CyberKnife Treatment

tla316 said:

CK

I have been just given my news and just looking for as much information that i can get to make the correct procedure for myself.  I am 50 with PSA OF 4.34 and glesson of 3+4+=7  All  I am s

looking for is information and out comes.  Just starting the process.  Thanks for any information.

 

Number of biopsy cores total and those positive, percentage of involvement, PSA numbers? And your location would be helpful, too.

Just to give you an example of my personal weirdness, my PSA has hit a high of 6.8, and a low of 4.85, has been hovering around in the 5s of late, and my Gleason was 3+3= 6, with 2 cores. I'll be 52 in August.

So, whatever you do, don't over stress!!! It doesn't sound all that bad.

I am 6 months out from treatment with CyberKnife with Dr. Katz in NYC.

As a 46 y/o with a Gleason 6, the treatment decision was very easy for me.  I did not want the side-effects and down-time involved with surgery, and CK offers outcomes that are equal or superior to surgery for guys with disease staging similar to mine.

So far I am delighted with my choice.  Immediately after treatment I had mild discomfort with bowel movements and urination that lasted for about two weeks.  I was told to expect that.  Apart from that I have had zero side-effects.  None.  No impotence, no incontinence, nothing.  

I had my treaments for about 30 minutes each morning for 5 days.  I did it during a week of vacation from work and after treament each day my wife and I ate, drank, and saw the sights in NYC.  I never had any restrictions placed on my activities and I worked out in the hotel gym while I was in NYC for treatment.  Bottom line is CK offered me success rates equal to surgery with basically no side-effects or interruption in my lifestyle so far.

At 6 months my PSA has dropped from 6.5 pre-treatment to 3.3, which is on the proper curve.  It should reach its nadir at 1-2 years.

Late side-effects and complications can occur with CK, but at this point there is no way I would go back and do things any differently.  I think if urologists were in charge of CK its use would be a LOT more widespread.

I chose CK for my Prostate cancer. I wish I would have done the surgery. It's 10 months later and I have almost uncontrollable bowels and urine. I have already peed myself a few times. If I can't find a bathroom, I'm in deep trouble. I also have a burned colon and I have to use a steroid foam, I think forever and ever. I am very uncomfortable. Forget about a good nights sleep. I get up every 2 hours to pee. I never can "fart", unless I carry a spare pair of underware. I heard about the 5% stuff. But, when it's you that's in that 5%, it sucks. Think very carefully. Cyberknife has not been around that long. Many doctors will recommend sergury for that reason alone. It's still your decision, but realize it's not 100%. And it is horrible to have no control over your bowels and urine. I feel like I should just stay at home so I don't get caught out in public in a bad situation. I will never rcommend CK to anyone. 

Old Salt said:

Sorry to read about your situation

Could you (CJ613) please give some specifics?

I gather you had the radiation some time in 2014

Where did you get your CK treatment and who was in charge?

How many sessions and how many Grays?

Empty or full bladder?

Any protection of the anal area?

 

I had my treatment at Winthrope in July 2014. Dr. Haas was in charge. They did insert some type of "goop" in my anus before each treatment. I had 5 treatments, 45 minutes each. I had no side effects until March of 2015. I haven't had a "normal" bowel movement since then. My penus is very painful at the head, all the time. When I pee, every 1 to 2 hours, it really hurts. My bladder is emptying and I do not have a UTI. I have an appt. this week with my urologist. I'm sure I have some sort of condition that all I can hope for is to keep it under control. They seem to leave out how bad the side effects are, if you happen to be that 5%. This is life changing, IMO. I think Winthrope used a too powerful dose of radiation. I had a 3+3 Gleason and a PSA of 3.8. My PSA is now 1.3. But now I have a future that probably involves diapers!

CJ613 said:

I had my treatment at

I had my treatment at Winthrope in July 2014. Dr. Haas was in charge. They did insert some type of "goop" in my anus before each treatment. I had 5 treatments, 45 minutes each. I had no side effects until March of 2015. I haven't had a "normal" bowel movement since then. My penus is very painful at the head, all the time. When I pee, every 1 to 2 hours, it really hurts. My bladder is emptying and I do not have a UTI. I have an appt. this week with my urologist. I'm sure I have some sort of condition that all I can hope for is to keep it under control. They seem to leave out how bad the side effects are, if you happen to be that 5%. This is life changing, IMO. I think Winthrope used a too powerful dose of radiation. I had a 3+3 Gleason and a PSA of 3.8. My PSA is now 1.3. But now I have a future that probably involves diapers!

CJ,

I'm very sorry what should have been a totally safe and effective treatment went so wrong.  I hope the issues can perhaps be resolved over time. Any man in your situation would be outraged; I certainly would be.

