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Posted 9/9/2016 10:08 PM (GMT 0)
I saw the doctor today and got results from my bone scan. The spot on my pelvis didn't show up, but a spot on my skull did. Doc told me that it may or may not be cancer.

When I told him that I've been on ciprofloxacin for the past 5 weeks he got mad and told me to stop taking it Immediately. I then told him that I wasn't going to stop until I ran out, and went on to say that I'd get another course if the prostatitis symptoms came back.

In short it was a very heated exchange with him explaining that I piss ciprofloxacin into the sewer and that's how bacteria become resistant. He also told me that since my psa continues to rise even while taking ciprofloxacin that I should start adt. Again I disagree with him and told him I refuse hormone shots until I'm sure my cancer has spread.

So he scheduled a Pet scan next week.

Super stressed out day today...
Posted 9/9/2016 11:49 PM (GMT 0)
I'm hanging around here posting with my phone. I just can't seem to get prostate cancer off my mind.

None of these tests have been telling me anything for sure. Just adding more stressful "possibilities".

Ah well, time to get ready to go to work.
Posted 9/10/2016 4:52 AM (GMT 0)
What's your current PSA?
Posted 9/10/2016 1:28 PM (GMT 0)
9.9
Posted 9/10/2016 1:51 PM (GMT 0)
Hey Vaportrail

I can't really offer any advice that's worth anything. It's obvious you have been on a rough ride so I hope you can get some good advice from some Drs that you are comfortable with and maybe things can settle down a bit. What you are going through is probably what most of us fear, facing the possibility of more treatment after the initial battle. To me the initial battle was exhausting in itself so I don't even like to think about facing more.I think it would bring me to a cracking point mentally but I do know that most of us find the strength through the darkest and toughest of times so continue to hang tough and vent & fight & ***** as much as you need to get through this and get to the bottom of it.

I wish you the best...Jim
Posted 9/10/2016 2:20 PM (GMT 0)
Vapor trail
I'm not aware of anyone getting prostatitis after imrt/ brachytherapy , but I suppose it's possible. I didn't have that treatment because I had BPH for years and resultant urinary tract problems which I was told would be exacerbated by brachytherapy.
Rather than stressing out, you need to see a Uro you believe in and talk to your RO . Who advised the Cipro? With a psa of 9.9, I wouldn't waste a lot of time finding out if it's prostatitis or recurrent PCa, however.
Good luck bro!
Posted 9/10/2016 2:22 PM (GMT 0)
Hi James,

Thanks for the reply. It's been a real learning experience for me. I some how thought with all the modern testing we have these days, things would be more black and white. But at this point it's still a game of possibilities, percentages, and decisions to be made by me, with the doctor telling me the "safest" choice... Problem is, I'm still not done gambling.
Posted 9/10/2016 2:28 PM (GMT 0)
I saved a ciprofloxacin refill for nearly a year, in case of emergency. Now that emergency is here and my current uro won't rx any, so decided to go ahead and take the course. It helps me immensely. My balls start aching as each ciprofloxacin dose starts to wear off.
Posted 9/11/2016 6:48 AM (GMT 0)
If you had EBRT plus brachytherapy the prostate cells should be destroyed and no prostatitis will result in a PSA of 9.9. You will have to check for metastases with a Cholin or PSMA PET/CT. You can have these radiated or do an ADT.

If your balls are aching this is no prostatitis but possibly Orchitis. This can also be treated with ciprofloxacin and this may be the reason why that helps you.

George
Posted 9/11/2016 12:51 PM (GMT 0)
...also, a course of antibiotics that goes on too long will kill off all of the beneficial bacteria in your intestinal tract. Usually you then get an intestinal clostridium difficile infestation as they are resistant to most antibiotics. They cause Irritable Bowel Syndrome (IBS), an exquisite combination of severe cramping constipation alternating with diarrhea. Been there, done that.

Me, I would deal with the cancer before it dealt with me. Just my opinion though.
Posted 9/11/2016 2:55 PM (GMT 0)
Thanks for the post George.

I call it achy balls, but it's actually the cord or tube that leads to the testicles that started bothering me. I have been researching about it, and learned that it's called epididymitis. If you google it, you'll learn that it may indeed be caused by prostatitis, among other things.

