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radiation following radical prostectomy for gleason 9 with psa 0

frankmw45
Posts: 5
Joined: Oct 2011

My husband was diagnosed in April 2011 with Gleason 9 (4+5)prostate cancer. Bone scan and CT and MRI scans were clear. He had a radical prostectomy(nerves removed too)in June. Lymph nodes, bladder and seminal vesicles were clear, however there was some evidence that the cancer was breaking out of the capsule. His PSA currently done in September was 0, he is scheduled for another in November. The oncologist is recommending that he have radiation even if his PSA stays 0 because of the aggressive nature of the tumor. My husband is leaning toward not radiating if the PSA is 0. He is currently still very incontinent and that is a concern. Can anyone let us know what the current thinking is about radiating in these circumstances and how much does it increase cure/survival rates?

Thanks to all-

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

So sorry to read about your husband. Would you mind sharing with us your husbands age?
I know of one other gentleman that had a Gleason 9 and his doctor also recommended radiation following the surgery.

I'm not sure on how much it increases survival rates but some of the guys that have been through radiation will most likely be resonding to your question.

Lewvino
Gleason 7
age 57

frankmw45
Posts: 5
Joined: Oct 2011

thanks so much for your concern! my husband in 66 and he has other health issues such at Atrial Fibrillation, stents, on and off kidney issues and really bad arthritis. I think he is worried about aggravating some of his other health problems and he has heard that the radiation can cause bad side effects like bowel obstruction. I think he thinks if his PSA stays 0, he is better off staying away from radiation, but the Docs cant guarantee that there are no microscopic cells left behind in the prostate bed. They say they are being more aggressive than Sloan-Kettering or Johns Hopkins would be by following up with radiation-I just wondered if anyone else has been given this advice and the pros and cons.

Thanks again!

VascodaGama's picture
VascodaGama
Posts: 1533
Joined: Nov 2010

Frank45

Let me firstly congratulate you on the ZEROS at the 1.5 years mark from surgery.
These results should be evidence of the success in the treatment but the doctor is raising a flag due to other info you have not posted here, including the high risk that Gleason grades of 4 and 5 entail in the presence of positive extra capsular extension.

Pre-op PSA chronology, volume of cancer and the trend after surgery is all representative when assuming a future outcome. The age of the patient and other health conditions also contribute in a decision for a preventive treatment.

Another reason for his doctor recommendation might be the initial protocol which could have been for a combi of surgery plus adjuvant radiotherapy. However, in such cases the radiation is administered as soon as the patient has recovered from surgery. Studies in these protocols (RP+RT) have shown better outcomes and survival rates, but the results involve patients treated in the 1980-1990 with different ways of diagnosis and treatment modality.
Here is a link to a study;
http://www.sciencedaily.com/releases/2005/10/051020082952.htm

The Kattan nomogram is very much used as a reference “score card” to predict the Risk of Recurrence After Surgery. It uses the PSA, clinical stage, and Gleason grade to predict recurrence. This is used by doctors when deciding on a treatment (before committing). You can plot your husband’s previous data and check on the possibilities of recurrence. This is scaled for five and ten year’s projections. Here is a link with explanations;
http://www.aafp.org/afp/2005/1215/p2511.html

Many doctors actually declare “cure” to patients that reached the five year mark with a PSA plateaued below 0.4. My doctor’s threshold of success in surgery was a PSA <= 0.06 which he would take as an evidence for survival at the 10th year mark.

I would recommend you to get PSA tests done with super sensitive assays on the two decimal spaces (0.XX ng/ml) which are appropriate to diagnose your husband’s progress and success. A value of 0.06 or 0.4, can also be read as 0 (zero) but they have different meanings in prostate cancer diagnosis.

Getting a second opinion from another doctor is the best for understanding the pitfalls of radiation over surgery and its implications with any other health issue. The side effects will surely superimpose on the side effects from surgery.

Wishing him a continuous successful outcome in the ZEROS.

VGama

frankmw45
Posts: 5
Joined: Oct 2011

Hi and thanks for your input. I realize that my husband is in great danger with the high Gleason and the extra-capular extension even though his first PSA 2 months post-op was 0.01 and the 2nd a month later was 0.00, trending downward-which is very good news. Mentally, I think he has deluded himself into thinking he is in the clear since all his other pathology came back negative and they can't find any obvious evidence it has spread. It is going to take arm twisting to go for the radiation unless his continence improves in a hurry-I don't know how long post-op they will let him try to get better in that department before he gets treatment. My husband is 66 (relatively young for this disease) so I am sure they are trying to be as aggressive as possible to give him the best outcome.

