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7 years later... Radiation treatment, now a 400 PSA level
You guys were amazing when we 1st went down this journey in 2008. Dad decided to do IMRT radiation therapy and had 1 extra treatment. PSA came under 1 for 3-4 years, then slowly started rising. It has gone from 220ish to 400ish in 6 months (now, 8 years later). He did have a brother die in his 60s from prostate cancer, but his gleason score was 3+3 (6) and appeared slow growing at the time.
In the last year, my mom - his wife of 53+ years has passed. General practitioner is talking about hormone therapy and sending him to a new urologist since his prior one retired. So a couple of questions...
1. Should he see the new urologist and also his oncologist from 8 years ago (if he's still in practice)? Who's the best to follow him up in care? Who's the best to direct his care at this stage?
2. At 400 PSA, after IMRT radiation treatment that brought him back under 1 for a few years, how concerning is a 400 level? Should he have additional test like PET scans?
Thanks in advance for you help... if you would like to read his original thread, I managed to find it ...
Re: 7 years later... Radiation treatment, now a 400 PSA level
I would agree with Fred. I would get a referral to a Prostate Cancer Center if there is one nearby. You need oncologists and not a urologist at this stage. What about a referral back to the center that did the original radiation treatment. If you tell them he has a PSA of 400 and it is doubling in less than 6 months you should be able to get hormone treatment started in a few days.
Something obviously "went off the rails" on his follow up after radiation treatment. This problem seems to occur often between GPs and specialists.
Just had dad read his numbers to me tonight (after telling me twice he'd gone from 200s to 400s). Made him actually pull the piece of paper out... he is 4.41 up from 2.?ish 6 months ago. Up until that point he's just had a very gradual increase up to the 2.28 level (no doubling). The fact it had almost doubled in 6 months made his PCP refer him to a Urologist (new since his previous one retired) to potentially get a hormone shot.
Thank you Fred & Frank for the quick responses! I'm going to try to also get an appointment with his previous Oncologist who did his original radiation. Also, since my mom passed a year ago, he has not been eating as healthy as he once did.
I've read some people do the on and off hormone therapy, others do continual hormone therapy as long as they can tolerate it. I'll be reading thru the stories here, but if you have any "advice" I'd appreciate it.
This was his original info from 3/2008 - he had IMRT Radiation 5/2008 - 7 years ago (and did receive one extra treatment to increase the chance of it not reoccurring and since we were looking at Proton therapy which had a higher Gy amount).
3/2008 - Age, 71 = Gleason 3+3=6. Left Apex, 40%, Right Apex, 15%, Mid Left, 15%, Mid Right, 5%, Upper (aka base) left and right 0%, 0% (aka the area near the bladder I think if I got the directions right).
Dad has a current PSA 6.75 (other than his brother's death from cancer in his late 60's, they probably would not have biopsied his prostate).
Well that is a much better picture. If he decides to go hormone, I would recommend intermittent. Much better quality of life. He could also get some advanced imaging that might tell you exactly where the cancer is. A mpMRI is one option and a C-11 acetate pet/ct scan can show cancer in tissue and lymph nodes. An F18 bone scan can show cancer in the bones. I believe if he had all of these scans it would show where the cancer is located and you may be able to treat just that location. If the cancer is still in the prostate he might be able to have one of the new focal treatments like Focal Laser Abalation or Cryotherapy..
Please take a look at my Survivor Story on this site with special attention to my experience with Hormone Lite to see if there may be something there that you, your Dad and his oncologist may wish to consider.
Thank you Don for pointing me in your direction! Going to read now... my dad's name is Don as well :-) I'm an analyst at heart, and I really appreciate the fast track to the the important information.
If you ever need any info about Craniosynostosis (premature closure of the skull sutures in infants), I'm a wealth of info. I know message boards are the fastest track to getting to the heart of the information needed to navigate an illness.
