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3 month PSA post CK- Heading in right direction

JJPhare
Posts: 34
Joined: Apr 2011

Diagnosed 3/11 with Gleason 6, T1c, 2 of 12 cores positive 10%, PSA 14. Age 62.
After much research on these forums, reading posts regarding all options and after much prayer, decided to go with CK in Lafayette, Co even though my Kaiser insurance did not cover. My only options with Kaiser were 40 treatments of radiation or DaVinci robot with a moderately experienced surgeon. My 5 treatments were every other day ending on July 6.

First 3 month PSA is 2.6. At least it is in the right direction!!!! Does anyone know if supplements are of any benefit to what I have left of a prostate?

My understanding in that it will take up to a year or more to reach a nadir however Kaiser indicates that "normal" PSA for my age is 0.6-4.5. I have seen where scores above 2 cause a concern for biopsy. What is an acceptable score for post CK and why does Kaiser think that 4.5 is acceptable? I went over 10 years with steady PSA of 8 but there was no concern by the urologist until it got to 10 in February and then 14 in March.

As stated by others, the mode that you choose is always personal and must be right for you.
I am glad that I went with CK. My side effects were burning, frequency and urgency for two weeks. I still have erections but very little ejaculate. Incontinence is minimal and infrequent, but it does occur. I do find that when I run or walk for a long time, there is some discharge from the rear end. I'm not sure if that is related to CK but it didn't start until recently.
Thanks to all of you for the support and I hope that I can be of some help to those who will face the beast.

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

JJ,

Congratulations on completing your treatment and joining the "survivor" club. I also admire your commitment to foot the bill on your own. I hope they gave you some sort of discount.

I'm not sure what you mean by "supplements." Are you talking about vitamins, Viagra, or what?

At nearly 18 months post CK my radiologist thinks I am not yet at nadir (0.8 ng/ml) and has told me that it can take as much as three years to hit nadir. He also thinks I'm dropping in PSA readings "ahead of the curve." You also have the "bounce" phenomena which might see a temporary rise in PSA for a few times before heading south again.

The data you seem to be referring to from Kaiser is for men who have never had any treatment for prostate cancer. During CK, your entire prostate was radiated and subsequent PSA tests cannot be compared to men who have never been treated.

Your diminished ejaculate is a normal result of the CK treatment. I know that the short term burning and urge to go to the toilet frequently is a common side effect of CK and you seem to be past that now. I don't think the sporadic leaking or rectal mishaps are nearly as common and I suggest you consult with your radiologist about that. The studies i have read indicate that a very, very small minority of men experience these symptoms post CK but I would double back and get your physician's advice. (BTW...these too seem to pass after some months)

I think your PSA is headed south quickly and guess that you will be less than 1 at your next test. My radiologist has told me that the faster the drop the better and you seem to be doing great. BTW...you refer to "what's left of my prostate." It's still there.

If you haven't looked at it before, you may want to check out the Cyberknife web site which is controlled by two are three leading CK radiologists at different institutions. Your questions about PSA drop and the pesky side effects you mentioned with incontinence are addressed there in great detail. The physicians will also quickly answer questions posed on line. If you haven't seen it before you can find it at www.cyberknife. com

Great to have another CK survivor in the forum. Pretty soon we may have enough for our own golf tournament.

Best,

K

JJPhare
Posts: 34
Joined: Apr 2011

Kongo, thanks for the well wishes and the support in the past. Always good to know that there is another Boilermaker in the group... there are no 'ex'-Boilermakers.
The supplements to which I referred are those for a "healthy prostate" that contain Dimm, Omega 3, Vitamin D etc. Saw palmetto is a controversial ingredient so I won't include that. I have heard conflicting theories from GP's, urologists etc as to whether these supplements ever work, let alone after CK.
It's obvious (to me) that my prostate has shrunk from the CK thus the "what's left" comment. Pre- CK, I had problems with urination... now, no problem which I attribute to the CK. The urologist would always 'congratulate' me on a healthy prostate referring to its size, not its condition or looks.

You have simplified a lot of the issues to which I had questions, so again I thank this forum and its members for the information available.

Swingshiftworker
Posts: 616
Joined: Mar 2010

I have taken fish oil (omega-3), aspirin and vitamin D supplements (for other reasons) both before and after treament, but I don't know if they had any effects on my prostate. I also took saw palmetto before treatment in hopes of reducing my urinary frequency but noticed no effect and stopped taking it.

