YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

BRONZE

Pat B and Louise live in New York, USA. He was 62 when he was diagnosed on December 15, 2009. His initial PSA was 4.7 ng/ml, his Gleason Score was 3+3=6 and he was staged. He is undecided as to his choice of treatment. Here is his story.


I have been having some increased urgency of urination for a number of years (3-4) maybe, but it was not bothersome enough to think of taking Flomax (not a fan of medication, and have been dealing with it by daily practicing Kegel exercises). Have had regular GP and Uro visits over the years including DRE (Digital Rectal Examination) and PSA tests with no indication of anything out of the ordinary - details follow.

Because of a 1.53 increase to 4.5 in PSA in February 2009 since my last test 3 years before, I was advised to retest and did so on November 9, 2009 which had a count of 4.7, and was advised to have a biopsy which was done this week on December 14, 2009.

I received a diagnosis of prostate cancer found. The biopsy showed 3 of 12 cores, all with a 3+3 Gleason score having "adenocarcinoma" in 10%, 80% and 90% of the tissue in the cores. The above cores were from the left mid, right base, and left apex respectively. The remaining core samples were benign, located as follows: Left base -2, left mid -3, Right mid -4, right apex -1.

I had an ultrasound done at the same time. I have had a CAT scan, with and without contrast on December 18, 2009, and await the results of that and more discussion of the diagnosis and staging when my wife and I have a consult with my urologist on this coming Wednesday December 23, 2009.

All my DREs over the years have been unremarkable, including the latest on November 9, 2009, and the ultrasound on December 14, 2009 immediately before the biopsy also "looked fine" per the urologist during the procedure. The size was measured at 33 gm and the density, calculated as size over latest PSA of 4.7 was 0.14, below (good) the "normal" cut-off of 0.15.

Free PSA was taken on that reading on 11/9/09 of 0.6, or 13% (0.6/4.7), below (bad) the "normal" cut-off of 25%. My urologist said that that free PSA reading, along with the 4.7 level at November 9, 2009, were the reasons for doing the biopsy on December 14, 2009.

I have been doing PSA level checkups since 1997, from age 50, and they are as follows, with the Velocity Increase (VI) calculated following each retest - which I am only calculating now as a result of all this - the "normal" cut-off being .75 per year - anything under that is good, I'm told:

January 15, 1997 - 1.70
June 9, 1999 - 1.80 = VI p/a negligible
July 18, 2001 - 1.70 = VI p/a N/A
June 11, 2002 - 2.80 = VI p/a of .65
December 29 2004 - 2.89 = VI p/a negligible
January 30, 2006 - 2.97 = VI p/a negligible
February 11, 2009 - 4.50 = VI p/a .17
November 9, 2009 - 4.70 = VI p/a .03

So the velocity increase in my PSAs has been very low indeed.

I am very glad that I found this site, with all its resources and links, and especially with all the wonderful men sharing their experiences and thoughts and feelings about treatment options and results. I will continue to update the site with progress.

If anyone has insights to offer after reading this short, possibly premature and partial history, they would be very much appreciated. I am especially interested in any information about the importance of PSA density, volume increase p/a, free PSA%, and actual PSA level, as indicators of how actively growing the cancer cells may be. Of course, that formula could probably make someone a wealthy person! I guess a lot will depend on whether the CAT scan can determine that it is still contained within the walnut!

Thanks for being here, everyone!

Pat B

 

UPDATED

January 2010

 

 

Update as of January 3, 2010. Happy and healthy New Year everybody!

Subsequent test results:

CT scan of abdomen and pelvis, with and without IV contrast: Overall completely clean. Lungs, liver, spleen, pancreas, kidneys, bladder and bowel (as much as possible for the bowel without oral contrast--otherwise known as a radioactive smoothie!) were all unremarkable, normal, symmetrical, no evidences of masses, lesions, etc! Prostate quote: "Heterogeneous prostate gland--no evidence of metastatic disease". Other quote: "No significant pelvic or retroperitoneal lymphadenopathy" "Evaluation of the osseous structures demonstrates no suspicious appearing lytic or sclerotic lesions". Yeah!

On reading the biopsy report, one of the frustrating things about it is that it leaves to speculation any calculation of the totality of the disease and disease free samples. For example, there were 4 cores taken in the left mid of the prostate, and 1 of those cores had 10% adenocarcinoma. But the shorthand discription of the cores states that there were 4 cores measuring from 0.4cm to 2.2cm in length, so we know that 1 measured 4mm and 1 measured 22mm. But it's anybody's guess as to what the other two measured! And there is no indication which of the cores had 10% diseased tissue, so there is no way to total the diseased or benign tissue or to calculate the % of cancer tissue in the total of the samples. My Uro says just to estimate that each core that wasn't mentioned was about 1cm in length. But in just these 4 samples, the length varied from 0.4 to 2.2cm. And other cores taken were 0.4,0.5,0.7,0.9,1.4 etc. So go figure! I was an accountant in my first career, and I can't!

My Uro, who has treated me for over 10 years, is a robotic surgeon, and we had an hour's consultation with him to discuss the biopsy results, and our options. His recommendation, notwithstanding the gleason of 3+3, very low velocity over 12 years of PSAs varying from 2+ to 4+, unremarkable DREs, clear ultrasound and CT scan was to remove my prostate using robotic surgery that he would perform.

