First off want to say thanks for all the replies to my original post, all
were very helpful!
Second thing is I hope someone can add me to the "G9 Club
" - unfortunately the post surgery pathology upgraded me to G9 and T3b.
Since that original post I was super busy getting ready for my da Vinci RP and trying to get work setup to live without me for awhile, then had my da Vinci RP surgery done as well (in November). Wanted to wait until I finally had my follow up with the surgeon before making my follow up post, and I've updated my sig with what the Doc told me.
In my particular case with extreme bladder retention went with the RP surgery which did resolve that. I'm with Kaiser and my Urologist had been doing nothing but RP surgeries since '03, so luckily he's had a lot of experience. Towards the end I was on the max dose of Flomax which even at the max dose barely helped anymore and due the bladder retention I ended up with infections: super painful epididymitis and orchitis. Happened during the 2 week pre-surgey "no pain meds allowed" period (it figures
) and pain was so bad hardly slept for a week (took CIPRO twice/day to resolve).
The pain from the surgery wasn't bad at all and I never even bothered to take any of the pain meds they gave me. The surgeon did cut wide and I lost the nerves, Lymph nodes/sm. Over a month after surgery the Docs are still real concerned about
the "surgical connections" to my bladder such that I am still not allowed to start Kegals for another month. My da Vinci surgery was almost 5 hours long - maybe complications due to my bladder having enlarged to twice normal size due the extreme blockage by the enlarged prostate. Had to wait 2 weeks to get the Foley Catheter removed - and they thought about
keeping it in for a full month :-(
Luckily incontinence not too bad, primarily stress incontinence, full on ED though - thanks much to oldbeek and others showing what options there are later. Doc also gave me some sindenafil and ordered one of those vacuum devices to try and start "rehab" (even with no nerves).
As a new G9 will post updates as they add treatments and their results. Due to my 30 day post RP PSA test being still high (4.96) they want me to get another PSA test in 2 weeks. Once my surgery heals more (in 2-3 months) they plan to start Adjuvant Radiation and HT (Doc mentioned a possible clinical trial too).
Almost a 10 said...
With the exception of your PSA, you seem to mirror me almost exactly. I began suffering from noticeable urinary retention in August 2013. Probably started earlier but it would get better. It wasn't until I landed in ER with full urinary retention that I went and saw a urologist. I was immediately diagnosed with Prostate Cancer and a blood test was performed. My PSA was 187.5. Biopsy came back with 11/12 cores with up most at 90% involvement. Bone scan revealed 2 hot spots in my spine but cancer was never confirmed. I had surgery on February 14, 2014 combined with ADT. My Doc cautioned me that my cancer was likely already micro metastatic and subsequent PSA tests confirmed that. After more ADT, Chemo and now Zytiga. I am currently undetectable and just celebrated my 4 year anniversary since diagnosis. There are no guarantees that it has not spread but there is light at the end of the tunnel. So keep the faith and find the best treatment that fits with your overall quality of life expectations.
Thanks much for your post Ten! Our situations do seem quite the same and your results provide proof there is hope for sure.
Tall Allen said...
I agree that your urinary problems may preclude brachy boost or even IMRT radiation. Your bladder has enlarged due to severe urinary retention. The only way to relieve the problem is by removing the prostate. Your doctor is right that the cancer has probably spread locally and into nearby lymph nodes. He can cut wide and remove as many as he can find, but you may need adjuvant radiation plus systemic therapy anyway.
Your relatively low PSA coupled with Gleason 10 hints at a very virulent type of prostate cancer. For that reason, you are very fortunate that there are no signs of distant metastases.
TA you were quite right about
my PC being of the very virulent type, sure enough post RP pathology upgraded me to G9, T3b and now 30 days post RP still have high PSA. Doc's already plan to start adjuvant radiation along with HT, and they even mentioned adding a new (came out in last 2 years) pill based HT in addition to the shots - have follow up with an Oncologist soon where I guess I'll learn those details.
Age at Dx. 63
9/17: Biopsy: All cores 90% pos, G8/Grade 4,cT2c
9/17: Bone/CT scan negative
11/17: da Vinci RP
Post RP path: upgraded to G9, pT3b, pos margins, LN/SV pos
PSA Values: 3/2005: 0.62