BenEcho10 Journal

I found this web site a few days ago. Although I had never been to a chat room before, I had recently been searching the internet for a chat room hoping to get more detailed information on some of the PC related issues that I was facing. I found several other mediocre chat rooms before lucking into this one purely by chance. It was exactly what I was looking for. 

I started another thread in this chat room on a specific issue that I have wrestled with and I have also communicated on several other people's "topic" related threads. I see that many others have started their own "personal" threads which gives a place to update the community on your progress. I have decided to do the same thing here. I am looking at this thread as a kind of a journal of what I have been through and am now going through. I will try to periodically update it. Just talking about this stuff sure helps me get through all this. Maybe reading about (or discussing) some of my  statistics and problems will help others as well. Let me know if you have questions or issues that I can help with. Others have been very helpful to me and I hope that I can "pay it forward."  

Personal information:  

• AGE 49: I turned 49 in 08/06.
• MARRIED: 20 YEARS. My wife is wonderful and tremendously supportive. I don't know how I would have gotten through all this without her.
• CHILDREN: We have two wonderful daughters ages 13 and 15. They are scared but handling my cancer surprisingly well.

Here is my PC history:

• PHYSICAL EXAM / DRE / PSA: 09/19/06: During a routine physical exam, my GP did a DRE and felt firmness on the right side of my prostate. He did a PSA which came back 4.6. He quickly referred me to a local urologist.
• UROLOGIST #1: 09/21/06: I saw the local urologist who did another PSA which came back 4.2 and a free PSA which came back 2%. On the internet that evening, I learned that the 2% free PSA made it very likely that I had cancer. That was pretty much the moment that I was pretty sure that I had cancer.
• BIOPSY: 09/25/06: I had a TRUS (trans rectal ultra sound.) It was uncomfortable but not very painful. The biopsy results came back positive for cancer on the right side with a Gleason of 4+4=8. When I read on the internet that a high Gleason like this indicates a more aggressive, faster growing cancer, I was stunned. My father died of intestinal (colon??) cancer in 1971 when he was 46 and I was 13. That is the same age as my youngest daughter.
• PET SCAN: To check if the cancer had spread, Urologist #1 ordered a CT/PET scan. The PET scan was negative for any spread of cancer. I have subsequently been told that a PET scan was not a good thing to do for PC and a bone scan should have been done instead. In fact, my insurance even refused to pay for the PET scan.
• CONSULT: We met with Urologist #1. He said that my cancer had been caught early and that it was stage T2a (all contained in the prostate) so it was highly curable. He reviewed the varous treatment options. He did not make a big deal about my high Gleason Score. I learned about that on my own.
• RESEARCH: Once the shock wore off (or at least became managable) my wife and I did massive internet research, spoke to friends/family/church members who had fought PC, and read Dr. Patrick Walsh's book (which I highly recommend.) We ultimately decided upon surgery, largely due to the fact that it offered the possibility of a total cure as long as the cancer was completely contained within the prostate gland. We live in a small town and decided to seek a top doctor at a major medical center who had done hundreds of surgeries rather than stick with Urologist #1. After further research we settled upon a doctor at Johns Hopkins in Baltimore. This is halfway across the country from our home but I grew up only an hour from Baltimore and have family nearby. A big factor in my choice of Johns Hopkins was my desire to get the best possible outcome in terms of incontinence and impotence. Johns Hopkins has a top reputation for minimal side effects (in the long term - everyone gets them in the short term.)
• CONSULT: 10/04/06: We met with my surgeon at Johns Hopkins. We had a long list of questions and he answered them. He also stunned us by telling us that it was a big error for Urologist #1 to have put me on Casodex since this had shrunk the prostate which would make it much more difficult to see during surgery and thus more difficult to spare the erectile nerves. Johns Hopkins did a second review of my biopsy and re-graded it as Gleason 10. We were again stunned by my bad luck. As if an 8 Gleason Score weren't bad enough, now I was a 10. I haven't even spoken to anyone else who has a Gleason 10. We were even afraid that we would be told not to do the surgery (Dr. Walsh's book discusses that possiblity) due to such a high Gleason Score. Fortunately no such issue was raised. We elected to use the open Radical Retropubic Prostatectomy procedure rather than the robotic / laproscopic procedure for several reasons. First, and most important, this is the technique that my chosen surgeon was most expert at. Another major factor was that, with my high Gleaon score, we wanted the surgeon to get the best possible vision and feel of my cancer so that he could get it all out. Finally, the robotic surgery had the feel of being "too new" and I wanted to stick with the more established tried and true technique. From what I have read in this chat room, I no longer have that concern and the robotic surgery sounds like a good option to consider. However, if you elect the robotic surgery, make sure that your surgeon has done a lot of them. Many surgeons are just learning this technique since it is relatively new. You don't want to be one the first patients while your surgeon is learning a new technique.
• SURGERY: 11/08/06: We flew to Baltimore two days before the surgery and stayed six days after to reduce the rigors of flying home. The surgery went well although the doctor said that he could not tell if the nerves had been spared which was a big concern of mine. 