Thanks so much, your information was very helpful!

tarhoosier
Posts: 181
Joined: Aug 2006

frank(ms):

Great to have such a fine psa result after a G9 surgery. Many doctors would decline to operate on a such high risk patient.
You do not mention the age of the patient. Nonetheless, the longer the psa stays at zero, the better chance that any recurrence is local; that is, in the area of the prostate available for radiation.
There is significant research to show that radiation for men with suspected spread (I take your comment to indicate that the pathology showed ECE, extra capsular extension, or EPE extra prostatatic extension). In these cases radiation shortly after surgery was significantly better than waiting. The KEY point, though, is recovery of continence. Radiation before recovery of continence will damage the nerves and muscles in such a way that continence is unlikely to ever be regained, at significant loss of Quality of Life.
I think that the healing and continence project must be the first priority. Fortunately the psa results give time. Perhaps RT may never happen. In any case, recovery FIRST. Only then can other options be considered.
In my opinion, probability of chronic, lifetime incontinence would require absolute certainty of radiation success and I can tell you that no doctor worthy of the name can make such a claim.
Enjoy the success and pleasure of a great psa result. That is the good news and great news it is.

frankmw45
Posts: 5
Joined: Oct 2011

My husband is 66 and I think when all the preliminary tests came back and it looked like there was no spread, the surgeon decided to go for it(he did his training at Sloan-Kettering). His first Psa 2 month post op was 0.01, then 0.00 a month later. One of our big concerns is getting his bladder function better before radiation, we just dont know how long they can let him go(as long as PSA is 0??) He has been extremely lucky up to this point and if it hadnt been an incident of blood in his urine, we would have never known he was walking around with this-his PSA had been in the 1-2 range prior to surgery.
Thanks you so much for your input and good wishes!

frankmw45
Posts: 5
Joined: Oct 2011

My husband is 66 and I think when all the preliminary tests came back and it looked like there was no spread, the surgeon decided to go for it(he did his training at Sloan-Kettering). His first Psa 2 month post op was 0.01, then 0.00 a month later. One of our big concerns is getting his bladder function better before radiation, we just dont know how long they can let him go(as long as PSA is 0??) He has been extremely lucky up to this point and if it hadnt been an incident of blood in his urine, we would have never known he was walking around with this-his PSA had been in the 1-2 range prior to surgery.
Thanks you so much for your input and good wishes!

tarhoosier
Posts: 181
Joined: Aug 2006

It is not a question about how long "they" can let him go. It is about HIM. He is in the driver seat.
Always was.
He decides.
It is up to him.
The radiologist may withdraw his recommendation for RT at some time in the future if the psa shoots up but the patient may still insist and the doctor must respond. The patient is in charge of his treatment.

2ndBase's picture
2ndBase
Posts: 220
Joined: Mar 2004

I had Gleason 9 and psa 24 and radiation alone, no surgery, killed all the cancer un the prostate. The surgery has much worse side effects and should never be done if the cancer has spread or if one is pretty damn sure about it. Quality of life is way more important than quantity and if you can avoid any treatment except for pain you will always have a better quality of life. Even the pain treatment has massive side effects but no one can survive being in a pain level of 9 or 10 for very long. Survival rate is dependent on whether or not the cancer has spread. If it has there is zero chance of a cure, which does not mean you are going to die from this cancer, other stuff happens.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Mrs Frank,

So sorry to hear of your husband's situation. As you are well aware, a Gleason 4+5 is very serious, particularly with the suspicion of extra capsular extension. One thing your doctor should have explained to you about PSA readings for high Gleason scores...the cancer cells in high Gleason patients become incapable of producing much PSA. A low PSA with advanced prostate cancer is quite typical. As others have suggested, an ultra-sensitive PSA test may give you a better idea of what is going on. Your husband should not b e complacent because he now has a low PSA score...the low PSA is what advanced cancer cells produce.

