First - some qualifying statements... lawyers call it "due diligence", others CYA, others "disclaimers"
- I am willing to correspond with others; I do not consider myself adequately experienced to be a mentor as my journey down this road is just barely past the "course charting" stage and just getting into the schedule the scheduling stage.
- I do not have a command of the jargon, acronyms and code words.
- I bring a strong background in ignorance to this discussion. I need to learn. If you can learn from what I post, my sharing will be validated.
- Some will find my humor troubling. I am not troubled by it and it is inseparable.
- Sharing this story is NOT FOR ME me, it is FOR YOU.
If you are still with me, here goes...
I live in central Pennsylvania (Harrisburg area)
I am 69 and on the verge of retirement
October 2016: Gleason 3+4... T2c... Prolaris (an advanced evaluation of the biopsy slides) 4.6
Jan 2017 MRI evaluation - no change from Nov CAT. Schedule = proceed/implement w/o URGENCY (except perhaps in the rest room).
Probability of death from prostate cxr = 5% through 10/2026. I have a 95% chance of dying from something else at/by that point. Since that equals 100% and the limits of my math skills, I cannot do the probability math beyond 2026.
The local urologist who first put his finger on the problem & proved it w/a biopsy recommended IMRT due to various risk factors - afib, stents, diabetes, etc. I wanted a 2nd opinion.
Local doc makes surgical referrals to Temple U in Philadelphia (125 miles one way). His practice does IMRT in their practice-owned rad lab on same premises as urology office.
I picked U Penn for IMRT 2nd opinion (115 miles) BECAUSE my local urologist makes surgical referrals to Temple.
Before making a PENN appointment, I read the bios for EVERY PENN urologist. I picked Dr. Christodouleas ("Christo" from here on) for his involvement in research, teaching and patient care. He wrote a paper (with others) on SpaceOAR... more on this later.
Christo too recommended IMRT. Both docs wanted me to talk to a cutlery wielding practitioner (surgeon) - I opted not to do this since both had very good reasons for me to select IMRT over a slice & dice Benny Hanna experience. [Gil is referring to "Benihana", which is a Japanese steak and sushi restaurant chain in the United States, at which the chef prepares your meal in front of you, usually with some very elaborate and highly entertaining knife work.]
Today (1/14/17), the basic treatment process is set. Part of this requires creating what I perceive to be a 3-D virtual mapping of my prostate and placement of targeting reference points (gold orbs) to guide the IMRT which I call the death-ray. I believe w/some uncertainty, that the orb PPS (prostate positioning system) was previously called Calypso. See note above regarding language, vocabulary, acronyms and (my) ignorance.
In our first visit, Christo mentioned SpaceOAR. It physically moves (shoves) the rectum away from the prostate before, and throughout death ray treatments, From day 1 it biodegrades and it is urinated away in about 6 months - this is incremental and brings no urgency to this task. Christo wants to keep the temporal interval between installation & treatment as short as possible. SpaceOAR – it is a contracted acronym for (get ready)... SPACE and Organ-At-Risk – is USDA approved. Farmers can use it??
At first I thought - OK ... get SpaceOAR near home - Harrisburg or Hershey and do death ray there too. A great idea that cannot be implemented due to GOVERNMENT NONSENSE and manufacturer ineptitude.
I called the manufacturer. They reported that there is NO doctor or hospital between PENN (Phila) and Pittsburgh (180 miles west) or from Richmond VA (200 miles) north to Canada (too many miles to calculate) in the US 15/I-81 corridor) trained or qualified to use it.
Local urologists & rad - oncons had NEVER EVEN HEARD OF IT. Clearly their ignorance (correct word usage) prevents me from selecting them for almost anything.
Worse news...manufacturer also said SpaceOAR is not paid for by PA Medicare. (I never knew PA had its own Medicare payment tables.) But the enlightened manufacturer will "HELP" me through a 4-step Medicare payment denial appeal. They hired a lawyer to help the docs w/ appeal steps 3 + 4. I'm on my own for 1 a + 2. How generous.
So much for that creative work around...
Then I learned that U PENN is really committed to SpaceOAR. "How committed?", you might ask. U PENN PAYS FOR IT - the product and its installation - at least until Medicare will! This made the choice easy.
So here's the treatment plan... 39 weekdays of treatment at 70 centigray (new word to me).
What about other treatment accoutrements? Christo has no plans for Lupron - hormone therapy - unless later testing shows a need. SpaceOAR should diminish negative impacts on nearby rectum...it will not be as nearby as it is w/o SpaceOAR. PPS should also better target problem areas and avoid collateral damage.
With the treatment plan pretty well solidified, we looked at logistics and schedule.
The 230 mile daily trip is major a challenge/obstacle. It is winter in PA. Snow, ice, etc. all give David what's his name nightly "Breaking News" to report that lets him divert attention from higher priority real news...but I digress... News, maybe, but it is really an obstacle that requires a work around.
Hotels are not the answer, but again, PENN had an answer.
A PENN sociable worker (Neal) referred us to the Astra-Zenica, American Cancer Society facility where he opened all the necessary doors for us.
Hope Lodge is in NE Phila. This is a hotel-like facility that offers lodging for the duration (39 weekdays of treatment plus the enclosed weekends). It is a manageable 15 miles from PENN but wait... Hope Lodge provides, i.e., GIVES residents daily round trip ground transport to PENN and a variety of other local hospitals. There are volunteer-provided meals 4 nights/week.
If we drive ourselves to PENN, their totally free valet parking would handle that challenge for every day we use it. I was only mildly upset on our first visit when I drove up in a Fiat and drove home in an Avalon!