It won't help you to regret not having surgery, which has its own issues, including (rarely) dying on the table (approximately 1 in 1,000 RP patients die in the OR or within the following 30-day recovery time.  Very rare, but it does happen.   I had surgical removal of the prostate in January, but I too, like you,  have urethera pain, but also had it before surgery, so I cannot really blame it on the surgery. Who knows ?

I was run over by a car at the age of 30, and could walk again two years later.  Six years ago I was diagnosed with advanced, stage III lympphoma, and after six months of a five-chemo treatment, entered total remission.  Each of those five drugs has its own, severe side-effects, and I got most of them.  Some effects fade away, some do not.  I still cannot feel my hands or feet from the neuropathy.  I had no sense of taste for months.  I developed fibrosis in my lungs form one of the drugs, and may be getting congestive heart failure from another.  But, I am above ground, and see my wife and kids every day. I would do it again tomorrow if necessary. The oncologist told us going in that there was a very long list of treatment side-effects possible, and let us know that they are impossible to predict or prevent, and some go away, and some do not.  It is totally the luck of the draw.  But the side-effect of not getting treatment for Hodgkin's was dying, soon. 

I guess my point is that serious disease can have the life-changing effects you mention. Mine all did.  I hope yours clears, and that you are now cancer free forever.  Given how successful CK usually is, I would guess that you are,

max

.

Swingshiftworker said:

CK Negative Side Effects?

In the five years that I have been on this forum, you are the 1st person that I can recall who has reported a serious negative side effect as a consequence of treatment with CK.

While it is certainly possible that the mapping done prior to your treatment was faulty, the degree of problems that you report are highly unusual.  What you describe is more common for patients following surgery or failed IMRT/IGRT or BT treatment.  CK uses 3D mapping to the sub-mm level and it is specifically designed to avoid bladder, rectal and urethral damage.    It is also unusual, as a part of CK treatment, to put any "goop" in the patient's rectum prior to treatment.  Proton beam therapy is the only treatment that I know of that involves placing anything in the rectum prior to treatment. 

I don't mean to minimize your problems.  You are obviously suffering.  If your CK physician did not exercise properly care in administering the treatment, you can obvioulsy take legal action to recover "damages" for your pain and suffering.  This won't make you feel better physically but it may may provide for additional care and treatmet that you need.

Good luck!

There is a forum that specializes in cyberknife....as well as very informed lay people there are docs who post there.

Here is a thread that is worth reading

http://www.cyberknife.com/Forum.aspx?g=posts&t=5402#jumptobottom

This is a post at this thread that discusses side effects  of SBRT and strategies

"I think it is awful that so many ROs do not tell patients in advance what side effects may happen and what they can do about it if it does. It's scary to experience these SEs and not know if they are serious or unexpected.

I put together the following handout for men in my PC support group, which I cleared with my RO. I is my hope that he will hand it out in his practice. Please feel free to encourage your RO to use it. What to expect after prostate radiation Urinary, rectal and sexual side effects of treatment are usually mild and transient, although they may be worse if you are especially sensitive to radiation, are an older man, or had symptoms before you started radiation therapy. Some side effects described below may occur in many men starting anytime from a week to a month after treatment and continuing for weeks or months. The duration and intensity vary greatly between men. If any of those symptoms interfere with your day-to-day living, call your doctor. He may be able to prescribe medication that can help alleviate those symptoms. Urinary Total incontinence is uncommon. There may be some leakage or dribbling. Other common side effects are irritation, burning or bleeding while urinating, feeling like you have to urinate immediately even when you know your bladder isn’t full, having to wake up several times during the night to urinate, or having to urinate frequently during the day. You may pass small amounts of blood or blood clots; however, if you are bleeding copiously when you urinate, contact your doctor immediately. A rare but potentially serious side effect is urinary retention. If you find that you can’t urinate even though your bladder feels full, go to the Emergency Room of the nearest hospital immediately and tell them you are suffering from urinary retention. They must catheterize you to allow the urine to flow out. Rectal There may be a feeling like you have to pass a stool but you cannot, and this feeling may recur often. This is called tenesmus. You should be aware that that feeling is from inflammation in your rectum (proctitis), not from actual stool there, and if you strain, you may create hemorrhoids. You may have frequent bowel movements. There may be blood in your stools or blood may drip out. Hemorrhoids may occur. Sometimes stool may leak out, especially when you are passing gas. Stool may be loose, or it may be especially hard. If you have diarrhea for more than a few days, call your doctor. If the bleeding is copious, call your doctor. Sexual Semen will probably dry up soon after treatment, although there may be small amounts of fluid. Occasionally, you may see some blood in that fluid or a few drops of blood may drip out after orgasm. You may notice that, over time, erections are not as hard or as long-lasting. To protect the blood vessels supplying your penis with blood, your doctor may have prescribed Viagra or a similar medication. You should continue to take that medication for at least 6 months after the end of treatment, even though it seems like you don’t need it. Testosterone levels often drop following radiation, but may eventually return to normal levels. Because of this, you may notice a drop in the level of your sexual desire/libido. Some men experience difficulty reaching orgasm. If any of the symptoms are bothersome, you may want to consult with a doctor who specializes in Sexual Medicine.