So I got my hands on Dad's actual PSA paperwork/results today. Appointment with the Urologist that Dad didn't want to cancel, so I was there with him. He has a bit of dementia, but is still driving and living alone... just needs reassurance in new situations.
Why do doctors have to be so impersonal. Urologist was nice enough, a bit short and very much like "this is what I'm doing, you can ask, but this is it".
Dad lost his wife (my mom) of 53 years on 4/4/14. He hasn't eaten as well as she made sure he did in the last year, despite us bringing him healthier foods. On 04/02/14 his PSA was 2.77 - post radiation the lowest it got was 0.67 (2008) and then spent a year at 0.81... it's slowly crept up and it went from 2.77 to 4.41 in 12 months+ (4/2/14-4/27/15 - not 6 months like I'd thought).
So the urologist is going to have him do a CT Scan and a bone scan (with contrast), and said after that he'd put him on a testosterone blocking shot and would continue it for the rest of his life (not intermittent). He said he finds patients like my dad last 10 years on this without becoming prostate cancer resistant and he had patients in his 90s on it. He didn't like me asking lots of questions, but did directly answer mine even though I mentioned I'd done research on a message board... lol, probably should work on my delivery of why I'm asking what I am. He did say they consider Prostate cancer to be recurrent when the PSA has double over 15 months and we are close to that. With the changes in diet and stress over the last year, guess I'm a little more like lets slow things down just a little bit and see what's going on.
I asked about if Dad could have had a bladder infection and if it was worth doing a round of antibiotics and retesting... he said his urine was clear and after the CT/Bone scan he WOULD be getting the shot/testosterone blocking shot. PSA taken on 4/27 - urine on 5/5 - still could have had something going on... worth a CHEAP second PSA test in my opinion.
I'm calling tomorrow to see if we can at least get a consult with the radiology oncologist that treated him in 2008. He's the head of the radiology department and I ADORE him... I'm not sure if he ONLY works as an oncologist with radiology, but if he will at all treat him, or even give us a second opinion, I'm all over it. Have the UTMOST respect for this man and his opinion.
My gut says, at least have a 2nd PSA level drawn before going all in on lifetime shots that deprive the uptake of testosterone.
Any direction you guys can give would be very appreciated. Thanks again for all your help!!!
Also remember, I'm trying to help my Dad make decisions and he's apt to just do what the doctors say and not buck the system... walking a fine balance of making sure he gets the best treatment and not pushing too hard. :-)
I think I would go to someone else. There is no value in a bone scan since the urologist said he would be put on hormone treatment anyways and I've never heard of a bone scan showing anything with such a low PSA. I would certainly consider no treatment for your father for now is probably the best treatment.
I switched from a urologist I didn't feel comfortable with and went to a prostate cancer center and I feel that was the best decision I made.
I think your feeling that this is not the best urologist for your father is right.
I agree with Frank. You need a medical oncologist specializing in prostate cancer. Doing intermittent ADT will be much easier for your Dad to tolerate. Many studies have shown it just as effective as continuous ADT. Since he already has some dementia, continuous ADT will make this worse.
A second opinion from a medical oncologist may be the next logical step for you and your father.
Until the location and or nature of the presumed recurrence has been identified a radiologist's expertise is unlikely to be of much help (strictly my humble layman's opinion).
Re: 7 years later... Radiation treatment, now a 400 PSA level
Hi Beth and welcome back. Reading your post triggered my memory from years previous. If I recall correctly, you were after a 17 to 20 year, good quality of life for your Dad. I note your Dad underwent EBRT and sadly it would seem he now has experienced biochemical recurrence (i.e. nada of 0.67 plus 2.0). The issue, which your Urologist is correctly investigating is whether or not the recurrence is localised in the prostate, which is possible but the way, or the more probably likelihood that extra capsular penetration, and thus micro metastases has occurred. In either case it is still early days in terms of your Dad's disease progression and the 17 to 20 year window that you were originally seeking still a very achievable possibility.
