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Father was just told of recurrence

Ace44's picture
Ace44
Posts: 47
Joined: Sep 2015

My father was diagnosed with cancer and had his prostate removed 5 years ago with no other treatment besides surgery. His PSA levels were 0 for the first two years and then gradually started climbing. We have an appointment on Friday with the radiation oncologist and wondered if anyone would give me a list of questions that might be good to ask. I of course have done some research of my own but don't want to miss anything and want to be as informed as I can when the appointment is done. Is there anyone that has had a recurrence and can offer some insight on what we can expect? My dad just turned 70 this year and is in otherwise good health. Would appreciate any help!

Thank you-April

bob33462
Posts: 78
Joined: Feb 2016

Ace-

Here is a list of questions I asked the RO -

What is your dad's PSA?

A paper just published in this month’s issue of the Journal of Urology has suggested that the true cutpoint for PSA levels indicative of biochemical recurrence in the highest number of patients is actually 0.4 ng/ml (as opposed to the oft-stated 0.2 ng/ml).
www.jurology.com/article/S0022-5347(15)05530-5/fulltext
/prostatecancerinfolink.net/2016/06/10/is-standardization-of-psa-cutpoint-for-biochemical-recurrence-after-surgery-a-good-idea/

1. RT, with or without ADT, shows a benefit of remaining recurrence free over a period of time. Does that translate into a cancer specific survival time period benefit?
2. How large a dose do you propose for the prostate bed? > 70 Gy
3. For the first time, a randomized clinical trial (GETUG-AFU 16) has proved that adding a short course of androgen deprivation therapy (ADT) to salvage radiation therapy (sRT) improves the progression-free survival over sRT alone.
4. Should ADT be started before RT and concurrently?
5. Is Short term ~ 6 months okay? Is the optimum duration of ADT use related to the patient’s pathological findings – pre-treatment PSA, Gleason score, stage, and positive margins?
6. Would stronger forms of androgen deprivation (e.g., Zytiga or Xtandi) improve outcomes?
7. Would immune enhancement (e.g., Provenge, Leukine, Yervoy, Keytruda) improve outcomes?
8. Are there biochemical markers (e.g., Decipher™ or CellSearch™) that may be used to identify patients more likely to benefit?
9. What dose lymph nodes (50 Gy) - if needed?
10. How do you plan to prevent bowel toxicity? How will you account for the separate movement of that area and the prostate bed?
11. What kind of machine do you use? (e.g., Truebeam/RapidArc, Tomotherapy, Vero, etc.)
12. What kind of image guidance do you propose? fiducials/Calypso transponders in the prostate bed (best answer)? Using the fixed bones or soft tissue only?
13. How will prostate bed motion be compensated for? Cone beam CT? Moveable bed?
14. What measures do you propose to spare the bladder and rectum? What dose constraints do you set?
15. What side effects can I reasonably expect? How should I deal with them?
16. How will we monitor my progress afterwards, both oncological and quality of life? 
17. How many salvage radiation procedures have you done? Results?
18.  What's the best way for us to communicate if I have a question or issue?

Best wishes to you and your Dad!

Ace44's picture
Ace44
Posts: 47
Joined: Sep 2015

Thank you so much for this. None of these were on my list. I appreciate you taking the time do reply in such detail. 

VascodaGama's picture
VascodaGama
Posts: 3045
Joined: Nov 2010

April,

The typical salvage treatment for a case of recurrence post surgery, is radiation that could be done in combination with hormonal therapy for improved outcome (as commented by Bob above), however, the choice can also add chemotherapy depending on the present clinical stage of the patient. Your dad had surgery 5 years ago but this recurrence indicates that the metastases were established before that, which makes the pathological report from the surgery and initial findings (image studies, bone scan results, Gleason score, PSA, etc) important items to consider when deciding on the type of the salvage therapy. For instance; if lymph nodes involvement were present and the aggressivity of the cancer was above 9, then an aggressive approach would be more appropriate.
Another aspect goes to his other health issues. He seems to be fit but if he had in the past any case of colitis (ulcerative colitis) then radiation may be prohibitive. A colonoscopy done before the radiation could reveal any existing problem.

I wonder if previous data were given to the radiologist, or if he has intent in doing extra exams to try locating where the cancer hides. You do understand that without targets radiation will be done on guessing, and no one can expect to be successful in throwing arrows in the dark and hit the bull's eye.
Bob asked for the PSA results because these may validate certain exams (such as PET or MRI) as beneficial in deciding on the field of radiation. It also would influence the isodose plan (higher doses of grays at certain areas).  

All treatments have risks and cause side effects. Your dad should consider also the treatment protocol regarding his quality of living. I would recommend you to include in your list of questions items on the above subjects. Please note that he doesn't need to start the salvage therapy the soonest. I would get second opinions from other radiologists and medical oncologists before making a final decision.

