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CyberKnife Treatment

CC52
Posts: 101
Joined: Nov 2013

As more men come here for help, I thought I would start a new thread for those considering treatment options. I see my RO this week for my six month follow-up following CyberKnife treatment last September.

I'm not here to advocate for any particular treatment option, CyberKnife included. Every man will have to make the decision that best fits their specific needs. I offer this as a way to assist those that are searching for answers to consider reviewing my story here: http://csn.cancer.org/node/264905

Best wishes,

CC

 

Swingshiftworker
Posts: 1013
Joined: Mar 2010

FWIW, I see no problem in advocating CK, if it's appropriate to the patient's circumstances, and I've had NO problem advocating CK when I thought it was appropriate to do so.  Ultimately, it's the patient's choice and, if they don't know about CK, we'd be remiss in not pointing it out.

CC52
Posts: 101
Joined: Nov 2013

I am aware that in reviewing other (older) threads and comments, there have been rather heated debates about recommending one treatment over another. That is my reason for the "qualifier".

So far, my results have been positive and I would encourage anyone that is a candidate for CK treatment to do their own research and decide if it's right for them.

Thanks for you input - valid point for sure.

 

tla316
Posts: 1
Joined: Apr 2015

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.

 

Uh_Oh
Posts: 17
Joined: Mar 2015

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.

mlevygm
Posts: 5
Joined: Jun 2015

Swingshift,

Hi there I hope all is well.

I wanted to follow up and share with the group that I completed my last Cyberknife treatment Tuesday September 8th.  So far all is well.  No real side effects except burning when I urinate however that was only early in the treatment.

I occasionaly feel a little fatigued, other than that life is very normal.  I wanted to thank all of you for your knowledge, wisdom and encouragement.  Your posts led me to do more research with regard the best treatment for me.  Please continue.  

If I can help anyone with their decision or provide some personal advice I am more than honored.  Thank you so very much.

I will report back and let you know my latest PSA results.  FYI - My last PSA in late May this year was - 6.8.

hopeful and opt...
Posts: 2224
Joined: Apr 2009

So far so good..........please post your PSA's, remember that there will be a bump, about 18 to 24 montrhs out.   

As the vet that you are now, please continue to post for the newbee's 

H

 

PS. I wonder if being fatigued is side effect of SBRT.

mlevygm
Posts: 5
Joined: Jun 2015

They did indicate that there could be some fatigue.  With my work I drive alot and sometimes late hours.  I usualy get through it well however just a little fatigue recently.  No big deal.  Feel better and better everyday.  Hope this helps.

Old Salt
Posts: 720
Joined: Aug 2014

My RO told me that I would be tired for several days after the Cyberknife sessions.

And I was; no big deal...

Swingshiftworker
Posts: 1013
Joined: Mar 2010

It's early yet, but I'm glad to hear "so far so good" with your CK treatment.  Please keep us up to date on your post--treatment progress.  Good luck & best wishes!!!

CC52
Posts: 101
Joined: Nov 2013

Very happy to hear things are going well. Please stay active with your updates - they are welcome and certainly helpful in providing more detail to the Cyberknife experience.

CC

YTW's picture
YTW
Posts: 67
Joined: Apr 2010

I went through CyberKnife treatment in 2010 and so far-so good. My RO advised me to stop taking any anti-oxident supplements (Vitamin A, Vitamin C and others)  His reasoning was that C K will kill cancer cells but anti-oxidents try to keep cells healthy & alive. 

I dont know if his reasoning was valid, but  why take the chance?  He advised me to stay off those supplements for about a month after finishing the treatments but I stayed off them for three months just to be sure. Just my 2cents worth.

 

                                                                                   Jimmy/Cleveland

schin
Posts: 9
Joined: Aug 2014

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.

CC52
Posts: 101
Joined: Nov 2013

Great to see the activity here. Thanks for the contributions, and I hope that we can continue to offer our stories and provide support to those that are considering treatment options.

CC

CJ613
Posts: 6
Joined: May 2015

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
Posts: 720
Joined: Aug 2014

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?

 

CJ613
Posts: 6
Joined: May 2015

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!

stoniphi's picture
stoniphi
Posts: 54
Joined: Mar 2015

...can take up to 3 years after the end of treatments to show themselves. They then subside over the rest of your life. Nerve damage of any kind takes a very long time to heal. I also have that fake urinary tract infection pain when I pee, must be very careful about passing gas and have exposive bowel movements. My hemorrhoids bleed much more than they used to.

