Started at clinic with summer of 2015 complaints of abdominal pains.
They did a urine test first and found blood.
Colonoscopy was also ordered and performed July, no problems detected.
Ultrasound and X-rays were ordered all came up OK.
PSA test was also ordered in July coming back at 2.3.
After seeing urologist in January 2016 he found a lump on right side.
Biopsy performed January 2016 overall score of 9, some 4+3 and 4+5s. Indications were a very small focus of high grade high risk cancer mid right section.
Saw surgeon and oncologist at hospital due to the 9 Gleason he did not recommend surgery, radiation and hormone therapy for 3 years was his preference.
At the same time the surgeon told me that radiation therapy with hormone therapy was the same effectiveness versus operation.
I'm very much into research so in between seeing all the different doctors I was researching and cross referencing to make sure info was accurate and not just what I wanted to hear. So before every meeting I knew all the possibilities.
I decided before even seeing this first doctor I wanted robotic surgery. Within 24 hours I decided to have robotic surgery, called and made appointment. This doctor is very busy and takes a longer time to see him. At the time I was jacked up in high gear, with a Gleason 9 at 51 I was super stressed, I wanted the operation done right away.
After that decision I had a lot of heartache and the long delay to see doctor was cooking my brains, many doubts, so I called and made an appointment with different surgeon at the same location. I was thinking it was stupid why would 2 doctors have different opinions on the same patient. Well, this doctor was adamant that operation is the way to go. He did open retropubic and that made me hesitate, I was set on robotic. But this doctor answered all my questions without any attitude and showed great respect. He further suggested I immediately go on hormone therapy.
Initially, when I first found out about the cancer the research indicated that my best chances were operation then hold back on the radiation and hormone if the operation fails but in the case of Gleason 9 it seems that initiating hormone right away is the right thing. At the first meeting I didn't want to hear about hormone it scared the heck out of me and I wanted nothing to do with it and 3 years I couldn't imagine giving up. I'm only 51 and my erections and sexual function were at the absolute top priority.
The second doctor though was 100 percent accurate and I have complete confidence, so, even though he did the open retropubic operation and suggested hormone therapy I went with him over the robotic surgery. So the confidence I have in the doctor is why I made the decision.
Operation was performed mid June 2016.
Today is July 26, 2016, a few days ago I got back results of PSA and it is 0. The hormone therapy is still in effect (the therapy will drop that PSA to 0 anyhow) so this test is just a place to start, to me it doesn't mean much in the way of any indication but it made me feel better nevertheless.
They were able to save the nerves on the left side. So erections are possible. The catheter has a tendency to get stuck on the penis as that organ likes to move around a lot lengthen and shorten, I complained and asked if there was anything for it as when it bunches up and gets stuck it doesn't feel very nice, they gave me some lube, worked well. Only thing is I guess it turned me on: as the next morning I woke up with a very painful but hilarious and uplifting semi erection! Wow was I amazed. Blown away. Before the, operation even with hormone therapy (started with bicaltimide then zoladex), I had excellent sexual function.
Am waiting to see doc to find out pathology later on this of parts removed.
About 6 weeks post open retropubic prostatectomy
Pathology of parts removed from prostatectomy operation,
Margins positive: anterior, posterior, lymph vascular and perineural
All not mentioned are negative or clear
So do I wait till second PSA in 3 months or let bladder heal a bit then do radiation not even thinking about PSA?
I don't know, well, I know, just the beginning of a journey of its ups and downs.
Still roll dice and wait?
Based on what I read on this site and elsewhere the Gleason 8 is bad and with so many positive margins tell me it will only be a matter of time before PSA rises or metastasis.
But maybe I could get a few years with some sexual function, yet, this is not my only concern.
The radiation will definitely fry any nerves left, and, also: bladder and rectum. this is post prostatectomy bladder and rectum will get higher dose than with prostate still in place.
Anyone got ideas I'm all ears, a few weeks till I see oncologist.
Positive for extra prostatic extension
Positive for inked posterior and inferior margins
Positive for perineural invasion
Positive for lymphatic permeation
Everything else is o.k. lol
I've seen oncologist and medical oncologist.
