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Posted 5/30/2016 4:28 PM (GMT 0)
I recently discovered this Forum--this is my first post.

A routine physical exam late August 2015, PSA of 6.3 and a nodule felt on the left side of my prostate during a DRE was followed by a biopsy in October (results in signature) and dx of prostate cancer. I decided for RALP which was performed just before New Year's Eve--surgeon spared one nerve, but removed the other. Should mention that my urologist was trained in urological surgery at Mass General, and oncology training at City of Hope.

Recovery from RALP has been relatively smooth, although frustrated that the return of continence has been slow--but it is returning.

Five weeks after surgery, my urologist/surgeon ordered PSA test--results was 0.2 ng/ml. He was not too concerned at the time, and indicated would take another test in 3 months. On May 12, I received the news that my PSA was 0.4, my urologist contacted me, and scheduled an appointment for the next day. The next week I met with a radiation oncologist to discuss options. RO would like to schedule a 6660 cGy in 37 fractions. The radiation would be 3D conformal radiation

Just before Memorial Day weekend, I met again with my urologist. He has suggested the following plan: another PSA at the end of June, if PSA is unchanged, then watch and measure again in two months. If the PSA continues to rise wants to start ADT immediately for 3 months, followed by salvage RT as described above, and maintained on ADT for 12-18 months. Then remove ADT and follow testosterone and PSA thereafter.

After the firs PSA at five weeks, I was not too concerned (neither was my urologist), but everything seems to have jumped into high gear since May 12.

I have tried to read as much as possible, which at times has really depressed me (especially concerns about mets), but I found this forum, and the individual stories and experience are more hopeful.

I know there are many experienced people on this forum and your thoughts on the above are appreciated. I am particularly nervous about ADT--I am a pretty active guy (about four weeks ago started cycling again 60-100 miles per week and do resistance training 3 x per week)--everything I have read about ADT has me concerned--but my urologist said to continue exercising, and that this approach is my best chance for a cure-- Thoughts?
Posted 5/30/2016 5:00 PM (GMT 0)
JWH, welcome, and sorry for what apparently looks like a failed attempt at cure.
There are many more knowledgeable guys here, so I will keep my comments short. Except to say that I believe I remember reading that salvage radiation accompanied by HT has often produced better results than SRT alone.

As far as the side effects of HT, I haven't had the experience but from what I've read here, the extent of side effects varies from individual to individual

Beyond that, best to leave it to the more knowledgeable and experienced guys here, and they'll be along shortly
Good luck, as you likely know, this situation can be managed very effectively. Not fun, but manageable.
Posted 5/30/2016 5:06 PM (GMT 0)
JWH -

I would certainly do another PSA test to confirm the 0.4-

You can figure, because the PSA has a long 1/2 life, the first test was too soon - Patrick Walsh says to wait at least 12 weeks - if I remember correctly-

Nothing is glaring in your post op pathology-

Labs do make mistakes!

Bobby Mac
Posted 5/30/2016 5:14 PM (GMT 0)
BobbyMac, that could be, I forgot, when posting that the first reading was. At 5 weeks.
JWH, sorry, to ammend my original response, it might not be a failed attempt at cure, as I would completely discount the 5 week reading. Especially with negative margins, lymph nodes, etc.
Posted 5/30/2016 5:56 PM (GMT 0)
Welcome to HW. I think your URO has a plan there. Get the .4 confirmed and then do the treatment. The ADT isn't fun and the side effects can be difficult to deal with, but the combo therapy does give the best chance of a cure.

Hang in there,
Andrew
Posted 5/30/2016 6:55 PM (GMT 0)
I think you should be talking to a radiation oncologist about this now, and not a urologist.

If there is one circumstance where we know that adjuvant radiation is the best thing to do, it is one like yours where the PSA has never become undetectable after surgery. Your rising PSA has already been confirmed at 5 weeks (Feb 5) and at 5 months (May 13), and it is doubling quickly, indicating imminent breakout. Any presence of Gleason pattern 5 (even at low levels) is highly prognostic for metastasis.

Three important clinical trials have now proved the benefit of earlier radiation over waiting. What are you waiting for? It won't go away on its own, and the longer you wait, the higher the chance it will metastasize (if it hasn't already). My only question would be whether it's broken out distantly already, and may be too late for adjuvant RT. You may want to request a bone scan and CT, although your PSA may be too low for detection with those.

You also need a different radiation oncologist. The method yours is using, 3D-CRT, is outdated and the amount of radiation is too low (it is low because the equipment is outdated - toxicity would be too high with higher doses on that machine). At the better radiation centers, a different method called IGRT/IMRT has replaced 3D-CRT. Because of your incontinence, you need a much more accurate kind of radiation to protect the bladder.

