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Four year update

sfis
Posts: 15
Joined: Nov 2009

For those of you that have recently started down the prostate cancer journey, here is my update. I was diagnosed in September, 2009. My PSA was a little over 4, which by itself is not alarming. But I didn't have regular check-ups so my doctor didn't have a baseline to compare it to. He was concerned because the digital exam didn't feel right. The needle biopsy showed cancer in 3 of 10 needles, with Gleason scores of 3/4, 3/4 and 4/3. Surgery was recommended by two doctors and I had robotic surgery on October 26, 2009. I was out of the hospital the next day, had a catheter in for 10 days (maybe 2 weeks) and was out of work for a month. I have had my PSA checked every 6 months since surgery and it has been undetectable. So the biggest issues have been incontinance and impotence, neither is a big deal. I leak a little - very little and not very often. It is not really enough to be a concern. Sex is not a problem either. I have used both Viagra and Cialis, and both have worked well. The biggest drawback to Viagra is that you need to take it an hour before sex, so there is no spontaneity. I get both from a pharmacy in Canada (Polar Meds). The cost is about $4/pill for Viagra and $1/pill for 5 mg Cialis. They are both generic. If you want to ask any questions, respond to this post and I will answer. If the question is "Am I happy with the treatment that I chose?", the answer is yes.

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

Congrats on your four year anniversary. My four year is also this month but unfortuantely my PSA is rising very slowly and I will be starting IMRT radiation the end of August.

 

Keep getting those 0's

 

Lewvino

sfis
Posts: 15
Joined: Nov 2009

Thanks for your response. Would you share your initial diagnosis and course of treatment?

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

Be happy to. I was diagnosed with a Gleason 7 just over four years ago. My psa had climbed to around 5.3. They did find some type 5 cells though the majoriy were 4+3 giving me the seven.

After much research I chose my first line of treatment to be DaVinci surgery at Vanderbilt. After surgery there was a positive margin noted in the apex. We discussed starting radiation right away but decided to wait and see what would happen. Last October my PSA showed its first increase at .2. I was retested In Jan 2013 and showed .2 again. So we then waited six months and had the most recent PSA of .3. August is my four year anniversary. So now we have decided to use IMRT radiation to hopefully knock out this local recurrance. All signs point to local recurrance since their was the positive margin and all lymph nodes were clean.

I've been dry since the day the cath was removed and have had good sexual return using Levitra.

Lewvino

 

Bill91101
Posts: 33
Joined: Apr 2009

Congratulations on the 4 years!  But sorry to hear that you need further treatment.

I was first diagnosed with PC after a biopsy in April 2009.

I had a gleason of 7 and PSA of 89 at the time, along with blood in the urine and pain in the groin.  The cancer had spread to a lymph node so surgery was not an option.

My PSA has stayed at 0.1 for three years now.  I had Degarelix and Vantas treatments along with the IMRT.

I was given the 'max dose' of radiation for the IMRT treatments.  I underwent 42 treatments on a five day a week basis - this ended in August 2009.  I see the radiation oncologist every six months.  Everything looks very good.

The IMRT treatments weren't bad.  The radiation techs would get me laughing so hard I could barely stay still, but I managed.  :)

Had some irritation on my stomach that I used lotion on, but wasn't real bad from what I recall.  I think I had to refrain from eating certain things.

The most difficult part of the IMRT treatments was maintaining a full bladder while laying there for 10 - 15 minutes.  I HIGHLY RECOMMEND ENSURING THAT YOUR BLADDER IS FULL - I believe it protected my bladder, etc.  I've had little discomfort since the treatment.  I have a little irritation in the urethra and bladder, but nothing horrible.  Had some blood in my urine at one point a year after treatment. I was taking aspirin for neck pain at the time.  Once I stopped the aspirin the bleeding stopped (at least the visible stuff).  Had blood in the urine that the doctor could detect (but wasn't visible) for another year or so, but the last visit to the urologist (3 months ago) indicated NONE.

The urologist and the rad oncologist have both declared me a miracle of modern medicine.

Hope this information helps! 

 

 

 

 

Jadbalja
Posts: 6
Joined: Aug 2013

Hi,

I am glad that your outcome is satisfactory. I lift. I am 63, look 53. When this started for me I had 17and three quarter inch biceps etc. I am 5'7" weighed 210, 33" waist. Did sets of overhead presses with 150 lbs. Stess incontinence? What will my limitations be? Any info form your personal experiance will be appreciated. Looking at HIFU as an option to the DaVinci. Supposed to kill the tumor and leave the prostate. Might let me continue my life, but, HIFU has only been about 50% successful with high grade.

sfis
Posts: 15
Joined: Nov 2009

I'm afraid I can't tell you about any limitations if you go the DaVinci route. My incontinence is very minimal, and not related to stress.

yankeefan
Posts: 69
Joined: Mar 2013

I had surgery this past April, still have ed.....

sfis
Posts: 15
Joined: Nov 2009

I still use 5 mg Cialis daily, which works OK. I may go back to Viagra as it seems to give me a stronger erection. I haven't tried having sex without help for a while. Maybe I will give it a try. If I do, I will post the results in this thread.

sfis
Posts: 15
Joined: Nov 2009

Speaking of Cialis, you can get a free 30 day supply of 5 mg once per year. Finally got a blood draw - PSA remains undetectable!

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