We have scheduled a consultation for Monday the 11th January with the oncologist who is the director of the prostate cancer program at the Abramson Cancer Center at the Hospital of the University of Pennsylvania in Philadelphia, where Louise has many medical contacts through her work in hospital administration.

We are trying to get as unbiased and patient-interested assessment of the risks and benefits of whatever options are open to us, including active surveillance.

I'll keep you posted as we progress.

Patrick.

 

UPDATED

February 2010

 

 

In January we had a consult with an Oncologist who is the Director of the Prostate Cancer Center at the Hospital of the University of Pennsylvania (HUP), who had her pathologist reread the biopsy slides, and his opinion was that two out of the three cores had a Gleason 3+4=7 score, whereas the original report had all three cores as a 6. Of course they read the density as 40%, 40%, 70%, whereas the first pathologist said they were 10%, 80% and 90%. So we really have to realize that these readings are opinions, not absolute fact. Be that as it may, she recommended strongly that I have surgery, as the disease seemed more aggressive, and was in three different regions of the prostate, ruling out radiation because of adequate targeting limitations (not that I ever would consider any form of radiation therapy, because of the gradually increasing long term effects on neighbouring tissue---sorry RT guys!)

Then I saw two internists that I trust, one in Philly and one in NY who I have been seeing for 30 years and really respect, and both said that I should have surgery. My NY internist said that he really shouldn't be divulging personal info to me as a patient, but as he'd known and treated me for so long, he shared that he had been diagnosed two years earlier, and had robotic surgery. He said he's "pissing like a young man again" and his erectile function is very satisfactory. More on that later.

I asked him if he would mind sharing his diagnosis with me, and he said he had Stage1NoMo, with a Gleason 6 score on cancer tissue that was 5% in one core of twelve from his biopsy! So I said, "And you still had it out?" He said yes, and you should definitely too. By the way, he is 70+, yet still a vibrant, practicing doctor. When I told him that I was seriously considering active surveillance, and continuing the lifestyle changes I had already made, he cautioned that I now had OCD (organ contained, not obsessive compulsive, disease---although sometimes I wonder, with respect to this whole issue!) and if the cancer perforated the prostate wall in between my 3-6 monthly PSA tests, then "the horse is out of the barn" so to speak, and then surgery would involve taking all the nerves as well, and radiation as well, so then all the side effects I was trying to avoid by not having surgery would come back as my permanent, irreversible companions.

My wonderful wife and family, while very supportive, were all concerned about my considering active surveillance, and I was suddenly conscious of a major shift in my gut that surgery was the way to go for me, and robotic because of the better recovery time. Also, we were highly recommended to a Dr. Lee in Philly who does multiple operations two days a week and is third in the country in the amount he does. We met with him and his team, spoke to recent patients, and have decided to have him do the surgery on March 8.

Once the decision was made, I can attest that the worst part of this experience so far felt like it was over.

Now, on to dealing with side effects I can expect after the operation.

As many of you have had, I experienced urinary urgency and frequency, but not pain or reduced or intermittent flow over the past few years, and instead of doing drugs like Flomax, I decided to address it by doing Kegel exercises on a regular basis, 10 each day, contracting for 10 seconds each time. So I was familiar with them, and was advised by Dr. Lee's staff to increase that to 60 per day, 20 at a time, three times a day as follows: Morning - standing, 10 for 10 seconds each with a 10 second rest in between, and afterwards, 10 short contractions of about a second's duration each. Repeat in a sitting position at midday, and in a prone, lying position at bedtime.

So, hopefully, that will go a long way to addressing the incontinence issue. We shall see!

As far as ED is concerned, Dr. Lee, and the literature, stated that it could take from 12 to 24 months to regain erections satisfactory enough for intercourse if there was nerve sparing available at the time of surgery and depending on the use of Viagra and the like, and also, depending on how active sexually one has been prior to surgery. Thankfully, I have been pretty active sexually with my wife, as well as solo in her weekly absences in Philly while I am alone in NY. I had purchased a book at the beginning of this saga, which I had hoped never to need, if I had opted to conduct active surveillance as my therapy, called "Saving Your Sex Life --- a Guide for Men with Prostate Cancer" by Dr. John P. Mulhall, Director of the Sexual and Reproductive Medicine Program of the Division of Urology at Memorial Sloan-Kettering Cancer Center in Manhattan, NY.

It really opened my eyes to what could, and should be done by any man with PCa and surgery or radiation or other treatment. It has a lot to do with preserving the integrity of the penile tissues, penile rehabilitation after treatment, and how to go about that after, and even to some extent before treatment. Apart from nerve sparing, it is all about the "use it or lose it" philosophy. I would urge every man concerned about this, and facing or having had PCa treatment to get and devour this book, as I did, in two days!

After inquiry of my surgeon's staff, while they are excellent at what they do, they did not have the focus or experienced sexually oriented doctors, other than the take Viagra, maybe we'll give you a pump if you want recommendations. There is a lot more to be done, mainly to find ways to get erections as much as possible, not solely for sexual relations, but to oxygenate and preserve penile erectile tissue. I was fortunate enough to get an appointment with Dr. Mulhall at MSKCC prior to my surgery on March 8. So we shall see, but I'm definitely in it to win it back!

God bless you all, and good luck to everyone.

PatB

 

Pat's e-mail address is: mbjapb@gmail.com