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Choosing Cyberkife, awaiting insurance OK

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

After PSA scores of 6.2 and 8.1 in July and August, I went for the biopsy. It showed four out 12 samples positive with the highest percentage of 20% and the other 3 at 5-8%.
Urologist sounded like he was leaning towards IMRT for 45 days.
After a lot of reading, it seemed like the cyberknife procedure consisting of 5 days of treatment was a no brainer; much less time consuming, less invasive, and less side effects.
The oncologist says I am a good candidate with low PSA. Cure rate with the data of about 7 years of results is about 93%. The minor side effects happen in less than 5% of patients.
It seems the process of getting our insurance to cover the procedure takes about three weeks.
Anyone out there with any feedback on their experience with CK??
Does anyone feel this treatment is too aggressive?
By the way, I am 59 and in otherwise good health.

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

Jackie

As one who had CyberKnife at 59 I certainly don't feel this treatment is too aggressive. You don't mention what your Gleason scores are and it would be useful if you let us know what they are. CyberKnife is generally optimized for patients with low risk prostate cancer although many men have had it with Gleason scores in the 7s or even higher.

CyberKnife is not an aggressive treatment. It consists of four or five sessions depending upon the protocol your radiologist chooses to use. I recommend having treatment every other day instead of on consecutive days as early trials indicate that there is less urinary issues.

At 59 I was diagnosed with a PSA of 4.2 and 1 of 12 cores positive with 15% involvement. No abnormal DRE and no history of prostate cancer. Stage T1c. I researched surgery, proton therapy, IMRT, cyrotherapy, and active surveillance and ended up with CK as my first choice.

I had my treatment in June 2010 and had no side effects whatsoever. I did feel a bit of urinary urgency after the final treatment but I took some Advil to reduce swelling and had no more problems. Erectile function was never an issue.

The minor side effects you refer to involve urinary and bowel toxicity. If experienced, these usually pass within a few weeks. The doctor can prescribe Flomax which you can use if you begin to experience an urge to urinate more frequently.

Each of my sessions, taken every other day, lasted about 45 minutes. You just lay on a bed, listen to your iPod music, and keep your lower body still. (They will build a foam cast for you to lie in to stabilize the lower body)

After each session I returned to work and never experienced any fatigue or any other ill effects.

There are several CyberKnife threads if you scan back through the pages in this forum that I recommend you read.

Good luck to you.

K

p.s. I also recommend that you have the fiducials implanted via the perineum instead of using the trans rectal method. Less chance of an infection and less painful.

hopeful and opt...
Posts: 1313
Joined: Apr 2009

I thought that cyberknife was precise, and only for gleason 6. I know that you know a lot more about this than I do, can you please provide documentation or a source that I can access to show where cyberknife is used for a gleason 7.

Thanks

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

Ira,

CyberKnife for prostate cancer is now being used in a variety of situations. For example, one ongoing clinical trial I know about (http://clinicaltrials.gov/ct2/show/NCT00643617) indicates the following for inclusion criteria:

Inclusion Criteria:

Patient must be at least 18 years of age
Histologically proven prostate adenocarcinoma
Biopsy within 1 year of date of registration
Clinical Stage T1b-T2b, N0, M0
Patients belonging to one of the following risk categories:
Low Risk: CS T1b-T2a, Gleason Score 2-6, PSA < or = 10 ng/ml
Intermediate Risk: CS T2b, Gleason Score 2-6, PSA < or = 10 ng/ml or CS T1b-T2b, Gleason Score 2-6, PSA < or = 20 ng/ml or CS T1b-T2b, Gleason Score 7 and PSA < or = 10 ng/ml
ECOG performance status 0-1

Exclusion Criteria:

Clinical Stage T2c or greater
Prior prostatectomy or cryotherapy of the prostate
Prior radiotherapy fo the prostate or lower pelvis
Implanted hardware or other material that would prohibit appropriate treatment planning or delivery
History of an invasive malignancy other than basal or squamous skin cancers in the last 5 years
Hormone ablation for two months prior to enrollment or during treatment

Another ongoing study also includes Gleason 7 patients: http://clinicaltrials.gov/ct2/show/NCT00643994?spons=%22Accuray+Incorporated%22&spons_ex=Y&rank=4

Georgetown University is one of several medical centers now using CyberKnife for advanced prostate cancer treatment. See http://www.georgetownuniversityhospital.org/body.cfm?id=555884

My radiologist has recently told me that CyberKnife is becoming fairly routine for men with both low rip and intermediate prostate cancers. Many of the trials have limits on Gleason score (usually less than or equal to 7) and PSA limits of 10 but I was told that most men who are treated are not part of a clinical trial.

