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Low PSA, High Gleason, Surgery, Radiation, persistent pelvic pain

motor1
Posts: 9
Joined: Dec 2012

First post here - a brief recap of my case; was treated for prostatitus for almost a year after going in with minor urinary issues and pelvic pain. Prostate enlarged, but PSA was normal and never went up (so uro continually said "well you don't have cancer"). Eventually after nothing worked on enlarged prostate, biopsy was done-result 9/10 cores positive up to 90%, Gleason 4+3. Switched uro, got 2nd and 3rd opinion and found #1 surgeon in area. Age 49, high recommendation in all my research was to do surgery. MRI with rectal probe showed definite extension outside gland, so no robotic surgery, had to go open surgery. Very, very skilled surgeon with long history - 3hr surgery took 7hrs - cancer had spread up ureter to right kidney, had to reconstruct ureter, implant into bladder, insert stent. Removed lymph nodes. Pathology showed lymph nodes clear, but Gleason was 5+4=9. Very aggressive cancer cells. Due to age, Gleason of 9, spread outside gland, as soon as I recovered from the surgery (a few complications along the way), I went through radiation to the prostate bed (I had now assembled a team of the surgeon, radiation oncologist and medical oncologist). PSA pre-diagnosis was 1.8, post surgery and post radiation is 0.05 (ultra sensitive test). Yesterday I underwent minor surgery to have bladder neck dialated as I was having a very hard (and painful) time emptying bladder. So now I am back with my best friend the catheter, but hopefully when they pull it next week atleast I will be able to urinate with some level of effectiveness and without extreme pain! :-) Main concern right now is that my original pelvic pain is worse now than before diagnosis. I should note that after diagnosis while assessing treatment plans I did have a bone scan, which was clear. Pelvic pain originally was only when sitting on hard surface or on my motorcycle. Now pelvic pain is almost constant when sitting (even in recliner), and even present sometimes when laying down. Not a high scale pain, but definitely painful. My team of doctors don't seem to have a good answer. Oncologist says he had one other case in which cancer spread into the perineal (?) nerves and presented itself with pelvic bone pain that traveled down the legs (like mine). So I am awaiting another MRI of sorts that he hopes will help either diagnose that or eliminate it. I am fully willing to accept that the pelvic pain has nothing to do with the PCa, but my gut tells me otherwise. I have fought this thing head on, with a very positive attitude. But I am getting very frustrated and struggling. I mentioned my age - and unfortunately I have not been one that has been lucky restoring sexual function, very fortunate to get to the point of virtually no leakage, but I have not even come close to an erection (I know there is still time for that to recover, and we have been tackling bigger obstacles so far, but...). Sorry for the long rant - just hoping to find someone with a similar situation. At this point I truly don't care if it is a good future or bad, I just simply need to know what the future is! If you are still reading, thank you... take care and God bless.

hopeful and opt...
Posts: 1310
Joined: Apr 2009

Is is possible that the pelvic pain can be a generalized from another area?

I wonder how much of the pain is due from the friction of the catheter, and if any pain is due to an infection that can be treated. If infection, a urinalysis culture is required, to verify what antibiotic to use?

FYI...for what it's worth. "It is a known fact that in the lying position the bladder is more irritable (has to do with the way the bladder sits in the pelvis and the different parts that are pressed upon when lying down). "

motor1
Posts: 9
Joined: Dec 2012

the pelvic pain was and is present without the catheter. but yes there is certainly a chance it could be generalized from another area. I have a UA every time I go to the doctor appointments, and have been on antibiotics during each surgery/procedure - so infection isn't likely the cause.

Samsungtech1
Posts: 350
Joined: Jan 2011

Where did you get yourradiation, and how was it administered? I just found out that guys like me, who had radiation to bladder are subject to radiation oroctilitis, or proctitisis. Anyhow it says this does not present itself for around 3 years. Mine showed up at about 2 years. Now am getting my firstcolonostophy in life. Never been sick or went to Dr. Until PCa., and ischemic heart disease. 2010. Anyhow I would not rule out radiation. Have you researched this? Where did they radiate you, and how did they do it? On your back, on stomach? Do you know where they aimed at?

You might want to find out. No Dr. Will tell you because if a mistake was made they would be damaging anothers reputation. They forgot to mention this radiation by-product I now have and even my Onc will not agree. Thus colonospophy even though We know what it is, but have toplay it out, and then still no mention of what caused this, just treatment.

It is nice to know so you might be able to get a strategy to fight back. Research this.

Good luck,

Mike

VascodaGama's picture
VascodaGama
Posts: 1549
Joined: Nov 2010

Motor

Welcome to the board.
I am sorry for your advanced diagnosis. In this forum you can find past posts from guys with Gs 9 which stories might be of interest to you.

Regarding the pain, this symptom if related to PCa is usually a cause from bone metastases/neuropathy. Such could be your case and I would advise you of getting tested with higher methods such as the F-18 PET/CT or MRI scan. The traditional image studies done with scintigraphy bone scans are not so reliable to detect small lesions of cancer.