After you have received the appropriate expert medical opinion relating to your Dad's PCa recurrence, due consideration will have to be given to the need for treatment (if any) and the quality of his life. Should the recurrence be localised than a curative window may still exist for a treatment such as HIFU. Needless to say a great many other factors need to be taken into account prior to consideration of any active treatment, in particular your Dad's dementia and the loss of your mother. In essence, perhaps you need to ask yourself is the necessity for active treatment the same as it was all those years ago?
I think the medical path you are currently taking is entirely appropriate. Your Urologist is well qualified to oversee hormone therapy and the time frame (10 years) he refers to, whilst a tad optimistic (norm is 3 to 5 years) can happen. Should further progression become evident, referral to a medical oncologist is the next step.
I remember Terry telling you all those years ago to carry on with life despite the label of PCa. What's changed? Absolutely nothing, Terry's words are still good advice.
Thank you John for your great words of wisdom, and I took a small part of everyone who's replied into Dad's appointment today with his Radiation Onocologist from 7 years ago. He's only 5-7 years younger than my dad (Dr. is 71-73), but is the head of the department and treats every patient like it was his mother/father/son or daughter. He truly is one I trust.
Here's the basics we came away with... posting it here to help me process and in case it helps someone in the future.
1. Yes, it does appear Dad's prostate cancer has returned at some level, but we are on the early level of catching it so we have a little time (couple of months) to look at all the tests and approach his treatment to give him the best quality of life.
2. The CT Scan (abdominal/pelvic) and Bone Scan will help us determine how the cancer has returned.
3. While the Urologist did a prostate exam, he did not comment on it. Today the Rad Onocologist did one and said he felt a hard nodule on the left side (which is where the largest section of the biopsy showed active cancer prior to IMRT treatment - 40%). All the urologist said was after the tests, he'd see him within 24 hours and start the shots. No discussion of what kind or side effects and he's be on them for the rest of his life. Again, Dad's original urologist has gone out on early medical retirement, and this one was a new doctor who spent less than 10 minutes total talking to us including the prostate exam.
4. Depending on the tests, there are a few options Dad might have that we 1st heard of today... 1 is to go to Emory (Atlanta) for a specific MRI and possible direct radiation shots into the prostate gland (he used initials to describe the therapy, but I didn't catch them). This would for sure be the Prostate Cancer Center, but not sure if it's truly an option yet. Not sure Dad will want to go to that level unless we feel confident it's a superior treatment option. The other option that *might* be available is radiation seeds implanted into the prostate bed should the cancer still be contained within the prostate bed. There are some side effects from this and we won't go into it until the test determine it might be an option.
5. The positives of any alternative treatment is avoiding/delaying hormone shots as memory and positive mental state is a concern with him (he still lives independently on 20+ acres, cuts grass around the house, spreads wood chips - his physical labor of choice in dealing with mom's passing, still drives during daylight hours, has his morning coffee buddies daily and weekly grief group. He lives independently now and while he may want to downsize in the next year or so... keeping him independent as long as possible is something we surely want to factor into any treatment.
6. Salvage surgery or anything like that is out of the picture as the cons out way the pros for us at this time.
7. His Radiology Oncologist will meet with us after the CT/Bone scans and let us know what if anything he can do from his angle, as well as ALL the options he has for treatment, and will fully inform us of the risks. Then dad will make the decision if there are any options available outside of hormone therapy he wants to explore. Regardless, he will be referring us to a medical oncologist who can/will follow up on dad's treatment.
8. When I say finding doctors you trust and can just talk to one on one is so important, I mean it. Give us the pros/cons and let us make a decision. We were SOOOO very fortunate to have that in his team originally... neither his original Urologist (retired) nor the Radiation Oncologist we saw today ever tried to sway us one way or the other... they both just put the pros/cons/statistics out there and made it Dad's decision. While I'm sure the Urologist Dad saw a couple of days ago is a fine doctor, his ONE approach and limited time spent explaining things just didn't sit well.
