July 17, 2008 was when I got the call from my Doctor telling me I had Prostate Cancer. I was a Gleason 9 (4+5), PSA 5.8, stage T1c.
The Doctor told me my Partin Table Score as follows:
46% OC(Organ Contained),
45%CP(Capsule Penetrated),
5%SV(Seminal Vessels),
3%LN(Lymph Nodes)
I guess because of the Gleason 9 and my Partin Scores; he told me I was not a good candidate for surgery. He started me on Flutamide and after about a month I got my first shot of Lupron. Thus began my treatment. I've had ADT (Androgen Deprivation Therapy), IMRT (Intensity Modulated Radiation Therapy), and Brachytherapy. I had 25 sessions of IMRT which started in October 2008 and ended the first week of December 2008. In January 2009 I had the Brachytherapy. I had 63 seeds implanted.
It all seemed to have worked; as of my last doctor's appointment on April 28.09 my PSA was >.01
I have one more Lupron Shot this month and then regular blood tests.
During the whole experience there was no pain to speak of. There were a more than a couple of days where I had some stomach cramping. If I didn't feel good, it was no problem for me to leave work and go home to bed. My IMRT appointments were in the afternoon, which allowed me to go home and take a nap after my treatment. I only missed two days of work during the 5 weeks of treatment.
When treatments started I noticed some changes in my body, my skin wasn't as oily as usual and my hair has thinned out or stopped growing altogether in various places. I found I was cold most of the time. I would go to bed and be teeth chattering cold and then wake up drenched in sweat hours later. Some nights it was a three t-shirt night. My energy is slowly coming back, although I find I still can't do everything I used to do at the same level before the PCa.
My partner, Kevin, my boss and co-workers have been extremely supportive during my treatments. I work in Information Technology and my co-workers would pick up my work when needed to keep systems running. I thank them all. Especially Kevin who lived with PCa with me.
September 12, 2010 My PSA still remains at less than 0.10 and the doctor tells me that my testosterone levels are OK. I see my Oncologist every 6 months and my Urologist every 6 months. So I'm seeing one or the other every 3 months and having blood work done.
I have trouble urinating and the Oncologist thinks I might have BPH. I told this to the Urologist, when I had my next appointment and he told me he would like to do a flow test on me. So when I go again in 6 months, I have that to look forward to. I've started taking Terazosin (Hytrin) again. I retired last year, mostly due to my health. I find that there are still a couple of days a week where I need lots of sleep and I still cannot function without taking lots of breaks. I can't concentrate on a project for very long, so it takes longer to get things completed. So on the PCa side I'm doing OK.
However, I've developed other problems which are related to the treatments. I had ADT with Lupron. I didn't know it at the time and the doctor never mentioned that one of the side effects might be that I could become diabetic. No one in my family has ever been diabetic, but now I am. I was prescribed Glyburide and Metformin for the diabetes. As I monitored my blood sugar, I would regularly go hypoglycemic (low blood sugar) so I was taken off the Glyburide. That seemed to help, but regular blood testing by the doctor showed my kidneys were not functioning normally. He changed my medications again and took me off the Metformin and put me back on the Glyburide but at half the dosage as before. That seems to be working as I'm not having as many hypoglycemic days as before. I'll find out about my kidneys at my next appointment when I see my PHP next week.
I find it ironic that after I have retired that I now have high blood pressure and have to take medications for that, also. I don't know if or how this is all related, but we should be aware of some of the side effects of treatments.
Reading this site, I have found that some of us have developed Bladder Cancer after having Prostate Cancer. I too am now in that group.
I was diagnosed in September 2011 with a tumor. I had it removed October 5, 2011 and everything went well during surgery. I had the normal problems after the surgery: trouble urinating, burning, urgency. My Doctor recommended radiation and chemo after the surgery.
I made appointment with my radiation Dr. and when I went to him he told me I couldn't have any more radiation because of the prostate cancer treatments. The chemo Dr. didn't want to give me treatments either. Both Doctors recommend that I have my bladder removed.
At my three month check up, when my Urologist did another scope into my bladder he found that the tumor was growing back.
He referred me to USC. I was assigned to Dr. Eila Skinner. She looked at all my surgery/pathology reports, CT scans, lab work. She decided to remove the tumor again. I had surgery at USC Norris Cancer Hospital in February 2012. Again, same after surgery problems as before.
