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Beginning Cyberknife Monday 1/23

jackiegleasonscores's picture
jackiegleasonscores
Posts: 24
Joined: Nov 2011

I have posted a couple of times in the last three months and have received, and am grateful for, kind and informed feedback.
I have mild trepidation and second guessing going on, but would imagine those are normal human responses to this kind of decision.
Second guessing comes from recent reports questioning overly aggressive treatment. Trepidation comes from concern over side effects. Also I seem to have mild side effects from biopsy and fiducial placement. I haven't done a great job of informing my urologist and questioning him. I unquestionalbly am experiencing heat in one testicle. That was not there before. I experience mild straining around the penis area and recently what feels like a potential hernia. None of this before, I felt nothing unusual in those areas before this whole process started.

59 years old. Psa rise from 4.3 in 2007 to 6.4 in July 2011 to 8.3 in September 2011.
Four cores out of 12 with Gleason score 6 cancer cells. Involvement of between 5-15%.
Chose Cyberknife for pinpoint accuracy of radiation reducing damage to other areas, and convenience of 5 day treatment.

Second question of post is I am scheduled for 3:00pm treatment Monday and 8:00 Am Tuesday.
Seems like a bit much radiation in 15 hours? Any feedback? I will definitely be asking that question of oncolgy on Monday also.

Wayne

Swingshiftworker
Posts: 620
Joined: Mar 2010

Congratulations on your decision to proceed with CyberKnife treatment.

I assume you know that I and others here have already had it. The jury is still out but the prognosis for us is good. I trust it will be the same for you.

In response to your specific questions:

1) You don't need your urologist there. He can't do anything for you during the treatment and any problems that arise because of the treatment that you might need to discuss w/him will not reveal themselves until after the treatments occur. My RO showed up before my 1st treatment but did not stay long;just said hello and good luck. I don't think it is customary for a urologist to attend CK treatments and I assume the payment he wants is for his time, which he is entitled to, but he really won't be able to do anything for you there so, IMHO, it's a waste of $ to pay for him to be there.

2) Although CK is a very precise method of radiation delivery, like any other form of radiation, it causes damage to the tissue it touches (and other tissue nearby), so it is best NOT to receive the treatments too close together which may cause problems associated with tissue irritation, such as pain or incontinence during urination and bleeding from the rectum. The normal protocol for CK is once every 24 hours but I and others here choose to receive our treatments every other day (48 hours) in order to reduce the probability of such problems and none of us reported any significant post treatment problems as a result. I suggest you do the same.

The best thing to do would be to reschedule the 2nd to 5th sessions to every other day. If they can't do it immediately, I suggest you wait until they can. However, if you don't want to wait, then I suggest you skip the 2nd session and reschedule the 5th session to the next available date.

Good luck!

VascodaGama's picture
VascodaGama
Posts: 1519
Joined: Nov 2010

I agree with Swing's opinion on both counts. The need for an urologist is minimum and the radiation should be adminestered with longer intervals. Check for any error in the proposed schedule.

Good luck.
VG

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

I suggest you ask your radiologist to schedule you for sessions every other day and remind him of the work Dr. Chris King did at Stanford in the first CyberKnife study where they found that men who had their sessions every other day instead of consecutively experienced fewer instances of urinary irritation.

When I was discussing my CK treatment with my medical team I indicated my desire to have it done every other day based on the King study and my doctor readily agreed. I had absolutely no issues that resulted from my treatment.

Remember, this treatment is all about YOU not the convenience of the scheduling team at the center where you're receiving care.

Good luck and be sure to take along an iPod or something to listen to when you're on the table. I actually fell asleep during a couple of sessions.

K

viperfred
Posts: 20
Joined: Jun 2010

Agree you should ask your RO about your frequency concerns.

The early data from the study by Dr. King(I am in this study) did suggest that 48 hours lowered side effects. However data from the 4 day 9.5 Gy Extreme hypo fractionation (mimics HDR Brachytherapy) has no higher risk of side effects. HDR brachyterapy is delivered in 2-3 days. Many now feel the early results showing a benefit to the 48 hour interval was not due to the frequency instead was due to improved dose planning.

To date the published literature for the CyberKnife shows it has the lowest risk of side effects.

Good Luck.
Fred

hunter49
Posts: 199
Joined: Oct 2011

Good luck with your treatment. And awaaayyyyyy we go!!!!

jackiegleasonscores's picture
jackiegleasonscores
Posts: 24
Joined: Nov 2011

Caught onto the Jackie Gleason thing very astutely. Plus I just retired from driving MTA Bus. And then came the Gleason scores.

YTW's picture
YTW
Posts: 63
Joined: Apr 2010

Wayne: I agree with all of our "brothers" here. When I asked my RO about staggering my treatment to every other day, he agreed. MY Ck started on a Wednesday and followed on Friday, Monday, Wednesday & ended on the following Friday.

May I make one more suggestion? Before starting CK purchase some "Prep H" both is supositories & gell form. At about my third treatment, I experianced anal burning.
This cleared up within a week after the last treatment.

Best of luck..............................Jimmy/Cleveland

jackiegleasonscores's picture
jackiegleasonscores
Posts: 24
Joined: Nov 2011

It is great you all come back and help a newbie like me. Thank you all, keep up the good work. I hope I can do the same for others.

Two more hours before first teatment. Made some calls and intend to clear up further questions with RO and URO before treatment. I get great strength and direction from all of you.

jeffm5690
Posts: 2
Joined: Jan 2012

I wanted to wish you the best of luck -

A few things to ponder - the Urologist really does not play any role in the radiation delivery. There is no need for him to be there and does not get paid anyway so he probably wouldn't show up. Make sure your Radiation Oncologist is present thought the treatment. He does not need to be right outside of the room but legally must be on site monitoring the treatment. Finally - do not let them treat you without at least 20 hours in between the treatment. The schedule they have given you is unacceptable. There is plenty of data that shows daily Cyberknife treatments if performed properly will be effective and there should be minimal if any side effects. If they are treating every other day it is most likely due to experience or the fact that they are being very cautious. Either way I am sure you will do great!

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