NOTICE: As of June 15, this community will have a new web address: compass.cancerfighter.com. You will no longer be able to access the site at CancerCompass.com For more information, please read the full blog post.

 

Post HIFU PSA Spike

25 Posts | Page(s): 1 2 3  Next 

Post HIFU PSA Spike

by Iamdoingood on Fri Dec 11, 2009 06:16 AM

Quote | Reply

My HIFU was Feb 2009. Before HIFU, PSA was 3.7. May 2009, PSA .8; Aug 2009 PSA .4. But Dec 09, it is 4.4. My urologist says this makes no sense. I've had increasing urinary problems for the past 6 months: weak stream, slow to start, some stinging, frequent urination, etc., which he thinks is making the PSA act up (like prostititis would do). He thinks I either have some sludge or scarring blocking urethra. I'm getting a cystoscopy next week (roto-rooter) with possible TURP, and I think he'll remove some matter or scrape some scar tissue blocking urethra to get flow moving. Anybody had anything like this (either HIFU, radical, or radiation)? Thanks.

RE: Post HIFU PSA Spike

by alady on Sun Dec 13, 2009 04:07 PM

Quote | Reply

I've found someone else who has this same problem after HIFU.  He had the Foley catheter, it almost always causes this trouble, that's why Dr. Scionti refuses to use the Foley.

I remember that you posted that you clamped off and peed on the second day, thereby causing sludge to go into the urethra, it hasn't left, after your doctors appointment this week I hope that you post again and that you are fine.

And please, anyone else.....don't try to pee until day 5....after most of the ash leaves.

RE: Post HIFU PSA Spike

by Badmamazoo on Mon Dec 14, 2009 05:30 PM

Quote | Reply

I amdoinggood,

The 0.4 nadir is usually indicative that the HIFU did not kill the entire prostate, which is nothing to be alarmed about, at least not now*. With that, prostatitis can cause the psa of the remaining cells that are alive to secrete more psa than normal. I would concentrate on your more immediate issues and at least, temporarily, put the psa on the back burner.

If after you are treated for the burning and the scarring, the psa returns to nadir and a follow-up biopsy shows no malignant cells, you should be fine.

* Other than surgery, radiation, cryosurgery and HIFU are defined as prostate cancer treatments. Many men come back from those treatments with low psa scores because the prostate gland has not been removed and some benign and/or malignant cells remain and have the ability to grow. The post-treatment biopsy can, to some degree, confirm this. Some men go on to have low psa values for many many years, which indicates that the cancer is cure. On the other hand, some men's psa rise at various rates. It is for this reason that usually all folks treated spend the rest of their lives doing another form of "watchful waiting." BTW: the lower the nadir, the better the chances that all of the cancer was killed. I don't know what the magic nadir number is for HIFU; for cryo a nadir of 0.2 or less is considered wonderful. 

 

 

RE: Post HIFU PSA Spike

by alady on Mon Dec 14, 2009 05:44 PM

Quote | Reply

o.4 is excellent results after HIFU as you still have the gland sack.  You will always have a reading....just staying low is what is referred to as cured.  I know a guy who is 0.9, has been for 3 years, he is "cured". 

RE: Post HIFU PSA Spike

by Skittlebug on Tue Dec 15, 2009 05:14 PM

Quote | Reply

I am targeting you because you seem to know alot about prostrate cancer. I have a friend who has been diagnosed with prostrate cancer that has already spread to the bones. I have been reading about the PSA count. His is 5000. Have you ever heard of this outrageous number ?? anyone have any insight on this, Id appreciate it!!

RE: Post HIFU PSA Spike

by Badmamazoo on Wed Dec 16, 2009 02:28 PM

Quote | Reply

Skittlebug,

I have heard of men with psa scores that high; some have been kept alive to talk about it, others have not done so well.

Your friend should skip the uro and go DIRECTLY to a prostate cancer oncologist for treatment which will include hormone ablation medication and possibly chemo to get the psa down. If the cancer sights are well established, radiation to kill the cancer at those sights may also be performed as well (which will ease some of the pain).

You should vist the PCa forum at healingwell.com as there are many men with advanced cancer who can provide more info.

Lastly, your friend should be urged to change his diet. My buddies Ray and Dan have not been on this forum for awhile (and I am praying for them) but they have posted a lot of very informative data on diet. With that I suggest you find as many posts on this forum by jcr65566 and skidan

RE: Post HIFU PSA Spike

by alady on Wed Dec 16, 2009 09:54 PM

Quote | Reply

I do know someone who had a PSA of over 3,500, I don't know how he is today.

healingwell is not an honest forum, they delete and edit many many posts, they ban you if they don't agree with you and they do not allow positive HIFU experiences (they banned me twice for just writing our story ~ and yes, I followed the rules).  You are better off with a honest forum like CancerForums.net

RE: Post HIFU PSA Spike

by Badmamazoo on Tue Dec 22, 2009 12:23 PM

Quote | Reply

Alady,

In my opinion healingwell is a very honest forum and one of the best on the net. They do however dislike posts that appear to be "selling" a treatment. I truly believe you may have been misunderstood as your enthusiasm may have appeared to be more than that. in that regard, I believe you should send a message to the moderator as your input is very valuable and desired.

RE: Post HIFU PSA Spike

by alady on Wed Dec 23, 2009 03:29 PM

Quote | Reply

Badman..... I wrote the moderator at healingwell, we emailed back and forth several times, I begged him, I explained everything about myself, he was not interested in my  experience with HIFU, and he wanted no mention of HIFU at his forum, he didn't think I was a saleman. 

 I had a friend who also had HIFU start up a identity and try to tell his story, he was also erased and banned from posting again. 

When I was erased and banned I almost threw up I was so blown away, I thought forums were honest places....Purgatory was the worst, he called me names... It really hurt, all I wanted to do was to help others.   My horrible experience there has lead me to be more determined to inform others that HIFU is a real choice.

There was a thread called "My HIFU Trip", about a guy who went to Germany and had troubles with his HIFU experience.  As soon as someone said something positive about HIFU they erased the entire thread.....it isn't a honest forum.....but if they've changed their ways, I'd be pleased to go back, however, my computer is banned.

RE: Post HIFU PSA Spike

by alady on Wed Dec 23, 2009 03:47 PM

Quote | Reply

Badmanazoo... I was also banned from the ladies cancer forum, she actually told me she wasn't interested in letting me post my story, as "others might not be able to afford this and so they would feel bad".  And so ~ no one gets to know?  I haven't always been able to afford everything in life, but I certainly cannot imagine keeping any good information secret...for any reason.

It's a corrupt world, very heartbreaking.

25 Posts | Page(s): 1 2 3  Next 
Subscribe to this message board discussion

Latest Messages

View More

We care about your feedback. Let us know how we can improve your CancerCompass experience.