I am 61 years old, married for 2nd time for 21 years to a special woman who gave me 2 wonderful kids, now 17 & 19, and an adopted son from my first marriage who is now 33 and living with his girlfriend. I was diagnosed with prostate cancer in April 2018. I had been seeing my PSA numbers slowing rising over the past 5 years and even had a prostate biopsy when my PSA was 5.6. It showed 12 benign cores. Then it rose to 6.88 and I believe they figured it might be due to an enlarged prostate 1 year later. Nothing really seemed to be a major warning sign and this was August 2015. My next full exam was Nov 2016 and now my PSA was 8.54 and they wanted to do another test. That test came back as: PCA3 positive (56) which wasn't accepted as medical proof of cancer due to the nature of this new test. My insurance didn't even cover the cost of this test and I couldn't get into a cancer center with these test results. I was very confused but figured it must not be that alarming if a well know cancer center wouldn't accept me as a patient. My next physical in April of 2018, this year, proved to be the high mark of PSA 14.9 and the tests began. 4/11/18 - MRI prostate - 21.6cc; left mid PZ posterolateral lesion - PIRADS 5. 4/25/18 - Transrectal ultrasound and prostate needle biopsy - 4/12 cores with Gleason 9 (4+5). Large hypoechoic lesion left base peripheral zone measuring 13.98 mm x 16.22 mm with some regularity. SV was negative. Then I was sent on 5/14/18 to get a whole body bone scan to see if the cancer was anywhere else in my body which came up negative. I was told that this was an aggressive cancer and therefore not a slow growing type. I made my decision to have the prostate removed over radiation treatment. 6/14/18 - I had robotic assisted laparoscopic radical prostatectomy and bilateral pelvic lymphadenectomy - now Gleason 4 + 3 which was a lower Gleason score. No seminal vesicle invasion, negative surgical margins, and 22 negative lymph nodes removed. I felt the surgery went well and I was soon out of the hospital in 2 days. I was only surprised about the 22 lymph nodes that were removed and thought that seemed excessive but there were signs that they might have been questionable. I was still retaining quite a bit of fluids in my body cavity that they said would go down in a few days or week. Unfortunately, the fluids got worse and started to settle in my lower private area around my testicles. This became so uncomfortable that I had to sleep in a recliner and keep my legs elevated to reduce the swelling. Nothing was working and I decided to call the surgeon and explain what was happening beyond normal fluid retention and he sent me for a CT. After seeing the results he admitted that amount of fluid was abnormal and prescribed Lasiks which I only took every other day. After 6 days I had lost over 10 lbs in fluids and started to look normal again. During the recovery period after surgery I also was having a lot of bladder issues and couldn't control my urination flow. I had to wear pads all the time and once I saw the surgeon he decided to send me for "pelvic floor rehab" which I didn't even know what that meant. Once I realized the reason to strengthen my pelvic floor muscles I was eager to do anything to help control my weak bladder control issues. The first 2 places I called for PT for pelvic floor rehab did not accept men as patients. Now I was really confused and wondered why this would be such an issue. I certainly didn't have any issues being naked in front of any PT professionals if that were even necessary. I had been through enough procedures already that nothing new was going to bother me. I did find a very reputable PT rehabilitation center that did provide that pelvic floor rehab for men and it has been 5 weeks, once a week and the therapy has helped with my bladder control. Less pads as well. My big question to the group is that on 7/25/19 I had my PSA tested now after the prostatectomy surgery and it was PSA 0.7 reading. The surgeon wanted to retest my PSA in 2 weeks which resulted in PSA 0.8 score. Neither the surgeon or myself were pleased with that number. I am getting ready to meet with the Radiation Oncologist this Friday to begin some 9 weeks of radiation treatments. What do you think? Is there any special type of radiation that is for patients after their prostate has been removed? I certainly don't like the idea of radiating that general area in the first place. I already have enough complications with incontinence and ED. I feel like I am battling 3 things now instead of just cancer!Read less
After surgery and now PSA 0.8 - what'... - Advanced Prostate...
After surgery and now PSA 0.8 - what's next?
You seem like a really nice guy that didn’t get the treatment you deserved. But the good news is you’ve found the right place. Lots of great info here. First find a center of excellence near you with someone who specializes in prostate cancer. Makes all the difference. Say where you live and someone here will give you a referral. Then google the TOAD study. They found “immediate hormone therapy after the first sign of recurrence after curative options were expired ......cut five year mortality and half compared to waiting for PSA to rise and metastasis to become detectable”. Now I’m not sure your curative options are done but something to think about. And adding Zytega early to the hormone early reduced deaths by 40% in a recent study. Start doing your own research. This site has lots of articles to reference. Take your care into your own hands. That’s the best advise I have.
