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Rodger K lives in Arkansas, USA. He was 68 when he was diagnosed in March, 2009. His initial PSA was 4.65 ng/ml, his Gleason Score was 7, and he was staged T2C. His choice of treatment was External Beam Radiation+ADT (Proton Beam with ADT). Here is his story.

I have been personally monitoring my prostate and PSA; for 3 years now. It stayed at 4 for quite some time with a slight hardness on right side but this year (3 years later) PSA; did a jump to 10.4? The prostate is firm with no bumps on the right side and not as firm on the left. I have no ED and no continence issues. I do have groin soreness periodically for the last 5 years, even before PSA; spikes. In fact about 10 years ago I went through a period for about a year that I had to pee up to 7 times in the night. But it may have been my diretic or sugar dibitus pills?

So now I have decided on a biopsy, 10.4 scares me, with general anesthesia (that is all that is offered here in Texarkana). So I like that fact. The uro wants to drill 12 plus, with misc drills IF a interesting spot is seen. He is not my favorite URO, and I sure don't trust him, but it is difficult to find trust in a doc in such a controversial disease. Sometimes I think the cash register is used in the decision process. I see now the pathologist have raised their Gleason scores as of 2011? What is that all about? They seem to say there was too many understaged? [There were signifcant changes in the Gleason Grading system from January 2010 which has resulted in a so-called 'migration' to higher Gleason Scores. There is some basic information on the DIAGNOSIS page - just page down.]

My biopsy is this Wednesday. I'll keep ya posted. I also am on healing well, but they are mostly surgical choice guys. My leanings if Positive and I qualify is seeds. But I live in Arkansas and seeds are only available in Chicago, Anderson, or City of Hope. I'm still looking. They have seeds here but do 3 a year? gasp!

There are lots of good surgeons around even in Arkansas. I am not keen on robotics and the additional training the surgeon must go through and am amazed at their advert for a 2 day hosp in/out? It is real hard for me to believe. That a highly skilled surgeon can't beat a computer control. In fact Wiliam Catalona is not a fan of the computer. I'll repost after Gleason has his say!! Unless I am in total panic!!!

UPDATED

January 2013

I had by biopsy this morning at 6am, yeeeks. had to get up at 5am. The fleet enema the night before is a controlled explosion, took me 10 minutes to reclean the toilet and a shower, toilet paper would have taken a roll. This morning I got a shot in the rear like a tetnus shot, was a biggy. 2 pills for nausa and ? I forget. wheeled in the OR. But hanging in the breeze! Nurses were real purley! nose pipe in place IV, she said pretty quick you'll get real sleepy then she said you're all done. That is amazing, a piece of time gone. Doc took a 12 core with 4 more interesting areas, but absolutely nothing noted on sonagram. no nodules, no stones, no calcification, geeeze. results in 2 weeks.

Ya know I gotta say my paronoia was completely unjustified, my friends biopsies in the old day WAS painfull one said 8 on the pain scale. Geeze. and the horror stories on the net really scared the dickens outta me. and made me never want a biopsy no matter what.

Only a few drops of blood with my 2nd pee. soft food diet to start. they said actually stay mobile.

I can do that. well, tick tock for the results. I am hopefully for a Gleason 6 or below. But I realize 7 seems to be the norm at my age.

UPDATED

January 2013

Prostate gland needle biopsies A,B,C and D (LB,RB,LLM,LM) Invasive adenocarcinoma of the prostate gland, Gleason score 4+3=7 Perineural invasion in all fragments. E,F,G,and H (RM,RLM, LA and RA) Invasive adenocarcinoma of the prostate gland, Gleason score 3+4=7 Perineural invasion in blocks f and h.

The sections a through H consist of 16 fragments of prostate from 8 areas. Invasive adencarcinoma is al fragments with glean morphology, of predominately glean 4 with small tubular glands and areas of cibriform gland growth noted. Perineural invasion is identified in most fragments.