K

p.s. One interesting thing about clinical trials. Most state laws stipulate that if you are accepted for a clinical trial in the treatment of cancer, insurance companies must provide coverage.

http://www.cancer.gov/clinicaltrials/payingfor/laws#Anchor-Overvie-48605

hopeful and opt...
Posts: 1313
Joined: Apr 2009

I can understand treatment for low volume gleason 7 cancer, and have come across a clinical study ; however, I didn't notice information showing results for greated volume gleason 7 cancers. It's very possible that I am missing something?

mrspjd
Posts: 693
Joined: Apr 2010

Ira,

You pose some very good questions about CK (aka SBRT) and similar questions have come up before in another thread. If you haven’t already seen it, the following info in previous posts may be helpful in regard to SBRT/CK tx for low to intermediate risk PCa, especially disease that is "believed or suspected" to be prostate/organ confined with no ECE (extra capsular extension):
http://csn.cancer.org/node/224205#comment-1117606
http://csn.cancer.org/node/224205#comment-1118071

Best,

mrs pjd

hopeful and opt...
Posts: 1313
Joined: Apr 2009

I wonder what others think of this procedure, and how it compares to active surveillance and other treatments including cyberknife for very low level disease.

Here is one study that was done, this are various clinical studies and some do this procedure.

http://www.ncbi.nlm.nih.gov/pubmed/21675840

I tend to think that as image for prostate improves and biopsies become more sophisticated, this technique will more often be used as a treatment.

mrspjd
Posts: 693
Joined: Apr 2010

Thanks for sharing the link about FT (Focal Therapy) for use in treating PCa. IMO, the last few sentences of the peer-reviewed abstract sum it up quite well re all FT’s and their potential appropriateness with regard to treating low to intermediate (moderate) risk, suspected organ confined PCa:

“Data for FT in PCa have been derived from case series and small Phase I trials, with larger cohort studies with longer follow-up having only just commenced. More data from large trials on the safety and efficacy of FT are required before this approach can be recommended in men with PCa. Importantly, studies must confirm that no viable cancer cells remain in the region of ablation. FT might eventually prove to be a 'middle ground' between active surveillance and radical treatment, combining minimal morbidity with cancer control and the potential for retreatment.”

Swingshiftworker
Posts: 634
Joined: Mar 2010

According to the abstract: "Focal therapy (FT) is another organ-preserving strategy applying energy (cryotherapy, laser ablation and/or high-intensity focused ultrasound) to destroy tumors while leaving the majority of the organ, surrounding tissue and structures unscathed and functional."

So, it's not one particular type of treatment but one of a number which apparently are used to focus only on the tumor thereby leaving the remainder of the prostate intact. Not sure how they can do this because I don't think they can pinpoint the location of the cancer that precisely.

I don't know what laser ablation is and don't don't know how effective it is, but I assume that it's a method of applying heat in the form of of a laser beam at a particular location in the prostate. I assume that the laser beam can be very precisely focused, but how well the tumor and any rivulets can be identified is the question.

I've heard a lot about Cryotherapy and all of it has been bad -- resulting in the greatest likelihood of collateral tissue damage leading to ED and incontinence. So, that would be a no-go for me regardless of the ability to locate and focus on the tumor.

On the other hand, a lot of people are turning to HiFu for PCa treatment with reported success. However, I believe that the HiFu specialists are applying it to the entire prostate (as is done w/CK) but again I don't know how you can properly identify the source of the cancer w/sufficient precision in order to negate any doubt about whether "all" of the cancer w/in the prostate has been treated. As it was explained to me, that's why ALL of my prostate was treated w/CK.

