Ok. I posted all of this once and it disappeared. My error, I’m certain.
Here is my husband’s story.
Age 50..2003. Radical Prostatectomy. Gleason 4+3.Negative lymph nodes and margins.
2006.. PSA. 2.08.. Two needle biopsies Negative. Prostascint Imaging . No evidence of locally recurrent disease within the prostate bed or adjacent nodal beds. No evidence of distal metastatic prostate ca.
March 2006. Received Salvage Radiation Therapy to 6480 cGy in 36 fractions to prostate bed. Siteman Cancer Center Washington University St. Louis.
Psa’s Started to rise ..
2007..0.17;;2008-0.2;;2009-0.2::2010-0.2;;2011-0.8;;2013-1.2;;2014-1.9;;2015-2.2;;2016-3.5;; March,2017-6.1;;May, 2017-6.1;;Oct. 23, 2017..7.8.
Followed by Dr. Mi, who was not concerned about
continual rise, stating doubling time was long. 12/5/2017 Bone Scan..negative
CT Abdomen and Pelvis...1.6cmx1.7 cm nodularity along right internal iliac lymph month delay in care, due to “ lost records.”
Michalski delayed treatment, stating radiation treatment records from 2006 had been lost.
Husband received Lupron 3 month shot on 12.15. 2017 and began 30 day regimen of Casodex.
Michalski proposed 28 sessions of external beam rad to lymph nodes and pelvic area. Stated it was with curative intent. Husband told him that he did not wish to go through more radiation, given all of his current problems. Michalski said , “ There won’t be any problems. The only problem we sometimes see..is..bowel obstructions. And we can take care of that.” ( I have been a RN now for 40 years. Ok. And my husband had a ruptured diverticulitae in 2000, requiring colon resection, temporary colostomy then reconnection.) Informed Dr. M. We are seeking 2nd opinion. Not met with our expected professionalism.
Husband was Seen March 6, 2018 at Johns Hopkins by. Dr. EA, MEdical Oncologist.
Stated likelihood of radiation being curative <10%. Stated “ No RO here would order that.”
Husband has 3 pad a day incontinence,frequency. Severe problems with adhesions and bowel issues from radiation. Severe erectile dysfunction, not amenable to any pharmaceutical interventions.
Antonarakis spoke at length about
genetics. Husband’s father and uncle both had PC . Age 60’s but no recurrence after RP. Husband’s brother and 2 first cousins had PC in early 50’s. Both had RP. No recurrence.
Antonarakis ordered COLOR test and stated a tumor dna analysis would be attempted.
The slides from his 2003 RP were analyzed here at JH and he states reclassified as 3+4.
Antonarakis plan of care: Husband to receive Lupron 3 month dose on 4/17 at Siteman.
Michalski at Siteman declined our request for a MO.( Our insurance does not require it. As a professional courtesy, I asked him.) He did not offer my husband the opportunity to have advanced PET scan, despite our desire to pay for it. Michalski said no need for MO and plan was Lupron for 2 years.
Antonarakis said, “ that is ridiculous. We hate anti-androgens.” Went on to specify all potential complications. His plan is to stop Lupron in June and watch PSA. Do PSMA scan when levels rise.
PSA is 0.1 now.
Also stated, “ Johns Hopkins hates chemo.” He spoke with us for 95 minutes.
“My hope is that there will be a clinical trial for you next summer.”
Wants to see us in 6 weeks to review genetic test results. And meet with geneticist, if indicated.
Said majority of men at his advanced stage die within 5 years.
“Try to find an oncologist in St. Louis who will work with Johns Hopkins protocol.”
Frankly, I was stunned when we left. Has taken me 24 hours to assimilate this into my consciousness. I still can’t formulate it into words, to tell our children. We are hiding out here in our hotel in downtown Baltimore.
Post Edited (GaryGwifeRN) : 3/11/2018 6:36:36 PM (GMT-6)