb 2008
Total Posts : 308
   Posted 5/9/2008 9:55 PM (GMT -6)   

Welcome Don,

Sorry your hear but glad you came.  Very interesting information in your topic.

I wish you and your family strength and unending resolve.

This is a great site with folks who truly care.

Frank


Diagnosed 01-08-08 @ 53 years old 
DRE normal - High PSA for 5 or more years
2004 Biospy negative - 2008 Biopsy positive (01-08-08)
10 cores, 1 positive and at 1% of that one core
Current PSA 6 - Bone and Ct scans negative
clinicalg Staged at T1C - Gleason 3+3 = 6
Robotic Da Vinci performed March 27th, 2008
University of Chicago,5 hour surgery , 3 hour recovery
Unexpected Cardiac issues appear and disappear?
Hospital stay 30 hours - Catheter out in 7 days  normaly expected leakage - Erectile funtion back on line 9 days 
Post Pathology T2C, Gleason 7, 10 % of both portions of prostate, Seminal vessels clear, fat tissue clear,Tumor on top of prostate distal from apex. 1 positve margin at urethra and bladder.
Six week PSA < 0.05 Ya Ba Da Ba Dooooooooooo.  Put a steak on the grill Wilma!!!!
Oncologist to discuss case with Urologist and Radiation Oncologist to consider radiation.
 


don826
Veteran Member


Date Joined May 2008
Total Posts : 1010
   Posted 5/12/2008 9:03 AM (GMT -6)   

Gentlemen:

You are correct regarding the absolute identification of cancer spread to the lymph nodes. A CT or PET with contrast can identify suspect nodes. A fine needle biopsy can be performed to verify the cancer. My doctors both felt that further testing would not change the recommendation to have radiation and hormone. I believe they are placing a good deal of confidence in the Partin Tables and, to some degree, their experience. There is one more test that can confirm whether or not the cancer has penetrated the capsule and that is endorectal coil MRI with contrast.

Tony, I have also read that when cancer returns after radiation it is primarily from the original site (prostate) where the cancer was not completely eradicated. In other cases it is because the cancer had already spread but was not detectable at the time.

There are some salvage surgeries available but not a  lot of people doing them. The most interesting that I have found is High Intensity Focused Ultrasound. Apparently quite well known in Canada and Europe but still in the approval process here in the US. The Cyberknife can also be used as a "boost" to IMRT. All of the treatments I have looked at have one thing in common when expecting to make a cure. Local cancer and no penetration of the casing.

I will consult with my doctor again on the benefits of doing further testing. I thank you all for getting me to rethink things.

Don

Age 58
Diagnosed 4/10/08
PSA 22
Gleason 4+3
16 of 16 samples positive. Lowest 35% and highest 85%
DRE left side tumor
Gland 33cc's (about normal according to the urologist)
Lymph node involvement per pelvic CT scan
Bone scan and chest xray clean
Cystoscopy clean
No symptoms. First and only PSA test on a follow up to a kidney stone. (first time for that too)


Doting Daughter
Veteran Member


Date Joined Aug 2007
Total Posts : 1064
   Posted 5/12/2008 10:32 AM (GMT -6)   

Hi Don! Not to make things any more frustrating or confusing than they already are, BUT, :-) the endorectal MRI was completely wrong in my father's case.  The test showed negative lymph node involvement and my dad did in fact have lymph node involvment. 

Once again, this is why I feel so strongly about being your own advocate.  Once the cancer has spread, none of the tests are 100% accurate. I don't even think they are 70% accurate.  Anyways, I wish we would have inquired about the accuracy of the endorectal MRI, because it was not a very pleasant experience for my dad and we were absolutely devastated by the news of lymph node involvement after his surgery.  We were told there was not lymph node involvement following the MRI.  Maybe it was our bad for not knowing, or maybe like most people we were hoping for the best.

I think the MRI's are good for decisions regarding nerve sparing and such, but I know my dad would not have done the MRI knowing what we know now.  Actually, we told him he was getting an MRI and he didn't realize what kind of MRI tongue   We can laugh about it now, but you should have seen his face when he came out of the room.  We wanted to run for the hills.  My dad has both a temper and an amazing sense of humor. 

Anyways, Tony's situation is somewhat similar to ours and he has been an incredible resource.  Maybe it is just because we are eternal optimists and research like crazy.  Regardless, you have received a lot of great advice and I wish you the best in your treatment, whatever that may be. 

P.S. You have AMAZING grammar! (I'm studying for the GMAT, so I notice these random things :-) )


DX July 15, 2007
Age 62 (now 63)
PSA 5.5
Original Gleason 3+4=7, Post-Op Gleason- 4+3=7, T3a N1 M0
DaVinci Surgery Aug 31, 2007
Focally Positive Right Margin, One positive node
Bone Scan/CT Negative (Sept. 10, 2007)
Post Surgery Gleason- 4+3=7
Oct. 17 PSA 0.07
Nov. 13 PSA 0.05
Casodex adm. Nov 07
Lupron beg. Dec 03, 2007 2 yr
Radiation March 03-April 22, 2008- 8 weeks 5x a week
Praying for a cured dad. First PSA 3 months!


don826
Veteran Member


Date Joined May 2008
Total Posts : 1010
   Posted 5/12/2008 10:47 AM (GMT -6)   
Hi Chayna,

I think your comment about "most people hoping for the best" is accurate. I have tried not to fall into that mind set of wishful thinking. My experience says it is not a good nor productive attitude. I have a friend who has been with me at the meetings with the doctors. She hears all the "good" comments and I hear all the "negative" ones. So, together we get a full picture. :)

I got a good laugh out of your story regarding your dad's reaction to the MRI. I think that keeping a sense of humor about all this is vital to one's health both physical and mental.

Thanks for the comment on my grammar. My grade school teachers would be proud. :)

Don

Age 58
Diagnosed 4/10/08
PSA 22
Gleason 4+3
16 of 16 samples positive. Lowest 35% and highest 85%
DRE left side tumor
Gland 33cc's (about normal according to the urologist)
Lymph node involvement per pelvic CT scan
Bone scan and chest xray clean
Cystoscopy clean
No symptoms. First and only PSA test on a follow up to a kidney stone. (first time for that too)

smilingoldcoot
Regular Member


Date Joined Jan 2008
Total Posts : 338
   Posted 5/12/2008 11:10 AM (GMT -6)   
Don,
To answer your question about the Prostascint scan.  No, my urologist did not even order a pelvic CT.  That was done at MD Anderson and the Prostascint scan was ordered by U of Florida Proton Therapy Institute as a requirement before my treatment was finalized and it was done in Lake Charles, La before coming to Jacksonville.
Good Luck  and stay in touch
 
Richard  yeah tongue yeah
Retired USAF Richard & Debbie on The Shores of Toledo Bend Lake Louisiana
Biospy 1/10/08 Gleason 10, Stage T1C  8 of 12 samples positive all Less Than 5% 
U of Florida Proton Therapy Institute
5/2/2008 LUPRON & Casodex
IMRT to start 5/15/2008 for approx 4 weeks with Proton to follow for approx 4 weeks
Turn Stumbling Blocks into Steping Stones and Keep Smiling
Our Journey is on WWW.GLEASON10.COM
 

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