Can I join the club? crap :(

New to this, forums, cancer and freaking incontinence at work!

My question though is how many of you had a 2.0 PSA before Biopsy gave you the good news? Why did you get checked?

For me 7 months of peeing every hour day and night with enough pain to make me shake and bring tears to my eyes. This sent me through multiple let's try this stuff to my urologist saying before doing a TURP lets check one more thing, biopsy. In reality this amazing woman's gut instinct saved my life. Then a few days later the grim news I knew was coming.

I chose Davinci because I wanted that sucker out so I could urinate asap. I chose Dr. Porter because my urologist ( Dr. Emily Bradley) said so! and actually he is the best in Seattle. And she is rated the #3 Urologist in Seattle. Somehow I got lucky with both Dr's.

Mentally I am great,
I have gotten tattoos for the first time, 4 so far, must be rebellion to all my old rules lol and I am planning #5.


Thankful to have found all of you!

Teton;
Welcome to the group. Sorry to find out you may have Ductal cancer. Not to many here with that, and I was hoping it would stay that way. You may want to send your pathology samples out for a second read to see if they can determine if it is or is not Ductal. Tall Allen is correct, about 20% of cases of Ductal cancer does not raise your PSA. As a result PSA is not a reliable way to track it. In my case, I will be getting regular bone and CT scans. Here are three of articles that may be of note:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4779765/
http://www.ncbi.nlm.nih.gov/pubmed/20004936
https://diagnosticpathology.biomedcentral.com/articles/10.1186/s13000-016-0478-2

Once again, welcome and sorry that you are here.

Tekton,

I have added you to the roster for the Gleason 9 club. You are now an official member and can factor that into your plans for that 5th tattoo.

I feel for you with the incontinence. I've been there. There is a rule of thumb for recovering continence after prostatectomy that is all about the number three: Only one guy in three will still leak in three months and there is only a one in three chance that he will still leak at a year. That means that only one man in nine will need to talk to his surgeon about fixing the problem.

You can improve your chances a bit by doing your Kegel exercises. Also, if you don't see progress in a month or so you might consider some sort of biofeedback/physical therapy. The way that works is a technician/coach will put sticky electrodes (like an EKG) on your lower belly and your plumber's-crack area and a computer will monitor your muscle contractions as you do a set of Kegels. You go in a couple of times a week for a month to six weeks and studies have shown that it does help. The first couple of sessions are the most valuable since the machine can tell if you are exercising the right muscles -- a Mr Universe-class anal sphincter muscle won't help at all.

You've got a couple of negative factors to overcome with your incontinence. As the Tall one menioned, your doctor probably cut a bit wide to get as much of the cancer as possible. Also, men with large prostates recover continence more slowly -- they still generally do recover but it takes them longer. And it also sounds like you may be looking at radiation to try to clean up anything that the surgery might have missed. Radiation also interferes with the recovery of continence.

Most guys do recover continence so you will need to work on those Kegels and try to be patient. And, for the guys who don't ever get dry there is surgery. I have a small rubber squeeze bulb in my scrotum, tucked behind my right testicle that I squeeze when I want to pee. Thinking about surgery for your incontinence is probably borrowing trouble for you at this point. Most guys get dry. I didn't but you probably will. But even if you don't there are things you can do.

Welcome to the forum, and welcome to the Gleason 9 crew.

Keep on keeping on

As another G9er, welcome to the club. I'm sure your experiences will be helpful to others here and hopefully you'll pick up a few things from our community.

Tekton, welcome to the group. Sorry you have to be here. Heck,sorry we all have to be here but here we are.
I'm a G9'er just Dx June 3 2016. Tennis23 and I both started at about the same time. I first went to Virginia Mason to see about the robotic surgery. Found out there that I wasn't a very good candidate for that procedure. In fact Tennis and I initially had the same Dr at VM until he tracked down Dr. Porter.