Pretty durn scary!!!!!!

UPDATED

January 2013

Bone scans and cat scans for next friday, Loma Linda said I would qualify depending on scans. I am a little surprised wth my 16 core, 4 4+ 3 and 4 3+4 and 3 with 100% PSA; 10.4. I am really interested in MD Anderson in Houston, but I would be alone. In Calif I would have kids age 40. So family and friends are all in Calif. Cancer would be devastating alone? What is hospice? I may not qualify for Brach? Chicago cutoff is PSA; 10? and most like gleason 6's. but Anderson cutoff is PSA; 20? Why the difference I don't know yet. My uro said I had two years to go? [The thought that a man with Rodger's diagnosis has only two years to live is so bizarre it makes one wonder how well qualified his doctor is - The Elephant In The Room gives some better insights into the question "How Long Have I got?"] So he was sure bleak. But won't be involved in treatment anyway.

UPDATED

February 2013

I am getting closer to a treatment decision. My bone scans are next Friday and my appointment with onocologist is the following Tuesday. He is more knowledgable, it seems of all the different options. He is leaving surgery on the table, depending on the scans. He is recommending the trimodal treatment , beacuse of the aggressive nature of my cancer 4(4+3) 3(3+4) =7 and 3 (100%) completely surrounding the prostate. with no bumps on the prostate, no urinary problems, but I have some discomfort? he thought because of nerve involvement. His trimodal is 8 months of ADT, 2-3 months of IMRT and concluding with Brachythrapy. My age 70.5 and heart stents/diabitus and a 60% chance of extension beyond the capsule leads me to this option. Surgery is a weak option if there are mets. He does not use the Fiducial markers and I am concerned about that. But since that will be done at home I'm not sure I should leave town for markers? But Brachy needs a very high level of expertise like the Chicago Prostate Center. Dr Moran there agrees with all this trimodal strategy but wants brachy there. In addition I am braced for the big guns at MD Anderson. They have every technology, all are the latest, including protons if I qualify. But if I have mets it won't. They have asked for my path slides and want to do their own thing. They refuse an MRI from here as they want a specific endorectal?? I am impressed with their go get attitude. She said leave plenty time in my schedule. Boy thats not a problem.

UPDATED

February 2013

Well I sent my Path slides from Texarkana lab to MD Anderson. I was hoping them to be a little high here at 4+3=7b? But no such luck, MDA called me last night at 7pm to tell me I was a 9!!!! gasp. [Although this is not the news that Rodger wanted to hear, it does show the importance of getting an expert second opinion.] Then she told me not to worry. well, it took a large Xanex to stop my panic attack. They were making sure my records were all filled out and forms for my 10am tuesday, in Houston. also she has me scheduled for lots of tests and blood letting. One test is an Endo rectal MRI.

I was worried about various test but that takes a back seat to cancer. My intermediate stage cancer was moved to advanced. Now my many Contrast ct scans and bone scans are negative, but they said no guarantee, they just cant find any. Dr Moran from Chicago, said there was a 60% probability that micro cancer has escaped the capsule! [The terms used to describe disease outside the gland is discussed in E-Letter #9] In which case he recommends the trimodal approach, of ADT (short term), IMRT, and Brachy. I call that everything but the kitchen sink. I am hoping for the surgery option? but it is escaping, as my stents and enlarged heart is doing the best it can at 70yrs old. Major surgery adds a large element of risk. They also are asking for a bladder scan up the peepee? but have not scheduled? whew! thats done under a general anes. here. Oh the CT scan found my testicle pain! hydrocele, both sides. the good news is my diabitus is in check, but won't be with ADT???