I am not sure that I understand your surgeon's logic in opting to remove the prostate when the PSA stayed constant for a couple of readings. It is very, very difficult to remove all of the cancer by RP alone for a Gleason 9 patient, even when they go after the nerves, lymph nodes, and seminal vesicles. Removing the prostate in cases like this does not stop the spread of cancer although it might slow the progression down initially. Prostate cancer will almost move toward metastasis when given the chance. Unless the cancer is completely contained within the prostate, surgery runs the risk of cutting across the margin of the cancer with the potential to spill cancer cells into the blood or lymph system. It is a good sign that there was nothing found in the lymph nodes and seminal vesicles.

I think your doctor is giving you good advice about the radiation. Typically they will radiate the bed of where the prostate used to be with IMRT radiation (about 40 sessions) as this is often where the cancer tends to spread first when it breaks free of the prostate. At the early stages of metastis the cancer is microscopic and will not usually be seen in a bone scan or other imaging techniques. Men typically tolerate this treatment very well although as Tarhoosier pointed out, if he undergoes radiation treatment before he has regained continence after the surgery he runs a higher risk of longer incontinence issues in the future but this is something I would want to discuss in detail with the radiologist.

Many times radiation is done in conjunction with hormone treatment. I suspect your oncologist has already explained this option to you as well. From what I have read, men with advanced stages of cancer who follow surgery with a combination of hormone treatment and radiation tend to do better with extended survival times. Your oncologist should be able to explain the studies that show this.

Without being alarmist, I would urge your husband to not become complacent with his PSA readings but think about the logical, well documented progression of this disease and educate himself on the various techniques your medical team will use to combat prostate cancer and slow its spread.

Best wishes for finding a successful next step.

K

tonahawk899
Posts: 9
Joined: Jul 2011

Hi: I am Anthony S. Winterer and you can read my story on Google by just typing my name in and scrolling down, I am a YANA mentor and am 21 months out with a Gleason 9 PC, going to see my doc and urologist this week for results of another ultra-sensitive psa test, it has been slowly creeping up to the 0.08 range the last 3 months, here's hoping for a 0.08 or less this week! As far as increasing survival with ADT and IMRT following a RP, my radiation oncologist said it would take it from about 35 to 70% at the ten year mark, and I believed that enough to follow my protocol, thanks, I hope this helps you, God bless you and your husband, tonahawk@msn.com

VascodaGama's picture
VascodaGama
Posts: 1533
Joined: Nov 2010

Hi Tony (Anthony; Tonahawk)

I am glad to know about your involvement at YANA. I have visited the site several times to retrieve information for my own case and for others.
Terry has done a great job for the PCa community and still continuing. I have no words to show my appreciation. http://www.healingwell.com/community/default.aspx?f=35&m=2252959&g=2253650#m2253650
(http://www.yananow.org/Mentors/AnthonyW.htm)

I hope Mrs Frank read your information regarding the difference in rates for RT alone or HT+RT protocols.
In your post I noticed your comment on the rise of your PSA. Hopefully the rise is due to other causes than recurrence but 0.08 from 0.02 is significant and you should consider the worse scenario if the influence of medication is over. (The levels of testosterone indicate such thoughts). Hopefully you get a satisfying answer from your doctor. Probably a return to hormonal is a good decision, but it should be done at a reasonable threshold level and coordinately after having the due tests.

Gleason scores 9 patients are particularly prone to recurrence due to the aggressivity of grades 4 and 5. In any case, I would be more sensitive to the quality of life which I believe to be very important when considering any additional treatment. Though we learn of the many that do well in knocking down the bandit using the whole “arsenal” the soonest, we also heard of the stories of those that live with cure but have lost their rightful way of living; In particular the young fellas with so many dreams and time to share with their family and friends.

Along my years as a survivor in the “trade”, I noticed that the treatments for prostate cancer, independently of being administered individually at each time or all together at once, lead to ambiguous outcomes. Choices are based on successes and success is based on past experiences and advised according to the highest rates.
Down the line there is a lot of guessing and at the end some do well and some do badly.

In my opinion, one should aspire in cure but trying to get it through one solo step, avoiding exposure to the risks and side effects to the maximum.
In the case of Mr. Frank I would give it time for healing before adventure into RT. His PSA (super sensitive 0.XXng/ml) will serve as a marker to inform when time is running out. His positive extra capsular penetration and extension of SV is critical and all indicative for recurrence; however the cancer does not form colonies in all cases. Our good friend and comrade Lewvino’s case is an example of positive ExCaP but long biochemical recurrence free survival (surely his case cannot be compared and his Gs is 7).

Wishing the best to your case.

Thanks again for your contribution at YANA.

VGama

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