turismo,
welcome to hw prostate cancer and are corner of the world on the web.
your story and feelings are far more typical then you might realize. you have been through a lot already, and at times, you probably do feel hopeless. your descript
ion of wanting to sleep all the time is a "red flag" sympton, among others, of clinical depression. for that aspect of your pc fight, as others have suggested already, seek professional help before the depression gets the best out of you.
if you don't have faith and confidence in your current doctor(s), then its up to you to make a swtich if possible. i find having trust in my current medical team paramont to my own PC journey.
every journey is different here, some men seem to have it easy, some seem to have it hard, though i personally don't feel that any cancer journey is easy.
below, i copied and pasted a post of mine from further down, it was in reference to my 3rd year anniversary here at HW, since you are brand new, let it serve as a brief version of my pc journey. it's not to make you feel sorry or sad for me, but to show you that things can get complicated, and how i have been dealing with it:
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For those that are new, a short summary of my PC journey:
Started getting PSA tests at age 50 in 2002. Each year, it rose by ½ to 1 or more a point. In 2007, it rose to over 4, and my GP sent me to a Uro for the 1st time. A biopsy was done, 12 core, and came back neg to PC, but lot of PIN. In 2008, PSA had risen to over 12, 2nd biopsy done, also 12 core, neg for PC, but lot of HGPIN and 2 suspicious shadows. Uro begged me to have a 3rd biopsy 6-7 weeks later, I was reluctant and wanted to wait another year. 3rd biopsy was only 7 core, came back positive for PC, 7 of 7 core positive, 40-90% cancer, even more HGPIN, and Gleason 4+3.
Talked to surgeon and radiation doctor, was not ruled good candidate for “Seeds”, went with surgery. Only 15 robotic surgeries had been done in my area at the time, so went with an experienced surgery who only did
open Surgery.
In the weeks waiting for surgery, PSA rose from 12.x to over 16.x, very fast rising. Had
open surgery at St. Francis in Greenville, SC, was in hospital for 4 ½ days. Original catheter was in for 30 days, due to complication at the bladder neck. Also, left nerves removed, right side was suppose to be removed, but couldn’t due to complications.
Pathology came back as Gleason 3+4, and prostate was 20% cancerous, one small positive margin.
At 30 days, cath came out, blocked up within hours, had to have another cath in. Week later, cath came out, blocked up again in hours, had to have another in via local ER.
At 63 days post surgery, cath came out, and was ok at first. Between Feb and July of 2009, had to have 2 corrective day surgeries for bladder neck strictures, as well as 2 emergency dialations. Bladder neck continued to scar close sometimes within weeks.
By mid-summer, PSA readings post-surgery continued to rise. Nine months after surgery, it was considered to have failed. Consulted with 3 radiation oncologists to consider Salvage Radiation.
Due to all the strictures and catheter time, it was decided that just prior to SRT, I would have a suprapubic catheter installed by surgery, so that I wouldn’t have a stricture in the middle of undergoing radiation. Had the surgery, and another stricture operation at the same time.
Underwent radiation October and November of 2009, IMRT, 72 gys over 39 sessions. Radiation was done dry, without a full bladder, by choice of the RO (big mistake). Was reported being physically burned by the radiation by the 4th of the 39 treatments. Doc kept dismissing the pain, but it increased and continued throughout the treatments.
Completed the SRT in much pain. Uro was unable to remove catheter, due to excessive burning, damage and pain to bladder and bladder neck. Cath had to be painfully changed out every 4 weeks, as I was unable to urinate naturally due to all the pain. Each month we hoped there would be some natural healing, but not only did that not happen, it continued to get worse.
On top of that, my PSA continued to rise post SRT was declared failed within 9 months.
Reconstructive surgery to the bladder and bladder neck was considered, but ruled out due to such severe damage. My only choice was to agree to the Ileal Conduit Surgery, meaning I would have a Urostomy (stoma). It was a very tough decision, as it’s a difficult surgery, and would mean my bladder and normal urination would be by-passed for life.
Underwent the surgery in September of 2010. Was in hospital for 5 ½ days, very long and difficult recovery, and getting use to having to urinate into a bag/device from the stoma in my side.
Started having a lot of hip pain, and started physical therapy. Did that for 5 months, then switched over to Oncology Rehab, been there ever since. Pain increased, to include my right hip, right leg, and entire lower back.
PSA continue to rise, in June of this year, was at 5.8 and rising fast. Under the care of a good MD Anderson associated Oncologist, and still dealing with severe chronic fatigue and severe chronic pain. On long term pain meds, and need a cane to walk.
After a protracted fight, was approved for permanent full time disability from Social Security in June of this year. So my personal only income is SSD and Medicare.
So in my 3 years, underwent 8 surgeries, the radiation, spent nearly 1 ½ years on regular catheters, plus 51 continuous weeks with suprapubic catheters.
PSA is still rising. Doctor is not recommending HT at this time. Next PSA will be checked again in December.
Believe it or not, this is the short version.
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As you can see, my new friend, I have been through hell and back the past 3 years. I sit here typing this post urinating without feeling into a plastic bag from the stoma in my side, as the result of my bladder being destroyed by radiation as a secondary treatment. I have to walk with a cane, and on a pain patch 24/7 and having to take strong prescription pain meds around the clock for all the nerve damage from the radiation going wrong. My surgery and radiation failed, so I have no curative hope for stopping the cancer.
My point, is that you should never ever give up. There is always hope. There are always possibilities for the future. I can't control the cancer that is still racing away inside my body at this point, but I can control how I feel about having cancer (for me this is the 4th time in 11 years dealing with a serious cancer). I live each day one day at the time, I try not to think too far out in front of me. I still keep loving my wife, my children, and my grandchildren, and my friends here at HW.
One of the best ways to help yourself, is to reach out and try to help someone else. That's what works for me. Turn your own PC journey into a testimony of strength and courage to others. I know that is not easy, and its hard to take that first step.
We are here for you, in the most literal sense. The brotherhood (and sisterhood) here at HW is very real. We come here for support and encouragement, we come here to share information and knowledge, we compare stories, we cheer with each other's good news (like a good psa reading), and we grieve for those with bad news equally. If you need to vent, no one will every complain about it to you or try to discourage you.
Wishing you only the best. If you want to e-mail, my address is available.
David in SC
Post Edited (Purgatory) : 10/14/2011 10:10:13 PM (GMT-6)