Advice: Fiducials Marker's: I went to a... - Advanced Prostate...

Advanced Prostate Cancer

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Advice: Fiducials Marker's

DeanNelson profile image
41 Replies

I went to a urologic oncologist yesterday, a radiation oncologist requested that he place fiducial markers so I can get cyberknife treatment. The rad onc wants to treat my prostate and the one metz on my sacrum. BUT the urologic oncologist yesterday said he doesn't agree with the rad onc; says my prostate and bladder is one big tumor and the side effects will be awful. And with my type of cancer life expectancy is 24-36 months even with all treatments available today. So he "really" wants me to think about the radiation treatments.

1. Has anymore ever had cyberknife?

2. Where the side effect that bad?

3. Anyone on here with Stage IV ductal adenocarcinoma also?

This guy really kinda kick me in the stomach yesterday

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DeanNelson profile image
DeanNelson
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41 Replies
AlanMeyer profile image
AlanMeyer

I'm confused because your urologist said you should have radiation treatment. Cyberknife IS a radiation treatment. As I undertand it, Cyberknife is similar to IMRT in that both involve external beam radiation. Cyberknife gives it to you in a small number of bigger doses, and each has a different way of ensuring that the heaviest dose goes into the tumor rather than surrounding tissue.

Perhaps you misunderstood something or maybe wrote it down differently from what you meant to say?

Alan

DeanNelson profile image
DeanNelson in reply to AlanMeyer

No the rad onc wants to do it but the uro onc doesn't want to place the markers thinks I am not going to benefit from it

AlanMeyer profile image
AlanMeyer in reply to DeanNelson

He might be right. When the cancer is really severe and the Gleason score is high, it's hard to cure it with radiation or surgery, even if it's not yet all over the body. I wish I could tell you what to do but I know less than either the rad onc or the uro onc, and they disagree.

Alan

DeanNelson profile image
DeanNelson in reply to AlanMeyer

thank you....

AlanMeyer profile image
AlanMeyer

Nowadays I look at Tall_Allen's blog as a reliable source of info.

Here's his page on SBRT (stereotactic body radiation therapy), of which Cyberknife is apparently one type.

pcnrv.blogspot.com/search?q...

Alan

GP24 profile image
GP24

If your prostate and bladder is one big tumor this is no situation for Cyberknife. If you have a T4 tumor you should get treatment by one of the big hospitals.

And do not believe these life expectancy estimates. PCa patients usually live longer than estimated.

Fairwind profile image
Fairwind

What was your Gleason score and what is your PSA now ? Time to see a Medical Oncologist...In cases like yours, HT or ADT is used first to suppress the cancer and get it under control.. If it has metastasized, neither surgery or radiation are usually recommended..Sometimes, after ADT has shrunk the tumors , radiation can be used to kill the remaining cancer..

Cyberknife or SBRT is usually used to treat small, localized cancers in difficult to reach areas. It has a small, high-power pencil beam. In cases like you have presented, if radiation is used at all, a larger, lower power beam (IMRT) is used to treat a larger area..There are lots of conflicts in your post that need to be clarified..And where did you come up with the 24 to 36 months figure ??

DeanNelson profile image
DeanNelson in reply to Fairwind

Gleason 9 metz

Tall_Allen profile image
Tall_Allen

This is sometimes referred to as debulking with radiation. The newest results of the STAMPEDE trial show there is a benefit in men with a small number of distant mets, as you seem to have. SBRT/CyberKnife is a way to get your biologically effective dose high enough to kill the nasty ductal cells without incurring a lot of side effects.

pcnrv.blogspot.com/2017/06/...

But your Uro brings up a good consideration about the bladder. The best way to predict whether the side effects are likely to be too much is to go ahead with the fiducial placement and the CT and MRI. The RO will then be able to tell whether you can be treated without exceeding the bladder dose constraints. He will create a "dose volume histogram" that will show what the bladder dose would be. If it exceeds the bladder dose constraint, then you might be in for serious side effects. So, I would be asking the RO these questions:

(1) (before fiducial placement) What dose constraints are you setting for the bladder?

(2) (before fiducial placement) Do you think you will be able to meet those dose constraints?

(3) (after the plan) Did the plan meet the bladder dose constraints you set?

I think you should discuss whole pelvic treatment and not just the prostate.