Anyways to your point about "low" PSA. Mine was 3.5 up from 2.65 the year before. Was told by my Dr. that I was within normal range. But I was having difficulty peeing. My primary Dr did a DRE. Said maybe he felt something but I was in normal range. Refered me to Uro that could see me in a month. I'm from southeastern Washington,small town. So I get to the Uro and he says " well you are within normal range but I guess I can give you a DRE and see if I feel anything. Well,I got the same response "I think I might feel something I'm going to give you a urine test and that will tell me a lot" Also ordered another PSA but this time with a fPSA% test. Ordered a CT. I waited a few days and then my test results showed up on My Chart. PSA 3.42 fPSA% 7.6. At the bottom of the report there was a note: fPSA clinically relevant only if PSA over 4.0.

Uro Dr was now on vacation for a week so left a message for him to call me to discuss the results. Ok I tell myself, everyone needs a vacation,but he doesn't call. In the mean time I'm looking up what a 7.6fPSA% means. I find out that it shows a high % that one would have cancer. He finally calls about the day I was going to call him and talks about the test results and says maybe we should wait another 3 months and give another test. HUH?...Oh and by the way "you probably have 50-50 chance of having cancer ,see you in July"

That's the day I joined this group with a post "Should I get a biopsy". Almost everyone that responded to my story said "GET THE BIOPSY!" I called the next day and demanded that I get a Bx. Dr. said if you want one I'll order one. His partner does those. I call the office to schedule a biopsy and I get an appoint a month later.So now 2 months have gone by.

I finally get to office for the Bx and the first words out of this Dr's mouth were "well your PSA is in normal range but I guess I'll give you the Bx if you want it" I said " ya but what about the fPSA% 7.6. Guess what his response was....Yup....he said "not relevant with a PSA under 4.0."

By this time I'm thinking,"what am I doing? Am I really just over reacting to all this?" I get the Bx and was told the results would be back in about a week. 3 days later the Dr. calls and tells me he has some bad news. You have G9 prostate cancer I want you to come in and schedule an appointment so we can talk face to face. I go in and the receptionist says" The Dr can see you in a month" I went off. I finally went Off!.... something I really never do...i told her " I just got a call from the Dr and I have Gleason 9 cancer and you can't get me in for a month" Sorry she said . He's full all through June if he wanted to see you he would have left me a note.That was Friday afternoon,June 3rd. I was on the phone first thing Monday morning to VM and by the end of the day I had an appointment in a little over a week with the head surgeon of their Uro dept. and also an appt. with a RO the same day.

Sorry for the long story but my point is,yes you can have cancer with a low PSA score. In fact like Tall Allen said a low PSA combined with a low fPSA number can sometimes be indicative of high risk cancer.

I was tired of being told my PSA was in normal range . I knew there was was something that wasn't adding up. All the factors(urinary problems,suspicious DRE, a significant rise in PSA over a yr, low fPSA%) should have triggered someone you would think.

What I did was I reached out to this forum and I did my own research and I pushed to get to the point I'm at now. If you look at my signature you can see where I'm at. Be your own advocate...it's sad to say but that's what you have to do these days. Some don't and it makes things for them much worse. Anyways, I've taken up way past my share of space here but again welcome to another from the "Great Northwest"

The Artistic One - Mark

Apparently, they are hard to differentiate, and it is possible to have both. The one who can tell you better is Jonathan Epstein at Johns Hopkins. I suggest you call the number on the following website and ask them about how to go about it. I assume it's different from just sending them biopsy slides.

pathology.jhu.edu/department/services/secondopinion.cfm

You might want a consult with a medical oncologist in Seattle too. I recommend Celestia Higano at UWSeattle. If anyone there has treated cases like this, it would probably be her. I have no idea how radio-resistant this kind of cancer is. Possibly, pre-treating with docetaxel and hormone therapy will increase its susceptibility to radiation, but I really don't know.

Dear Tekon and Tall Allen;

Well I do not know the difference between Interductal vs Ductal. Sorry for any confusion I caused. I have a note to my surgeon to help explain the difference between Intraductal and Ductal.