With weekday treatments, we can go home Friday and return Monday. A-Z/ACS allows us to remain "checked-in" during our weekend absences. The amenities – the necessities of life needed beyond a bed and bath accommodation – are also provided. Cold, frozen and dry goods storage space are provided. Not a mere laundry room with self-service washer & dryer, there are no coin slots, and detergent, etc. are all supplied.
The Lodge has a great room on every floor and FOUR fully outfitted kitchens where we can prepare our preferred menus, w/ our preferred ingredients w/an array of power tools more expansive than our home equipment locker can offer!
After a nutritionist meeting at PENN, we are prepared for grocery shopping that yields meals compatible with the expectations of the "procedure crew" - a group I have yet to meet. They want a significantly clear rectal cavity to manipulate as part of the daily death ray procedure. (Details later after I have experienced this intrusion).
So all that is left is a start date.
PENN has that assignment. Based on all of my experiences with them so far, I am pleased that this task is in the good and capable hands of Timothy - a patient advocate and process expediter/coordinator.
Next PROCESS is SpaceOAR installation & PPS orb placement (a 2-fer procedure)
After Next - simulation. Apparently this is everything except the death ray (and me) being turned on
Then the real thing.
Stay tuned ...
I found this site (YANA) by accident and even more serendipitously, I landed on a post from Glen who, it turns out, lives about 40 miles from me. If you're still reading, I must acknowledge his role in all this. He encouraged me to add my experiences to YANA. It seems he and I have traveled many of the same roads albeit sequentially. Like any tourist, he has noticed how things have changed since he traveled this road. I am most appreciative of his diligence sharing his experiences.
His initial and subsequent posts made it clear that I have found the right facility, technology and physicians. I have also found a valuable resource (YANA) and willingly contribute this post because sharing this story is NOT FOR ME me, it is FOR YOU.
In my quest for more info on SpaceOAR, I found this on Al Gore's internet –
"10 top healthcare technology advances for 2016, according to ECRI
"By Jessica Davis January 07, 2016
Stolen from: http://www.healthcareitnews.com/news/10-top-healthcare-technology-advances-2016-according-ecri
#9 Injected bioabsorbable hydrogel (SpaceOAR). Approved for prostate cancer patients, SpaceOAR is designed to protect tissue and healthy organs from radiation treatment. Currently there is limited reimbursement for this product's use, but studies have shown the barrier to be highly effective.
One YANA contributor says that his experience was that the much dredded saline engorged rectal baldder was not used when he encountered SpaceOARabout a year ago. I suspect that I will have my answer in this regard in about 2-3 weeks. Stay tuned.
Diagnosed last fall, treatment has not yet begun. I suspect it is still at least 4 weeks away.
At church, I am on the prayer committee's watch list... but not the weekly published prayer list. A lot of folks know of my Dx. I get a lot of "How are you feeling?, How are you doing?" questions these days. This is a tough one...
Last week one of the "Shawl Ladies" offered me a prayer shawl. It came in masculine colors and had a note indicating that when it was knit/crocheted/made, the recipient was unknown but each stitch incorporated a brief word of prayer for the unknown recipient. The following is excerpted from my thank you note.
"Thank you! I must say, I was taken aback. As some of you may have heard, I will soon start a series of treatments to wipe out an invader. Mine is not a rare illness - it has affected millions of people and several of our friends here at church. It is not a special affliction - until it happens to someone you know, care about or worst of all - it happens to you!
I am in what I feel to be a weird situation. I do not hurt. I do not feel bad. My basic life patterns have not changed. The doctors do not exhibit any sense of urgency to begin treatment.
I am not sure how I should feel about all of this. When friends like you share your compassion and support and love, I feel unworthy. There are many people far worse off than I am! Surely, they must need support more than I do, right??
From my "outside-looking-in" perspective, we got here, in part, because U Penn is convinced that SpaceOAR is the right tool for radiation treatment patients. [GOOD NEWS]
Successfully completing a mandatory training cycle (doctors trained by sales people), UP had to develop the protocols for routine use of this new technology. [Unavoidable.]
As the bureaucratic wheels move slowly, days merged into weeks, weeks into... [This pace of progress is called "Governmentium"]
I also bring complicating medical challenges that apparently messed up their neat new set of protocols. Perhaps they assumed that their patients were all in excellent health and that only one issue (P Cxr) was at hand. [Rules are made to be broken...]
Because my ingestion pattern of some blood thinning meds must be altered six days out, rather than install SpaceOAR some MONDAY and wait 2 weeks to install little gold GPS markers a/k/a fiducials, also on a MONDAY, they will do both at once on a single MONDAY. [Do you know how hard it is to get a "two-fer" procedure from the medical world these days!!!]
Previously a general anesthesia was used but the new protocol changes this to local anesthesia. [This will be a great research opportunity for a future post. Oh goody!!! I get to LIVE the full experience.]
After orb insertion, the protocol has another two week wait for "simulation". The only thing simulated, I am told, is that the death ray switch will not be in the "on" position. EVERYTHING else will be done for real. [Nobody is telling me what EVERYTHING ELSE entails. When I know, you'll know!!]
But wait... instead of two weeks to recover, they plan a mere four days between SpaceOAR/Orbs and Simulation. [More broken rules... go figure...]
So the newly written book is being rewritten or at least getting a lot of margin notes, foot notes and caveats.
NOTE: I am MOST PLEASED with the professionals at U PENN. I had the misfortune of being the first or second to be run through machinery of a not yet smooth running new protocol. [I am so glad I can contribute to its fine tuning!!!]
Gil's e-mail address is: firstname.lastname@example.org