Experience with IMRT and Hormone Combination

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

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.

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!

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

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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

God Bless

Keep Smiling

Richard    

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)

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.

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

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

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   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 )

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