The reason I used them interchangeable was that I may have both. My biopsy report that was done before the operation stated that I had interductal carcinoma and the pathology report done after the operation stated that it was metastatic ductal adenocarcinoma. Go figure.

As soon as I hear as answer I will post it.

Hi Tekton, welcome to HW, sorry you have to be here. Looks like you got hit with a diagnosis that sucks but I can see you are educating yourself on the right treatment path. Keep it up. As Artist Mark states, you have to be your own advocate with the doctors and your treatments. Take care and keep us up to date. -JR

Teton,
Welcome... (that just doesn't sound right). Glad that you found this forum. There are so many knowledgable survivors and advisors on this forum for you. Here you will get the support you require to help with difficult decisions regarding your G9. Most doctors don't have the time and collective knowledge this forum has to offer.

I am a G9 too, diagnosed Jan.1, 2013 at a V.A. Emergency room with a level 9 pain. My ischium was being attacked by the beast. (A level 10 pain is passing out pain)

Your attitude is going to serve you well as you advocate for yourself.
May you find some comfort and answers here.

Dr WHO said...
Dear Tekon and Tall Allen;

Well I do not know the difference between Interductal vs Ductal. Sorry for any confusion I caused. I have a note to my surgeon to help explain the difference between Intraductal and Ductal.

The reason I used them interchangeable was that I may have both. My biopsy report that was done before the operation stated that I had interductal carcinoma and the pathology report done after the operation stated that it was metastatic ductal adenocarcinoma. Go figure.

As soon as I hear as answer I will post it.

Hey Dr. Who
Thanks for input, seems odd that the doctors and their cohorts like to use different words and different arrangements of same words for maybe or maybe not the same thing. I am seeing a prostate cancer specialist at UW Medicine on Tuesday this week. I have the same question on my list. Will share answer no matter how vague :)

Tall Allen said...
Apparently, they are hard to differentiate, and it is possible to have both. The one who can tell you better is Jonathan Epstein at Johns Hopkins. I suggest you call the number on the following website and ask them about how to go about it. I assume it's different from just sending them biopsy slides.

pathology.jhu.edu/department/services/secondopinion.cfm

You might want a consult with a medical oncologist in Seattle too. I recommend Celestia Higano at UWSeattle. If anyone there has treated cases like this, it would probably be her. I have no idea how radio-resistant this kind of cancer is. Possibly, pre-treating with docetaxel and hormone therapy will increase its susceptibility to radiation, but I really don't know.

Hi Tall One
I am seeing Dr. Andrew Hsieh at UW Medicine on Tuesday this week, appointment was setup prior to getting on forum. Reading his bio he may be a good option. I guess part of my task will be to learn how much he has worked with patients who have my (lucky me) not so common but still unfriendly diagnoses.

I originally set this appointment up as a second opinion meeting after my surgeon gives me his recommendation. My 3 month appointment with surgeon is 16 weeks after surgery :( huh? must be the new math they are teaching kids these days.

UW scheduler called and let me know they had a cancellation so I jumped on it. So my second opinion is before my first opinion lol. Will post results of appointment.
Tekton

here we go again.. Iterductal has now been added to this thread...while we struggle with intra ductal and of course good ole ductal... since I have no idea how the prefixs apply to this ductal thing..{i suspect no one here does}...for illustructional purposes I will explain how it works in air traffic control facilities...When one is working in a ATC facility where the is more than one controller there{99.99%} he may need to coordinate some thing with someone else in that faciity for ...whatever...this is called intra facility coordination...If that controller needs to coordinate with another controller in another facility{bricks and mortar} this is called inter facility coordination..Both are done via land lines{taped} and refers only to controller/controller communication.. no a/c are in this loop..caution intra within same facility...inter...between two different facilities... It always confused me because inter some how to the mind{Mine} implies within and intra outside...it does not...but wotks as I stated} Maybe some one can extrapolate something from that as it relates to ductal cancer...maybe not...Out!....