DeanNelson profile image
DeanNelson in reply to Tall_Allen

I was so hoping you would answer Tall_Allen... thank you so much!! I will ask him those questions for sure

Tall_Allen profile image
Tall_Allen in reply to DeanNelson

BTW - I would ask for transperineal placement of the fiducials - less infection risk. Mine are gold, but I hear they also do platinum (and some places do radio transponders). It's the only jewelry I wear ;-)

DeanNelson profile image
DeanNelson in reply to Tall_Allen

I will ask!!! thank you so much Allen! I will let you know how it goes for sure - would be my only jewelry too :)

in reply to Tall_Allen

I must have a low budget dr. He’s going to install carbon Fiducials in me. Walmart jewelry for me. Not sure which direction they are going to install. I’ll ask.

Carlo

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

to TallunderscoreAllen: 14K or 18K?

Good Luck and Good Health.

j-o-h-n Friday 11/02/2018 4:53 PM EDT

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

24K - it has to be pure

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

to TallunderscoreAllen:

and $39.50 a gram

Good Luck and Good Health.

j-o-h-n Friday 11/02/2018 8:59 PM EDT

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

They also make them in pure platinum - you can decide which color you want to wear on the inside.

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

to TallunderscoreAllen:

I'll settle for Francium – approximately $1 billion per gram... in any color as long as it's black (like my Model T).

Good Luck and Good Health.

j-o-h-n Friday 11/02/2018 9:19 PM EDT

Chalkie42 profile image
Chalkie42

Hi Dean,

The language you have been given are not in my vocabulary. But after they cut my Prostate out my PSA went from 6 to 4. After scan revealed mets in lymph nodes well away from where my prostate used to be. Two to Five years they said. That was in 2005. My Mate who was a GP said don't worry - prostrate cancer behaves how it behaves. I saw the chief oncologist who said that to me again for the first time since I was "kicked in the guts" this morning. I reminded him of what he said. Of course he denied it. I work hard at keeping fit so get down to the gym and keep reminding yourself that exersise is medicine.

benninger profile image
benninger

My husband has ductal adenocarcinoma , stage 4 , gleason 10 with numerous mets. He prostrate removed July 2017, psa was on the rise even after surgery. Today his psa is.01 please don't give up. He went on Loupron, prednisone, and had 6 chemo treatments. he is currently on Zytiga, Loupron and prednisone. Some side effects but at age 70 he is doing great, we all have aches and pains on occasion. We are 19mos in and he has a long way to go. Good Luck there is hope , lots of prayers coming your way

DeanNelson profile image
DeanNelson in reply to benninger

Thank you 🙏 so much I will continue to fight this beast!!

JimVanHorn profile image
JimVanHorn

I did not worry about "Fiducial Markers". You see the prostate gland (and surrounding tissue) is not attached to a bone like in breast cancer where the tumor is stays in one place. So as you are getting radiated poop can go down your intestine and move the location of the tumor being radiated. This is not good, for example I had my colon perforated and e-coli went all over my body giving me sepsis. The markers are placed in a three dimensional triangle if your prostate moves during radiation the machine can actually move with it because of the markers. This also is used to establish who you are the radiation machine. Fiducial markers are small metal (typically gold) spheres, coils or cylinders about the size of a grain of rice that are placed in or near the prostate and are left there for life. They are placed through the rectum. They cause no damage and are painless. I also had a tiny tattoo on the sternum to set the center line of my body. I had 72 radiations over 11 years, and Eligard injections for 6 and 1/2 years. I wish you the best and listen to the doctor who you think has your best interest at heart.

DeanNelson profile image
DeanNelson in reply to JimVanHorn

Thank you, Jim, the radiation perforated your bowel?.....

