What things may come: Today was 3... - Advanced Prostate...

Advanced Prostate Cancer

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What things may come

Jvaughan0 profile image

Today was 37. Thirty seven days of IMRT radiation... 37 days of saying good morning to an office staff of five, dropping my pants in an examining room chair and donning an operating gown before reciting my name and birthday grants me entry into the subduely lite room of the one-eyed Cyclops. On day 12, I told the nurses I was born in 1921 to see if anyone paid homage to this ritual. No one barred my way. Once I snuggled into the treatment table form and raised my arms over my head, I asked, "Do I really look like I'm 100?" There was a long pause as the staff pondered my deception. I learned long ago that not everyone gets my dry sense of humor that often spirals into the cryptic. I brought them breakfast biscuits the next day to go with their now acute awareness I was born in 52.

Each day I watched the plastic and metal arms spin, the green laser line circle, the red beam glide from left to right and back again until its buzzing abruptly stops. I saw Thanksgiving, Christmas and New Years come and go, collecting glimpses into the lives of people behind the machine as the buzzing continued almost daily. Several times I wanted to quit... just not go again. I gave up coffee for my own version of caffeine less Boston brew. My bladder discomfort actually improved; my fatigue and body aches didn't. So far, no bloody greeting in the morning stool. Often my thoughts waffled behind radiation is killing cancer to radiation is killing the normal cells too, maybe setting them up to become monsters in the future.

Out of the blue, my RO said I could stop treatment today. Her treatment plan called for 39 sessions-- 25 whole pelvis and 14 boosts to the three glowing avid nodes lined up like stars in a vertical Orion's Belt on my right side. "Three more treatments. Why stop now?" I said. She then asked what are my plans for future treatment. "Wait and see," I replied. My wait will end in April. My next MO appointment, blood tests and a second six month Lupron injection are scheduled at Duke this coming April. I want to know my PSA and T levels now, but would it make any difference other than satisfying my own curiosity? Often visits to a medical professional is a battle, a no-win confrontation between my Googled/Malecare supported education and their university degrees with me trying not to be totally clueless or tolerating curt smugness. I'm pretty sure I will never legitimately tell a nurse I'm 100, but it would be nice to see the earth move though more cycles of its seasons without skylines of medical buildings on the horizon, or the smell of antiseptics in the air.

Sent from my U.S.Cellular© Smartphone

27 Replies

I’m surprised you had a poor experience with the radiation oncology staff. When I did my 42 sessions of IMRT the staff was great. They became my friends, and when it was finished, There were hugs all around, and then I gave each of them a gift card. The supervising RO, who didn’t design the plan and who didn’t much believe in it, met with me weekly, and since there wasn’t much to discuss, we spent time bulls—-ing and becoming pals. Radiation was not fun, but the people who worked it made it as pleasant as possible.

Jvaughan0 profile image
Jvaughan0 in reply to Canoehead

I'm glad you had a pleasant experience. I hope your treatment was beneficial.

Canoehead profile image
Canoehead in reply to Jvaughan0

to answer your question, my radiation was in 2018, and I’m still doing well.

More importantly, reading some of your other posts it is clear that you have not been satisfied/happy with your care providers. One of the first things I learned is that I am the captain of my treatment team, that my doctors work for me, and that they have a duty to explain things and answer questions. It may take a switch or two to find that, but with the stress this disease brings, you have the right to have doctors that you are comfortable with. Shop around; you owe it to yourself.

Nalakrats profile image
Nalakrats in reply to Canoehead

A-Double A-Men!

Nal

Schwah profile image
Schwah in reply to Canoehead

That is great advise!

Jvaughan0 profile image
Jvaughan0 in reply to Canoehead

Frankly I suppose the distrust would follow me no matter where I go; therefore, the fault may well be within me. I will likely forever feel as if I am a lab rat in a medical setting. The waits, dealing with people separated by professional veneers, and scripted general information seem disingenuous yet understandable. I am in no position to know what "best" means. I think at best that rating is a hindersight observation. I do appreciate your willingness to interact here. I'm not satisfied with or disappointed in my medical care. Every action is a limited trade of resources for a hopeful outcome.