Schwah
Hi Schwah,
Thanks for your reply and advise. I am already writing down those drugs names and meeting with my Oncologist this Friday. I am also prepared to possibly be on some type of hormone treatment if necessary. I live near Baltimore, Md and have had some experience with John's Hopkins Hospital and their imaging centers. The Urology Center I am going to is a large group in this area and I just feel I need to ask more questions myself but usually that is what I do. Sometimes the doctors don't always have the best bedside manner and getting information out of them seems to be difficult at times. I am glad I found this group and have already learned quite a bit about the more serious situations which I hope I don't have to experience. My next step is going to be radiation treatments to get rid of this more aggressive cancer before it spreads to other parts of my body. Thanks again for your help.
MusicMan61 in Baltimore
Johns Hopkins is awesome. Go there. By the way if you do hormone treatment you have to do hard weight training 3 days a week to all muscle groups. Makes all the difference. I actually gained muscle mass and feel great on hormones and Zytega for a year.
Schwah
Hi Schwah,
I made an appointment to meet with the Director of Johns Hopkins Radiation Oncology on Oct 3, 2018. I am still meeting with my current group tomorrow to review their plan for my radiation and or hormone treatment. I really feel much better having these 2 choices for my upcoming medical care. Thanks to you and the many others on this site for helping me open my eyes for more specialized care. I certainly want to be around to see my children grow up and have families of their own.
MusicMan61 in Baltimore
What Schwah said. Arrange a consultation with medical and radiation oncologists at Anderson, Dana Farber, Memorial Sloan Kettering, Johns Hopkins or similar. There are a number of centers of excellence around the country. I believe one of the most significant decisions we make is our choice of medical team. You are young with a life-altering disease. It makes a difference.
Sorry for your present circumstances - best to you going forward
- ForestCreature.
Hi ForestCreature,
Thanks for your advise about who we choose in our medical care. I do have a very good urologist and his team now on my case and I feel they are watching out for me now. I don't think was the case earlier and I am glad this senior urologist took over my case and got me on the right path. My daughter, who at 3 months old had a fused skull that was going to end he life if not corrected, brought us to John's Hopkins Hospital where Dr. Ben Carson performed surgery to open up her skull in the appropriate sections. It was called craniosynostosis. She is now 17 years old and doing well. We had to see Dr. Carson every year after surgery for 5 years to check her brain development and any signs of damage to her brain. He is quite a remarkable surgeon and person as well. It does matter who we choose to care for our health issues. I hope my next treatments go as planned. I meet with my Oncologist this Friday. Thanks for your comments.
MusicMan61 in Baltimore, Md
Hi ForestCreature,
Thanks for your words of advise. I made the appointment today to meet with the Director of Johns Hopkins Radiation Oncology on Oct 3rd. I will keep everyone posted on my progress. I really appreciate everyone's input.
MusicMan61 in Baltimore
You’ve already gotten great advice here, and you’re in an area with a great treatment option. Please get that second opinion from a teaching hospital/center of excellence before you start radiation. If they’re going to do the whole pelvic area or the prostate bed, they can only do it once, so it needs to be right. My guess is that a good radiation oncologist will want a contrast MRI and a PET scan before deciding on anything.
The incontinence usually resolves in 3-6 months., so keep the faith my brother!
Hi Canoehead,
Why would a MRI or PET scan be good before having my radiation treatment begin? The cancer is somewhere most likely in the prostate area since that is the only place it showed before surgery.
Hi Canoehead,
I took your advise and will be meeting the Director of Johns Hopkins Radiation Oncology on Oct 3rd for my 2nd opinion. They have already started requesting all my labs, scans, biopsies,xrays,etc. Thanks for opening my eyes as well as making me feel more at ease in my continuing education and treatments.
MusiciMan61 in suburb of Baltimore
Ask when or if they give you radiation how it "seals" you at the "current stage" of continence ( or in-continence) you are. I too had robotic removal of my prostate. My PSA didn't stop after removal- called persistent PSA. So I needed radiation 3 months after surgery. 39 total sessions. One blessing in my fight was I had total continence when they pulled my catheter 7 days after surgery.
let me tell u something when u have pc u don't wait for the docs to a test later u ask them what is the next step. remember its your body with cancer not these jerks and if not happy with their treatment change. when my psa was 5.7 got a bisocpy 7 out of 12 cancer. had the lupron/eliguard shot months later the psa climbed to 8 i decided to do radiation and after about 3-4 yrs then it started to increase took all the pills, later zytiga this is after 10 yrs and i was dx at age 62. 10 years now and my psa is at 28 which to me is low now taking a new process called PROVENGE but your not even close to that so just read google everything out there and ask questions its your life dude charlie
Keep doing your kegel exercises to keep the incontinence away. Especially if you get radiation. You have to drink lots of water before each treatment. Did anyone discuss waiting another 60 days for another PSA before starting new treatment? It is not that unusual to move .1 in either direction. It is worth the conversation before you start 38 radiation treatments.
