Starting in early July, 20104 I had 45 days of IMRT radiation treatment, I had diarrhea almost daily, for several weeks, minimal control of bladder, my prostate felt like it was on fire, and the tiredness kicked in after four weeks, lasted six months. I was often in bed by 6:00pm for a nap of 30 to 60 minutes daily.
Pain at times was so severe, that I was on morphine, until I went to another hospital specialist on rectal examinations. Seems it was not my hemorrhoids causing the pain and bleeding, but my sphincter walls were red raw, I guess from the radiation, so in essence I was burnt! With treatment, it eventually healed.
There are so many tales of side effects, it does not bear thinking about, but the worst being the loss of a sex life, where the stats are between 30% and 40% lose it permanently. For me, that was devastating.
Add some depression into the mix, due to the death of my wife in March 2014, then the theft of all my gifts, wedding rings, furniture, etc., by her family, and orders from doctors to see a shrink, then 2014 was a very bad year. The docs claim my depression hampered my recovery, I have already seen four grief counselors, plus support from a prostate support group. However time and help has been of immense benefit.
I have a question which has not come up on any forum so far, but which has bothered me and I hope you may have come across previously.
I have had a discharge for want of a better description, from my rectum. It's been happening pretty much since radiation treatment ended, but that was six months ago now.
The substance is in the form of a gel, almost a cloudy jelly like substance, not a lot mind, but it is an almost daily occurrence. Is this normal, and if so, for how long is it going to continue? My urologist has no answer, which puzzled me.
Another issue now is loss of an erection. I believe the blood that is giving the erection is leaking out somewhere. Some urologists prescribe a low dose Cialis, but to achieve a decent erection, for ten to twenty minutes, I also take Viagra. All I get from the urologist, is 'be patient', it could take up to two years for the nerves etc., to heal. He did not like it when I suggested he give up sex for two years!
So I wish to know who in our world has had such problems, and what was your solutions. I really would appreciate you feedback.
My last PSA count (April 13) was 1.2, which is up from the 0.9 from January. So I will have another PSA test July. The discharges have reduced considerably over time, but my sex life has suffered greatly, as previously described in my bio. I still have to visit the bathroom every night, and have to use Flomax almost daily to ensure a decent urine flow. Two beers, me and bathroom are good friends!
I would like to mention I attend the only prostate support group in Houston, a city of around ten million(?) people. It's open to all men and their wives/girlfriends.
http://www.texustoo.org/
I am currently on a six month blood test, the next being due in July. My sex life is still hit and miss, sometimes reasonable, often times poor. Urologist doesn't care. If I had breasts, I am certain I would I would have much better advice and after treatment.
Had my last PSA check up just before Christmas, and it appears my PSA is rising again, and is currently up to 1.45 and now I have to be checked up every three months. I'm hoping and praying my cancer is not going to come back.
On another point, I usually have one visit to bathroom per night. Also need to use Flomax or Dexilent to maintain a decent flow.
Sex life has never recovered from the radiation treatment, urologist has been of no help in that area.
It would be nice to say this has improved since treatment but the truth is, it is getting worse. Sure, getting older doesn't help, yet being told to use Viagra is the only way forward, is simply not true, besides being expensive.
Seems to be nothing I can do about it, unless someone else can provide another solution.
Just after my last post in October 2018, I found out that I relapsed with HCL (Hairy Cell Leukemia). Add to that four biopsies with skin cancer two of which were cancerous and subsequently treated satisfactorilly. However the HCL, was only treated with Cladribine in March 2019, and then with Retuximab during April & May. Since October 2018 through August 2019, I had 142 medical appointments. Given I live in Houston, Texas, the costs are extremely high (a standard bone marrow biopsy was $9k+ and a bloodtest often topped out at $1400!!!) I had somewhere between 50 and 60 blood tests during the same period. Further, due to a childhood incident, I developed a phobia of needles, such that by April 2019 my phobia was diagnosed as PTSD!
As of October 1st 2019, my PSA which had bagan to rise to a high of 1.49, has now dipped to a very low reading of 0.880 ng/ml. Obviously which the leukemia and the radiation, my sex life is currently non existent.
At this time I am not in remission and after the last blood test in late September 2019, my bloodcounts fell instead of rising, which is a concern. If they happen to drop again on October 21st, then the likelyhood is that I have relappsed with HCL. I hope to God that does not happen.
I wish all guys with cancer the very best for your situation. In Texas, there is only ONE support group. You can find it at Texustoo@gmail.com or feel free to contact me. I am based in Houston, Texas, but I am a Londoner.
Such has been my journey since July 2019, I omitted to update my story. In short, I had minor rises & falls in my PSA, but nothing of significance. My Hairy Cell Leukemia (HCL) was treated from April 2019 onwards Cladribine then Retuxin) remission my mid 2020. I suffered with Giardia daily for seven months straight from December 2020, trust me, you won't like that. Had two cataract ops either side of Covid. Also had six skin lesions removed, three were benign. Suffered with Acid reflux for a year now, getting treatment. From October to December 2021, I've had PET scan, CAT scan, Ultrasound, endoscopy & colonoscopy, and then a cystoscopy, all because I lost blood via my urine. Nothing serious was found and thankfully, no internal cancer was found. Sad to say ED has not improved since my treatment back in 2014, and never will. I don't and can't inject myself. Thankfully these days I have a very understanding lady and we work to find additional ways for sexual satisfaction.
My treatment for PC was back in the summer of 2014. Since that time, I have not needed further treatments thankfully.
At the time of my diagnosis, my wife passed away, buried her on our 5th wedding anniversary. As you might expect, I suffered with some depression. I certainly didn't ask about side effects, which I now realize was a terrible mistake. It was only after forty days of radiation, and finding a support group, did it dawn on me what I had done.
In the following year, I became bitter and angry at the doctors who treated me. In 2022, I actually made a complaint to the COO of the clinic who treated me. A bit late, but at least she listened.
These days, I'm fine, but suffered leukemia in 2018, treatment in 2019, then in remission in 2020. I still suffer with this though as it's currently not curable but treatable. I also have to put up with several skin lesions but most were benign except for two which were operated on.
It's been an uneventful year, no issues with the PC and the count of my PSA back in April 2024 was 0.657 ng/ml and quite stable. Next check up will be around April 2025.
No other medical issues at this time.
Vinny's e-mail address is: chutneymaster AT gmail.com (replace "AT" with "@")