I will be starting six BCG treatments in April and then I will go back to Dr. Skinner six weeks after the last treatment and she will look at the bladder again. Then she will decide if removal is necessary.
So I'm in the wait and see mode again. I will update my story after I've seen Dr. Skinner again.
Well it's been almost five years, since I was diagnosed with PCa. I think I was fortunate in that it was discovered early, even though my Gleason Score was so high.
My PSA still remains at less than 0.10 and other than the ED problems that go along with PCa I'm doing remarkably well. I'm still taking terazosin to help with urination and I am still diabetic.
As far as my Bladder Cancer goes (which may or may not be related to the Prostate Cancer) I've had a couple more surgeries to remove tumors and "stones". Non-cancerous both times. The BCG treatments seemed to have worked.
I heard, just yesterday, that a new study from UCLA says that chemo should be administered directly after bladder surgery to prevent further recurrences of the cancerous tumors. I have a friend that had chemo right after his bladder surgery (almost a year ago) and has had no further problems, so that is definitely the way to go. My uro only did what he minimally had to do, which led to more surgery and treatments. I did change urologists after my second surgery and the doctor I have now is very good.
I have a good support system in friends and family and appreciate all the care they have given me.
This will be a quick update.
Not much has changed since my last update. My PSA is still less than 0.10 and I'm still taking the Terazosin at the same strength to help with urination.
I've had more problems with the bladder cancer. On my last 3 month check up (in June) my Uro decided to remove the "stones" again, as the calcification had built up again. I underwent surgery July 9th to have them cut out. The doctor saw no evidence of cancer while removing the stones, however the pathology report came back that there was a trace of cancer growing back. My doctor thinks that I'm OK because he cut out everything back to the original surgery; removing any scar tissue. So I'm back on the wait and see. I'm taking a new medication that is supposed to prevent the buildup of calcium in the kidneys (for kidney stones) in hopes that it will work on my bladder.
It's been a while since I've last posted. 2015 was not a good year for me health wise and 2016 was just a little better.
This isn't really about my prostate cancer, as it was basically cured; but about the after effects of having prostate and bladder cancers.
Starting in January of 2015 I got a Urinary Tract Infection (UTI). I couldn't urinate and had to have a catheter installed into my bladder to allow me to be able to purge the urine into a bag. I was given oral antibiotics for the UTI. However, when the urine was cultured, it came back that I have a pseudomonas infection and the oral antibiotics were not working for the UTI.
Long story-Short…Over the period of 11 months I had 5 catheters, 5 PICC lines for IV antibiotics that were given starting twice a day for two weeks and ending with three times a day for 4 weeks. The infection appeared to clear up, but came back a couple of weeks later. I had home health care for the PICC lines and lots of medications. My husband, Kevin, got very good at hooking me up to an IV drip.
Three different doctors agreed that the infection had colonized in the scar tissue from the treatments for the prostate cancer and bladder cancer. Their recommendation was to have my prostate and bladder removed and a new bladder constructed for me.
On November 25, 2015, one day before Thanksgiving, I underwent a 6+ hour operation at Keck/USC Medical Center in Los Angeles, CA and my prostate and bladder were removed. I now have an Indiana Pouch. That is a new bladder constructed from part of my intestine and bowel. I have a "Stoma" in my belly button which I have to insert a catheter every 2 to 4 hours to drain the urine from my pouch.
I spent 5 days at USC and had 5 drain tubes coming out from my stomach. Over a period of weeks, one by one they were removed as the drainage stopped. I had a urine bag for weeks which made sleeping hard for me. It was a long recovery period. I'm still sore occasionally, even a year after the surgery.
I had a few late night emergencies in December 2015 and January 2016 and had to rush to the emergency room. At one hospital, the doctors had never seen an Indiana Pouch and were baffled on how to treat me. They finally put me in an ambulance for a two hour drive back to USC; where I spent a few days in the hospital. Then a few weeks later, another trip to a local hospital, where I spent another 4 days.
I had home health care for a few months while my incision healed. The nurse would remove, clean and re-bandage my wound.
