Cyberknife is in my future

[paulofaus]

Hey Guys,

I have been advised (by my Uro and Radiation Oncologist and Medical Oncologist) that I need to get some local control as I haven't had a radiation to the prostate before. I was diagnosed Gleason 10 2.5 years ago and I've been through chemo (Docetaxel) ADT (Zoladex implants 3 monthly). Since January I've also been on Enzalutmide/Xtandi as PSA was rising with Zoladex alone, so was declared castration resistant. The Xtandi has managed to keep my PSA in check (it's currently 0.67 and stable) but I have a lot of cancer in the prostate which is causing issues. I've had a TURP recently and the Uro is concerned that it may grow through to my rectum, which is obviously not good, so the radiation is hopefully going to prevent this from happening. I'll be getting Cyberknife 90 Grays, over 5 fractions. I had to get gold seed markers put into my prostate by the Uro. This was supposed to be a simple procedure, but it was pretty much hell, with lots of blood, swelling pain etc. It's 4 days since I had the seeds put in and things are settling down. The first radiation dose will be in just under a week's time.

I'm just wondering if anyone else has been down this path? My prostate hurts like hell (apparently due to the high grade cancer rather than prostatitis) and I hope that the radiation will kill the cancer cells and bring some pain relief, but I'm also fearful the pain and other urinary issues could get worse, at least in the short term. The TURP and poking around embedding gold seeds has aggravated the problem and I'm now on some pretty heavy duty pain killers to manage the pain levels.

I should also add, I've had spot radiation to some bone mets previously and I've responded really well. Good pain relief and CT scans show those treated areas have responded well.

Thanks in advance.

Paul.

[Apollo123]

Great to hear they have some positive steps in place for you moving forward. You are a fighter and as the years go by new treatments that keep it at bay will appear. 👍

[paulofaus in reply to Apollo123]

Thanks Ant. Yes, that's the hope. Cheers Paul.

[Apollo123 in reply to paulofaus]

I take a lot of strength from the survival stats of Yost Conor and Dan59 and BigRich who have remained in this fight for many years with high Gleason grade. I think you have a positive attitude. There’s a chap in Velindre with me called Keith Cass who runs the red sock foundation who has somehow beaten the odds. It may be worth a google for an uplifting story. I think he was diagnosed in the 90,s with Gleason 10. 👍

[paulofaus in reply to Apollo123]

Woah, that's amazing, I will certainly investigate. I too see the guys you've mentioned as great mentors and role models. I'm not about to give up, fighting as hard as ever. I've got too much to live for.

[erjlg3]

Ohhhhh Paul..... My heart hurts for your all that you're going through and your pain. I'm hopeful for this to help! Wishing, hoping and praying for you.

Genuinely,

🤗Jackie

[paulofaus in reply to erjlg3]

Thanks Jackie.

[Tall_Allen]

I had SBRT (CyberKnife is a brand name). You can expect temporary irritation (cystititis, proctitis) about a week after treatment and lasting a few weeks. For me, the side effects were mild and were relieved with Rapaflo and naproxen. Because you had a prior TURP, you may experience a temporary bout of incontinence, or you may experience the opposite -urinary retention. Never trust a fart.

BTW - it's NOT 90 Gy. The prescribed dose is always in the range of 35-40 Gy.

[paulofaus in reply to Tall_Allen]

Ok thanks Allen. Thanks for the clarification.

[Kimmilemo in reply to Tall_Allen]

Lol, never trust a fart! My husband is wearing depends and pads and who knows where this goes. 4 weeks post op.

[bostonmac]

I’ve had cyber knife treatment twice as well as brachytherapy and two major surgeries for lymph node dissection

The cyber knife by far was the easiest

No pain at all and only some short term fatigue and some mild naseau. I also had the gold markers placed. That was the worst part of the treatment. Compared to everything else the radiation was easy

[paulofaus in reply to bostonmac]

Thanks bostonmac, that's great to know. I had lots of trouble with the gold seeds, so it's good to know the radiation won't be as bad as that.

[bostonmac in reply to paulofaus]

Most of treatments have been really tough but the radiation is as simple as getting a CT scan

WhenI had the gold seeds implanted they also did a biopsy and I swore I would never let them do that again. Best of luck with your treatment

[j-o-h-n]

Pain sucks... When I had a second endorectal mri it felt as if someone stuck a hot poker up my wazooie for 45 minutes which felt like 45 hours. I wished that I had a tree branch "to bite on" like in the movies but all I could do is curse every curse I knew over and over. I know that my pain lasted only 45 minutes and yours will be longer...but get those pain killers "to bite on".

Good Luck and Good Health.

j-o-h-n Friday 08/31/2018 7:42 PM EDT

[paulofaus in reply to j-o-h-n]

Thanks John, yes I'm getting used to pain, but I wish it wasn't the case.

[j-o-h-n in reply to paulofaus]

Me too....I finally got used to my wife.....Oh...such a pain....you wouldn't believe...

Hang Tough...

Good Luck and Good Health.

j-o-h-n Monday 09/03/2018 6:33 PM ED

[Dan59]

Paul, I am sorry that you have to go through this, however, I think it is great they are going for this control over the disease,It was not that many years ago if they saw a positive node during RP, they just left the prosate in and sewed you up, leaving the oldest and most mutated CA in prostate right there. We are making great progress IMO. I wish you good results and stregnth to beat the temporary side effects.

Dan89

[paulofaus in reply to Dan59]

Cheers Dan. I am looking forward to some control, but especially pain relief!

[Dalph87]

Good luck,Paul, and let us know how it goes. I'm sure radiation down there will finally solve a lot of problems and get rid of pain.

Best wishes.

[paulofaus in reply to Dalph87]

Thanks Dalph87

[snoraste]

Sounds like you’re on the right path. I’m sorry about the discomfort, but Hang in there. You have a long life ahead of you.

[paulofaus in reply to snoraste]

Thanks Snoraste.

[RonPavluvcik]

I had cyberknife 10 years ago and the treatment went smoothly. However 2 years later psa rising, and cancer still in my bloodstream. This happens about 7% of the time. So I have treated the cancer with many drugs and procedures....see all the details by going to cyberknife.com and access button "patient forum" then select from list "prostate cancer" and look for my 100 posts over 8 years under the heading "successful cyberknife but cancer returned"..Ron Pavluvcik, Shelton, CT

[wa64hoos in reply to RonPavluvcik]

Ron I just finished my 5 treatment sessions of cyberknife. I am just getting over the urinary

side effects. It has been 6 weeks. I had gleason 3-4, 3-4, 3-4 and gleason 3-3, 3-3 out of the 5 cores possitive . My PSA was 3.6. That is why I chose cyberknife. I see that you had a reoccurrence after 2 years and was wondering what your gleason and PSA was at the outset. ( I am not able to click on forum and find your messages for the 8 years.) I do wish you the best. It sounds like you are getting along fine.