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Posted 2/18/2009 5:56 PM (GMT 0)

I had been seeing a PSA of about 0.2 since my operation.  I always expected it to drop to 0.0 and stay there.  That didn't happen.  Last fall it rose to 0.5.  I retested in 3 months and it climed to 0.7.  My interpetation is the cancer is back.  The hospital that did my surgery also believes similiarly.  I have not been back to my uroligist due to his non-approval of my treatment method.  (i.e. robotic Davinci surgery and/or hospital).  The surgery from my perspective, and my wifes, seemed to go well, the hospital was excellent as were all the physicians, nurses and related staff.  It was a POSITIVE experience.

My question and concerns, stem from visiting the local oncologist.  He suggests no need to worry, continue to track changes every three months, and business as usual.  He did agree to a base line bone scan, and meeting with the radiologist.  I am not sure waiting is such a good idea. 

I would like others opinions.

Some background on my reluctance to wait.

For 4 years, my PSA was rising.  I endured biopsies every 6 months until cancer was found.  I suggested to my Urologist that I would prefer to have the prostate removed than go through another biopsie.  Finally, in the fall of 2005, cancer was found, and doctor told me to relax until after xmas and then we would talk about options, deal with it.  Being nieve and not really appreciating the significance of the diagnosis, I did just that.  Then, in 2006 I started reading about treatments, and visiting doctors.  Even if I wanted to continue with my doctors recommended treatment options, no doctor could actually do a surgery until sometime in the spring.  I did research the Davinci method, and persued that as my preffered option.  All available clinics were booked for months, and I was looking at an even longer do nothing period.  City of Hope was able to get me in on a cancellation, way earlier that any other option.  I also had very interesting and indepth conceltations with the doctors via telephone prior to me choosing them. 

After surgery, I was told the cancer was at the margins.  I guess I really didn't realize the significance of that disclosure until now, but I  feel the waiting was a contributing factor to the cancer going as far as it had. 

What is anyone else in similiar situation, or that has already gone through this same scenario done?  Thoughts?

Posted 2/18/2009 6:12 PM (GMT 0)
Hi JF,
Welcome to HealingWell...This is a great website that I found before my surgery at CoH. Tim Wilson did a masterful job on my RALRP. My feelings about that facility is the same. I never realized such a facility existed. Excellent surgeons, great nurses (one flabotomist I called a vampire was so sweet and friendly and kept me smiling). Private rooms and a place for my wife to sleep next to me. Just fantastic. Look at the date of my procedure. We may have passed each other in the hall to the OR...LOL...

Unfortunately my surgery was good but my cancer bad. Dr. Wislon took his time explaining to me that I needed more care. And I have done very well with no relapses. my oncologist is well respected and known all over. He is in Las Vegas where I live, just by chance he moved here and set up shop just when I needed him. You can see the addition steps I took and I am doing well with them.

I don't understand why your urologist would protest going to a world class facility for treatment...What was your original PSA and biopsy results? If nothing abnormal in PCa Dx then he should be reported to your states medical board. If you had a real high PSA, he may have thought this outcome was inevitable. Still he should not question your decision.

But you are now at a point where you need oncology. A good medical oncolist is a prudent move. Radiation is a good idea as long as the bone scans are clean.

Welcome again, my CoH Allumni, and peace to you.

Tony
Posted 2/18/2009 6:18 PM (GMT 0)
Everyone can see how often I read my own signature...My surgery date was February 16, 2007 not the 15th. LOL...another fat finger...I can't remember when Presidents day was that year. But my pre-surgery tests were on the 14th ~ Vlentines Day...I and was in the room recovering on the 17th ~ my wifes 40th birthday...She owes me one...No one razzed her. (yes last night we celebrated her birthday)

Tony

Age 46 (44 when Dx)

Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007

Geason 4+3=7, Stage pT3b, N0, Mx

Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)

HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)

IMRT radiation for 38 Treatments ending August 3, '07

Current PSA (January 13, 2009): <0.1

My Journal is at Tony's Blog  

My InfoLink page is at Tony's Prostate Cancer InfoLink Page

STAY POSITIVE!

