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Cyberknife Diary

mstoriop
Posts: 34
Joined: Dec 2016

Hello All

After my diagnosis and subsequent due diligence I found that this forum was the best place to get educated opinions and help from others.  I truly appreciate all of the time and help received and in that spirit have decided to start a new thread since my Cyberknife process has just commenced.  It is my hope that someone will find value in my process and maybe help them with their decision.  The discussions leading up to this can be found in my original thread.

https://csn.cancer.org/node/307008

As so often mentioned in all posts there is no good or bad decision on your treatment choice, your decision is best for you and no one else.  In my case I chose Cyberknife early on and more or less benchmarked the other options to this.  I am very lucky to have two facilities of equal quality close by to choose from for Cyberknife and should I have chosen something different another hospital with state of the art Proton Beam and other radiation treatments.

As a basic summary I was biopsied last fall with a second opinion obtained from Johns Hopkins.  One of 12 3+3. 3 of 12 3+4.  Only 5% Gleason 4 involvement.  Negative DRE.  Very slightly enlarged volume.  PSA at time of biopsy 4.6.  PSA velocity over about 4 years averaged .55.  % free PSA 20.  A 3t MRI showed no external involvement.  Absolutely no urinary or bowel issues as of this date.

Yesterday 3/12/17 I had my four gold fiducials placed.  PSA checked out at 5.25 with the doctor feeling the difference from my last tests possibly as much from different labs as anything else.  The biggest pain was the low fiber diet and fasting before the procedure plus the wait in the hospital to get the show on the road as my doctor of choice prefers to put his patients completely out to place the fiducials.  I guess you get the idea that if the wait was the biggest problem everything else was a breeze.  So far so good I went home and went about the rest of my day and evening.  Woke up today and it is like nothing happened.  Supposed to avoid strenuous lifting for a day or so.  Wednesday 7/26/17 I get to celebrate my 66th birthday with a CT scan and another MRI.  Will post further as I have anything of value.  I will be more than happy to discuss on line or privately anything that may help others.  Cheers.        

  

   

 

 

MEtoAZ
Posts: 37
Joined: Feb 2016

I guess every doctor has their biases, I remember when they placed mine, I didn't feel a thing and remarked to the doctor that it was nothing like the biopsy.  His response was; "I have no idea why urologists don't manage pain when they do that, with what is available today, there is no reason for you to feel anything during the procedure".

Maybe the Urologist's should farm out biopsies!

Good luck with your treatment, the diet was by far the hardest part of the treatment for me, I still won't touch jello or chicken broth!  I lost 11 pounds in 9 days (treatment span was over a weekend).  It was mostly water weight so it all came back unfortunately :)

Old Salt
Posts: 720
Joined: Aug 2014

I was also 'put away' for the fiducial placement (2013). Could it be that there are two ways of doing this procedure?

mstoriop
Posts: 34
Joined: Dec 2016

It strikes me as doctor preference.  As above I was fortunate to talk to two different Cyberknife doctors.  The other doctor did the placement more like a regular biopsy.  My doctor pretty much said the way he does it is his preference and if my memory serves me said something to the effect that he wanted everythng absolutely still for precise placement.     

graybeard
Posts: 1
Joined: Feb 2017

Fiducials. Ah yes. I remember them (4) well. Much faster than the biopsy and less mental stress. I don't care for the probing of my body openings. After placement (1/18/17) there was a wait period for the fiducials to be incapsulated by the prostate. On 2/06/17 The CT/MRI was done to program the CK machine. I did have a catheter in place for the CT/MRI. I was informed that the catheter was placed because I was to receive four treatments (PSA 20) rather than the normal five. Because of the catheter use for the CT/MRI only, there was minor bleeding tapering off to none after about 4 days. The diet lasted about four weeks. The morning bowel "flushing" for the CT/MTI and the four CK treatments (3/01/17) were really incovenient. As of todays date there has been some minor side effects that were to be expected, however they are almost nil. I had  my 77th. birthday end of January this year so we will see in two months where my PSA and testosterone numbers are setting.

 

mstoriop
Posts: 34
Joined: Dec 2016

Thanks for the response Graybeard.  Hope you continue to do well and I would be interested in your progress and observations.  Intersting in what appears to be a bit of doctor preference once again or perhaps protocol for different levels of PCA involvement.  In my case I am getting my CT scan and MRI next Wednesday.  My treatments will begin 8/7/17.  Five treatments over 12 days.  36.25 Gy total.  For the scans and the treatments, along with what appears to be the constants of the low fiber diet and the purging, they have me doing the same routine before each which is emptying my bladder immediately upon arrival for treatment and then drinking a finite amount of water (8 ounces).  No catheters involved.  What they explain they are doing is to attempt to insure that the conditions in place for the scans are as identical as possible for the treatments.  We'll see I guess.  Thanks and continued success for you I hope.      