...................................

I also am not familiar with anything being placed in the anus for SBRT of which cyberknife is one of the platforms.

CC52 said:

I'm sorry

for the complications your having CJ. I'd have to think that your check-ups with your RO would have resulted in some discussion about what you're experiencing and measures to improve/reduce these issues.

Have you talked with the RO, and if so, what has been the response?

Have you sought any opinions from your PCP or another specialist?

My experience to date (8 months out, post CK) are what I would describe as minor, and so far manageable, issues with soft bowel movements and urination difficulty with a full bladder. My RO maintains that the bowel problem will sort itself out in time. He also commented that higher fiber intake can lead to frequency and very soft stools. Could that be a factor for you?

I believe I read someplace about a type of jell or balloon inserted into the rectum prior to each CK treatment, but that wasn't done in my case. 

Given my experience, and that of others here and at the CyberKnife Forum (which I am a member of), something just doesn't add up. I am hopeful that the cause of your discomfort can be determined, and that relief will come your way in the near future. Keep us updated.

CC

 

I was going to recommend that CJ613 sees an experienced gastroenterologist to address the bowel issues. Although a connection with the CK treatment is possible, other causes for the gastrointestinal distress should be considered with the hope of providing a cure.

I was also going to ask what Dr Haas' take on all of this is, but I see that CC52 has brought that up as well.

CJ613 said:

side effects

I have gone back to Dr. Haas. He sent me to a colon/rectal surgeon. I was diagnosed via a colonoscopy, with colitis due to radiation. I was told the best I can hope for is control over this condition. A cure is very unlikely. I use a steroid foam plus some sort of suppository. I feel like I have to poop most of the time. My urologist told me that burning may subside or go away over time. The procedure to look into my bladder is very evasive and doesn't feel it's necessary. I use Visocare to try and control my urine. The onlt relief I get is, it seems, like for a few hours in the late afternoon, I feel normal. The mornings are the worst, forget about a good nights sleep. I was told a low fiber diet and no milk, except yogurt, will be better for me. Caffine and alchohol also are a problem. I love coffee and beer, not at the same time, so that sucks. The part that gets me angry, is the way the doctors just breeze over the possible side effects. They do mention it, probably to make it hard to sue them, but make it sound like a very rare occurance.

they don't want to frighten us with the possible problems and complications, especially if they are not frequent.

I have had to cut my normal coffe intake in half since my RARP Dec 2012. 1 more cup and I have problems. Same with the beer - not many and not often or I have problems. The colorectal....enthusiasm usually ends around 8 AM so I can go out for my morning run and not have difficulties most days. I have adjusted myself to these new schedules and have gotten used to the increased pain levels and discomfort. Hang in there, it will eventually get better.

I have stuck with my high fiber diet and dairy so I probably have made things a little worse in that respect, but I do not want to become constipated as that opens up a whole slew of other problems.

Swingshiftworker said:

CK Negative Side Effects?

In the five years that I have been on this forum, you are the 1st person that I can recall who has reported a serious negative side effect as a consequence of treatment with CK.

While it is certainly possible that the mapping done prior to your treatment was faulty, the degree of problems that you report are highly unusual.  What you describe is more common for patients following surgery or failed IMRT/IGRT or BT treatment.  CK uses 3D mapping to the sub-mm level and it is specifically designed to avoid bladder, rectal and urethral damage.    It is also unusual, as a part of CK treatment, to put any "goop" in the patient's rectum prior to treatment.  Proton beam therapy is the only treatment that I know of that involves placing anything in the rectum prior to treatment. 

I don't mean to minimize your problems.  You are obviously suffering.  If your CK physician did not exercise properly care in administering the treatment, you can obvioulsy take legal action to recover "damages" for your pain and suffering.  This won't make you feel better physically but it may may provide for additional care and treatmet that you need.

Good luck!

Hi there, I have seen you on numerous posts dating back quite some time.    I was diagnosed Mid May. PSA - 7.4 in April - In July - 6.9.  Out of 14 snips - Gleason - 3+3 in 3 and Gleason 4+3 in the other.  My diagnosis is intermediate risk.

I did want you to know that Kaiser is offering Cyberknife for Prostate at their Cancer Center in So. San Francisco.  I am a candidate for Brachytherapy as well.  I am leaining towards Cyberknife and have actually reached out to both Dr. Katz and Dr. Fuller.  Their opinion is Cyberknife is an excellent choice for my condition.  

My only concern is I will be one of a very few patients that Kaiser So. San Francisco will treat using Cyberknife or Trilogy.

Just wanted to get your thoughts or anyone else who wants to chime in.

Congratulations on your recovery.  I look forward to hearing from you.