JimVanHorn profile image
JimVanHorn in reply to DeanNelson

I can not prove that the radiation perforated my bowel, but what else would it be? Do you understand that each "radiation" treatment has three zaps in it. You get one zap and then the machine moves to a new position and you get another zap, etc. So if you get 42 treatments you will get a total of 126 zaps. The reason they change the direction is because one zap will not kill a cell. But if a cell is zapped from 5 or 6 directions then the center of the zaps will kill the cell or cells. The radiation goes all the way through your body. It is only where the rays meet up over time that a cluster of cells die off without affecting the healthy cells. So I am grateful to be alive, but they did want $25,000.00 for my hospital stay while I finished my radiations. I was given Rochephin injections (an I.V. antibiotic) for 2 weeks. My radiations were at my urologist's office, so the hospital let me drive 12 miles to the radiation, get zapped, drive back, and get back in bed at the hospital. I had no medical insurance and the hospital wanted $130,000. for the radiations, so I found a doctor with the same machine who charged me only $30,000. (what medicare pays). Four years later I was told to get 30 more radiations, but I had medicare and only paid $48! So I decided not to make a big deal of all this because the same doctors were treating me for cancer. The hospital did not make me pay the bill, but all the doctors sent me bills ($2,600.). I could have have died from sepsis, but thanks to the Emergency Squad my brain is still working. It just wasn't my time. So just go ahead, take a chance and keep asking questions.

DeanNelson profile image
DeanNelson in reply to JimVanHorn

OK!!!!

j-o-h-n profile image
j-o-h-n

Greetings DeanNelson, would you please tell us your age, location and where you're being treated. Thanks. (Forget that nonsense about 24-36 months... ask him to give you this weeks lotto numbers instead, get my drift?).

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 11/01/2018 5:53 PM EDT

paulofaus profile image
paulofaus

I had cyberknife to my prostate and bladder a few months ago. My original cancer was biopsied in 2016 and declared Gleason 10, but after a TURP operation in July this year, was declared 90% small cell and 10% sarcomatoid. The cancer has spread up into my bladder, causing a bleed, which my urologist repaired. Before the cyberknife, I had 3 gold seed markers implanted in my prostate. The implantation of the gold seeds was a bit more traumatic than I was warned and it took about a month to fully get over it. There was a fair bit of blood in my urine during that month. The cyberknife treatment was ok, the main side effect for me was I became fully incontinent about 3 weeks after it finished and that has slowly gotten better. I am also having a combination chemo regime of cisplatin and etoposide to hopefully gain some control as the two are seen as a powerful combination with the radiation. So far I seem to be responding well. I'm having a CT scan in 2 weeks which will be a clearer picture of how I'm responding. Cheers Paul.

DeanNelson profile image
DeanNelson in reply to paulofaus

when you say " became fully incontinent about 3 weeks after" was that bowel or bladder?

paulofaus profile image
paulofaus in reply to DeanNelson

Bladder. I was and still wear incontinence pads, though now it's only for the odd accident.

paulofaus profile image
paulofaus in reply to paulofaus

I should add, I also had spaceOAR gel inserted between my prostate and rectum, which is designed to protect the rectum.

DeanNelson profile image
DeanNelson in reply to paulofaus

Ok thanks

Tall_Allen profile image
Tall_Allen in reply to paulofaus

Paul - do you know if the biopsy was positive for somatostatin receptors?

paulofaus profile image
paulofaus in reply to Tall_Allen

Hi Allen, I'm not sure, I haven't yet seen the pathologist report, I'm just going by what my MO told me.

Tall_Allen profile image
Tall_Allen in reply to paulofaus

The reason I ask is this:

pcnrv.blogspot.com/2016/12/...

If it is somatostatin receptor positive, you may be able to get Lutathera off-label in Australia.

paulofaus profile image
paulofaus in reply to Tall_Allen

Thanks Allen.

DeanNelson profile image
DeanNelson

Hi Nalakrats, Yes I was a going to get a neuro-bladder as well until they found the mets to my spine. Then they said I am not a candidate for surgery anymore just palliative care... does your brother-in-law still have his neuro bladder?

DeanNelson profile image
DeanNelson

not after they found mets...not more surgery

DeanNelson profile image
DeanNelson

god I hope I have that problem 17 years from now

DeanNelson profile image
DeanNelson

That's awesome the URO ONC kind of kick me down the other day, my wife was a mess when we left his office

VHRguy profile image
VHRguy in reply to DeanNelson

It's the worst when you see tears in your wife's eyes after a doctor appointment. That happened to us after the "cards on the table" diagnosis meeting with my uro onc. He couldn't make much eye contact; there wasn't much good news. My wife is very stoic, normally upbeat. We had a very quiet car ride after that meeting.

Tall_Allen profile image
Tall_Allen

Thank you, but that was the MRI radiologist's report, rather than the immunohistological report by a pathologist. The information you're looking for, if it is there at all, would probably be part of the same report that found it was 90% small cell and 10% sarcomatoid.

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