Here in Canada Doctors are confined and can do only what is approved.
With the pathology report I got it seems like a death sentence to me. I really wanted adjuvant chemo therapy. Not approved here. Would have to go to the US at a cost of about 100k. After meeting with medical oncologist I was discouraged and have given up getting adjuvant chemo. I still feel that this will spread and radiation and hormone therapy alone will not cure it.
I really didn't do much research into chemo or radiation's side effects. I simply wanted to go for a cure. I think a very reasonable approach - wanting a cure.
Looking at radiation in detail there is much to know: specifically 'pelvic radiation disease'. I wont go into depth but many nasty side effects. And, as yet, not much research into the prevention and treatment. The side effects can be very severe and if lucky enough to be cured of cancer and have a fairly long life expectancy 20-30 years the situation progresses and deeply affect the quality of life.
I've already gone thru 3 months of hormone therapy and it's no walk in the park. I can safely say I will not spend the rest of my life in it if radiation and hormone therapy fails.
Looking at it all with a different perspective I will wait for PSA to rise before doing any treatment. Enjoying what I can out of life before submitting to these treatments.
I understand cancer is worse than the treatments, yet, as I see it, there is a 10 percent chance that the current treatment will be enough and i'll be cured.
Do your own intense research but stay open minded as there is so much info out there.
Keep in mind before radiation that there are some things you can do that may make chances of pelvic radiation disease less of a likelihood: quit smoking, get lots of pro and pre-biotics and if your BMI (body mass index) is below 18.5 it is a worse prognosis.
Anticipating radiation therapy i'm going to pack on as much weight as possible I'm 6'2" at 165 lbs. If I can get a few months before treatment I should be able to put on 20 pounds easily. I'll be making appointment with MD to see about going on cholesterol meds for a while until end of treatment or if PSA doesn't move for a year.
Will be seeing oncologist end of September and have another PSA test in 3 weeks.
Almost forgot ended up with stricture at bladder neck got dilated a week ago and have catheter in for 2 weeks. Here's hoping it stays fixed as it can be a shitty or should I say pissy complication if it happens during or again after radiation.
Had to quit my job which is a contract position. Money is tight.
Cancer the great devastator.
Remaining mostly positive. This stuff is a constant grind though, slowly sucking the joy out of life.
Thats it for now.
Hi Guys another update:
July 21st 2016 I had PSA test and read it to be .01 when it was actually .010 a fair difference this while I was still on hormone therapy (goserelin) and 6 weeks after prostatectomy. The 21st is also significant as it is the 3 month point where if I was to continue hormone therapy I'd get another shot (which I did not).
September 16th 2016 PSA is .030 57 days after last test. Apparently hormone therapy takes about 6 months to fully wear off but of course nothing is set in stone.
So my hopes of evading radiotherapy and more hormone treatment are rapidly washing away (not that I had much hope of that anyhow but sort of you know).
I've had many sleepless nights thinking and researching adjuvant vs. salvage and when to do it. To some degree much of my stress is gone because PSA is on the move and moving fairly quickly. As much as I do not want radiation or hormone therapy it seems the problem of deciding when or if has been already made.
Of course the PSA could halt at a certain point and then only very slowly climb. It is really quite impossible to tell. Is it climbing because hormone therapy is wearing off and there is some residual locally or distant? Is it climbing because it is growing? Or is it combination?
Either way it doesn't really matter in the end for me. I understand that .008 is some number that after prostatectomy if your under then you there is better chances of being free of PSA recurrence and if you're over not so good of a chance. And because of a Gleason 8 at pathology and the rest of the features that the chance is no pretty much certain that I will experience PSA failure and there is no point in putting off the therapy.
The urinary tract is healing fairly well. Had to be dilated about a month back. Still suffer stress incontinence coughing, sneezing and farting. That also is getting better.
Meeting with Oncologist Sept 30 likely at that time will make appointment to get the process started.
I've a few questions mainly is if they use IMRT. Also if there are any chemo preventive agents that can be given such as: Amifostine or Bethlomethosone Diproprionate (I understand these are enemas and or suppositories) or something else I don't know about to protect rectum. Done alot of research and realize that if I live long enough 'pelvic radiation disease' chances will increase.