I must be careful when I "cath". I try to make sure everything is as clean I possible, as I do not want to get a UTI. My urologist said I would get a UTI from time to time and that is just what happens because of the surgery I've had. He's prescribed antibiotics for me to have on hand for if/when it happens. I must be doing OK, as I've only had two UTI's in the last year.
Now, over a year later, I'm finally adjusting to the regiment I must follow for cathing. At night I sleep in 2 ½ hour segments. I think I'm getting less sleep now than when I was working full time.
I have "travel kits" so that I can cath when I'm not at home, with all the supplies I need to drain myself.
I now apparently have to have regular CT scans and ultrasounds to check that everything is still OK and that nothing has changed. I have had to have two "touch up" surgeries at USC to stop leakage from the stoma. (Wet clothes are not fashionable.)
I've been able to stop some medications and others have changed.
This is the "short" version of my story. If you would like more details, you may contact me.
Once again, it's been a while since my last update.
As I mentioned in my last update; I had quite a bit of leakage from my stoma and the doctor had tried on multiple occasions to stop the leakage. He decided that I needed to have my stoma replaced and wanted to schedule me for another surgery.
Talking to the doctor, we decided that part of the problem was the belly fat I had gained when I took the ADT. I asked and got authorized for a "tummy tuck". I had to see a plastic surgeon to do that part of the surgery.
I was scheduled for surgery on November 22, 2017 at USC/Keck Hospital in Los Angeles. Another 6+ hour surgery and two nights in the hospital, then back home to finish my recovery. Five pounds of skin were removed for the tummy tuck. My old belly button was gone and a new one (basically a slit) was given to me. I also had a hernia that was removed. Since the operation I've had no problems with leakage like before. Very little, in fact. The incisions have healed nicely with no infections, unlike last time two years ago. I came home with two drains this time from the tummy tuck and a Foley catheter that I had to have for about a month.
I am very happy with the results of my last operation and hope that I no longer have to worry about leakage. Since that operation, I have lost about 20 pounds and gone down three pant sizes.
Recently I have contracted another strain of bacteria, giving me a UTI. I am taking antibiotics for the UTI and the doctors are trying to figure out why it keeps recurring. Since I don't urinate through my penis, there is no "burning sensation". I usually have extremely strong back pain, due to the kidneys. That is how I know I'm getting a UTI.
I hope this update will help someone else. Knowing the various consequences of PCa might help other men. You may contact me if you have any more questions.
This will be a short update. Not much has changed since a year ago. I'm still doing good, traveling and enjoying life. My health overall is good. I still see my doctor about every 3 month for my diabetes, but other than that, my uro only wants to see my once a year now.
When I travel, I have a suitcase full of my medical supplies to get me through the days that I'm away from home. Having to cath on an airplane is an experience in itself.
My PSA is still below .01, which since I no longer have a prostate (or bladder) is good. All in all, I'm very lucky and healthy to have had such good doctors and support system.
Once again, I am willing to answer/help with anyone that might have questions.
Not much has changed from my last update.
I'm still doing good, traveling and enjoying life. Took a cruise last year. My health overall is good. I go to my PCP about every 3 months for my diabetes checkup which is under control. I still believe I got this from the Lupron shots I received while undergoing my cancer treatments.
I'm seeing my urologist every 6 months and he usually has me do a CT or ultrasound before to make sure everything is still OK with my new bladder.
I still travel with my suitcase full of medical supplies. I keep "kits" with me at all times; in my vehicle or backpack in case I need to cath myself if I'm away from home.
My PSa is still below .01, since I no longer have a prostate.
Once again, I am willing to answer/help with anyone that might have questions.
Still doing fine. Not much has changed since my last update. I moved from California to Arizona in 2020. Enjoying life. Traveling, seeing friends, going to events. As always I'm willing to correspond with anyone that would like to hear about my treatments.
Hello everyone,
Another short update. I’m still doing well. Nothing much has changed since my last post. Since my prostate was removed in 2015 I’ve had no more problems on the cancer side.
I have a few doctors appointments coming up in the next few weeks and I expect to hear that I’m holding my own on all fronts.
Still enjoying things. I travel, visit friends and have great neighbors for get togethers.
As always, I’m glad to respond to anyone that was questions about my cancer experience.
Chuck's e-mail address is: ckncal AT gmail.com (replace "AT" with "@")