 

I am 1 year and 10 months out from ~80 Gy of External Beam Radiation Therapy after Robot Assisted Radical Prostatectomy done Dec 2012. Also have been on Androgen Deprivation Therapy since Jan 2012.

 

The statistics say that the healthier your lifestyle is when coping with cancer the better your outcome will be. I had to make some lifestyle changes in order to deal with these issues, do not know yet if I have ED as the Eligard chemo won't begin to wear off for months yet. I am aware that both the surgery and the radiation put me at risk for ED.

 

My team put me on Cialis to keep my nitrogen oxide levels up and thus encourage nerve recovery. I run 7 miles a day 7 days a week which maintains good blood circulation in the affected areas. The urinary urgency problem has been fading, though not yet gone. I leak a little, but used the diapers, then the pads until I felt I could go without. That took time and effort. I have pretty much accepted my new bowel schedule and habits. I have had to change my daily schedule a lot to compensate for my challenges, but accept them as neccesary to preserve my life.

 

My experience is that the side effects get lesser as time goes by, but it does take a long time for some of those to fade. Yes, they leave out a lot of things they feel may discourage us when describing the treatments. I can't condemn the practice entirely though, as my surgery was moved ahead because the patient before me bailed and left the hospital at the last minute before his surgery.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3280
Joined: May 2012

 

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
Posts: 1013
Joined: Mar 2010

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!

hopeful and opt...
Posts: 2224
Joined: Apr 2009

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.

 

mlevygm
Posts: 5
Joined: Jun 2015

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.

Swingshiftworker
Posts: 1013
Joined: Mar 2010

If so, I am aware that Kaiser NorCal is apparently now using CK to treat PCa.  It wasn't when I was 1st diagnosed back in 2010, which is the reason I switched carriers to Blue Shield so that I could get CK at UCSF instead. 

While experience is essential in choosing a urologist/surgeon, I don't think it's as critical w/CK because the computer program basically does all the modeling and planning. Dr. Gottshalk, who is the head of the CK treatment center at UCSF, had only supervised around 50 PCa treatments before he did mine and there wasn't enough of a track record to determine a long term "success" rate.  He has since done over 200 CK PCa treatments w/no PCa recurrence but 4 patient experienced cancer that spread beyond the prostate despite the treatment.  However, he gave me enough info at the time for me to decide that it was worth the risk when compared w/surgery.

That said, the radiologist and technicians do need to have some experience in setting up and administering the treatment because it is NOT an entirely automated process.  For example, when I was being treated, the technician actually stopped the treatment when he SAW gas passing through my intestines which he decided would alter the course of treatment; he resumed the treatment after the gas passed farther down the GI tract. 

So, I'd ask the CK radiologist how many procedures they have done and what their track record has been to date but, if they haven't done many procedures, you'll just have to decide whether to "trust" them or not.  FWIW, when compared w/surgery (open or robotic), I think the risks you face undergoing CK are much smaller and would be worth the risk regardless.

Good luck!

mlevygm
Posts: 5
Joined: Jun 2015

Yes I was speaking to you.  Thank you for reply and insight.  I have decided to move forward with Cyberknife and will do it with DR. Millender at Kaiser So San Francisco.

As mentioned I was able to speak with Dr. Fuller who has met Dr. Millender and the team.  He had very high praise for them.  I am confident in my decision and Dr. Millender.

First ste is to schedule the gold implants, then the CT and MRi and then treatment.  I anticipate treatment to begin the week of August 24th.  I will keep you posted.  Thank you again.

Swingshiftworker
Posts: 1013
Joined: Mar 2010

Sounds good, Melvygm.  Looking forward to hearing from you again w/a report following the treatment.  Good luck!

mlevygm
Posts: 5
Joined: Jun 2015

I wanted to update you on the treatments I've received.

My final one is Tuesday the 8th.  I receved a total of 4 so far. I must tell you the staff at Kaiser So. San Francisco are tremndous.  I have also found out that they have done numeorus prostate/cyberknife treatments while they were at Stanford.  So excellent staff.

For anyone else considering Cyberknife...

There is daily prep during the treatment time.  It's a No Gas Diet.  Lean Meats - No Fiberous foods or anything that would cause Gas.  I have been very diligent in this and so far so good.

The only current occurence is burning when i urine.  I do not get up at night however urinate frequently during the day.  I also am drinking plenty of water.

Thank you again for your support.  I will continue to keep you posted.