Hi RickW,
I have heard some of what you were describing and will know more after my 1st of 2 meetings with my oncology specialists. I had my 6th session of Pelvic floor treatments with a professional PT today and she has really helped me improve my bladder control. Some of the testing is quite interesting since I can see the pelvic muscles strengthening while watching the electrical sensors displaying various peaks and valleys on a computer screen. I am told to hold and squeeze my pelvic muscles for various time intervals, usually 5 - 10 seconds, and than release and relax and do it again for 5 sequences. I can do these exercises while watching TV on my recliner and it has helped increase my pelvic floor muscles and the sphincter muscles. I can now make it to the bathroom before losing it. These are also known as Kegel exercises which does help in reducing incontinence problems. Thanks for your help.
MusicMan61 in Baltimore
I would want to have one of the newer scans , 68 Gallium PSMA Pet for example, to see if the cancer is confined to the pelvic area before starting radiation. If already metastatic, radiation is not going to help.
Also, remember that if you're incontinent before radiation you'll be incontinent afterwards too.
Bob
Hi BobMac2,
Thanks for the advise. I am writing those scan names down and will discuss with my 2 oncologists in the next weeks. I have one meeting tomorrow.
MusicMan61
Hi BobMac2,
Your information came in handy at my meeting with my RO. He had me meet him in his examining room, instead of his office so he could sit next to me and my wife. I thought that was unusual because I even asked if he was going to exam me. He said no but he had some important information to tell me. He said we are not going to start radiation treatment right now because he thinks my aggressive cancer is outside the prostate area. I said what made you believe that and he said he review some early CT's that were done before and after my PR surgery and he noticed some changes in my lymph nodes outside my prostate area but directly above in the retro-peritoneal space in the abdominal cavity. That is when he started to mention doing more scans and the one you mentioned, 68 Gallium PSMA PET and a Axumin PET scan - tracer to find the cancer. The bad news is these are not covered by private insurance but covered by Medicaid Insurance if 65 years old or older.....I am 61. So I asked how much these are and he said $6,000. I am getting another CT on Thursday of my chest, abdomen and pelvis area PO + IV contrast at a Johns Hopkins Imaging Center which I had been at before. They are going to be looking at changes in the suspected area since we will have a 4 month period to review. I also was given another doctors name at Hopkins that might be able to get me into a clinical trials for this specialized scan and save me a lot of headaches and costs. I meet with them on October 3. I also will be checking my PSA reading again later today or tomorrow for my next readings. I probably should have posted this as a new topic on my site but I am new at this and just wanted to thank you for your help and recommendations. The doctor was surprised that I knew about that scan and said you have been doing your homework. He also wasn't afraid or offended that I was getting a second opinion to help me at the Johns Hopkins Oncology dept. He said he has sent patients to them before and that me feel better as well. Thanks again BobMac2.
Best regards,
MusicMan61 in Baltimore.
FYI - I had the 68 Gallium Scan at UCSF as they were doing a study. Not sure if they are still recruiting?
Anyway, my BCBS insurance ended up paying for it.
To Musicman61: I echo the advice that you get an excellent Medical Oncologist. Ask for references here from the members. I've had 39 fryings of the prostate bed after my open RPD which were a piece of cake. However years later symptoms showed up regarding my left kidney and urinary tract which the doctors believe may have been caused by the radiation. So be aware of the side effects of radiation and make sure you get a good radiologist. Also make sure you keep on playing your Music and keep on laughing!
Good Luck and Good Health.
