I was given my diagnosis at 4:25pm today that I have PCa. My head is swimming and all I can think of is my 6 year old little girl and her future.
I'm not sure what to write, other than what I remember I was told.
12 samples, 2 positive, 10% each. Left side lower corner, and mid section just above it.
Gleason score of 6, which he said the majority of people have when diagnosed.
He does not expect that it has spread outside the gland. I think he said it was rated as moderately aggressive, but I an not sure as I was still trying to grasp the news.
The Doc said he was surprised to see the results as he thought I just had a normally elevated PSA. I'm glad I insisted on the biopsy even though PSA was steady.
My concern is he was surprised by the result, I hope there is no other surprise he is considering not likely.
I got the projection of 70-80% for long term survival, I take as meaning 15 years. This is really bothering me, as I said I have a 6 yo girl and plans for seeing her into her 30's or more.
some questions if anyone can help.
- How to select a surgeon?
- Could these other sensations I've had ("buzzing" or tingling, hotness, feeling of pulled muscle) in my groin indicators of disease more severe, or spread, than the test results show?
- Has anyone had a Gleason score under 5 or 6?
- Is the 70-80% for 15 years a known statistic or specific to my case?
Everyone here was very supportive with my questions before today. I appreciate it very much.
Hi D in SC...
I know exactly what you're going through. My stats were very similar to yours and I had the same exact thoughts as you. My kids were 13 and 10 at time of diagnosis. Please feel free to email me if you have any specific questions or concerns about
Regarding the 15 year limit, please note that these studies don't really go beyond 15 years . Advances in all types of treatments are such that most of those studies could be considered outdated anyway. Even the way of grading gleason scores has changed in the last ten years. Although I have the same exact concerns as you creeping in the back of mind all the time, it's pretty widely agreed upon that our disease, in most cases, is one that can be beaten quite easily. I do know many many people who had
open surgeries in the mid 90s who are still doing fine. And things have progressed so much since then.
I see that you seem to be inclined towards robotic surgery. Based on my experience witht he same procedure I can tell you it's a wise choice. You're too young to be messing around with this. Radiation, from what I was told by numerous specialists can have the same success rate, but as your Uro told you, you cannot have surgery as a back up if needed. Also, depending on your character you have to decide if you a) just want the compromised prostate out of you for good with hopes of confinement, and b) if you prefer a one day procedure with relatively minor recovery or a drawn out process over a few months. That's totally dependent on your personality. I just wanted to get the thing out, hope the pathology would be great and then worry about
recovery. In my case I was very fortunate and blessed by the skills of a great surgeon and had no issues at all with urinary control and within weeks was having sex. It's not the same exact thing as before, but considering how I felt before surgery I feel blessed by the outcome. I write this to you 5 months out of surgery.
Regarding surgery, if that is indeed what you select, I would say the following... you must seek out the best possible surgeon out there for you. The skill of your surgeon, along with your health and sexual health going into this surgery will determine how quickly you recover and to what extent you recover. This is a choice you will have to make. I turned down my guy who had performed 400 of these for a guy who has performed over 3000 and who is also an oncologist with experience in
open and laprosco surgery.
The surgery honestly is a very doable process, one in which we learn al lot about
ourselves. A week after surgery you will be driving around and if your work consists of desk work you will have the option of working. I can work from home so was on my computer working days after surgery. In all honesty the first 3-5 days I spent in bed, sitting and trying to walk as much as possible But after that, and certainly after the catheter was removed, I was almost back to normal or to my new normal at least.
It sucks to get this at our age. As great as things went for me I'm still mildly depressed abut it, very anxious and frankly, pissed off. There are great days and terrible days. In my case the ups and downs, probably caused by post traumatic stress are either very high or very low. When i'm "high" i see how lucky I am to have gotten through it and all is good, but every now and then thoughts like that 15 year max creep into my mind. Technically they're irrational thoughts, but you know how our minds can work. I have received some wonderful advice regarding this new aspect of our life from many here and I am sure you will as well. They tell me we adapt to the worry and 3-6 month PSA cycles and learn to love life even more than before without taking it for granted. Although this will surely take time, I can agree with many who claim it's a better way to look at life anyway in the long term.
Be very selective in the surgeon you choose if you indeed stick with the surgical option. You get one shot at this and you want the best there is out there even if you have to travel 100-200 miles.
I am available to discuss by email or phone if you want. You'll be okay, this is a very treatable disease.