Swingshiftworker
Posts: 1013
Joined: Mar 2010

Mlevygm: Are you receving more than 4 treatments?  If so that's a bit unusual for CK.  How many treatments in total will you receive?

After you're done, let us know what your post-treatment progress results (PSA test results) are.  Best of luck!!!

hopeful and opt...
Posts: 2224
Joined: Apr 2009

Good idea to have a Tesla 3.0 MRI before receiving treatment, since MRI can effectively identify seminal vesicle invasion, extracapsular extension and pelvic lymph node involvement. 

 

P.S. I know a man who had SBRT, did not have an MRI before, and as it turns our had extracapsular extension. He is now being treated by a medical oncologist.

JoseSF
Posts: 4
Joined: Nov 2015

Hello:

Just diagnosed, similar stats as yours. Kaiser is proposing either surgery or brachytherapy. I want to ask about Cybernife. Wondering how it has worked out for you now that it's been a couple more months. Also, did you have trouble getting the CK approved at Kaiser or was it relatively easy?

Swingshiftworker
Posts: 1013
Joined: Mar 2010

JoseSF: Please read my lengthy post on this topic in your "Looking for BT at Kaiser Roseville" thread here: http://csn.cancer.org/node/298217.

CC52
Posts: 101
Joined: Nov 2013

Greetings mle, thanks for your post. I'm sorry you've had to find us here, but please take advantage of the wealth of knowledge and personal experience of the members of this forum. 

I can't help you with the specifics of CK treatment in SF, but it seems Swing has some local knowledge.

I am fortunate to live on the east coast and have many treatment options available. I do believe that the technology (computer administered treatment once your specific plan has been developed by your RO and team) related to CK treatment limits the risk involved. And Swing is correct about the techs ability to interupt a session. Once you are positioned on the table for treatment (no restraint except across my ankles), you have to remain still. As the machine was repositioning for the next "shot", I felt the table move slightly. No word from the tech until afterward when I mentioned it, and she said I had moved. Might have been gasSealed?

Continue to research and self educate. That is key to understanding what will work best for you. 

Sincere best wishes as you move along,

CC

 

 

 

 

CC52
Posts: 101
Joined: Nov 2013

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

 

Old Salt
Posts: 720
Joined: Aug 2014

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
Posts: 6
Joined: May 2015

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.

stoniphi's picture
stoniphi
Posts: 54
Joined: Mar 2015

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.

CC52
Posts: 101
Joined: Nov 2013

I'm very sorry for what you're having to live with CJ. I've always felt that I was the one that drew the short straw when it comes to things like this. That whatever other's experienced - I was sure to have it worse.

Experiences such as yours shouldn't detract from what by all accounts is a safe and effective treatment, and that sometimes someone has negative outcomes. There are no guarantees. From what my study before deciding on CK indicated, RP has many more known and undesirable side effects.

My sincere hope is that you find your way to improvement, and you can go on with an acceptable quality of life.

My best to you,

CC

 

hopeful and opt...
Posts: 2224
Joined: Apr 2009

http://csn.cancer.org/node/291691

 

Dr. Katz, author of this study does 5 fractions for a total of  35- 36.25 Gy's There is some difference between practitioners , with reference to GY, who administer SBRT; most do five fractions, while some do four.

schin
Posts: 9
Joined: Aug 2014

I am now 9 months out from 5 CK fractions with Dr. Katz.  My PSA is down to 2.9 from 6.5, and I still have absolutely no side-effects whatsoever.

hopeful and opt...
Posts: 2224
Joined: Apr 2009

Of course a toast to you. Caifornia Red. Great numbers! Please keep on posting.

.........

 

Here is the thread that you previously posted.

http://csn.cancer.org/node/286579

 

 

 

Swingshiftworker
Posts: 1013
Joined: Mar 2010

Schin:  Glad to hear your CK treatment went well but it sounds like you have may have a slowing declining post-treatment PSA as I did. 

Took me 3 years after treatment (with some irregularities in between) for my PSA level to finally drop from 9.48 (3 months after treatment) to .995 (in June 2013).   It has continued to drop consistently for the past 2 years since then and is now at 0.232 (last test in June 2015).  Total of 5 years to reach this point.

So, if your PSA does not drop quickly; don't despair.  Give it time and it should all work out well in the end.  Good luck!!!

 

CC52
Posts: 101
Joined: Nov 2013

 

Comments/thoughts: 

 

Schin - that's great news for you. Slow and steady progress with declining PSA is a good thing. 