j-o-h-n Thursday 09/20/2018 5:32 PM EDT
Hi j-o-h-n,
Thanks for sharing your story with me. I have 2 very important meetings coming up tomorrow and Oct 3 to decide my next treatments. I am meeting with Johns Hopkins Radiation Oncologist Director on Oct 3 and feel much more at ease knowing I have 2 consultations coming up to better understand my options going forward. When I was first diagnosed with prostate cancer in April this year, my urology doctor stated that I was beginning a long journey. I didn't really understand what he meant by that but now after finding this group I realize that this will be a life long journey that has just begun! My objective is to play the game and keep playing music for my friends and clients as long as I can. I started DJ'ing when I was just a young teenager at our local ice rink and haven't stopped yet. That began in the early 70's and I recently did a employee appreciation party for 900 people in their back parking lot. I even told them about my recent diagnosis and they were very proud to have me as their DJ. I have a DJ buddy who is going to help me once the radiation treatments begin so I can continue entertaining my friends and clients. I am a mobile DJ which involves a lot of set up and lighting designs for the various venues we encounter. Let me know if you know anyone interested in buying LP records. I am now considering selling my rather large record collection. Mostly purchased from the early70's through early 90's. Then CD's became the norm. Now, everything I play is in a digital format on a specific software application, "Serato" for DJ's coming through a digital control mixer connected to a terabyte drive with all my music. I download about 1 gig of music each month and I am a few months behind right now. I must add that to my to do list. Thanks for your advise. I am worried about the radiation doing even more damage to my bladder and other surrounding organs or tissue.
Thanks again for being part of my journey!
MusicMan61 in suburb of Baltimore.
I can't blame you for worrying about being fried. As I mentioned before I had NO reaction to the daily sessions, 39 in all (8 weeks X 5 -1, no weekends) at Memorial Sloan Kettering cancer center in NYC. It's was only a couple of years later that my issues turned up. But that was 13 years ago when I got fried and I guess equipment has improved since then. Just ask the " Johns Hopkins Radiation Oncologist Director" if he/she will direct or oversee the frying (or someone very competent).
You will be around for a very very long time so don't let the Pca rule your life. Go out there, enjoy life and keep on DJing.
As you know vinyl is coming back but I'm not a collector... I collect other "stuff" "stuff" and more "stuff".
Good Luck and Good Health.
j-o-h-n Thursday 09/20/2018 9:53 PM EDT
You may want to talk to an oncologist who SPecializes in prostate cancer
Before you start any radiation which can have unpleasant side effects..
He or she can offer other treatment which miraculously lowers
P s a. Best to you
Hi Hirsch,
Read some of my other responses and see that I did listen.
Thanks for your help.
MusicMan61
Tough road. 12 negative sticks tells be that they missed the cancer because you definitely had it. Typically a repeated biopsy is done in 2 to 6 months. I do not know what a PCA3 test. Sounds like it is a test that is indicative of cancer and needs a follow up biopsy. A biopsy is the only way to confirm. I am surprised that a cancer center would not explain that to you. But all of this is water under the bridge.
A Radiation Oncologist will want scans as base line makers before he starts and to “see” areas to radiate. A Medical Oncologist will also wants scans as a baseline to “see” what is going on and how to treat. In either case, the baselines will reflect progress or non-progress of their treatment. I had five scans during my first year. Nuclear bone scan and soft tissue CT scan,
I had 22 sets of scans in the first seven years, starting in 2003. Then one more set of scans two years ago.
Visit with your Radiation Oncologist. See what he can do. You may ask h8m for a referral to a great Medical Oncologist. It’s how I got to mine. I had seeds and then 25 sessions of IMRT with two different ROs who worked in tandem. Within a year I had a failure with a PSA that never really came down with radiation. When PSA jumped to 32.4, my RO told me scans showed mets to T3 and L2 of my spine. I mmediately got an injection of Lupron. Then we had a large discussion centered around, what would you do if you were in my shoes. I ended up with a research Medical Oncologist in academia.
Long story short, I entered into a six month chemotherapy trial and have never looked back. The MO explained micro-metastates and told me that it did not matter which primary treatment I had as these microscopic cells had already escaped the prostate capsule into the lymphatic and vascular system. Chemotherapy was the only answer.
Disclaimer. Based on my personal experience with metastatic prostate cancer, I am biased toward early and aggressive treatment with chemotherapy. So please .... Discuss options and probabilities with a Radiation Oncologist and a Medical Oncologist, then make your decision. Good luck in kicking the bastard.
Gourd Dancer
hi , hope this helps,, had my prostate removed feb 6 2018. week later Lupron shot,, then a month later i started radiation 39 days. now its sept 21, and started Ztiga with presitone.
Still have big time incontinence. Sorry improving. Seems like a lot of stuff happens, but i trust my doctors. and i hope and pray they are doing me right. Hang in there. Dont be afraid of radiation. only thing i hated was i had to have my bladder full and pooper empty everday. i have 2 more shots of Lupron left to take, 1 every 6 months. and Zitga pills for 2 yrs. Hope it all works. But you did find a great place to talk about everything. glad i found this site. Good Luck,,, be strong Kevin
Also my PSA was 91.7 in October2017 , in January of 2017 it was 2.92 had the test and samples taken from the prostate. Agrressive cancer. 1st test Sept 4 PSA <.02 now to keep it there
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