As for the adjuvant ADT, yes, you will need some. Just how much is an open question - answers range from 4 months to 2 years. It has proven benefit in cases like yours. Because they start ADT 2 months before radiation, and because of your high metastatic potential, I think you will want to get started on it ASAP.

I know this isn't what you want to hear, and your first instinct is to curl up and hide.

- Allen

Post Edited (Tall Allen) : 5/30/2016 1:21:18 PM (GMT-6)

Posted 5/30/2016 7:02 PM (GMT 0)
Welcome to HealingWell. Sorry you find yourself here but glad you found us. Hope we can help.

Nine out of ten times the advice we give here on the forum is to slow down, take your time, do your homework and then decide what to do. Good advice, that. But...

It seems to me that your urologist is dragging his feet a bit. PSA has a half-life and five weeks is too early... but... 0.2 is pretty high and 0.4 is higher. I can see another PSA test next month to verify the 0.4 but, if I were you I'd look to pull the trigger pretty quickly if the 0.4 level holds up.

A Gleason score of 4+3 -- with the pathologist muttering about focal bits that look like grade 5 -- puts you in a pretty high risk category. Unfortunately that sort of cancer seems to respond best to prompt, aggressive treatment.

As for being nervous about the ADT I very very much understand. One of my first postings here was about being scared at the prospect.

Hormone Therapy, the Pod Person and the Plan

But the advantage of ADT as a part of an attempt to salvage a cure is that it is temporary. If the salvage is successful then there will come a time when the shots will stop with you still on the green side of the sod. That's worth something.

Update: I see that the Tall One and I were typing at the same time again. That always makes me nervous since he is sooo much better at this than I am. But I am pleased to see that he and I are mostly in agreement on this one. Whew! (wipes brow.)
Posted 5/30/2016 7:38 PM (GMT 0)
Thanks for the input--I am having a bone scan next week. Rather than wait, I can request a new PSA next week. The urologist has indicated to me that if PSA is 0.4 or above, he wants to start ADT immediately. Thanks again.

Tall Allen: Should have mentioned that the RO only wanted to do SRT, but my urologist thinks I should start the ADT with a confirmation of PSA, and then this Fall schedule SRT. If ADT is started soon, will that put the "breaks" on and provide enough time to finalize the SRT approach?

Thanks again for the input.
Posted 5/30/2016 9:47 PM (GMT 0)
They typically wait 2 months after ADT begins before starting SRT. That gives it time to radio-sensitize the nasty critters. Two months should be plenty time to meet with other ROs who use more up-to-date equipment. D'Amico questions the effectiveness of ADT on radio-sensitizing Gleason pattern 5 (but I question his analysis). So, while it's likely that the ADT will hold it in check, no one can guarantee that waiting for the Fall will be a good strategy.

I'm not familiar with ROs in Orange County, unfortunately. I know UC San Diego has a good RO department, and of course, UCLA and Cedars-Sinai do. USC is experimenting with shorter treatment times for SRT:

/clinicaltrials.gov/ct2/show/NCT02446366
Posted 5/30/2016 10:12 PM (GMT 0)
I must stress what Tall Allen said in his post on finding another RO and radiation procedure. Image guided radiotherapy (IGRT), with intensity modulated radiotherapy (IMRT) will greatly decrease your long term and short term radiation side effects. For salvage radiation usually 72 grays or upwards is the standard treatment.

I completed 39 treatments of IGRT/IMRT (71 grays) right after new years. I had ZERO urinary, gastrointestinal or rectal side effects from the treatment.
Posted 5/30/2016 11:04 PM (GMT 0)
JWH, you can take TA's advise to the bank...Find a new R.O. one that has access to a newer LINAC. That's the machine that will be treating you.. You want to be treated on a Varian RapidArc or newer. 40 fractions, 1.8 - 1.9 Gy per fraction for a total of 72 to 76 Grays..Also, and this is just my opinion, you should try to get one of the newer full body scans that can spot prostate cancer at a very early stage. If they can spot the source of your rapidly rising PSA they can treat it much more effectively...

I would try to hold off on the radiation until the incontinence issue is resolved..Radiation will freeze progress in that regard right where it is when treatment starts..Starting the ADT now is fine, it will stop the spread of your cancer and put it into remission until you are ready to start the radiation..