 

Mle - by the time you read this, you will have completed your final treatment. I trust that all went well, and that now you can relax and anticipate a positive outcome. 

 

SSW - In regard to your question about the number of treatments, I was under the impression that five was the normal amount. That's what I had, and it seems that others treated with SRBT always had five sessions. Did you have four? And what would be the determining factors for the RO to consider between four or five?  

 

Update on my progress - I am nearing one year since completing my treatment. A bit of an issue has developed over the past several months is increased difficulty with urination, particularly at night and with a full bladder. Also more frequent urination (every 2 hours) and mild discomfort (burning sensation and pressure) upon peeing. With this, I have difficulty getting flow started, but slowly improves as the bladder empties. Seems very similar to what CJ613 reported in earlier posts. I will certainly talk with my Dr. when I see him in a couple weeks. 

 

Take care all, I'll check in after my appointment - CC

hopeful and opt...
Posts: 2224
Joined: Apr 2009

CC52, Are you currently king any medication to help with urinary flow?

 

EDIT: I note from this thread that you had been taking Flomax. http://csn.cancer.org/node/264905?page=1

 

 What was the size of your prostate before treatment?, was it large?

 

Could be temporary side effects from the radiation, but your doc is the one to speak with.

CC52
Posts: 101
Joined: Nov 2013

 

 

 

H&O,

 

I stopped taking Flomax around the 1st of the year. Had no problems, things seemed normal. Up once per night to go. The recent changes of 2-3 times per night (every 2-3 hours) and the feeling of a very full bladder, difficulty with starting and emptying have sent me back for 4mg Flomax per day to see if that helps. I try to limit my liquid intake after dinner, which is around 6pm or so. Bedtime between 10-11p. Might be a bit early (3 days now) but the Flomax seems to have helped.

 

Prostate was measured at 4x5.6x4.8cm w/ volume of 53.2g.

 

I see the Dr in two weeks, and will discuss.

 

Thanks for checking in,

 

CC

CC52
Posts: 101
Joined: Nov 2013

My one year check-up on 9/25 went well... at least as far as the numbers go:

PSA came back at .4 ng/mL (.421 ultra sensative), and testosterone was 449 ng/dL . Definitely pleased about that.

Still having some issues with urination though. During the day, starting and flow is good, but with more frequency than usual. Sometimes, an hour or two between visits to the bathroom. Don't feel like I'm completely emptying every time.

Consultation with my RO is this can happen at about the one year mark, and I mentioned to the Dr. that I had already put myself back on Flomax. He agreed with that, and offered a steroid if I felt it necessary. I declined. I've upped my doseage now to two pills per day, so I'll see if that helps. I've also had some serious pain around the tip (shooting needle like symptoms) at times - mostly as I settle into bed at night. That really gets my attention!

I trust my RO's advice on what I'm experiencing - that it's not at all unusual, and that with more time (2-3 months) things should begin to settle out with a return to more normal habits.

CC

CC52
Posts: 101
Joined: Nov 2013

Followup to my most recent post:

From completion of CK treatment in September 2014, I'd had an uneventful eleven months. All seemed normal, with very good PSA numbers, urination and bowel function was good (different than pre-CK, but ok), and sexual function was satisfactory.

In late August, problems with urinating began. Increased frequency, a weak stream with difficulty starting (mostly at night and with a full bladder). With my one year check-up scheduled for September 25, I began 4mg Flomax 1x per day on 9/15. At my appt., my RO asked how I was managing and recommended going to 2x per day Flomax. He also advised that for some men, at about one year out from CK treatment this sort of thing happens. He asked if I felt I needed a steroid was necessary, but I told him I thought I could manage with just the Flomax.

About three weeks later, much more serious burning began upon urination. Very uncomfortable. Went for a urinalysis for a possible UTI - came back negative. Was given Phenazopyridine 200mg that coated the urethra to help ease the burning. That stuff turned my urine bright, almost flourescent orange. Weird. Anyway, with the negative on a UTI, I started the steroid (Dexamethasone, 2mg) for a two week cycle. That provided immediate relief. About the end of the second week, burning returned, and my RO ordered another two week round. That med kicked my butt. Very lethargic, extremely tired...not much of a desire to do anything. I worked every day, but came home exhausted and spent most evenings napping until bedtime. Wifey was more than a bit concerned, as were my coworkers.