Speaking of switches, I have contacted Szmulewitz to set up a meeting with him, your satisfaction with him was a big factor. Thanks George

pjd55d profile image
pjd55d in reply to Scout4answers

is that Russell Szmulewitz at U of Chicago ? If it is I have to say that I have had a great experience with him and I hope you have the same.P

Lulu700 profile image
Lulu700 in reply to Jvaughan0

Jvaughan ! We just want it to work . Then it is worth the suffering . 🙏

Lulu700 profile image
Lulu700 in reply to Canoehead

I too had a similar great experience with the imrt staff . Best of all ,for me it has worked six years so far .. far better than originally projected . Oh yah!

maley2711 profile image
maley2711 in reply to Canoehead

"didn't much believe in it " ???? what ???? an RO who doesn't believe in RO?

CAMPSOUPS profile image
CAMPSOUPS in reply to maley2711

I think you meant that reply to go to Jvaughan0 instead of Canoehead.

Canoehead profile image
Canoehead in reply to maley2711

Even though I was stage 4, the treatment team considered me oligometatatic and designed a radiation plan with curative intent. The RO supervising the daily treatments did not believe in the possibility of a “cure” of metastatic disease. So she and I would joke about the difference between cure and long term remission. The specific terminology made no difference to me, and I respected the fact that she was honest about not believing in the possibility of the intended long term outcome.

maley2711 profile image
maley2711 in reply to Canoehead

So, the RO who planned your treatment was optimistic, and the treatment supervising RO was not? appreciate you have a sense of humor when others are not encouraging!!

Can’t hurt to get a PSA and testosterone test 5 weeks out or so from end of RT for a baseline

Jvaughan0 profile image
Jvaughan0 in reply to Anomalous

I have a regular checkup with my family doctor in two weeks. Though I think a T screening would be helpful to see how well Lupron is working. I'm thinking cancer cells are still dying and maybe shedding, so PSA might be a false alarm.

maley2711 profile image
maley2711 in reply to Jvaughan0

Yes, be very careful about PSA readings and radiation outcomes.............. think long-term apparently....

youtube.com/watch?v=ogDhQv-...

and this.......

youtube.com/watch?v=aUXnlnc...

1921 ,very funny.. although at one point I too felt 100 old yrs myself during rt . ,I was 53. That same Lupron and imrt kicked my APC in the gullet,not to return in six years . I wish you the same . Get through it and get back to healing and recovery ….👍🏋🏽‍♂️ God Bless!

Yeah man. You keep it coming. We need another perceptive and articulate poet on this site. A repeat PSMA scan after at least six months may confirm Orion’s Belt disintegrating - which it certainly will. Nadir PSA may take years. But for now it will be hidden by ADT suppression. Only when ADT (of whatever decided duration) is over and testosterone recovers will the results shine in your stars. Perhaps you will know the elusive “cure” by the time the James Webb Space Telescope comes fully on line.

Jvaughan0 profile image
Jvaughan0 in reply to MateoBeach

Good extended metaphor. I hope the Webb's discoveries overshadow current politics and pandemics.

When I had PLN RT in 2019 I remember wishing I had glasses to see the glorious fountains of MeV photons scattering in the room like sparks from a welder’s torch times 1,000,000.

Jvaughan0 profile image
Jvaughan0 in reply to MateoBeach

Visualization has power. I like that mental image.

I have done monthly PSA and T testing since starting my 38 radiation treatments because I was starting the new oral version of the antagonist approach to ADT and my Uro was as interested in tracking it as I was....both my PSA (undetectable) and my T (Teens) did not change from the switch from the injectable version of antagonist (Firmagon for 4 months) to the oral (Relugolix started last Feb.) ...nor through the radiation which ended in April 2021. Hoping to discontinue ADT at the 18-month mark...April 2022.

Jvaughan0 profile image
Jvaughan0 in reply to JRPnSD

Thanks for sharing. ...wishing you well in April.

Speaking from my own experience...... Never try subdued humor on medical staff. They're too busy trying to remember what they were taught in surgery class "measure twice, cut once"......

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 01/14/2022 10:43 PM EST

Jvaughan0 profile image
Jvaughan0 in reply to j-o-h-n

I thought that was woodworking class. And it is hard to keep wood working with this project.

j-o-h-n profile image
j-o-h-n in reply to Jvaughan0

Yep no more woodies........ 🤢🤢🤢

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 01/15/2022 4:07 PM EST

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