One more thing....If you have never consulted with a Medical Oncologist now would be a good time to do so...They have seen it all and a good one will have valuable insights as to how your treatment should progress. They will know and recommend an RO that uses modern equipment and has a good track record..
Posted 5/31/2016 1:26 AM (GMT 0)
Thanks again all for the comments and insights--I will be talking to my urologist tomorrow. I have done some checking today, based on the comments, into the radiation oncology center I would be using--the center's website does indicate that the latest LINAC is used, plus the following techniques are available--

Three-dimensional conformal radiation therapy (3D-CRT)
Intensity-modulated radiation therapy (IMRT)
Image-guided radiation therapy (IGRT)

So apparently it is the RO--not the center, so I will take you advice and search for another RO. In the meantime, I will have a PSA test this week and jump on the ADT.

My wife of 40 years is very, very concerned--and with a brand new grandchild (3 weeks old) I am highly motivated to jump on this sooner than later--my only regret, was I thought with my path report, and the 5 week PSA, everything was still ok, and it was not until the May PSA test that I suddenly started to really educate myself--but I am not going to focus on what has happened--need to think about the present and going forward--something where I have some control.

Thanks again.

Post Edited (JWH_54) : 5/30/2016 7:52:39 PM (GMT-6)

Posted 5/31/2016 3:15 AM (GMT 0)
There have been a few most about elevated PSA and cycling. As a Triathlete, I am concerned about this factor as I too have my taint pressed upon 6 to 8 hours a week and I'm due for a post hdr Brachy treatment PSA in 4 months. I'm a little intimidated to get back in saddle. Has there been any discussion about the amount of cycling you do and elevated PSA?. I dont know if there are any studies substantiating a correlation but it is a good discussion that can't hurt.

Best of luck
Posted 5/31/2016 1:13 PM (GMT 0)
Brava--I was a little hesitant to get back on the bike and it was only late April (4 months after RALP) that I started riding again. When I was 59 (pre prostate issues) and riding a lot (multiple centuries per year), my PSA was 2.9 and a DRE was negative.
Posted 5/31/2016 1:53 PM (GMT 0)
JWH-

Do not know if this is applicable to you?

Antibodies interference with PSA testing

http://www.ncbi.nlm.nih.gov/pubmed/19264827

http://jco.ascopubs.org/content/30/5/e62.extract

http://www.clinchem.org/content/51/1/208.full
Posted 5/31/2016 2:21 PM (GMT 0)
you have gotten great advice so far. I was in your shoes - similar psa data and I acted promptly when psa hit 0.11. Had ADT along with radiation for maximum synergistic 'killing' effect. See my signature below for information. I just completed 37 sessions of IGRT - minimal side effects. Good luck.

Teddy
Posted 5/31/2016 3:23 PM (GMT 0)
Bobby Mac--thanks for the links--this is news to me. My only comment is that most of my career, I have worked around laboratory animals (mice). To be through, I should probably have a PSA tested at another facility, but using a different assay or have my sample pretreated with heterophilic blocking agents-not even sure how to go about this---guess the first thing to do when I go in this week for a new PSA test is to ask the lab tech what kind of analytical instrument they use and raise this issue.
Posted 5/31/2016 4:06 PM (GMT 0)
The heterophilic antibody thing seems worth talking to your lab about but I wouldn't get too hopeful about it. It seems to be pretty rare from the studies that Bobby Mac linked and the usual trigger for suspicion is a persistent PSA after RP for low-risk disease. For higher-risk disease there are other causes that, sadly, are much more likely explanations. Persistant PSA after RP for low risk disease may give the doctors suspicions that they are looking at a different sort of animal. "Well, it's certainly quacking," they might say "but look at how it walks..." Unfortuantely, your case seems to be waddling, quacking, with a yellow bill, webbed feet, and everything. It may be worth checking for chicken DNA but, chances are, it's a duck.
Posted 6/20/2016 4:11 PM (GMT 0)
Just thought I would post an update since my May 31 post. I have now had a bone scan and CT scan, both negative. I have a new Radiation Oncologist, who focuses on prostate cancer. He has spent a lot of time reviewing my case and also talking with colleagues. He is worried that I may have, micrometastasis and as several of you have indicated, does not want to wait too much longer to start ADT and SRT. He will use Volumetric Arc Therapy (VMAT) --I am meeting with him again this week, so I will report the exact protocol. Due to my continence issues (slow to recover but there are signs of recovery), he said he would be ok with waiting up to two months after we start ADT (I will start in the next couple of days), but advised not to wait longer. So I am looking at end of July or August to start SRT. I will stay on ADT for 6 months, then we will follow testosterone and PSA. He indicated to me that I probably only have a 20% chance that the cancer will be located in the fossa, but I am convinced it is worth a try as it is my only shot at a cure, although not a great shot.

