Gmoose2 is a new member here

Hello gang, short-time lurker, first time poster...

I'm am a newly diagnosed member of this wonderful group. I am 53 and live in St. Louis, MO. 5'11 265, borderline diabetic, history of blood clots so take thinners, retired educator since 1998 (yes at age 37). Single, no kids, terrific family and friends. I never had much concern about prostate cancer. Colon cancer was the killer in my family HX. I had a regular colonoscopy in January that showed no cancer, but I did not bounce back the way I should from that procedure. After a couple of weeks, primary care asst diagnosed as UTI, but I insisted on a PSA and it was 85. Antibiotics didn't fix that and had to wait another couple of weeks to get the biopsy. PSA then was 121. By that point I had 3 episodes of gross hematuria and quite a lot of pain in my left side ending in a trip to the ER. Finally got the biopsy and they only could do 4 cores because of the continuing side pains, 100 percent on one side, 80 to 100 on the other. Gleason 8.

So I have had my first Eligard shot about a month ago and still working on controlling the spine pain. Rib pain is gone, but the spine is still an issue that put me in the ER again and actually admitted for a couple of days two weeks ago. I think we have our arms around that.

My oncology treatment is under Dr. Roth at the Siteman Cancer Center. He has gotten me into a TAK-700 vs. Casodex (me) trial that has been going on for quite a while. Lots of good monitoring and testing this way, it seems.

Right now, I am just trying to cope with the onset of the side effects, controlling pain, and waiting for the HT to continue working. A PSA for the trial showed 74, testosterone down to 37. My other big issue is that I am retaining too much urine and finally had to have a cath and leg bag put in for the weekend. I guess it comes out Tuesday and my urologist wants me to get a TURP done versus self-cathing. TURP sounds like a nice long-term solution, but is it truly needed if the prostate should shrink with the HT in a short time frame anyway? So plenty to research this weekend on this site.

Thanks in advance to all you guys.

Hey Gmoose. Your numbers sound a lot like mine. You'll find guys here with lots of knowledge who will be more than happy to share their experiences, advice, etc. while it's true the therapy may shrink your prostate, it may not open your uretha sufficiently for you to fully empty your bladder but it's best to pose this question to your treating Doctor. Best wishes to you in this new journey.

Post Edited (Almost a 10) : 5/17/2015 8:29:31 AM (GMT-6)

Had all my work done at Siteman! Your in the best place... Good Luck.

halbert said...
gmoose, welcome. My opinion is that you're at a great place with great care. I went for surgery, and had it at BJC with Dr. Figenshau in February. I'm doing great with minimal issues at 3 months. Hang in there.

I agree with your opinion about Siteman so far. I am actually using the SoCo facility as it is so close to my home.

My current urologist is outside of that group and I am thinking about switching docs to get them all under the same umbrella. My current urologist recommended me to the oncologist I independently was going to ask him to refer me to, Dr. Roth. My urologist actually was a student of his years ago and glowingly pointed me to him and has gone out of his way to communicate with him on my behalf. Still I wonder if I won't be better off longer term with a more formal relationship between the onco and urologist. Hard to think about basically firing a guy who is doing a lot well, but may not be the very best I can do. Tradeoffs are hard to evaluate for me new to this realm.

Goose, welcome to HW. Lots of really smart guys that know so much about PCa. Sounds like you have a good team to work with you.

I am also an educator, retired once and going to try retiring again in 6 weeks.

Cajun Jeff

Greetings form someone who grew up in St. Louis. Now retired and living in west central FL, middle of nowhere.

welcome Gmoose, sorry you have to be here.

Your diagnosis is very similar to my husband Paul's a year ago at age 47. Urinary stream issues led to uro visit, led to PSA of 85, and then got worse so he had to self cath and continued to deteriorate rapidly to where he had to cath all the time before biopsy led to diagnosis, as his PSA climbed to 115... All cores nearly 1005 involved with 3+4 and 5% gleason 5's in all samples.

A Cystoscopy was done before the biopsy where no issues were found- no hesitation or stricture at prostate or anywhere and bladder was described as "perfect" after a lot of poking and prodding- not any bulge from prostate anywhere. This led the urologist to tell Paul he was almost certain that he had prostate cancer and its escaped the capsule through the nerves and affecting bladder nerves and possibly into the spine. Paul still says there is no hesitation to self cath or issues inserting which would imply prostate as a cause. MD has it in his chart as a neurogenic bladder which translates to the nerves don't work.

No urodynamics (test of nerves and muscles of urination) have been done to show this as true but we are going to ask if this would be appropriate soon as he wants to solve that issue if possible.

I was born with a neurogenic bladder and well versed on this as a result of suffering through the affects and issues it causes since birth. Not fun.

He had a round of chemo and complications and surgeries that nearly killed him and had a long healing process still affecting him that I won't bore you with the details at this moment. It's irrelevant here.

Anyhow, months later we get a random email from his urologist about him having a TURP to alleviate his inability to urinate. Surprised us since this was never thought to be a cause and never ever discussed other than to say it wouldn't help him. We ignored that email.

Long story short- If I were your family member, I would highly encourage you to ask for both a cystoscopy and urodynamics to investigate this before even considering a TURP since it can do more damage than good in some cases.

Also be sure to ask for enough catheters if you do need them and get good instruction from nurses while in hospital if you can so you have time to practice if needed- Paul's first urologist only wanted to approve for 12 a year- one for every month to be continually reused despite already having UTIs...We have 100% DME coverage (Urinary catheters are considered DME and so is the lube) so cost wasn't an issue on this for us. Paul has no issues with self cathing now but can barely force out a few drops on his own.

I wish you the best and hope you begin to feel better soon.

Hello Gmoose,

I also had PSA over 100 at diagnosis, with prostate cancer already spread to both of my lungs when diagnosed. My urologist started me on Lupron shots right away and my urologist also prescribed FLOMAX to get the urine stream flowing better. I was on the FLOMAX pills for only a month or two. Within a month or two, the prostate tumor began to shrink and the urine stream improved greatly, which is still the case two years later. I have been on the hormone shots continuously since diagnosis.

Since you have metastatic prostate cancer like I did, you might also qualify for chemotherapy treatments. I went through chemotherapy treatments last summer, six rounds of Taxotere infusions, given three weeks apart for a total of eighteen weeks for the full series of chemo treatments. The chemotherapy helped bring the PSA down even lower, while still receiving the Lupron hormone shots.

There was a recently completed study known as the CHAARTED study, which showed that chemotherapy given upon diagnosis for metastatic prostate cancer can result in survival benefits and help improve symptoms.

I have both an urologist and an oncologist working together on my particular case. I would recommend you have an oncologist on your medical team, no matter what, going forward. My urologist referred me on to an oncologist, at my request, so that it was all covered by my insurance. The oncologists are the ones who typically oversee chemotherapy treatments, when they are needed.

Stay in touch on this website --- you will find lots of support here among the members who contribute.

Some thoughts to share from my experiences,
Cyclone