YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

EXPERIENCES : DISCUSSION FORUM : FOR THE WOMENFOLK : ABOUT US : UPDATE YOUR STORY : MAIL US : DONATIONS

YANANOW HOME PAGE : DON'T PANIC : GOOD NEWS! : DIAGNOSIS : SURVIVING : TREATMENT CHOICES : RESOURCES

BRONZE

Gleason Nine and A live in Florida, USA. He was 66 when he was diagnosed on November 20, 2006. His initial PSA was 6.5 ng/ml, his Gleason Score was 7 and he was staged T2a. His choice of treatment was Robotic Laparoscopic. Here is his story.

 THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2010 SO THERE IS NO UPDATE.

Elevated PSA at annual exam in October 2006. Followed up with visit to urologist and DRE. This led to biopsy which was initially diagnosed on November 20, 2006 as T2a and Gleason 7.

Laparoscopic surgery performed in January 2007. Pathology report came back as Gleason 9, with cancer extensive in both lobes, but contained within capsule, negative margins, negative lymph nodes, negative seminal vesicles.

Discharged from hospital next day. Healing from several small laparoscopic incisions proceeded rapidly and without complications.

Catheter removed after six days. Initial mild incontinence, but has continued to improve so that today I would consider myself 95% to where I was pre-op. ED (Erectile Dysfunction), on the other hand, is total in spite of Viagra. I have chosen not to try injections, etc., but simply wait for improvement over time.

Offered clinical trial of double blind randomized study of ADT (Androgen Deprivation Therapy) or Chemotherapy or nothing. Chose to opt out of trial and just do nothing but monitor.

PSA reading at six weeks (late February 2007) was undetectable at < 0.01. Similar reading at three months (April 2007) and again undetectable at six months (July 2007). Follow up visit and PSA test scheduled for 12 months (January 2008)

Changed diet to be more healthy and started doing more exercise to stay in shape. Otherwise just monitoring and keeping fingers crossed, waiting for other shoe to drop.

 

UPDATED

August 2007

 

 

I just wanted to provide a bit more detail about my diagnosis and decision for robotic laparoscopic surgery. There were two mistakes I made which might be useful for others trying to decide.

First of all, at my routine physical in October 2006, my internist told me that the PSA was a bit elevated at 6.5. It turns out that my previous PSA 30 months earlier with a reading of 2.3. I had a number of blood tests taken in the interim, but none of them were for PSA. My doctor was focused on cholesterol and that was all he tested for (which I now believe was a mistake). I now tell everyone I know to include PSA testing anytime you take a blood test for anything.

Also, at one point during this 30 month PSA hiatus, I had the impression that perhaps my testosterone level might not be up to normal. The doctor took a blood test for testosterone (again no PSA test) and found my level to be low, but within normal limits. Nonetheless, he prescribed testosterone patches, which I applied. Again, I had no idea that testosterone might have an impact on Pca and neither my doctor nor I considered monitoring PSA before, during, or after applying the patches.

In any event, in October 2006, the internist told me that the PSA was 6.5, but that the DRE he performed (he is not a urologist) was not giving him any idea that there might be tumor or a sense of urgency, and he suggested a six-month wait, and a re-test. When I came home and told my wife of all of this, she wisely said we are not going to wait six months. So I made an appointment with my urologist.

The urologist performed a DRE and immediately came back and said he felt suspicious bumps and wanted to do a biopsy. The biopsy came back positive and we scheduled a long visit to discuss options. My urologist basically recommended open surgery. When I asked him about robotic laparoscopic, he was not that familiar with it and tried to convince me that this was too experimental, that a cure was more certain using the traditional open surgery approach (his approach!). I have a great deal of respect for this urologist, but I decided to go with a surgeon with a great deal of experience with the DaVinci robotic method. It is now so clear to me that the older urologists who have no experience with DaVinci are against it because they do not want to go back and start a steep learning curve for a new technique.

Anyway, after surgery, which proceeded with absolutely no complications, I received the pathology report that the cancer was into the capsule but did not penetrate through the capsule, the margins were clean, and there was no evidence of spread in the lymph nodes and seminal vesicles (all removed). That was the good news. The bad news was that the cancer was pervasive in both lobes and was of an aggressive Gleason 9 (4+5).

At six weeks, when my PSA came back undetectable (<0.01), I consulted with an oncologist who told me that based on the pathology the probability of recurrence was in the order of 50%. He explained to me that he was not able to tell me whether anything I could do right now would increase or decrease that probability. In fact, he wanted me to volunteer for a trial to answer just that question, i.e., what is the best course of post-op treatment for a successful radical with clean margins but high Gleason? The trial involved a blind random choice of 1) Taxotere; 2) ADT; or 3) do nothing. To participate in the trial, you subject yourself to a random selection of one of the three choices. I opted not to join the trial (in effect I chose option 3, above). I reasoned that Taxotere and ADT had negative side effects and there was no certainty that they would help me at this point. Why undergo negative side effects for no certain benefit? I could always opt for those choices if and when
the 50% chance of recurrence should rear its head. I chose to hope for the 50% chance that there would be no recurrence.

So that is where I am now. I am 7 months post-op and I continue to test PSA undetectable. My next PSA test is scheduled for one-year anniversary in January 2008. I will post again then, or sooner if there is something to report.

 

UPDATED

October 2007

 

I had a recent PSA test which came back <.02. At first I thought that this was a doubling from my last report of <.01, but I have since learned that the more recent test was done at a different lab with a less sensitive testing method.

So far so good, still undetectable PSA.

I would be happy to share my experience with anyone who is interested. Contact me at my email

 

UPDATED

December 2008

 

 

I take an ultra-sensitive PSA test every three or four months and so far the results come back essentially zero (<0.01). I maintain a healthy diet and exercise regime and I feel great.

Continence is at 100%, but ED is still a problem. The grading of Gleason 9 still is worrisome, and I am kind of waiting for the other shoe to drop, but so far so good. It is almost two years since my robotic surgery which was in January 2007.