An endorectal MRI and MRSI can be used to identify the locus of PCa with some precision if the mass is of sufficient size, but it cannot find it all -- particularly the rivulets of cancer extending (if any) extending from the mass. So, I really question whether focal therapy is really a suitable adjunct to Active Surveillance in lieu of full (rather tha focal) treatment of the prostate w/CK, HiFu or other less damaging treatment methods.

hopeful and opt...
Posts: 1313
Joined: Apr 2009

I agree that there can be cancerous cells in other parts of the prostate that are not identified, that can grow.

Also there are men who have focal, and that is all that is required.

I don't know what the likelyhood is of each of the above two events.

I don't know if laser can be redone, or which other treatment can be done if the cancer progresses from the other parts of the prostate.

It seems appropriate for a man to be closely monitored if he has has had focal therapy.

In my opinion as technolgy improves, this will be a preferred treatment since it is less invasive

Swingshiftworker
Posts: 634
Joined: Mar 2010

H&O: You may want to blank out your dup posts. Can't delete them yourself as far as I know. Assume the sysop can do it but I've never tried to reach him/her to do so.

FWIW, I've inadvertently done the same thing -- hit the submit button multiple times -- when the system seemed non-responsive and ended up w/the same result.

mrspjd
Posts: 693
Joined: Apr 2010

According to the PCRI website, focal therapy is defined as: “a more localized treatment directed at the cancerous foci within the gland, rather than removing or destroying the entire prostate.”

The new book: “Focal Therapy in Prostate Cancer” Hashim Uddin Ahmed, Manit Arya, Peter R. Carroll, Mark Emberton; John Wiley & Sons, 2012, is described as: “This book comprehensively reviews the potential of focal therapy and discusses why the changing face of prostate cancer warrants a change in the way we treat men with the disease. It deals with the mechanisms by which disease can be localized within the gland and then the different technologies used for focal ablation. Bringing together eminent contributors in one accessible reference, this book introduces focal therapy to all urologists, oncologists, and radiologists who are involved in the treatment of men with prostate cancer.”

Pages 129 and 130 of the book reference CK/SBRT, in addition to other modalities, for it’s ability to also tx PCa as a focal therapy to the prostate; other pages are pretty interesting too, and newer diagnostic imaging tests are in the works to better identify precise tumor locations.

http://books.google.com/books?id=j2Jsojk7oUEC&printsec=frontcover&source=gbs_ge_summary_r&cad=0#v=onepage&q&f=false

Here’s another (older) interesting link “Focal therapy for localized prostate cancer: a critical appraisal of rationale and modalities.”
http://www.ncbi.nlm.nih.gov/pubmed/17936815
Eggener SE, Scardino PT, Carroll PR, Zelefsky MJ, Sartor O, Hricak H, Wheeler TM, Fine SW, Trachtenberg J, Rubin MA, Ohori M, Kuroiwa K, Rossignol M, Abenhaim L; International Task Force on Prostate Cancer and the Focal Lesion Paradigm. Abstract PURPOSE: Based on contemporary epidemiological and pathological characteristics of prostate cancer we explain the rationale for and concerns about focal therapy for low risk prostate cancer, review potential methods of delivery and propose study design parameters.

hopeful and opt...
Posts: 1313
Joined: Apr 2009

.

hopeful and opt...
Posts: 1313
Joined: Apr 2009

.

hopeful and opt...
Posts: 1313
Joined: Apr 2009

I agree that there can be cancerous cells in other parts of the prostate that are not identified, that can grow.

Also there are men who have focal, and that is all that is required.

I don't know what the likelyhood is of each of the above two events.

I don't know if laser can be redone, or which other treatment can be done if the cancer progresses from the other parts of the prostate.

It seems appropriate for a man to be closely monitored if he has has had focal therapy.

In my opinion as technolgy improves, this will be a preferred treatment since it is less invasive

mrspjd
Posts: 693
Joined: Apr 2010

.

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

Thanks everyone. Left out my gleason scores which were no higher than 6.
SwingShift, I too notice ejaculate down by I'd say two thirds since biopsy. Could biopsy 5 weeks ago had that much effect? Still light blood in ejaculate but was told to expect that. Also seem to be experiencing what I can only describe as strains around the penis base area. Am I imagining this? All this after only a biopsy?

hopeful and opt...
Posts: 1313
Joined: Apr 2009

Based on your biopsy results, I would consider active surveillance as a treatment option. It may be that you have an indolent cancer, that is not likely to spread, so an ative treatment may not be necessary. I suggest that you see a doctor that specializes in this treatment option, preferably at a major center of excellence. I have been doing this for since, 3/09. You may click my name to see what I have done.
As far as PSA which is an indicator only, I wonder if you have any other data points that you can provide?