mstoriop
Posts: 34
Joined: Dec 2016

Just a quick update on the process.  So far so good nothing noteworthy.  I had the CT scan and MRI 7/26/17.  The CT scan took all of 10 minutes after getting on the table and the MRI was much quicker than the original 3T MRI I had done during the diagnostic testing maybe 30 minutes long.  This morning I had my second of five treatments with the third one this coming Friday 8/18.  The final two will be next week so I will have had five treatments spread over 14 days totaling 36.25 Gy. The treatments are very quick right on 30 minutes max on the table.  It's early in the process but so far no effects of any sort period.  I have a prescription for Flomax but am not planning on taking unless absolutely necessary.  Cheers.      

mstoriop
Posts: 34
Joined: Dec 2016

Hello All.  Another quick update as tomorrow is four weeks since my last treatment.  So far so very good.  No Flomax yet and no urinary or bowel issues.  Knock on wood so far it is like it never happened.  Had a phone follow up last week with the Doc and in the absence of any issues no other contact necessary until my first PSA test early next year.  If I try real hard to think about any differences I guess I might have a very slightly increased urgency when I have to urinate but hardly noticeable.  Were I used to sleep about 5 nights out of seven without getting up at all now I may get up once per night another day or two.  Overall given that I had to do something for a treatment not do active survellance I am really happy.  Thanks to all for the continuing participation on this valuable site and I hope everyone on here is getting the information they need.    

Swingshiftworker
Posts: 1013
Joined: Mar 2010

Glad to hear it.  Please continue w/the updates.

CC52
Posts: 101
Joined: Nov 2013

Congrats on your progress. Continued success! Laughing

mstoriop
Posts: 34
Joined: Dec 2016

Hello All.  Haven't had much to report as absolutely nothing has changed since my last post 9/21/17.  Very happy and lucky so far.  I had my first blood test since my last Cyberknife treatment 8/25/17.  My PSA level was measured at 1.2.  Going in to the procedure I was between 4.6 and 5.25 from the last two tests I had.  Will not see the Doc until 2/16/18 due to some travels but so far so good.  Hopefully all will be well then.  Will report any noteworthy observations from the Doc.     

hopeful and opt...
Posts: 2218
Joined: Apr 2009

Great start......under 1 is the goal

 

A toast of California wine for you....enjoy the travel.

mstoriop
Posts: 34
Joined: Dec 2016

This post is pretty slow and boring but I still want to continue in case it is of any value to someone.  Had my second blood test and my PSA was 1.0.  I still have no urinary or rectal issues of any sort different than before the procedure.  My doctor is very happy with the results and moved a scheduled appointment from mid August to October.  Next blood test in 6 months.  Cheers and best wishes to all.  

Old Salt
Posts: 720
Joined: Aug 2014

is just fine when the results are good.

 

VascodaGama's picture
VascodaGama
Posts: 2968
Joined: Nov 2010

MS,

We are glad to read about good news. Your story is great and the results are at your favor. The PSA level is just fine but even if it has increased within the two years post CK or if it doesn't decrease fast as you would like to see it (bounce), it wouldn't mean a bad result because you got your gland in place. Swingshiftworker is a survivor of CK and saw his PSA drop past three years from RT. I can read his comment in this link;

https://csn.cancer.org/node/309848

Best wishes for more good updates.

VG

mstoriop
Posts: 34
Joined: Dec 2016

Just another brief check in for my random entries.  Just had my third blood test and PSA is now ,3 from 1.0.  All systems still a go I am so blessed that so far I have virtually no issues to deal with.  Radiologist once again said don't bother to come in and cancelled my apontment for 6 months.  Next appointment I will do another blood test and he will do the digital routine.  As always I don'r post a lot but I read a lot on here.  Always available to help in any way.  Do not under any circumstances ask me for dietary or healthly living advice.  I am not a poster boy for any of that for sure and need to shed a few as my A1C type numbers while still OK have krept in the past 6 months.  Cheers to All.   

VascodaGama's picture
VascodaGama
Posts: 2968
Joined: Nov 2010

Well !!!!! Does this mean cure?

I would think YES it does.

Let's celebrate again. Congratulations

VG

Georges Calvez
Posts: 228
Joined: Sep 2018

Hi there,

Nice to see another success story.
Let us hope that it is catching! :-)

Best wishes,

Nigel

mstoriop
Posts: 34
Joined: Dec 2016

Thanks Vasco and Georges.  Also congrsats to Georges, Max and Lighterwoods in another post on recent great testing results.  As above I also hope good news is catching.  Vasco some of the earliest comments that I got from this site that were extremely helpful came from you, plus others for sure.  Thank you for your continued participation helping new people on this site.  Best Regards

 

Mike 

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