The drug most commonly recommended to deal w/incontinence and frequency before or after treatment is Flowmax. I used it for awhile before treatment but stopped taking it because it dried up my ejaculate (a known side effect) and didn't like that but also didn't notice any change in frequency while taking it either.

Swingshiftworker
Posts: 616
Joined: Mar 2010

JJ:

My post-CK PSA levels are still elevated and range around 3 nine months following treatment. I posted a thread on my post-CK results and concerns about the measures of reoccurence previously. See: http://csn.cancer.org/node/226425. Read it for background on what I have to say here.

There's a study (referenced in the thread above) which concludes that a PSA level that's still above 1 two years after radiation treatment (not CK) is cause for reassessment to determine whether or not the treatment has failed, but you (and I) are no where near there yet.

Several members here who have received CK treatment have already reported PSA levels near or below 1 only 3-6 months following treatment. I am definitely behind the curve but your 3 month PSA score is still less than mine is after 9 months and your 6 month score is likely to be lower still.

So, just hang in there!

BTW, like you, I have no ED problems and an reduced amount of ejaculate. I never had any incontinence problems, just urgency/frequency issues which have pretty much resolved themselves. Still feel the need to go with some frequency but I can "hold it" for a long time when I need to. So, that's not really a problem for me anymore.

JJPhare
Posts: 34
Joined: Apr 2011

Swing-

I re-read your post and it helped to read it over again. I think we all have concern as to whether the PSA will go down to an "acceptable" level and only time can tell. I believe that the CK RO wants it to get down to .75.
I had wondered whether supplements would benefit the prostate even though it is considered undead.
I did away with the Flomax two weeks after CK as I do not think it really helped. My urgency was the same with or without.
One of my doctors is a prior NASA MD and now specializes in alternative treatment but he admits he is not a urologist. He is an advocate of supplements since there is still a prostate. He recommends those with Dimm, omega3 and Vitamin D. One of the CK RO's at another site does not think that saw palmetto has been shown to help either prior or post PCa. Because of those conflicting opinions, I believe it is best to watch the diet, saty away from dairy & red meat and most processed foods.
On the other hand, my traditional urologist from Kaiser is very discouraging. He was against CK due to lack of data but was an advocate of long term radiation. He thought that DaVinci might kill me since I would have to go off of coumadin. Like you, I am not in favor of surgery except in more serious cases but since the surgeon only had moderate experience, I didn't want him trying out his video game skills on me.
It is said that 80% of our worries never come to pass so we will just have to wait for the numbers to come down or address the issues if they don't. Kongo suggested that the CK patients might get together for golf. It is snowing today in the Colorado mountains plus the windmill always knocks my ball away so I will just watch.

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

JJ,

I take Omega 3 and baby aspirin. I am not much of a believer in saw palmetto and some recent tests actually showed the placebo was better, Go figure. I think we get all the vitamin D we need from about 15 minutes outside each day. I avoid all dairy and limit red meat to less than 15% of my total protein. Also try to eat organic and avoid processed foods but I travel two or three weeks a month so I am eating out a lot and finding the perfect diet is always a challenge. I don't know anything about Dimm at all. Never heard of it.

K

Swingshiftworker
Posts: 616
Joined: Mar 2010

I don't golf but I like watching and would be happy to join any of the CK gang for a get together.

As for Kaiser, my urologist didn't really express an opinion. He just said all we do at Kaiser is surgery (open & robotic) and brachytherapy. He gave me the internal referrals to talk to the Kaiser docs who did this work but I had to find out EVERYTHING else on my own. When I told him that I was leaving Kaiser to get CK done at UCSF, all he said was to keep him "informed" -- not even "good luck." He he didn't try to discourage me from seeking an alternative form of treatment, but he did try to help me w/my decision either. So, other than doing my biopsy and delivering the "bad" news to me, his advice was non-existent and essentially worthless to me.

As you say, we'll just have to wait to what happens. Hope to meet you and the others some time.

Good luck to all of us!

jackiegleasonscores's picture
jackiegleasonscores
Posts: 24
Joined: Nov 2011

What do you fellows think?

I'll play golf Kongo. Was planning to retire later in 2012, but Pc and privatization of my state govt. agency has me retired as of March 26. Truly enjoying this special time.

Wayne

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

I think golf is the way to go but never get enough time. I used to go to Pinecrest with a bunch of guys each year just before the Masters but after PCa I frankly couldn't keep up with the drinking and red meat! LOL

Enjoy your retirement. At 61 I plan on working for several more years but I am starting to think about it more and more.

Best,

K

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