While this was happening, I began developing a rash on my buttocks very similar to the shingles outbreak I had during my treatment in Sept 2014. Treating Dr thought it was some type of a herpes outbreak. Lab results indicated otherwise - a strep infection - that was then treated with an antibiotic. Completed that prescription yesterday.

Today, at long last, the rash is slowly clearing. I'm off the steroid for two weeks, and urination remains pain free. An occasional sting/burn randomly occurs. Continuing 2x per Flomax. 

I have no way of knowing how all this relates to my CK treatment - except to believe it is somehow connected. Meds and their side-effects, the rash and it's place in the mix is an unknown. All I know is that relief has come through time and meds - one or the other - or both.

All of this has had it's affect on me, but to this point I remain confident that CyberKnife remains atop the list of options that are available to those in the club.

I see my RO in March for my next scheduled appointment. 

CC

(footnote: there is a fellow on the Accuray site that is about 3 years out from CK, and he had very similar issues to mine recently. 

Swingshiftworker
Posts: 1013
Joined: Mar 2010

The only problem I had post-CK was the irregular PSA pattern which ultimately resolved itself.

I have ALWAYS had some frequency and urgency problems.  Had them before CK (actually that was the reason I was tested for PCa originally) and still have them post-CK.  However, I've never had any pain/burning sensation associated with it. 

I have been on Flomax (as well as daily dose 5mg Cialis and Oxybutynin, which are supposed ot help w/the problem too) for years but sometimes still have to "go" right away or more often than one might think, which is why I always carry a pee bottle with me in my car. 

At this point, I don't know whether this has anything to do w/my CK treatment or just my age (65) but it's not that big of a problem and I haven't mentioned it to my RO or my PCP since I was treated.  Will only do that if it gets significantly worse, since it has been manageable to date. 

 

 

CC52
Posts: 101
Joined: Nov 2013

SSW - 

The burning was mostly with urination, but a very sharp and painful stinging sensation at the head of my penis would hit me on occasion. It would definitely get my attention.

I haven't had any problems with urgency, only frequency. Every two hours or so, which for me is more than prior to CK. My main problem related to urgency has been on the other "end", and so far no accidents.

If things were to remain as they have been over the past couple of weeks, while not they way they were pre-CK, would be acceptable for me. Like pain thresholds, we all have unique personal limits as to what we consider tolerable. In spite of these recent setbacks, I'll remain optimistic about continued improvement overall. Unlike your experience, my PSA levels have declined steadily since completing my treatments, and I'm most pleased about that trend to date. Still prepared for a bump though.

 

 

 

 

 

Swingshiftworker
Posts: 1013
Joined: Mar 2010

CC:  The radiation reaction effects you describe generally happen much sooner (usually around 3-6 months) for people who experience them. 

This doesn't mean that the CK treatment isn't to blame for what you are experiencing; just that is seems to be out of synch when when one might normally experience them.  Usually at this stage 12-18 months out, it's the PSA bounce that you see, which doesn't seem to be happening to you yet. 

Whatever the case, I hope that your are able to sort out these problems w/the help of your physician as soon as possible.  Good luck and best wishes!

Billdonaldson's picture
Billdonaldson
Posts: 9
Joined: Apr 2017

after the one year point has anyone ever had a bout with prostatitis? Just curious as the prostate is basically  scar tissue. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3280
Joined: May 2012

Bill,

I have never heard this asked here before, and do not know the answer myself.  Share if you learn. I would suspect not, since as you noted, post-CK, the gland becomes a Kingsford briquette....

max

CC52
Posts: 101
Joined: Nov 2013

An internet search came up with this: https://www.cancer.org/cancer/prostate-cancer/treating/radiation-therapy.html.

From the link:

Urinary problems: Radiation can irritate the bladder and lead to a condition called radiation cystitis. You might need to urinate more often, have a burning sensation while you urinate, and/or find blood in your urine. Urinary problems usually improve over time, but in some men they never go away.                                           

Some men develop urinary incontinence after treatment, which means they can’t control their urine or have leakage or dribbling. As described in the surgery section, there are different levels and types of incontinence. Overall, this side effect occurs less often than after surgery. The risk is low at first, but it goes up each year for several years after treatment.                                                                                                                               

Rarely, the tube that carries urine from the bladder out of the body (the urethra) may become very narrow or even close off, which is known as a urethral stricture. This might require further treatment to open it up again.

I've had some problems with urination in the 3.5 years since my treatment, but nothing ever dx'd as protatitus.

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