DID NOT SEE CANCER COMING

September 21, 2023: after finding blood in my urine, my general practitioner arranged for a CT scan without contrast which indicated possible bladder cancer and hydronephrosis of the right kidney

September 22: A cystopic exam exam confirmed the a tumor in the bladder near the junction with the right ureter.   A surgery was scheduled but was delayed because the urologist was not in my insurance network.  I was then recommended to a urologist at the University of Tennessee Medical Center here in Knoxville

Oct 4:  I met with my urologist.   He was departing for longstanding vacation in Europe and recommended a colleague to perform surgery.

October 6:  A Transurethral Rescection of the Bladder Tumor (TURBT) surgery was performed.  It is an endoscopic procedure where the tumor in the bladder is "scraped" from the wall and samples removed for identifying the pathology.  The primary tumor was at the junction of the bladder and right ureter and was restricting flow from the right kidney.  A stent was placed in my right ureter.  Pathology confirmed that the cancer was muscle invasive urothelial carcinoma.

After reviewing standard of care options, I decided that I would focus on my treatment and recovery.   Being 65 would resign from my job effective Oct 31, apply for Social Security benefits and Medicare part B.  

Oct 18:  My urologist returned from vacation.  We discussed options - one of which was radical cystectomy (removal of bladder and likely nearby lymph nodes and potentially prostate and seminal vesicals) either preceded by or followed with a round of chemotherapy.   This is a current standard of care option for muscle invasive bladder cancer (MIBC) if it has not locally advanced or metstatic.  Imaging was scheduled for assessing spread/stage.  

Oct 26:  I met my medical oncologist.  The literature indicated that for muscle invasive bladder cancer which is not locally advanced or metastatic, surgery followed by radiation with neoadvujant chemotherapy has results equivalent to the the radical cystectomy.  This is referred to as trimodality therapy.  My oncologist agreed that this was a valid alternative.   Having led software development for proton therapy system - I knew that this was my radiation therapy modality of choice.  In Tennessee, reimbursement for proton therapy is limited - but can be approved by Medicare.  I wanted to consult with the local proton therapy facility before deciding on a course of action.  

Oct 30:  I had several imaging procedures:
    Lung CT Scan without contrast
    Pelvic CT with and without contrast
    Pelvic MR with contrast were performed.
 
These anatomical scans did not indicate loco-regional or metastatic spread of the disease.  A small lesion was found in the lung along with calcification in the coronary arteries.  I was aware of the calcification from a Coronary Artery Calcification scan I arranged after I had lost 100 lbs in my earlier health journery.  I have been pursuing aggressive lipid lowering to undo damage done by years of type 2 diabetes.

My Social Security and Medicare application still had not been approved so I decided to pay exorbinant fee for COBRA extension of my employer coverage which would end the next day to cover medical expenses in November.

Nov 2:  I had a consultation at the local proton therapy center and the radiation oncologist confirmed that they had done bladder cancer treatment and could do so with Medicare.  We scheduled a CT simulation in preparation for treatment planning.

Nov 10:  20 years after leading software development of first generation of Siemens PET/CT scanners (including working with clinical staff at the University of Tennessee) - I had my first PET/CT exam.  Unfortunately this exam showed significant PET activity in two pelvic lymph nodes near the bladder indicating loco-regional spread.  There was no indication of metastatic disease.  However, data on the use of radiation and chemotherapy on disease with locoregional spread was limited.  I soon had a call from my old boss at ProNova who informed me of progress that had been made at our first clinical installation in Nashville - including the precision delivery to lymph nodes.  I arranged for a consulation at the Nashville proton center.  It was approaching 4 weeks after I had applied for Social Security and Medicare Part B.  My wife had applied after I did and her application was approved in two weeks.  I was relying on having Medicare in place to have proton therapy approved.

I had been continually surveying the literature and discovered that a promising new treatment for muscle invasive bladder cancer with loco-regional or metastatic spread had been fast tracked for approval by the FDA.  The standard of care for decades was cisplatin-based chemotherapy.  The new treatment was a combination of Keytruda and Padcev.

Keytruda is a PD-1 checkpoint inhibitor - which turns off a signal to T cells which keeps them from killing cancer cells and thereby boosts the body's immune reponse.  Padcev is representative of a new class of therapies - antibody drug conjuagates (ADC).  The antibody component of the ADC seeks out a protein (nectin 4) expressed by urothelial cell carcinoma.  It is linked to a cancer killing drug which is delivered to the cancer cell. 

In April 2023 - the combination was approved for locally advanced or metastatic muscle invasive bladder cancer for patients ineligible for cisplatin-based chemotherapy.  Results presented in October 2023 resulted in a application for accelerated approval as first-line treatment for all patients with locally advanced or metastatic.  The original target for approval was April of 2024 - but approval came on Dec 15, 2023.

I discussed this option with my medical oncologist and he supported this as my first line treatment.   We scheduled a treatment beginning in December - when I hoped that my Medicare Part B application I submitted in October would be approved.