Post Edited (TC-LasVegas) : 2/18/2009 11:22:18 AM (GMT-7)

Posted 2/18/2009 6:19 PM (GMT 0)
Welcome to HW, my new friend. Settle in and share your Journey with us as you go along.
Posted 2/18/2009 7:09 PM (GMT 0)

TC-LasVegas

Wilson also was my doctor.  What impressed me most about the whole process was the willingness to for him to call and answer questions.  He called my home first, talked with my wife for a substantial amount of time, 30-40 minutes, and then from her suggestion, called me at work and discussed it with me for another 30-40 minutes.  Plus, after digesting his information, additional questions arose and he again talked with me for another 20 minutes.  All in all, a very competent person that is not afraid to talk to a patient for fear of being questioned.  Another thing that impressed me with the hospital, I was having another issue that may have complicated surgery.  They were able to get me into a specialist to allieviate my fears in that regard, and do so in conjuction with my visit. 

Yes, the process at the hospital was a little like being in a factory, especially with the additional tests and specialists I needed to see.  However, the people were friendly, helpful, and waiting was at an absolute minimum.  Even compared to the small town hospital and doctors I am used to.  Individual attention was as good or better than I had ever had before.  I was impressed. 

My Urologist did not believe in the Davince method.  He referred me to more traditional surgery methods.

Posted 2/18/2009 9:11 PM (GMT 0)
jfrmontana, following your radical prostatectomy, your PSA should be undetectable, that means it should be less than PSA 0.2 ng/ml and should not move at all. It is absurd that your oncologist is taking a wait and see approach. It is likely that, prior to your surgery, you had microscopic capsule penetration. Microscopic capsule penetration means that cancer cells leaked outside of the prostate, and is the reason men fail to be cured from radical prostatectomy. You need to be aggressively pursuing salvage therapies at this point - not waiting and watching your PSA rise. Your prognosis for cure is still good as long as you begin treatment prior to your PSA climbing above 1.0.

Your best bets for salvage therapy are radiation and possibly cryotherapy. I would recommend radiation. Here you have two choices - IMRT external beam, or a procedure called ProstRcision that is a combination of brachytherapy followed by IMRT external beam. You can read more about microscopic capsule penetration and ProstRcision here: http://www.prostrcision.com/qa/introduction-from-dr-critz.php

I also recommend that you fill out the form on the Contact Us page to schedule a free phone consultation with one of their board-certified radiation oncologists.

Best of luck to you.
Posted 2/18/2009 9:25 PM (GMT 0)
Hi JF,
You local urologist is not a good one in the sense that he is not willing to help no matter your modality decision. My Las Vegas urologist was extremely helpful and understanding when I told him I was headed to CoH. He even provided a list of doctors he felt were the best in the SoCal area after I told him I was thinking about heading that way. Wilson was on the list before I told him I was going there ~ but I already knew of him. That just made my decision easier.

I believe that you need to talk to a well prostate oncology specialist ASAP. There are addition tests that should be done before deciding on a treatment plan. BDJC has some good thoughts, but local treatments will not work if there are mets anywhere. You should see more than one option and you should see a hematologist. Your options aren't great in your area. You may have to travel again, but there are some great PCa guys within reach. I am very happy with mine, and Vegas is cheap right now, both in rooms rates and air fare.

Look this name up ~ Nicholas Vogelzang ~ if you are interested.

Peace to you my friend,

Tony
Posted 2/18/2009 10:35 PM (GMT 0)
OhioState - I'm with you; I'm an advocate of obtaining as much information as possible, and I agree with you that there is no such thing as too much education when it comes to prostate cancer. While every case is unique, and should be approached as such, there are only a few treatment modalities that have any long-term track record of success. And by success, I mean achieving and maintaining PSA 0.2 ng/ml 10 years after treatment (I believe the ASTRO definition to be of little use, as it falsely inflates cure rates).

