3 Weeks After Testing Positive

robert1 said:

CK
I have been hearing more about CK and will now investigate further. Are there 2 or 3 places in the US offering CK that appear to be above the rest?

mrspjd said:

Of course
Robert,

Of course. Thx for asking. I hope you, too, will choose to share add’l info about your PCa journey in regard to some questions I’ve posed to you in another recent thread: http://csn.cancer.org/node/225435

The following is updated from previous posts: Once the shock and reality of PJD’s T3, intermediate/high risk, locally advanced, high volume PCa dx sank in, we each took a deep breath and exhaled slowly (it helped mitigate the stress and anxiety). Then, we began educating ourselves about PCa BEFORE considering or making any tx decisions—a daunting but mandatory task. We needed to know (as accurately as is clinically possible) the extent of cancer in order to evaluate which txs had the lowest rates of BCR (biochemical recurrence), with the fewest side effects, and the best long term successful outcomes for PJD’s stage of PCa.

For us, this process included: finding reputable PCa educational websites, and reading peer reviewed PCa medical papers/journals and books (one good starting place is http://www.prostate-cancer.org/pcricms/node/34); researching clinical study data related to txs for T3 PCa (one source is: http://www.ncbi.nlm.nih.gov/pubmed/); and, attending several different face to face PCa networking groups and personally talking with survivors. We obtained add’l diagnostic testing results to further & more accurately stage PJD’s cancer, including a 2nd opinion biopsy report from a respected pathology lab specializing in analyzing PCa specimens, a CT & bone scan, an E-MRI and a Color Doppler Ultrasound. We scheduled multiple 2nd opinion consults with skilled & experienced specialists in many different PCa tx modalities such as surgery (open & robotic), radiation (all forms), hormones (different drugs and tx time length protocols), and looked at combinations of primary txs. We also consulted with a PCa oncologist who we felt could offer an unbiased assessment of PJD’s case without having a stake in recommending one type of tx over another.

PJD’s stats when FIRST dx’d in Feb 2010 at age 67 were PSA 2.8 (no rapid doubling), G6, and PNI with 9 of 12 cores positive, many containing high percentages of cancer (aka high volume). We were initially told this was T2 stage. A 2nd opinion pathology report from Johns Hopkins lab downgraded (worse) the Gleason to 3+4=7 and confirmed PNI. While CT w/contrast and bone scan were both negative for distant mets, we arranged for add’l imaging tests, including an E-MRI (Tesla 3) and a Color Doppler Ultrasound. Both identified ECE (extra capsular extension) locally to one seminal vesicle. Clinical tumor staging was revised to T3, a higher risk level.

Although PJD was a candidate for surgery with no pre-existing health issues, he elected not to have surgery. We were advised there was a very high likelihood that negative margins would not be attainable from surgery. This same opinion was shared by several different skilled and experienced (open) surgeons at various medical institutions. With the high volume of cancer and greater risk for positive margins post op, as well as for a post-op rising PSA, adjuvant RT (and/or ADT) likely would have been necessary. This was a key factor in PJD’s decision not to have surgery. In other words, he reasoned: why risk all the potential side effects of RP if it, alone, wouldn’t have the best chance of being “curative” (i.e., successful outcome) and, then, why risk compounding potential RP side effects (such as incontinence and/or ED) as a result of Adjuvant RT, since ART or SRT may exacerbate RP side effects.

A close friend of ours opted for permanent seed Brachytherapy, aka, LDR-B (Low Dose Rate Brachy) about 8 years ago. His PCa clinical stage at time of dx was T2. The seeds implanted were Iodine 125 and his doctor was a well known, experienced and skilled RO (radiation oncologist). Several years later he began having problems voiding urine. After multiple related infections, bleeding complications that required hospitalizations, several cystoscopies and a failed TURP (transurethral resection of the prostate) using the Green Light Laser procedure which was supposed to open the urethra by clearing away obstructions & tissue, the urinary retention (different from incontinence) remains a problem and he has a catheter 24/7. Around the same time, our friend was also dx’d with a recurrence, including bone mets. He is now being tx’d with ADT and Xgeva. Our friend’s experience has had a big impact on us. In addition, the restrictions for a time period following LDR Brachy seed implantation (to avoid being in the presence of certain younger age groups who are more vulnerable to radiation exposure) due to the radioactive nature of the seeds, were unacceptable to PJD.

