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Newly diagnosed - is CK for us?

Julielynn0501
Posts: 12
Joined: Dec 2017

My husband was diagnosed with PC in July.  PSA:  April 10.4, July 14.7.  BX:  Gleason's 7 (3+4) in one of 4 cores 30% of total tissue, 7.1MM.  I hope this is enough info.  Scheduled surgery for January but then learned about CK.  Was not told about that option by oncologist.  He is a "young age 60" according to doctors so that's what led us to think surgery.  Just met with local CK doctor and we are very interested.  Any thoughts/ideas on his treatment would be very appreciated.  Too much to choose from - we are apparently right in the "middle" of all treatment options.  Thanks.

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Dear Julielynn, I'm sorry that your husband has been diagnosed and that you need to post here, however we at this board can provide information to you that will be very useful. 

First, discussion of your case:

I wonder if any other diagnostic tests were done for your husband, ie T3 multiparametric MRI, PET scan, etc.

What did the Digital Rectal exam(finger wave in the anus) reveal?

Your husband"s  PSA is high. I wonder the size of his prostate since larger prostate lay on the uretha and secrete more PSA. At any 

 the urologist only biopsied four cores, perhaps because your husbands PSA is high, and he simply wanted to confirm? However a standardtwelve core biopsy that is generally done would reveal more information.I strongly recommend that your husband obtain image tests to seee if there is extracapsular extension, that is if the cancer has escaped the prostate....to start,  ask for a T3 multiparametric MRI which may show extra capsular extenstion....this is critical to treatment decision...if the cancer has escaped, localized treatment would need to be supplemented with hormone treatment.........Also another image test if necessary is a PET scan.

Second, SBRT (Cyberknife)

I was diagnosed nine years ago and am currently simply being monitored with treatment if necessary, so I have studied treatment for this beast extensively, and SBRT would be my choice over the other localized treatments to include but not limited to surgery since cure rate is similar with significantly less side effects. There are various machines that deliver SBRT. The cyberknife machine is one of them;   there is also Novalis, etc, etc.

The perimeter of treatment can be changed to treat outside the perimeter of the prostae in in cases where the chance of extracapsular extension exists as in your husbands case...there would be a equal chance of cure with SBRT versus surgery with less side effects. Of all the localized treatments surgery has the greatest chance of major side effects to include but not limited to erectile dysfunction and incontinance.

Here is nine year study of SBRT, cyberknife for your edification, that provides cure rates and potential side effects

https://prostatecancerinfolink.net/2016/01/06/nine-year-outcomes-after-treatment-with-sbrt/

Please feel free to ask questions, we are here for you

 

Julielynn0501
Posts: 12
Joined: Dec 2017

Thank you SO much for your comment.  His prostate is Not enlarged.  DRE normal.  He had a bone scan - normal.  Did not have the MRI thing or PET scan.  From what they tell us the cancer is contained in the prostate.

 

The BX included 11 cores as far as I can tell - I just didn't list everything - only the cancerous ones? the #1 was "one of four cores (approx 30% of the total tissue, 7.1 MM in total linear extent) which was the 7 (3+4).  Also a Gleasons 6 (3+3) "one of three cores approx 5% of the total tissue, 1.0 MM in total linear extent".  

 

He is having another PSA test in the morning to see if it has risen to exclude him from the "intermediate" stage eligible for CK.  This whole thing pretty much confounds us because there are too many treatment options.

 

Since we originally scheduled surgery for Jan 5 they are calling to do the MRI and pre-op stuff and we are not quite ready for that and wondering if we should at least postpone the surgery.  I guess the PSA results will play a big factor in that.

 

We read the paper in your link and it's very informative.  We have listened to Dr. Katz and watched several utube and podcasts.

 

We really appreciate your comments and contributions!

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Prostate cancer is very slow growing, so you have time to make a decision that you are comfortable with. Any treatment that you rush into without proper diagnostic tests and knowledge is irreversible and can lead to a life time of regret.

PSA level is affected by various factors; sex, bike riding  before the blood test,  even a hard stool raises the PSA, so please no beautiful nights,  immediately before the test. The radiation oncologist have criteria for administering the treatment....I think, but I am not certain that look for a PSA under 10.

Be aware, PSA's are an indicator only, and not diagnostic.

