Newly Diagnosed with Gleason Scores of 9 and 10

Gleason Score 9 and 10 said:

Encouraging News Today

My husband and I submitted a number of questions to his doctor via email last night and got back some encouraging news today! The best news was our questioning the "Signet Ring Appearance". The doc followed up with the pathologist about this and she had actually stained the samples and found they are "normal" prostate cancer cells, not signet ring! It has been the "appearance" of the rings, but not actual rings! (Why in the world that was on the path report, I am not sure!)

In addition, given the type of cells, his PSA, high gleason scores, and looking at a CT that was done just a few months ago, he feels it is no more than a 5% chance that the cancer has metatasized at this point. This is also a result of them  knowing that on the right lobe, due to the number of cores studied, they feel the cancer is only in about 8% of that lobe. Further, since we had a CT done just a few months ago, they are not going to repeat now....just the bone scan and then we will go from there. If that comes back clean, I am still going to ask for a PET/CT or MRI to be sure we aren't missing seeing anything. I think my husband will be supportive of this as well. 

Hanging onto this good news while waiting for more testing. I know from other experiences this journey is a roller coaster and it has been so far, but I will take the hills as they come!

you might tryMD Anderson in Texas

you should be clear about the problem and how serious it is.  then proceed to kill the cancer.  And my advice is to take to most aggressive action. 

Gleason Score 9 and 10 said:

Agree...not preaching at all...appreciate the advice

Hopeful,

Thank you for your words of caution. With the Barnes doc, we will be asking for the more advanced scans (both PET and MRI). I also appreicated the reminder about the medical oncologist. From what I have understood about Wash U./Barnes they approach each case with a urologist, medical oncologist, radiation specialist, and other clinicians as needed to treat each case individually. We will be asking a lot of questions for sure, with the PET and MRI at the top of the list.

Thanks again for your advice...always welcome.

Gleason,

If Barnes always uses a team approach, including a medical oncologist and radiation oncologist, why are you having to arrange insurace for a second opinion ?

Hopeful & Optimistic's observation is key:  Although some urologists administer HT, they almost never have Board Certification as medical oncologists (they legitimately write HT perscriptions with their licenses as urologists).  And they do not have the particular insights of a Radiation Oncologist.  On the surface, it would seem that seeing another urologist is going to be "more of the same," rather than a fresh perspective.

But of course it is impossible for us to know everything that his Team is sharing with you. I would ask specifically for a Radation Oncologist.

max

Gleason Score 9 and 10 said:

Update & Catheter Removal Question

Hello All...

My husband had DaVinci last Friday. We are home, and he is doing his best to adjust to the catheter that is certainly much more uncomfortable than he was expecting. Today, day four post-surgery, he is doing much better and adjusting. On Friday, we head back to have the catheter removed and to hear about the pathology reports.

We did have Wash U/Barnes pathologists read the biospy slides and our Gleasons went from two 9's and two 10's to four 9's...not much change, but we will take the best we can get.

I really appreciate all the advice and support we have been given. We elected to do this sugery as it offered the best hope for a curative process given all the test results we have had. The information we received from The Siteman Center at Wash U in St. Louis helped to confidently solidify this process. We still have a long way to go...pathology reports, then our first PSA. I recently read a new study by researchers at Brigham and Women's Hospital and Harvard Medical School regarding a new outlook on how to treat prostatectomy patients who have minute, yet growing PSA scores. According to the study, "The important number to know: PSA should fall to 0.5 nanograms (ng per ml) or lower." If the score rises above, after a prostatectomy, radiation is being recommeded rather than a "wait and watch" approach. The full article is here http://www.nbcnews.com/health/health-news/study-finds-new-way-pinpoint-dangerous-prostate-cancer-n70615.

A question for those of you that have had a Foley catheter....how painful was it when it was removed, in particular for those of you who had regular discomfort while it was in place? That is the first hump for Friday...then the path results.

Thanks again for the support!

After open prostatectomy, my catheter was scheduled for removal at the end of week three.  Bladder spasms during the three weeks caused most of the discomfort.  But, the nurse had the catheter removed in a matter of seconds and totally without pain.  tpelle

My experience was equally with no trouble. I had it for 14 days till the "V-shaped" was formed at the sphincter (X-ray image done two times). Some discomfort but no pain and no incontinence since the moment they took it out. I used sort of cream or baby oil at the tip of penis to avoid dryness.

Best,

VG  

Hi,

Nothing to sweat, it will be the best day of his whole surgical experience.  I had mine in for about 10 days with no problem or pain on removal. He will be very glad to get that thing out of him!

Dave 3+4

My catheter was in for 3+ weeks total.  At the end of 2 weeks, there was still a fair amount of blood in my urine, and testing showed that the urethra repair had not yet fully healed.  I went another week with the catheter, and the blood in my urine subsided.  They pressure tested my urethra, found no leakage, and removed the catheter.  The removal was completely painless, but be prepared for a fountain of urine to gush out, immediately upon removal.  Nothing bad, but even being told ahead of time that it would happen, the quickness and the velocity of the urine flow was startling.

I had periodic discomfort with the catheter, particularly when sitting down.  For me, pushing the catherer into the penis a bit (fraction of an inch) eliminated the discomfort.  I'm not a physician, so I cannot recommend that your husband perform this technique, but I can tell you that it worked for me.

Last, about 1 week into the catheter, I experienced strong pressure in my bladder, and no urine flow into the bag.  I went to the local hospital emergency room, and they performed a routine catheter flush (just connected my catheter to a hose).  I was told that a fairly large blood clot had obstructed the head of the catheter, and the flush immediately removed the pressure and the clot.