Salvage therapy after a failed radical reduces the options further. Radiation has proven to be the best option following a failed radical, provided, to TC's point, that the cancer is believed to still be contained in the prostate bed (my mistake for not including that caveat in my post above - mea culpa!). My point is that, while urgency is not of the essence when it comes to making an initial treatment decision, it becomes more important following a failed radical. This is because the cancer has been outside the capsule of the prostate for some time - since before the RP, and likely even before the diagnosis. Seeking early salvage therapy is critical for long-term prognosis following a failed RP. Again, radiation has proven to be the most effective treatment in those cases. And, of course, the treatment decision ultimately rests with the patient - not the physician - each man must be comfortable with his own decision - you are absolutely right about that, OhioState.
Posted 2/18/2009 11:29 PM (GMT 0)
Hi JF, as you can see my PSA has been around 0.4 0.5 since my surgery, when the first post op PSA came in at 0.5, my Urologist arranged for me to see a Radiation Oncologist the next week, and then I had salvage radiation, my last PSA was 0.4, next PSA is 9th March, I feel good, but wonder if there rogue cells still sending the PSA signal, have not had a bone scan, but had a CT scan of area before radiation.

I would suggest you see a Radiation Oncologist, don't think waiting is a good idea, I myself wish I had not waited almost a year on advice of my GP when my PSA was rising.

Regards Mal.
Posted 2/19/2009 12:12 AM (GMT 0)
Hello and welcome here, JF, glad to have you, sorry you need to be here. We are all in the PC fight here together. Same enemy, but different battles on different days. The urologist that didn't like your treatment choice sounds like one with a serious attitude. My own dr/surgeon, had no problem if I had wanted to be referred to the larger cities for experienced robotics. he also advised me not to have robotics done through his own practice as they lacked the experience at that time. My own long term GP had no problem with advising me to have PC treatment out of the area. If any of my doctors acted the way you described, I would simply find another doctor.

as far as what to do, i would be concerned with the rising psa numbers after surgery too, but you need to see a new urlogist and one or more good radiation people and/or a good oncologist before deciding anything. i wish you the very best, and hope you stay posted with us
Posted 2/19/2009 1:58 PM (GMT 0)

To clear up a little confusion, my GP reaffirmed my choice of treatment.  My urologist is the only one within my area, and he is about ready to retire.  His practice has begun limiting some of the services he has provides.  Just as a note, he is very old school, and has served the community well.  My father, several uncles,  and a grandfather all recieved treatement for this same "condition".  Some, still carry the scars 20+ years later, some have succumbed to other aliments, and one did succumb to PC after it was diagnosed as having metasticied through a large percentage of his body.  Not the fault of the physician!  My urologist did not protest me going to a world class facility, he just thought I would be money, headaches, and time ahead by dealing with a local surgeon, someone within 200 miles.

I do have a meeting next week with a radiologist oncologist.  I will get their read on the situation then. 

I also have been in contact with the I believe, the correct name is "Cancer Institutes of America". I don't know much about them, but have been referred to them by friends and family?  I would probably be directed to Pheonix AZ, or Oklahoma.  Not sure which is closer/better access for me.

The big question, comes down to how receptive to all this my insurance is.  They encourage 2nd opinions, but I have already played that card extensively for my first round, not sure about their acceptance of multiple consultations in round 2

Posted 2/19/2009 2:20 PM (GMT 0)
Just an FYI, the oncologist is a friend, we ski together, and mtn bike together, I do respect him. It is just that I believe it is very easy to be outdated in this business and clinics dealing with the newest techniques and process may be able to offer me more options while limiting my exposure to detrimental side affects.
Posted 2/20/2009 9:02 AM (GMT 0)
jfrmontana,
I am kind of in your same boat so to speak. I started out 3 months at 0.11 then rose to 0.12 at six months. Very small change. The Dr who performed my surgery said that at my numbers there is a 25% chance that the psa will continue to rise and that the cancer is still present. If I were to choose radiation now there is a 75% chance that the radiation is not necessary. He said that the success rate for the radiation at my current psa levels is the same as if it were 1.0.
With that said, I am going to wait and see what my psa results are in 3 months. If my psa continues to rise after 3 months I am going to talk seriously with the Dr about radiation whether my psa level is 0.15 or 0.25. I really don't want to wait until it is at 0.4 to have some one say its time for radiation.
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