One generally looks for the ratio of cancerous cell among those that were sampled. Since your husband had 11 cores sampled ,his case is less serious than if there were only four cores sampled.

Strongly recommend that you obtain a second opinion of the pathology found in the biopsy be a world class expert organization. There is a difference among pathologist in skills and facilities ravailable. Since all treatment is based on this, in my opinion this is very very important to follow through on. Johns Hopkins is an world class expert facility. If you have to pay out of pocket the cost will be about 250, but hopefully medical insurance will pay.

The doctors who tell you that it is contained did not do any diagnostic testing and are guessing.

The T3 MRI that I suggest, uses  the most powerful magnet in clinical use and provides definition of the prostate and surrounding area which may show extracapsular extension, that is if the cancer has escaped the prostate. If the cancer has escaped the prostate surgery or any other localized treatment will not be effective and future treatment will be necessary. The side effects of multiple treatments are cummulative.

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

 

There is an MRI scan for prostate cancer that is very effective in indicating if there is any nodule involvement, if there is involvement in one or two lobes, will show size of prostate, may show evidence of extracapular extension, will stage the disease. An MRI with the 3.0 Tesla magnet, is the gold standard. There are certain major hospitals that have MRI machines with a 3.0 Tesla magnet. 


In my layman’s opinion it is advisable to have such a test before any treatment. If the cancer is outside the prostate you may wish to reconsider a treatment decision.

Basically the MRI provides finer resolution than the bone and cat scans, and is more effective in determining if the cancer is outside the prostate.

An MRI T3 will do the job for you.

here are some studies from pubmed about mri's and a high tech pet scan

multiparametric mri t3 

The impact of Magnetic Resonance Imaging on prediction of extraprostatic extension and prostatectomy outcome in low-, intermediate- and high-risk Prostate Cancer Patients. Try to find a standard.


http://www.ncbi.nlm.nih.gov/pubmed/26154571



The impact of multiparametric pelvic magnetic resonance imaging on risk stratification in patients with localized prostate cancer.


http://www.ncbi.nlm.nih.gov/pubmed/24785987



Preoperative 3-Tesla multiparametric endorectal magnetic resonance imaging findings and the odds of upgrading and upstaging at radical prostatectomy in men with clinically localized prostate cancer.
http://www.ncbi.nlm.nih.gov/pubmed/23040223

 

Julielynn0501
Posts: 12
Joined: Dec 2017

Wow!  You certainly have done your homework - had no idea about this.  Yes, I think we need to cancel the surgery for now so we can research and test more.  Appreciate your help!

Julie

VascodaGama's picture
VascodaGama
Posts: 3041
Joined: Nov 2010

CK could be your choice depending on gathered information. Any treatments for PCa must be chosen according the status of the patient not just age. Surgery or radiation may eliminate the issue but it may also deteriorate the quality of life of the patient so that one must educate on the matter before deciding. No one treats the PSA but the cancer so that vital information leading to a conclusive diagnosis should be gathered for judgment. I wonder about any other health issue he may have. For instance, ulcerative colitis could restrict the type and location of radiation therapy. In regards to surgery, if the cancer is not whole within the gland then one risks recurrence latter so that it should be avoided in the presence of extraprostatic extensions, unless one is dissecting the gland with debulking intent.

I hope you have all needed information in hand to decide. This is in fact a difficult period when we do not know the particulars. Feeling confident and trusting the doctor is a positive step in this difficult period.

Best wishes and luck,

VG

 

Julielynn0501
Posts: 12
Joined: Dec 2017

Thanks so much for your input!  He has no medical issues other than high BP.  Healthy, not overweight, etc.  They are saying the CA is contained in the prostate.  Do not recommend watchful waiting for him due to his age (60) and history (father had PCa).

 

Julie

1005tanner
Posts: 29
Joined: Dec 2017

Have been recently told have a 3+3 =6 glesson and t2a tumor Surgery or active survelance were my choices as if radiation given first its very hard to go back with any success. Good Luck 

Age and health are the biggest factors in surgery.

Swingshiftworker
Posts: 1013
Joined: Mar 2010

I was successfully treated w/CK 7 years ago. Some PSA irregularities in the firs few years but am now cancer free and had no side effects whatsoever during treatment or recovery.  A number of other men on this website have had a similar experience.  I highly recommend the procedure if your husband is eligible for it.