UPDATED

February 2013

I completed the endorectal coil MRI at MD Anderson. It strted out very painful till they backed off the pressure. I screamed in agony. Like my colon was being ripped appart. The good news was as best they can determine at MDA there is no METS. It is totally at bay at the moment. And they have completed a review of the Contrast CT scans and the bone scans and agree with the reports provided that the scan looks good. But the cancer is widespread invading the entire prostate gland. They want to recommend 3 months of hormone treatment (ADT) Lupron shot then travel to Houston for treatment. But they do not have Medicare/Blue approval yet. Now Loma Linda does have insurance approval and my daughter lives nearby so a free place to stay and a support network for ole me. Boy I never thought hitting 70 would be such a challenge. Surgery is an option, but is NOT recommended by many doctors I have spoken to, including surgeons. Age, diabitus, heart, parkinsons, and some bowel problem? Colonosphy job in a few days. so ADT is a bleak sure thing for me with all treatments because of my Gleason 9er!

UPDATED

March 2013

I started at Loma Linda and my choice after a course of ADT then 4 weeks of Protons then 5 weeks of Photons. the Photons will get the prostate and the bed. the protons just the prostate. I think he said 6 weeks before I start on the simulation and build the pod. Dr Jobola, very nice and has been around the block and treated an incredible number of PC patients. I feel I am very lucky to have him.

UPDATED

April 2013

This wednesday april 24, 2013 I'll get the pod made. I have been attending the group meetings and a very few guys attend. but those that do are extremely helpful and encouraging.

I joined the free health club which is the most amazing gym/swim club I have ever been to.

as a patient membership is free, and all parking is free, first come first served. my experience with eligard so far is a general weakness, low back pain which has increased since the shot. and anxiety attacks which has subsided, and hot flashes are more persistant but bearable. I have weight gain 8 pounds and need to deal with that? I will be 4 weeks on protons and 5 weeks on 3d conformal photons. My gleason 9 and PSA; 10ish has got the oncologist to recommend both. as Photons are better for the bed. although no scan including MRI has shown any invasion outside the prostate it is better safe then sorry. I don't look forward to the balloon but have some lidocaine from the doc. I have hemiroids and they can be painful when expanded!!

UPDATED

August 2013

It has been 4 weeks since completing my proton jurney at Loma Linda, under Dr. Ben Jabola. He has been a wonderful doctor and I wish all my doctors were like him. my symptoms are gradually easing off. but hot flashes are more numerous and sometimes constant. blood pressure has been going in peaks and valleys. 110 to 165. weight was at a low of 138 and now is slowly climbing at 145. The intense diareah I had while undergoing the photon phase (5 weeks) has finally subsided. The gleason 9 doomed me to the combined treatment, even though my PSA; was below 10. I have missed my monthly eligard shot as the doc couldn't get medicare to pay for it? so they are trying for Lupron. The country doctors here in Texarkana don't seem to have the procedures set up like Loma Linda. No problem with shots there.

UPDATED

October 2013

Just all the normal Lupron side effects, plus a few because of current modalities. I have arthritus and a heart condition so these seem to be agravated by Lupron. I am still debating how long to be on this drug? Although 2 years is my doctoral consensus, it comes with side effects which can be life threatening and brutal. So its the old game of weighing the quality of life versus the quantity.

UPDATED

November 2013

I've done 6 months of the lupron and my oncologist suggested a break. although a break is not indicated for us 9 ers. they want 2 years. But I am reading about equally good results on intermittant.

My next PSA; is in 6 months. my testosterone is 32.48. Lupron affects my bp and sugar levels.

And my thinking is not good. and since I live alone far from the kids, its a problem I'll need to remedy soon.