Here you got an article explaining about the limitation of the scans;
http://www.hindawi.com/journals/au/2012/893193/

Here is a link related to a study on the F-18 PET and C11 acetate;
http://www.ncbi.nlm.nih.gov/pubmed/21285676

The above may help you not just to find the pain problem but any metastases as well that may be treated with focal therapies.
You may discuss the matter with your team of doctors.

I hope that my insight is helpful to your case.

VGama

motor1
Posts: 9
Joined: Dec 2012

Update - I had another pelvic MRI last Thursday (had one during diagnosis as well), was called with the results this morning, being told no definitive evidence of cancer. One would think that I should be very happy to receive that report, which I am.  However it leaves me very frustrated as I still have no resolution on the pelvic pain.  I guess I will go back to my primary doctor and start exploring other potential resources.  They want to refer me to a pain clinic for help in managing the pain - I guess I am odd in that I want to find the source of the pain, not just cover it up with drugs.  

As I know we all know, each case of PCa is unique and mine definitely is as well with the lack of PSA rise, but high Gleason and agressive cancer.  As I start yet another round of research, I am interested in hearing from anyone that has any similar experience as I am having.  Up to this point, I have been (and still am inclined) to be very, very satisfied that I have an outstanding medical team on my case. So while I may end up seeking a second opinion on this pelvic pain, I am having a hard time thinking that my doctors are missing something (but yet very frustrated not knowing definitively that the pain is not related to my cancer!). The wierd thing is that if they would have called and said yes, it appears your cancer has spread and is causing the pain -at least I would know what is causing it and move on with another treatment plan to deal with it. Oh how our minds play tricks on us....

Nobody ever said it would be easy... 

Samsungtech1
Posts: 350
Joined: Jan 2011

Motor1

Unfortunately the HT treatment I am undergoing causes memory loss.  Works great for getting out of things.  Anyhow I had incredible pain in my left pelvic area my Onc said he thought it was a hernia.  Sent me to doc who said no.  Pain was really bad.  Anyhow I was re-reading your post and thought it might be similar.  What I have noticed is that since I went on HT the pain has not come back.  Not sure how bad yours is, but mine would ease with percocet, not sure if HT stopped it or if itmwent away, but every test came back negative.  So doc would not say what It was.  I am thinking that the HT stopped it.  Had the pain from 2011 thru 2012.   

Not sure if this helps, but thought I would throw it out there. One thing they did was press on left pelvic area and it was really bad when they pushed in on it.

Mike

motor1
Posts: 9
Joined: Dec 2012

Thanks for the reply Mike.  My pain definitely sounds different than yours.  My pain originally was only if I sat on a hard chair, or when riding my motorcycle. Pain starts at the bottom of the pelvic bone when there is pressure, and the longer I sit the worst it gets. Now the pain is there even sitting on nice padded chairs, even in my recliner. I haven't really felt this pain was horrible, probably a 6 on the famous 1-10 scale, but considering it is there everytime I sit, it is very bothersone.  I can take the edge of the pain off with drugs, but I have never been a fan of masking pain with drugs so I only do so when needed.

Thanks for your time.

 

Randy

 

Samsungtech1
Posts: 350
Joined: Jan 2011

By any chance do you have any tingling down legs?  Any pain in lower back?  Know it is out of left field, but you never know.  No need to reply.  Just putting it out there.

Mike

motor1
Posts: 9
Joined: Dec 2012

So as it goes, the road is long and never ending..

My pelvic bone and now hip pain continues to progress -ever so slowly, but nonetheless it is getting worse.  Since last post I have been to Neurology, Chiro and GP doc - nobody, and no test has been able to substantiate the source or cause of this pain.  

I have sought out a C11 Choline PET scan, which is only offered at Mayo Clinic in Rochester, MN (was expiremental but now is FDA approved) by a Dr. Eugene Kwon.  A very amazing scan with some pretty facisnating results.  Intrigued?  Google it and watch Dr Kwon's video and judge for yourself.  So I have pursued a referral from my doc to Mayo for this test, and he has agreed,  Right now I am jumping through the hoops to see if I can get my insurance to pay for it.  But even if they won't, I am likely going to get this scan done even if I have to pay out of pocket (which is going to be very tough!).

Next PSA test is two weeks away - but with my history, I am not putting a lot of faith in the PSA test....  I am pretty excited though about the history of this new C11 Choline PET scan...

P.S. Hard to explain to others not in the fight (including my wife) how this becomes an almost fulltime job (would say hobby - but as long as I feel like I am winning the fight, the "payoff" is beyond priceless!)

 

Samsungtech1
Posts: 350
Joined: Jan 2011

Motor1,

Please let us know how this turns out.  I really hope they find the cause of your pain. Not sure how many suffer from these pains, but if this works andyou find out whatit is then maybe it will help many more of us. Goodluck.

 

Mike

ralph.townsend1's picture
ralph.townsend1
Posts: 352
Joined: Feb 2012

Motor1,

Your conditions are the same path that I took starting in 2008.

With in 2 years the pain should back off.

The type of surgery, removal of lymph node, nerve removal takes along time to heal and maybe longer, but time heals, I'm living proof.

Still fighting the cancer. Never give up!

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