John, base on your BCR discussion of nadir +2 (in dad's case, 0.67+2=2.67), that gave me a place to look more in depth and a place to see when Dad met that criteria. I found this article and it was helpful to my understanding with re-occurance. Posting it here in case it helps someone.
Re: Great Doctors make all the difference in outlook
Mayo Clinic identified my recurrent cancer ( a 1.1 mm nodule) by choline scan in 2012. FYI I was 76 at that time. Because of its relevance to you and your father, a quote from my ongoing online journal appears below:
" Dr. Qu Ting Edge referred me to a radiation oncologist for the development of a treatment plan. This specialist recommended seed implantation preceded by a three month regimen of ADP. While in his office this clinician provided my wife and me with a published research article he coauthered The reported outcomes are as follows;
-- 75% achieved biochemical control for the 4 year followup period
--47% experienced serious urinary side effects, 12% of these patients required minor surgical intervention, 6% required major surgical intervention
--29% experienced serious GI complications, one of these patients required major surgical intervention
These results struck me as unacceptable, and I so advised the clinician.
This same article cited cryotherapy as being somewhat less effective. Earlier during my visit Dr Q T offered to arrange a meeting with their cryotherapist. After reviewing this article I contacted Dr Q T's office and declined the opportunity to meet with this specialist."
I am not suggesting I made the "right" decision. I just wanted you to be aware of the outcomes of this one study.
My complements re organising your Dad's medical consultations so expeditiously. Your plan of attack is very focused to the task at hand, essentially to identify if the recurrence is localised or otherwise. Given the information you have shared with us thus far, I am leaning toward localised. It is all just speculation at this stage, do let us know when you have a definitive diagnosis.
Reading between the lines I think you will be seeking some form of active treatment for your Dad. Whilst brachytherapy may be an option, prostate volume if over 50 cm, may be a mitigating factor. Anyway we are getting way ahead of ourselves. Get cracking with the research, there are plently of recent papers of treatment options for recurrence of PCa, just bare in mind that there is little in terms of consensus in academic circles as to the most appropriate medical intervention for PCa.
Met with Dad's Radiation Oncologist again today after his Bone and CT scans. Mind you, he is meeting with us with less than a 1% chance he will be able to utilize his specialty. He's just that good of an oncologist that feels a duty to help Dad transition to the appropriate doctor to continue to follow his care. Knowing we were in a bit of a vacuum, he stepped in to guide us from point A to point B as he was part of his prior team 7 years ago when dad decided radiation was the most appropriate option to fight his Prostate Cancer.
While there is a small chance for salvage radiation/seeds/ or other options, he immediately said he does not recommend it as the side effects do not justify the quality of life issues you might risk. So immediately, anything he could offer was off the table.
CT Scan: Did not show any involvement of the lymph nodes and the prostate bed/gland remaining was uniform in size and did not indicate any growth. Potentially still contained within the prostate bed.
Bone Scan: Completely normal EXCEPT for a "hot spot" in the right sinus area underneath the eye socket. It did not have hard borders like the bladder area, but it did light up with softening at the edges.
They said it could be from recent trauma/fall (no), sinus infection with bone involvement (?)... Dad has upper dentures and has for a while - dr said that shouldn't matter?. Oncologist sent him for a facial series of Xrays and did not think it was related to prostate cancer possible recurrence, but wanted to be thorough.
At this point, we are going to wait for 2 months and redo the PSA level to see how fast it is rising (hoping for a fluke test), but know that in the next months he's probably looking at hormone treatment, but making sure he/we are fully informed and facing it head on. Again, don't want the memory loss to get worse. It's not forgetting to take meds or take care of himself or directions or words (like you might expect from Alzheimer), but more like going over the same thing over and over again like an ability to comprehend new situations.
Also, curious what the Bone Scan lighting up in the right sinus area might mean... hope there is an easy explanation, but not completely ruling out if that could be related to the memory issues or not.