Here are lists of questions posted before that you may adapt to yours;

http://csn.cancer.org/node/224280

Best wishes and luck,

VGama

 

Ace44's picture
Ace44
Posts: 47
Joined: Sep 2015

Thanks so much for your reply. I will be sure to add your comments and questions to my growing list. From the sounds of what I have read here and on different websites, it doesn't sound like the cancer will ever be gone...just managed? Is there a reason that radiation isn't done after prostate removal initially? He said that his surgeon felt like they had gotten it all during the surgery but that some rogue cells were still there apparently....

Will Doran
Posts: 207
Joined: Sep 2015

Ace44,

I had a radical Prostatectomy (robotic assisted) in Dec 2013.  I was put on Lupron shortly after the surgery and then 4 months later I started 8 weeks of radiation. That was all done in case there were any cancer cells that were left behind during the surgery. I was diagnosed with a PSA of 69 and a Gleason of 7.  I was given the option of all radiation treatments, but wanted the cancer removed.  Radiation would not have worked, anyway, because of a birth defect that was found during surgery. Post surgery showed no Bone Mets but one very small spot in one lymph node.  I was listed as an Aggresive Upper Stage 3, and they treated me as if I were an Advanced Stage 4.   I was on Lupron for 2 years and have now been off the Lupron for 5 months.  My PSA dropped to <0.010, 2 months post surgery and has remained there ever since ( as of last month).  My Testosterone is starting to come back up and is  now at 134 from a low of 17.  Normal is between 250 and 1,100.  So, my "T" is still very low.  Quality of life has been rough but is improving. 

Study and ask all the questions you can. The list above are very good, so ask as much as you can.   Be fully educated about the situation. As has been suggested.  And please think about quality of life. 

Know that You and your Father are in my Thoughts and Prayers. 

Peace and God Bless

Will

Ace44's picture
Ace44
Posts: 47
Joined: Sep 2015

Thanks Will. My dad thought his Gleason was a 6 or 7 and his most current PSA was 8.8 and he wasn't sure about Lymph node involvement...this is why I am going to the meeting...his attention to detail is not that great. I had my own battle with cancer last year and I know how important it is to understand things and have good notes to go back to.

I hope you continue to improve every day. Thank you for taking the time to respond to me.

April

Will Doran
Posts: 207
Joined: Sep 2015

ACE44

God Bless both of you.  These are hard battles as you know.  Fight like the devil, and don't back down.  I hope and pray that you both continue to improve, as well.

Thank you for your wishes.

Peace and God Bless

Will

VascodaGama's picture
VascodaGama
Posts: 3045
Joined: Nov 2010

April

As Will explains above some PCa patients (depending on the case) are recommended for a protocol of two radicals: surgery plus radiation (administered after healing from surgery), but when doctors are not sure of existing metastases (extra capsular extensions) they prefer to do surgery and then wait till apparent recurrence is verified. This may have been the choice of your dad's doctor. Nothing is wrong with the approach. However, if he has recommended initially the combine therapy (surgery plus radiation) then your dad's case was found to be advanced from the beginning.
As I commented above, you should get a file on the data of 5 years ago. His doctor (probably a urologist) should have it and you will need it to pass it over to a radiologist. Just inquire in the hospital he had the surgery.

The PSA of 8.8 is very high for a case of recurrence. Was your dad monitored periodically? What is his PSA histology?

Is he experiencing any symptoms? How about the side effects caused by surgery?

We can opinion and try helping you to understand things. Be strong.

Best wishes,

VG

 

Ace44's picture
Ace44
Posts: 47
Joined: Sep 2015

VG-They had been monitoring his PSA annually. The first two years he said it was at zero...then it went to 0.4...then 8.8. Again, I'm not sure how accurate all of this is and what he may not remember or isn't saying. He said that after it went to 0.4 they were just going to monitor more closely but then didn't have another screening for a year. As far as I know he is not experiencing any symptoms and has had no side effects from the surgery. He has been pretty private about sharing things with us so I am hoping that by going to the appointment I can get all of the stats from the surgery. His PC was found almost by accident when he went in for back surgery...I don't know if he had been getting annual physicals before that and having his levels checked. When do they usually start testing annually for rising PSA levels?

Thanks again for helping me to understand a little better-April

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Suggest that you ask got all copies of his Prostate medical test results and office visit notes

VascodaGama's picture
VascodaGama
Posts: 3045
Joined: Nov 2010

Yes, April, it is possible that the PSA result is mistaken. The data you provide of two years in zeros, then 0.4 and then 8.8 is suspicious for errors. In any case you will find out at the next consultation. Do not worry for the moment.
PCa (PSA) screening is recommended for men at their 50th but many doctors do nothing untill something occurs. Your dad may have started by the time of his back surgery. High PSA may drive patients to get a biopsy which may diagnose the cancer.

Hope for the best,

VG  

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