Unfortunately, this is the last post about my brother. He passed away on October 6. My brother showed great fortitude against very long odds, and his courage and strength of spirit during this brutal battle was inspirational. I am heartbroken to lose him, but I know the cliché that he is finally at peace is appropriate.
His pandemic appropriate graveside funeral was Friday. Coincidentally, I was scheduled for an Auximen PET/CT scan that day at 4:PM. I decided to keep the appointment. It represented, symbolically, that it is now time to take care of myself.
I insisted my Jefferson oncologist let me have Penn Med do the PET/CT scan after discussing the dramatic rise in PSA. (I went from 4 to 10.6 over three months). I pasted the more critical conclusions from the radiologist report at Penn Med below in quotes. There are significant negative changes from my last fluciclovine scan in March 2020 from Jefferson.
Jefferson is a great hospital with a good reputation, but I am not comfortable there. The radiological oncologist from Penn called me to discuss the results on Monday. I immediately scanned it in and sent it to my oncologist at Jefferson through the portal. He called me on Thursday after 5 PM, asking me if I had seen the report. I told him I emailed it to him Monday night and was surprised to wait so long for a response from him. I also called and left a message on Wednesday. He never read the note in the portal. He didn’t respond to my questions and was not aware that my brother had passed. Some might think I am petty, but I consider the accumulation of many “small” things to equal a big thing. I am actively pursuing a change.
The report follows.
“Postsurgical changes of radical prostatectomy, without evidence of local tumor recurrence in the surgical bed.
No tracer avid lymphadenopathy to suggest nodal metastases.
Redemonstration of widespread tracer avid sclerotic osseous metastases involving multiple vertebral bodies, ribs, and pelvic bones. Multiple of these foci demonstrate subtle lytic and sclerotic changes. Reference lesions as described:
-New T1 vertebral body lesion with SUV max of 5.6 and without definite CT correlate
-New ill-defined sclerosis in the anterior aspect of the L3 vertebral body with SUV max of 9.3
-New right iliac bone lesion with SUV max of 8.4
-Stable non-tracer avid left iliac bone lesion measuring 1.9 x 1.6 cm
-Subtle lytic tracer avid right femoral neck lesion with SUV max of 7.4 Tracer distribution is otherwise physiologic.
Additional findings:
*Mild coronary artery calcifications
*Bibasilar atelectasis
*Calcified pulmonary granulomas
*Colonic diverticulosis
Postsurgical changes of radical prostatectomy without evidence of local tumor recurrence.
Widespread tracer avid osseous metastases, new from a prior study, and demonstrating subtle lytic and sclerotic features on CT. Note that this includes a right femoral neck lesion that was present on prior CT scans, but is newly tracer avid and has a mixed lytic blastic appearance that could present an increased fracture risk in this location .”
The Doctor at Jefferson mentioned three possible treatment responses. The discussion was by category with little detail in the phone conversation. Chemo, Radium 223, or immunotherapy. He mentioned 4 different options of immunotherapy, including one at Cornell involving PSMA. I don’t think there is anything wrong with this response, though I eagerly await this community's ideas. I woke up this morning with a growing unease with the doctor's lack of urgency.
I continue to feel very good physically. Considering the stresses of 2020, I am doing OK emotionally. I don’t think that is BS, but who knows. At the moment, I consider this a warm escalation of cancerous growth that needs a prompt response since the Zytiga, Firmagon, Dexamethasone, treatment is failing. While I would like to have gotten more than 17 months, this is not a surprising development. I am moving to the next level of wack-a-mole or my sometimes more profane name for the “game.”
There will be more to follow. I haven’t a clue what direction I will be going in for further treatment.
Thank you all for your indulgence as I share parts of my personal experience unrelated to Pca.
Philly
My brother has advanced Prostate Cancer
Lytic bone metastases?