Thank you again to EVERYONE who has posted/commented/pointed us in the right direction here... we take every comment here to heart and read it and use it to understand his situation better. Thank you!
Medical Oncologist not necessarily = or Greater than Radiation Onocologist
Well, that was an interesting appointment with the Medical Oncologist.
After taking some history and questions about current symptoms, the Med Ono started discussing treatment options. He never reviewed the CT scan or Bone scan with us. He started with you've had EBRT/IMRT several years ago and declined to do brachyotherapy(sp?) as recommended. Uhm, while it was discussed as an option and dad was a good candidate for it, it was never presented as a much superior treatment option for dad. After thorough consideration of the pros and cons of all treatment modules (including proton therapy), Dad settled on EBRT/IMRT and everyone of his team and family fully backed his choice.
He went on to say I don't see you wanting to try that now. So your other options are to treat not cure the cancer. One way to do that is with medical castration and went into about a 5 minute detailed discussion of the specific of what they do during that (ok, I know it's an option, but I could feel dad squirming - heck I handle medical stuff well and I was squirming).
He then said the other way we can achieve the same goal is hormonally with shots. He went on to discuss Hot Flashes, muscle weakness, and fatigue as the main side effects. Dad said sign me up! (yeah, after just hearing exactly how they could medically castrate you I'm thinking a shot once every 3 months sounded good).
I asked about mental confusion and depression, and he said those could be side effects but normally are not that bad. I asked about intermediate therapy and he does not recommend that as he says there are studies to show it can cause the cancer to become resistant faster by allowing the none testosterone thriving cells to grow faster. He went on to discuss a few additional things we could try should it become hormone resistant (mentioned a prostate cancer vaccine - wrote the name down, but it's in Dad's medical folder) as well as a few other drugs. Oh and he also suggested Dad have the MedRX genetic test for the BRAC3 gene since he has 2 family members with prostate cancer (Brother who died from it in his late 60s after aggressive therapy and Father who died at 88 with prostate cancer but not directly from it). Dad did do the test more for me and my brother and my son/ his grandson.
He asked dad when he wanted to start shots and he said next Thursday.
That night Dad was calling me asking if I thought he should wait a couple of months before starting the shots (which the Rad Ono was on board with to kind of see how he's trending). Since that time I've done nothing but pour over the site, survivor stories, research, Dr. Barken's lecture on Proscar and Casodex, Dr. Meyers patient protocol, dad's history and how slow it has been to reoccur, nutritional supplements, dietary changes, ...
I called the next day and asked his nurse if there were any other treatment options since we aren't sure if the doctor didn't get there after dad said sign me up for shots after the castration lecture. Also, asked if he should wait until he actually had a PSA doubling time of 12 months (his PSA test on 5/28/15 was 4.93 (after 2 DREs in the last 2 weeks - but up .5 in 1 month). She called back that afternoon and said the doctor still recommends the 3 month Luperon shots, but he is okay if Dad would like to wait before starting. We canceled the shots for next week and will keep his appointment in 3 months to further discuss options.
So, I have 3 months to research and do any dietary changes/supplements with dad. I'll post something in the next day or two with my thoughts on what we can do over the next couple of months.
Doubtful dad would travel to Virginia to see Dr. Meyers, but will look into if Dr. Barken is still doing phone "coaching". Eventually, I'll create a survivors page for dad with all this info. So thankful to have those to look over right now.
Re: Medical Oncologist not necessarily = or Greater than Radiation Onocologist
Still plan out putting out all the clinical data I have at some point and my thoughts, but just spoke with a relative who's husband has significant BPH and she recommended their Urologist who I've often felt had similar "whole body/person treatment goals" that I'm looking for with dad. Turns our he's written a book "The Decision" and Terry linked his worksheet for treatment decisions...
I'll be calling on Monday to schedule an appointment as over the next several years, I'm sure dad will need a urologist of some type since his original one retired. Can't tell you how excited I am to find this resource locally without having to travel to Atlanta over an hour away.