My husband has given me his blessing to post on this site in hopes of being a source of support for others in our position.
Jeff's father died of prostate cancer at the age of 51. His father's presenting symptom was lower back pain which unfortunately turned out to be bone metastases from prostate cancer. This was the only family member known to have this type of cancer. After two years Jeff's father passed.
Jeff has been having DRE's and screening PSA's since the age of 40 due to his father's history. The PSA's had remained in the "normal" range, rising slowly over time. The last PSA he had, while still in the "normal" range had risen a great deal over the past year. Jeff's family doctor was not concerned given his normal DRE, but I (Pam) could not accept that answer. I read everything I could find on PSA screening and found a very good source on PSA velocity, or rise over time. Jeff had a very abnormal velocity of greater than 0.75ng/ml so I pressed for a referral to a urologist.
We met with the urologist and he immediately wanted to do a biopsy. The biopsy showed 2 positive cores 3+3 and 3+4. The urologist discussed the options with us and after much thought and investigation we chose the robotic radical prostatectomy.
Jeff had surgery on June 19, 2007. The surgery went well and Jeff was discharged after two and a half days in the hospital. He went home with a JP drain and a urinary catheter. The JP came out two days later. The urinary catheter came out three weeks later. The first cystogram at two weeks showed a small area of leak. After another week the cystogram follow up was great and the catheter was removed. Jeff has not had any incontinence issues at all! He is able to stop his urinary stream at will and has not found a need for pads. We are so pleased and I am just so happy for him.
The urologist then started Jeff on Cialis for ED. Jeff had been getting nocturnal erections with the catheter in (a somewhat painful but at the same time welcome event) and so we were optimistic that he would not have a big issue with ED. The first dose of Cialis 20 mg was very successful! Unfortunately the side effects, mostly headache and penile achiness are troublesome. Jeff will try 10 mg next time and see if results are the same without the side effects. We feel blessed to that the major side effects of the surgery are not a problem so far for Jeff.
The post operative pathology was not what we expected. While the biopsy showed tumor only on the left, the path report after surgery showed tumor on both sides. On the right the tumor abuts the prostatic capsule at the surgical line. There was not extra prostatic tissue to be sure that the cancer had not spread outside the prostate so the cancer was staged at T3NOMX. There is a chance that the tumor did not actually extend through the capsule, it just cannot be proven. Given this the pathologist was obligated to give it a stage 3. We are disappointed but understand the reasoning. This does not change the surveillance that Jeff will have. He will get PSA's every 3 months, beginning 4-6 weeks after surgery. We are currently waiting to get the first PSA done. We are so anxious about this but will handle whatever comes our way.
We have two boys age 9 and 11 and our goal is to provide them a normal childhood and keep their Dad healthy. If there are any other families with young children going through this we would love to talk with you. I will update when we get Jeff's first PSA. Bless all of you that are going through this journey.
Jeff's first follow up PSA was undetectable approximately 8 weeks post operative. He will continue to have that followed every three months for an undetermined period of time.
Jeff still has no issues with incontinence and is back doing everything he has always enjoyed. The ED issue is present but not to a full degree. He takes Cialis 2 times per week and can get acceptable results from that. It is not the same as pre operative but we are hopeful for improvement with time.
I will update again with the next PSA.
Jeff's PSA is still undectecable more than a year post surgery.
Incontinence is not and really never has been a problem.
ED is improved. Jeff can have acceptable erections on his own but sometimes requires the help of cialis or viagra. Overall though the ED is improved.
We welcome any emails or phone calls from those seeking information or direction especially if you are from northern Colorado.
It has been 18 months since Jeff's surgery and we are delighted to announce that his PSA is still undetectable. Jeff continues to get PSA's checked every 6 months. We are looking forward to the 4 year mark when statistically the chance of recurrent cancer drops off dramatically.
Jeff is in great health and enjoying all life has to offer. He continues with mild ED issues that are treatable with Viagra. We know how blessed we are to have the outcome that we have thus far.
We have completely enjoyed being a mentor to others through YANANOW and hope that those going through this process will seek support from the mentors at YANANOW.
Last PSA still undetectable, no medications, no incontinence, ED better not needing medication anymore. Overall everything is positive.
Next appointment for a PSA check will be about September we are excited to reach the 4 year mark which will be June 2011.
Jeff has his four year follow up appointment on July 12, 2011 so will update after that appointment which will yield his latest PSA and other information.
Later: Jeff had his four year post surgery follow up appointment on July 13, 2011. He had a PSA test about 10 days prior. The PSA test read 0.03 which was a change from previous readings of <0.01. Naturally we were panic stricken thinking there was a small elevation in his always undetectable PSA.
Here is the lesson we learned: The lab that Jeff has always had his PSA drawn at changed their procedure so that now the lowest they can report is 0.03. We went through horrible emotions and fear as we did not know of this change. The urologist had just recently become aware of the change, he had been spending much time calming all his prostate cancer patients down who all of the sudden had a rise in their baseline PSA's.
We find this practice unacceptable and will be pursuing a complaint with the hospital lab. A little communication could have gone a long way in preventing us from having to think that Jeff's cancer had reoccured.
The good news is that he is well, the PSA is read as essentially still undetectable. We have another appointment in six months at which time the lab is to have changed their procedure to a better reporting system under the guidance of our urologist.
We will post an update at that time.
We are pleased to announce that Jeff continues to have undetectable PSA results 5 years after robotic assisted laparoscopic prostatectomy. He is free of all side effects with the exception of mild ED that is easily treated with oral medications. Jeff continues to live a very active life. In September, Jeff will have outlived his father who passed away from prostate cancer at the age of 51. We are blessed to be able to watch our boys grow and become young men and are looking forward to a healthy and long future together. Jeff has yearly checkups now and while the yearly PSA check is anxiety producing we are confident at this point that the odds are with us that the reports will continue to be favorable.
Pam (Jeff's wife)
Surgery was in 2007 and now 6 years later PSA remains undetectable.
Jeff continues to be cancer free 8 years post surgery!
Pam (Jeff's wife)
Hi, This is Jeff's wife Pam. Over 9 years post surgery and Jeff is still cancer free! Our boys have grown and are thriving adults. Jeff is still working full time and skiing every weekend all winter long! We continue to be grateful for such an amazing outcome so far!
Jeff's e-mail address is: firstname.lastname@example.org