toml's Journey:
Patient: Prostate Cancer
Patient Info: Finished active treatment less than 5 years ago, Diagnosed: almost 11 years ago, Male, Age: 71, Stage I, Progressing despite hormone therapy: Don't Know
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Experience Icon Descriptions
Procedure: Drag this icon to show a procedure.
Radiation: Drag this icon to show a specific radiation therapy experience.
Drug Therapy: Drag this icon to show a specific drug therapy experience.
Clinical Trial: Drag this icon to show a clinical trial experience.
Side Effect: Drag this icon to show experience with a specific side effect.
Oh No: Drag this icon to show when something bad happened (e.g., cancer’s back, lost job).
Celebration: Drag this icon to show when something good happened (e.g., last treatment, hair is back).
Loss: Drag this icon to show a time of loss (e.g., lost hair, lost loved one).
Decision Point: Drag this icon to show a time when you had to make a tough decision.
Other Care: Draft this icon to show a time when you needed other care (e.g., hospice, psychotherapy).
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Diagnosed
Oh No
My story of how I found out about this prostate cancer is probably different than most. I mentor a boy who has special abilities. He is Telepathic and we comminuicate mentally most of the time, He told me I was sick, that I had cancer. I kinda blew it off at first, but he kept at me, so I wen and had another psa test done. It was 6.93 so the doctore suggested I see a specialist and I did. He did a biopicy and it came back, cancer.
Robotic assisted laparoscopic prostatectomy
Procedure or Surgery
I had the procedure, it was not bad at all. 2 days after surgery I went home. The tube and the bag were a pain, as expected, but within a few days I felt great. after about a week I went back to have the tube and the bag removed. The test to see if the ureatha had healed to the bladder was more painful than the surgery. I felt like I was going to explode. Anyway that was removed and I had a psa test done about 30 days later and it came back at >.013. So the doc said that was great.
Full body (Bone) scan
Procedure or Surgery
I requested a body scan, aminly because the boy I work with said that the cancer was still there. Anyway I went and had it, but the report is flaky to say the least. There were hot spots on the test, and the doctor who read it called them areas of contamination. I could not get a better explanation,other than he said it might have been urines on my cloths that showed up, and that the one spot was the pad I had on. Well to me the aream covered by the pad is the area where the cancer was. I asked if I should removed my cloths and the pad and just wear a robe and the technician said no, it would be fine. Also in the report it states that my arms from the elbows to my finger tips were not clear enough to read. From what I understand this test cost over $5000.00 and It isn't worth the paper it was printed on. I have requested a 2nd body scan and I am going to see if I can get the 1st one taken off my bill.
Surgery
Procedure or Surgery
LIke I said I had the surgery and it was great. One issue I have been having is the entry point in my belly button hasn't healed, and now , yesterday it slit open and is infected. There has been like this stitch think sticking out of it from the beginning, I went and seen the surgeon once and he cut it off, but more came out. He said it seems my body has an issue dissolving the stitches. I had to go to the hospital yesterday for something else and I had the doctor look at it and he told me I had to call the surgeon today. Anyway I have an appointment with the surgeon this after noon. My concer is this is the enrty point that the removed the prostate through. I am concerned now that maybe some cancer cells leaked out of the surgical bag during removal. Any way the site has opened up a little and I can see into it. I had a psa test done yesterday and it is >0.5 so it has went up from the original of >0.13. so I am concered.
Bladder problems
Side Effects
Well as expected there are bladder problems. Mainly just the leakage. Some days I think I have control , others it just leaks all day. It is just very frustrating. I have to shower several times a day, as the urine has such a strong smell. My 5 year old daughter came over yesterday and was sittting on my lap, and she told me I smell like puke. Well you know the saying " Out of the mouths of babes" Anyway it doesn't help to know that others can smell it know matter how well you bathe or wear cologne. Also the other side effect is one that bothers me and it is impotience. It's been 95 days and still I have none of the male sensation back. Sure some peole jike about it, and say well at 60 it didn't work anyway. Well It is something that you just won't get over, so be prepared.
Not sure, I guess I can say I am happy I am still alive
Celebration
This person has yet to add any details about this experience.
Lost a very good friend to stage 4 cancer, and now I have another one with satage 4 Lung cancer
Loss
It hard to sit here and think about cancer. My friend of 25+ years was diagnosied in October with stage 4 abdominal cancer, he died 2 weeks ago. Now the Guardian 3 of the boys I mentor who is 45, has stage 4 lung cancer. Up until July 25th cancer was just a word., now it is my life.
Depression/Anxiety
Side Effects
it's been 95 days now since I had surgery. Yesterday I think I finally admitted to my self that I have cancer. I had an Anxiety attack. I had to go over to the ER. I had really bad pressure in my chest and arms, and for the past 2 weeks I have had theses killer headaches. Anyway they did all the checks for heart attack and 2 cat scans of my head and found I was ok. The doctor talke dot me for a while and gave me some med to calm me down. He said I was having an anxiety attack, and that I had to just calm down. My wife and daughter both work at the hospital, so most people there know I had the surgery. The doctor told me I might want to go talk to a psychiatris to help deal with the anxiety. It's not only the cancer, but the fear of dying. The fact that my friend died so fast, and that another friend is in the same boat. It's also that I am an empath, and I absorb pain and feelings from others, and in most cases I internalize it. They boys I mentor have all been through horrilbe things in their short lives. I am a go between for the boys and the psychiatris. These boys only speak to me, no one else. and I absorb all their pain and suffering.