UPDATED

February 2014

I am doing pretty good considering my cancer battle occupying my thoughts. My PSA; is nice and low, expected while on ADT. My Lupron sentence from Dr. Jabola at Loma Linda is 2 years. I have just completed my 12th shot. Every man I know hates this stuff. I am in a small Loma Linda group of 9'ers. We all took the combined therapy(ADT, Protons, Photons) 3 have dropped out of the ADT. In my case I'm pretty tough so am just struggling along. I am restoring a 55 chevy. so that takes lots of time. My worry has been my white cells, before treatment 2/13 my whites were 4.0 (MDA) then after treatment in Texarkana in July 2013 I was 1.3! gasp!! the doc never told me. Then in nov I was a 1.6 and now in feb 2014 I am 1.7. so there seems to be hope. The urology nurse said she worked in the lab before and lowered whites happens after radiation.I feel a little bit out in space on this disease as I never see the urologist, his nurse just gives the shots, the oncologists thinks I am stable, the GP goes duh! and keep up the fight dude, you are doing great! what?? I wonder if others have had this side effect. Google has not returned a lot of info on this one. Loma Linda will not return my calls, geee, Medicare only paid them $300,000. How about a little courtesy here? I am afraid to go to church now with all the hackers and caughers. I wipe down all grocery carts and stay away from people.

UPDATED

December 2014

It has been 10 months since my last Lupron, and the hot flashes have given up. Now I get the chills in the evening. not too bad. I was nervous about the PSA; this time, but relieved at the low score. It appears the 79.2 gray I got has cost me somewhat. although the periodic runs has been in my family a long time. (mother, sister, dad). I see a gastrologist but he like most doctors here seem stymied when it comes to radiation. And there isn't a radiation oncologist in the area. And my oncologist is also stumped. So I self treat, imodium, peppermint, probionics, etc. Given I was a 9 with possible lymph node involvement I'm not complaining. I just have to stay home all the time now. Hopefully in time I will see some relief. At one year I had episodes once a week, now at 1.5 years I am at every 2 days. Fill up and empty I call it.

UPDATED

October 2015

Well not doing too bad. I get the PSA; checked on schedule per Loma Linda guidlines. I bailed on the Lupron a little early 18 months instead of the prescribed 2 years. My white cell counts are still low, 2.2. all that radiation on the bone marrow did me in. I was already low in the 3's. My chronic diarreah which was not bad in 2013 but got really bad in year 2014. and in 2015 usually 20 days of the D in a month. Imodium does nothing nor lomotile. but this month 10/15 I have improved. Diet is key. I have some groin discomfort which I have had years ago? Proctitus in addition to cancer 9. So I am 2 years 7 months and will check in with Loma Linda Dr. Jabola next week. Doctors here are clueless on how to follow up and side effects. Having low testosterone 220 sure doesn't give me much get up and go.

UPDATED

July 2016

I am actually doing better if it wern't for the low T! my PSA; is creeping up to normal at 0.2. My white cell count is still low at 2.5. My diarrhea has improved by diet and Imodium. It's been 3 years from July concluding the combined treatment at Loma Linda (Dr Jabola). I went to see him last July and he said I didn't need to come all the way to see him. PSA seems to rule the rest of my life. Loma Linda said at 5 years if the PSA remains low they might consider recommending a mild T therapy. My urologist here in Arkansas monitors my progress, and blood tests. (Dr Todd Payne) The low T causes groin pain, back pain, hot flashes,(all night) But mostly an inability to get out of my chair. I can't possibly go to church any more and sit for 2 hours! I have no concentration. I do go to car shows, driving doesn't bother me. and I just kick back in a comfy chair at the show. (55 chev 210, and 69 Chev CST). I was amazed at how many treatment buddies at the balloon center (LL) were hot rodders. In fact some were national champions!! Research does show extreme controversy about T replacement to cancer patients.

UPDATED

July 2017

My urologist is pretty happy, after 4 years. I'm scared to death though. My best friend in California had protons in 2012 and he is gone 4 years. His PSA shot to 8 a year ago and he was tired of fighting. He hated the lupron, it might have saved him. My doc said if the PSA starts moving it's lupron for me. It's a wicked poison and don't know how much time it buys.

Rodger's e-mail address is: guitarman71859 AT yahoo.com (replace "AT" with "@")


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