He indicated that although I don't exactly fit the inclusion criteria, he is basing his approach on two recently published papers in The Lancet, details in ClinicalTrial.gov (NCT00110162 and NCT00423475), Duchesne et al (2016), Lancet Oncology, http://dx.doi.org/10.1016/S1470-2045(16)00107-8 and Carrie et al (2016) Lancet Oncology, http://dx.doi.org/10.1016/S1470-2045(16)00111-X

He is meeting with a group of ROs up in LA this Wednesday and will present my case, and said if there is any additional input or insights, or suggested approaches, he would let me know.

So having a complete blood workup this week, including testosterone and another PSA, and then we will start. The only thing that would change the currently trajectory is if my PSA was lower--but he indicated that was not likely. Thanks for all of your input--it provided the directions to seek out an additional RO, and I am comfortable with the plan going forward. Any additional insights would be appreciated.
Posted 9/28/2016 3:53 AM (GMT 0)
Just thought I would provide an update. Started ADT (Lupron) beginning of July and just completed 7 weeks of SRT as described in my previous update. No significant side effects of SRT (some minor bowel issues). The ADT has been the most challenging--the biking and gym help, but I do experience hot flashes, particularly several times at night, which disrupts my sleep.

The plan going forward is another Lupron injection this Friday, and then at the beginning of the new year start following testosterone and PSA-no additional Lupron unless PSA starts to rise again. My RO indicated that he wanted a blood test this week (testosterone and PSA), expecting testosterone to be at castration levels and PSA undetectable. Thats it--just thought i would update and will continue to update as I move forward.

I want to thank everyone again, especially Tall Allen, for input--the original plan was to not start SRT until this Fall, and the comments here motivated me to fine a new RO, which resulted in starting ADT and SRT sooner than later. Now to just wait and see how things progress.
Posted 9/28/2016 4:31 AM (GMT 0)
JWH

You may have pic but your mind is where it needed to be. I congratulate you for seeking out knowledgable information, not be frozen with fear, and getting on with the program that has the possibility of success. Proud of you and your actions- they were correct. Praying for death to those destructive little pic cells.
Posted 9/28/2016 5:29 AM (GMT 0)
I'm glad you came through the SRT with minor SEs. Now comes the hard part -- waiting.
Posted 10/4/2016 6:08 PM (GMT 0)
Just another quick update: my testosterone was 18 ng/dL (pre-lupron, July 1, 2016; 717 ng/dL). PSA <0.1 ng/ml.

RO decided to also do a CBC and put off Lupron injection until this week. Just received my CBC results and my hematocrit was down to 39 (pre-Lupron 46.6) and my hemoglobin was down, 13.1g/dL (pre-Lupron 15.7 g/dL) all other blood values (WBC, platelets, etc lower, but still within normal range).

As indicated in my messages above, I continue to cycle and go to the gym on a regular basis--every weekend since May, I am cycling with my friends (25-30 miles per ride), I don't experience shortness of breath when exercising and I am not wiped out afterwards.

Have not had the second Lupron injection yet--waiting to hear from RO, as I just had the CBC on Monday.
Posted 1/26/2017 11:32 PM (GMT 0)
A quick update-focused on urinary incontinence.

First, still in the waiting mode--had my last shot of Lupron on Oct 5th, testosterone in November was 19 ng/dL, and PSA was undetectable (as would be expected). Next blood test is first part of March--and every three months for now.

My main reason for posting today is to discuss incontinence--I have been, unfortunately, one of those individuals who was still experiencing significant incontinence 6 months after surgery (5+ pad per day). With my increasing PSA, I made the decision to have radiation plus ADT (this forum was very helpful in that process). However, I was told by my urologist, my RO, and others that the downside of having salvage radiation would be my incontinence issues would likely be "frozen" at its current state---no further improvement and my level of incontinence would be the "new normal" for me.

My radiation treatments ended in mid-September, and I can state that my incontinence has improved significantly and I believe continues to improve. Yes, tt has been slow, but I am now completely dry throughout the night, and have gone from multiple pads throughout the day, to just two pads per day. Back in August 2016, I fretted that if I was "frozen" at 5+ pads per day, it would be hare to be active and to travel. However, when traveling now (car or plane), and I can get the urge, I can get up and make it to the bathroom (this was not always possible just prior to the start of ADT and radiation). Although I continue to have stress incontinence, this has not stopped my activities (walking, cycling, going to the gym) and I continue to see improvement-

I am hopeful that I may someday regain complete continence, and if not, I am ok with this level of the "new normal". I wanted to share the fact that one's condition can continue to improve and it can get better over time--even when you are told that it probably will not.
Posted 1/27/2017 1:50 AM (GMT 0)
Great news on your improving continence. I hope the trend continues.
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