• RECOVERY PART 1: My surgery was Wednesday morning. I was walking very short distances Thursday around noon and was released from the hospital Thursday around 4:00 pm (30 hours after my surgery.) Thursday evening, back in my hotel room, I had considerable intestinal discomfort. I think that this was just from the bowels restarting / refilling. It was kind of like rumbling or gas but petty strong. This lasted about six hours. It was also medium painful to get in an out of bed due to the incision. That got better after about two days and was much better after about a week.
• PATHOLOGY: POSITIVE MARGINS: A week after my surgery, my surgeon called with the pathology on my prostate. It showed that the cancer had penetrated the capsule of the prostate and that I had positive margins. This meant that my surgical stage was raised to T3a. This was precisely what the Partin tables had predicted (given my PSA, clinical stage, and Gleason score) but it was still very frightening. I had the dreaded positive margins. The good news was that no cancer was found in my seminal vesicles or in my lymph nodes. Although the cancer had escaped the prostate it did not seem to have gone anywhere. I have read (in Dr. Patrick Walsh's book I think) that any cancer left behind might die due to the lack of a prostate gland to support it or it might have been killed from the trauma of the surgery. Here's hoping. Still, I have read some statistics in Dr. Walsh's book that due to my high Gleason and positive margins I have about a 50% chance of recurrence down the road. I will have that hanging over me for the rest of my life.
• CATHETER: 26 DAYS: The catheter was a big pain. It doesn't generally hurt but it is uncomfortable at times and it sure limits what you can do. I only left the house twice while I had the catheter in. Frankly, I just wasn't very comfortable being in public with a catheter bag hanging by my side. I was supposed to have the catheter out after 10 days but this was delayed to 26 days due to continued bleeding. It finally came out on 12/04/06. 
• RECOVERY PART 2: For the first 7-10 days ater surgery, I mostly just took it easy first in our Baltimore hotel and then back at home. A nice recliner is the best place to be. After the first 10 days, I was able to work at home sitting in my recliner using my notebook computer. I could work pretty much as long as I wanted each day as long as I mostly stayed in the recliner. I wasn't in much pain or tired. I returned to work at my office (I have an office job so I sit in a chair most of the day although I do get up and walk around our building quite a bit) after five weeks at home. The first week back, I was pretty tired and just worked half days. Since then, I have been back at work full time.
• RECOVERY PART 3: As I write this, I am about two months  post surgery. Other than one issue (bleeding) and two side effects, discussed below, I am feeling well. I am pretty much competely recovered from all the direct effects of the surgery (except some bleeding -  more on that below.) I am walking 1.5 miles daily. I have lost about 15 lbs (on purpose before the surgery.) I feel very good physically. I have some down days emotionally. I think that will get better if/when my side effects clear.
• BLEEDING: As mentioned above, I have had some bleeding from the surgery site. Of course, this happens to everyone for the first few weeks after the surgery but I think that I had more bleeding than normal and that it went on for longer. It mostly stopped about a month after the surgery although I continued to have a spot of blood on my pads one or two times daily for another month. Finally, two months after my surgery, I stopped my daily walks for two weeks and the bleeding stopped.  
• SIDE EFFECT #1: INCONTINENCE: After the catheter came out, I was incontinent. When lying in bed or sitting, I did not leak and I was was able to retain urine in my bladder. However, the moment that I stand up, my bladder empties. If I move quickly, I can reach the toilet before my bladder is completely empty and practice starting and stopping the stream which I can do pretty well. When I am up on my feet and walking I am constantly dripping urine and my bladder remains empty. I have been told that the fact that I can retain urine in my bladder while sitting and lying is a good sign. That is great but I remain very frustrated and disturbed by the lack of urine control. I am aware of this every moment of the day all day long. I am continuing to do kegels. Hopefully they will eventually help.
• UROLOGIST #2: 12/15/06: PSA 0.00: Due to the PET scan and Casodex errors, we decided to find another local urologist and got some referrals. On 12/15/06 we met with Urologist #2 and he did my first post surgery PSA which came back 0.00. So far so good.
• BONE SCAN: Urologist #2 also ordered a bone scan since one had never been done. It also came back negative. More good news.

That covers my diagnosis, surgery, and recovery for the first two months. More in subsequent postings.

Ben

FINISTERIDE: By the way, since this may be beneficial to others, I am going to take a quick moment talk about Finisteride. Finisteride in 1mg dose is called Propecia and is taken for hair loss. Finisteride in 5mg dose is called Proscar and is taken to help treat benign prostatic hyperplasia (BPH). Particularly in the higer 5mg dose, Finisteride can reduce your PSA by as much as 50%. I have read that if you take Proscar (not so sure about Propecia) you should double your PSA score. Although my current urologist assures me otherwise, I have wondered if my taking Propecia for the past six years has delayed the detection of my PC. I notice that my PSA has risen slowly to 3.8 about six years ago. When I started Propecia, it fell by 50% and then slowly rose again until it finally exceeded 4 for the first time in 09/06. I may just be second guessing here but this really leaps out at me now that I have learned so much and know what to look for. Also, at my age (early 40's then) a PSA of 3.8 should have triggered further testing. 20-20 hindsight.

Ben