Also I wonder what the size of your prostate is? There is ratio psa/prostate size the lower the better.....0.15 or better.

I also suggest that you have an endorectal MRI (combined with a spectroscopy) to see if there is extra capular extension, stage your cancer, see if there is an indication of cancer in one lobe or two and how much cancer.

Did you have a second opinion from an independent expert pathologist on your biopsy slides...........this is of the upmost importance....it is CRITICAL.

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

This post on
Active Surveilance is actually related to my first initial post regarding Cyberknife being to aggressive an approach at this point.
Thankks Hopeful, my initial post also contains gleason scores and amount of cancer after biopsy.
PSA 8 relative to 51 cm prostate size is around 0.15 ratio you mentioned, I think.
MRI scheduled for Dec. 30.
Cyberkinfe to begin January 3, 2012.
I am going to click on your name and see how you are progressing.
I am nervous about if I am doing the right thing here. Uroligist says velocity of PSA is the reason to go ahead with active treatment. psa 6 in July and psa 8 in August.

hopeful and opt...
Posts: 1313
Joined: Apr 2009

I understand that the biopsy is the critical test. The PSA is an indicator only. It may be that you have an infection that caused the rise, or you had sex, rode a bike, had a hard stool before the PSA. Your doc can treat you for the infection and then do another psa.

In my opinion, it may be possible that you have an indolent cancer, not likely to spread, and you do not require an active treatment.

Swingshiftworker
Posts: 634
Joined: Mar 2010

Other than infection, blood in the ejaculate is the most common problem following a trans-rectal prostate biopsy. The bleeding usually resolves itself, as it did in my case and fortunately didn't have any infection -- the cirpo they gave me to take before and after the procedure worked.

Wasn't aware of this before but a quick Google search also revealed that a biopsy can also damage the ejaculatory duct thereby reducing ejaculate. Didn't have that problem myself but this may be the problem you are experiencing which "should" also resolve itself before treatment.

See the following for a brief discussion of the issue:http://www.medicalnewstoday.com/releases/112975.php

I did not experience any pain or discomfort following my biopsy but others have reported otherwise. So, some "strains" around the base of your penis (near where the prostate is located) would not be unusual. After all, the urologist just poked 12 holes through your rectum and into your prostate.

However, you should not be experiencing any significant pain or bleeding; pain is often associated w/infection. Listen to your body and, if anything, unusual is happening return to the doctor (or emergency room) ASAP to get an assessment of the problem.

Good luck!

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

After about 8 weeks blood in semen vanishes and ejaculation contains more fluid.
Still feeling some minor aches around groin area and also oddly feel tired in knees and legs a lot lately. Probably my imagination.
Treatment set up for cybe knife starts this week.
Of course Christmas season is upon us and my company has privatization changeover on Jan 1. I may choose to retire. So much at once is a bit overwhelming.

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

Jackie, eight weeks is about right for hematospermia (blood in semen) to clear up after a biopsy. Enjoy it while you can. In the several months following CK you can expect that the volume of your ejaculate to decrease. My experience seems to be similar to others who have undergone this treatment. It doesn't go away it just decreases in volume. No effect on ability to achieve and maintain an erection or orgasm.

Swingshiftworker
Posts: 634
Joined: Mar 2010

IMHO, you made the best choice for the treatment of low risk PCa. It is, as you have said, really a "no brainer." CK is the most precise method of treating CK currently available and is definitely not TOO aggressive, given its effectiveness and the lower risk of significant side effects associated w/its use.

I had CK in Sept 2010 at UCSF (but made the decision to go w/CK in April 2010 only 3 months after I was diagnosed w/PCa). Had to wait until July 2010 in order to switch from Kaiser to Blue Shield on order to get CK and then had to wait 3 months to get a place in the machine.