And to address a prostatitis attack after radiation therapy for prostate cancer, please check out this link.

cancer.com/radiation/side-effects/radiation-side-effects.html

I'm finally starting to get the hang of smartphone typing ☺️

I will have a pet-ct scan Thursday since my urologist also doubts that prostatitis could be making my psa keep going up so much.

I guess I may be in denial that I'm in the midst of treatment failure. But since the increasing pain in my hip was diagnosed last week as a torn labrum, and my bone scan didn't show any obvious metastasis, I'm high on relief, and plan on riding it out.
Posted 9/11/2016 3:34 PM (GMT 0)
Trailguy,

I already suffer from serious digestive issues that cause all the symptoms you described. I had abdominal pain start towards the end of my external beam treatments, that morphed into major pain, cramping, and pseudo obstruction. I had mri of my small bowel and a scope ran down my throat. They found some lesions in the top of my small intestines, but my GI doctor doesn't think they are what's causing my problems. Other doctors I've seen tell me it's from my radiation treatments and will never get better. My GI Dr at the VA says it's food poisoning that will get better some day, which sounds better to me, so why argue? I'm able to control symptoms with diet. I eat a VERY limited diet, mainly almond milk protein shakes, white rice, tuna, extra moldy blue cheese and potatoes (no skin) beer, espresso and kombucha. I've been this way for several months and don't mind it anymore.

Also have the alternating diarrhea and constipation, especially if I try to eat anything that I didn't list.

As far as dealing with the cancer, is 9.9 really that high?

I'm still very ignorant about metastatic prostate cancer. I'm trying to learn all I CAN, but one thing I know for certain... I decided a long time ago, that I want to preserve my sexual function for as long as possible.

This may sound stupid to many posters on here, but for me, that's my number one goal at this point in my life.

Again, thank you for all the replies. And if anyone has hesitated from posting in any of my threads from fear of offending me, please post away. I'm a veteran and I also survived millwright apprenticeship, back before "on the job safety' was much of a consideration. In other words, it would be very hard to offend me, I've got some pretty thick skin.

Post Edited (vaportrail) : 9/11/2016 9:37:11 AM (GMT-6)

Posted 9/11/2016 3:55 PM (GMT 0)
Post treatment, 9.9 should be ringing alarm bells as any consistently rising PSA.

Do let us know what the scan shows.

Andrew
Posted 9/11/2016 5:16 PM (GMT 0)
As Andrew said, 9.9 post treatment is very high. Even if the scan does not find any cancer it is very likely that there is some. It just was not detected. If they find your cancer it can be radiated. But radiation should be done with adjuvant ADT. So you cannot avoid ADT in any case.

You could try the ADT with Casodex only. This can preserve your sexual function. However, it is not as potent as the usual LHRH agonists.

Here is a study on Casodex/Bicalutamide:

Iversen - Antiandrogen monotherapy: indications and results.

George

Post Edited (George_) : 9/11/2016 2:30:43 PM (GMT-6)

Posted 9/11/2016 9:04 PM (GMT 0)
You actually have only one question to ask at this time. "Hey Doc, my PSA is 9.9, what are we going to do now"?
Posted 9/12/2016 12:19 AM (GMT 0)
Maybe give full attention to getting an excellent prostate cancer team you can work with. While it's great to be well informed, to monitor numbers and your treatment, none of us here have the training prostate cancer MDs have. In your shoes I'd want both an RO and an MO I trusted.

From what you report, the future may be better with some secondary therapy.

Best to you -

Wilderness
Posted 9/21/2016 5:10 AM (GMT 0)
To anyone who might be interested, my pet-ct was clean.

The prior ct that showed the torn labrum, cyst and calcification/tendonitis (which turned out to be the pain I was so worried was my cancer spreading) also had a finding on my pelvis. The pet-ct report called it a chondroid lesion with calcifications, but said it didn't look malignant. They said the spot on my skull was nothing to worry about, called it siniusitis inflamation.

Big sigh of relief, and so glad I didn't agree to the testosterone blocker shots...

I'm really not too concerned about my high psa at this point, since I believe it's prostatitis causing it, even though my urologist is in denial...
Posted 10/22/2016 12:12 AM (GMT 0)
Woo-Hoooooo


I just got my latest PSA result, and it went down from 9.9 in August to 7.9 currently.



I know that's still way too high, but ready to celebrate anyway :-)
Posted 10/22/2016 12:54 AM (GMT 0)
RIGHT ON Vaportrail !!!! very cool !!!! ~D
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