After eliminating surgery and LDR-Brachy/permanent seeds as tx options, we researched and narrowed down the choices, closely examining a combination of primary txs appropriate for T3 PCa. Those txs consisted of triple ADT/HT (Androgen Deprivation Therapy aka Hormone Therapy) to reduce and shrink tumor cell volume; HDR-B (High Dose Rate Brachytherapy--a temporary form of hypofractioned RT--to apply/deliver a high rate radiation dosing “boost” directly into the prostate gland & seminal vesicle; and, IG/IMRT (Image Guided/Intensity Modulated Radiation Therapy) to radiate the prostate bed and local lymph nodes. PJD elected this combination of primary treatments. He selected, and put his trust in, a team of specialists, each recognized as experts for their skill and experience in the tx modalities that he chose.

I need to emphasize that his tx choice was a highly personal decision which was compatible with his goals of being cancer free with the least amount of side effects (long & short term) while maintaining a high QoL (quality of life) and active lifestyle. Research indicated that when ADT and IMRT are used in a neo-adjuvant primary tx approach for T3 PCa, success rates of containment and PCa-free survival were comparable to that of RP alone. (Cancer/tumor volume is a critical factor to be considered here.) Also, recently published clinical studies have concluded that a short-course ADT protocol with IMRT (vs IMRT alone) improved survival rates in locally advanced cases.

Over ten years of study findings for HDR-B tx replicated and validated successful tx outcomes with solid evidence in the tx of intermediate-high risk PCa. Toxicity findings were generally unremarkable. For his stage of cancer, PJD felt HDR-B was the best option to deliver high rate RT dosing directly into the prostate gland and the seminal vesicle. He also believed it would be the most effective and precise way to tx the cancer, since the HDR-B delivery method applied the dosing directly, assuring the full dosing boost and eliminating the potential for missing the target due to any slight prostate movement (or seed migration as may occasionally be the case with LDR-B).

PJD’s HDR-B tx plan required only one overnight stay in the out-patient procedure wing of the medical center where he was tx’d. While a large hospital is attached to this medical institution, his tx did NOT involve a hospital stay or any “long hospital stays or multiple visits.”

The HDR-B and IG/IMRT txs were completed between Sept & Oct 2010. There were few temporary side effects, resolving after a several weeks. No residual toxicity to date. ADT3 was discontinued Jan 2011 after 9 months and was well tolerated. Lab work over the tx course showed a consistent and sharp drop in PSA, Testosterone and DHT. Post tx testing is ongoing and the most recent labs are in line with doctors’ expectations. PSA remains undetectable. It is anticipated that PSA readings will rise and fall within a limited range, ultimately reaching nadir over a period of time.

We are not naïve about the future. Have read and heard many success stories where “everything was done right” but PCa recurred. Unfortunately, this is sometimes the nature of such an insidious disease. IMO, until a "cure" is found, the good news is that new drugs and txs are emerging that will enable PCa recurrence to be treated as chronic disease, much like diabetes is treated today. We are cautiously optimistic and know things could have been worse...we will be forever grateful to the Urologist who found a nodule on DRE, performed the biopsy & dx’d PJD when other physicians missed it.

Long term successful tx outcome and PCa-free survival are the goals of every treatment and everyone on this forum, men and women alike. PJD is doing well, healthy and feeling fine. He has a positive attitude and a ‘glass half full’ philosophy about the future and life in general.

Robert, hope I’ve provided some add’l insight into our PCa journey. Regards to you as well.

mrs pjd