No urinary or bladder irritation and no ED. The reason my PCa was discovered in the first place because of my complaints about of urinary frequency which I thought were just due to BPH (an enlarged prostate). The frequency was not increased or decreased by the treatment and I still have to pee with some frequency. So, there's really been no change in that regard.

The only noticeable effect of the treatment has been reduced ejaculate volume, which is to be expected with all forms of radiation treatment. Still have some but very little ejaculate. Don't know if there's still any fertile sperm in it, but the limited ejaculate makes impregnating anyone extremely unlikely. So, if you want to have an more kids of your own, you should bank your sperm before treatment.

I was rated at Stage T1c and Gleason 6 (3+3). Only 1 core (less of 0.6 mm involved). My PSA was only at 4.5 before the biopsy in Jan 2010, spiked to 29.7 after the biopsy and fell to 5.9 in June 2010 before the treatment. Didn't take (but should have taken) another PSA test just before the treatment to get a more accurate baseline. My PSA has continued to vacillate following treatment from a high of 12.30 in Dec 2010 to a low of 3.03 in Mar 2011 then back to 5.07 in June 2011 then back down to 3.56 in Sept 2011. Needless to say the variability and relatively high continuing level of my PSA scores is disconcerting.

There are studies that indicate that a reassessment to determine if the treatment has failed is mandated if the PSA level does not drop to between 1-1.5 two years following treatment. That'll be in Sept 2012 for me and, if my PSA level does not drop to that level by then, I'll be asking for an endorectal MRI and a MRSI (magnetic resonance spectroscopic imaging screening to determine the then current status (and location, if any) of the PCa.

Others, like Kongo, have had much better success w/their PSA testing and have achieved PSA scores below 1 within 3-6 months following treatment. Hopefully, you'll have the same experience as they have but don't be surprised if you don't.

Good luck!

robert1
Posts: 82
Joined: Apr 2011

Hello jackie:

Given your low risk staging, you have the world of choices at your disposal. I assume you checked out PBT, IMRT and Brachytherapy also. CK is documented as a solid choice for true low risk patients. Impressive cure rate stats with relatively low side effects.

Good luck!

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

Starting initial set up procedures this week. Winthrop university hsopital, LOng Island

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

Starting initial set up procedures this week. Winthrop university hsopital, LOng Island

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

Thanks for great feedback SSW and K and all others. Finally the insurance coverage was Ok'ed after three weeks.
K says the perineum insertion of fiducials is the best. Any more feedback out there from you gentleman on that topic?

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

The only other thing I would suggest at this point is to have the treatment done every other day versus on consecutive days. Early studies showed that this protocol has fewer issues with temporary urgency following treatment.

Good luck to you.

K

Swingshiftworker
Posts: 634
Joined: Mar 2010

That's great, Jackie.

Where are you going to have the CK done?

I had my fiducials placed the "normal" way -- transrectally -- w/a prescrption of cipro to be taken afterward and had no problem BUT there is a least one guy here that developed a major infection following the transrectal placement of his. So, there's a risk (the same risk that exists at the time of a biopsy).

If you're worried just ask for the perineal insertion. Not sure if it can be done in the office or whether a special surgical session has to be set up (like for a HDR BT). Just ask and see what they tell you.

Good luck!

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

Thanks for feedback. Mold on Tuesday, fiducials on Thursday. I am going to Dr. Haas at Winthrop Universiy Hospital in Mineola, Long Island NY

Ok I will ask about placement method. I tend to get timid about asking questions feeling to change procedures now will inconvenience people. I know that is just me and I got to get over it regarding this serious survival issue.

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

Jackie,

A transrectal placement is all about convenience for the urologist not you. Think about it...why would you insert a device in your prostate after first passing it through feces? To avoid infection you are given antibiotics and in most cases it works but some tests show that nearly 100% of men who have a transrectal biopsy or other transrectal procedure have pathogens in their bloodstream afterward. Most of the time the antibiotics take care of it but not always. One poster here who had CK treatment developed severe infections requiring hospitalization and delay in treatment.

Not only are you paying for this procedure, you are an informed patient. Your medical team at Winthrop should be able to accommodate whatever your personal desires are.

Good luck.

K

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

It's your life, your body, your checkbook, YOUR decision...period!

Randy

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