That's about it for now.
Will keep ya posted.
Feels good to put this stuff up here. It's like letting go of it all to some degree
Thanks for running this site whoever you are :)
Saw oncologist Friday and they suggest full pelvic radiation and 2 years hormone therapy. Hormone to start in December 2016 and radiation approx 36 sessions about February 2017.
Many thoughts about that of course and not many are positive.
2 more PSA tests before next appointment. I'll base my decision on those results. If it's slow, currently .03 about 90 days out of surgery I'll hold off for a while on any treatment hormone or otherwise. If it's >.1 then it will be time to make a serious decision. Likely I'll do the whole thing but ya never know.
Today is a landmark. My first morning laying in bed I farted WITHOUT LEAKING! I coughed and still no leakage. Stood up and did the same thing, no leakage! Also tried sitting in my favorite sitting position with knees drawn up to my chest and again no leakage, FANTASTIC. Urinated and there was about a cup still, good stream. So, finally, coming around the bend making substantial progress in the area of continence. I know by the end of the day muscles will be tired and not work so well and continence will likely fail. Yet, there you have it. Next step is to be fully continent by end of the day. Then fully continent with full bladder in morning, then end of the day.
It's a good day. Haven't had many of those so far.
Updated PSA as of Oct 20, 2016: .041
another PSA coming end of November 2016.
Last month .030.
Hormones should be worn off completely Feb 2017, but no one can say for sure about this eh?
Sure is hard to choose: Do nothing. Watch and wait. Or radiate. The choice is great.
PSA now .047.
Not that big of a deal really but the trend is upward.
Mulling around the idea of: radiation, doing nothing (watchful waiting -sounds so serne and nothing could be further from the truth (haha)), or intermittent hormone therapy.
Ordered 'the new prostate cancer nutrition book' by Dr. Snuffy Myers. Started the recommendations 6 weeks ago plus the supplements which Snuffy suggests in videos found on youtube. It is fairly simple but pretty wide ranging. Give up all animal fats except for oily fishes. No red meat at all, beef, pork, lamb. Keeping down the omega 6/3 ratio. Most people these days are 20-30:1 6/3 omega fats. Its amazing how many foods have omega 6. Means giving up dairy too, well the ones with fats which is mostly everything lol.
Anyway I feel so much better on this diet, calm and relaxed. 100 percent compliant, don't break it for anything.
The supplements are reservatrol, pomegranate, curcumin and vitamin d3. Can use the pomegranate juice instead I opted for the capsules and do buy fresh ones from time to time.
Oncologist isn't too worried, says I have time. Urologist is more worried says I should do radiation at .050 and at .047 I'm just splitting hairs.
Still having problems with leakage and would like to heal more before radiation if i go that route.
Really don't like the idea of just letting things go and doing no treatment. Have read enough to know where that leads especially when i'm only 52 and a Gleason of 8 with margins positive, invasions and epe.
Erections are completely possible now and are getting better so I am very reluctant to do radiation. I like what Dr. Snuffy Myers does but am finding not much support for that type of treatment so far here in Canada. I continue my search for a Dr. willing. But current oncologist warns that 8-10 Gleasons tend not to be that responsive to hormone therapy for long.
Overall this weekend I turned the corner and seem to have shaken off all the previous lethargy and shakiness from operation and hormone therapy. I feel myself again. Strong and decisive, in complete control of emotions. It is a difficult decision to go backwards and give that up, going on hormone therapy again.
Another PSA test 35 days from now and urologist 7 days after that. Then 6 months from now oncologist appointment.
I change my mind from doing nothing to hormone therapy to radiation daily and sometimes every hour. That's just the way it goes I think until the process has started. I was the same right up to the day and hour of operation, not sure I was doing the right thing.
The problem is that doctors can't say which way to go only that a doctor of radiation will obviously want to practice his trade as does a doctor of surgery or a doctor of medicine. Leaves us patients/laymen rather twisting in the wind. And I know its not the doctors its the nature of the disease which is very unpredictable from man to man.
Good luck to you all and Merry Christmas/Happy Holidays.
Mark's e-mail address is: firstname.lastname@example.org