I was one of the earliest adopters of this treatment method and chose it over surgery and brachytherapy, which were the only other choices known/available to me at the time.

Just so you have a complete perspective on your treatment choices, I will also post my "Choices to Consider" message that I have previously posted in other threads to inform new PCa patients about their treatment options.  The reasons for my preference for CK are made clear in this message.

PS: Tried posting my "Choices to Consider" message here but it got "flagged" for review.  In case it doesn't get posted here, you can find it this thread: https://csn.cancer.org/node/313160

Swingshiftworker
Posts: 1013
Joined: Mar 2010

The following is a duplicate of one that I have posted in various threads on this forum to give men newly diagnosed w/lower risk prostate cancer (Gleason 6 or 7) an overview of the treatment options available to them.

Anyone newly diagnosed with prostate cancer rated Gleason 6 (and usually Gleason 7) has all treatment options available to him and, since this cncer is considered "low risk", he has time to decide which choice is best for him.  So, the first thing a new prostate cancer patient should do is to do research on the available options before he actually has to make the decision regarding which treatment to choose.

The following is my response to other men who asked for similiar advice about the treatment choices avilable to them.  It's a summary of the available treatment options and my personal opinion on the matter.   You can, of course, ignore my opinion about which treatment choice I think is best.  The overview of the choices is still otherwise valid.

. . .  People here know me as an outspoken advocate for CK and against surgery of any kind.  I was treated w/CK [7] years ago (Gleason 6 and PSA less than 10).  You can troll the forum for my many comments on this point.  Here are the highlights of the treatment options that you need to consider:

1)  CK (SBRT) currently is the most precise method of delivering radiation externally to treat prostate cancer.  Accuracy at the sub-mm level  in 360 degrees and can also account for organ/body movement on the fly during treatment.  Nothing is better.  Accuracy minimizes the risk of collateral tissue damage to almost nil, which means almost no risk of ED, incontinence and bleeding.  Treatment is given in 3-4 doses w/in a week time w/no need to take off time from work or other activities.

2) IMRT is the most common form of external radiation now used.  Available everythere.  Much better accuracy than before but no where near as good as CK.  So, it comes with a slightly higher risk of collateral tissue damage resulting in ED, incontienence and bleeding.  Unless things have changed, IMRT treatment generally requires 40 treatments -- 5 days a week for 8 weeks -- to be completed.  I think some treatment protocols have been reduce to only 20 but I'm not sure.  Still much longer and more disruptive to your life than CK but, if CK is not available, you may have no other choice.

3) BT (brachytherapy).  There are 2 types: high dose rate (HDR) and low dose rate (LDR).  HDR involves the temporary placement of rradioactive seeds in the prostate.  CK was modeled on HDR BT.  LDR involves the permanent placement of radioactive seens in the prostate.  1/2 life of the seeds in 1 year during which time you should not be in close contact w/pregnant women, infants and young children.  The seeds can set off metal/radiation detectors and you need to carry an ID card which explains why you've got all of the metal in your body and why you're radioactive.  Between HDR and LDR, HDR is the better choice because with LDR, the seeds can move or be expelled from the body.  Movement of the seeds can cause side effects due to excess radiation moving to where it shouldn't be causing collateral tissue damage -- ED, incontinence, bleeding, etc.   Both HDR and LDR require a precise plan for the placement of the seeds which is done manually.  If the seeds are placed improperly or move, it will reduce the effectiveness of the treatment and can cause collateral tissue damage and side effects.  An overnight stay in the hospital is required for both.  A catheter is inserted in your urethra so that you can pee.  You have to go back to have it removed and they won't let you go until you can pee on your own after it's removed.

4) Surgery -- robotic or open.   Surgery provides the same potential for cure as radiation (CK, IMRT or BT) but which MUCH GREATER risks of side effects than any method of radiation.  Temporary ED and incontinence are common for anywhere from 3-12 months BUT also sometimes permanently, which would require the implantation of an AUS (artificial urinary sphincter) to control urination and a penile implant to simulate an erection to permit penetration (but would not restore ejaculative function).  Removal of the prostate by surgery will also cause a retraction of the penile shaft about 1-2" into the body  due to the remove of the prostate which sits between the interior end of the penis and the bladder.  Doctors almost NEVER tell prospective PCa surgical patients about this.  A urologist actually had the to nerve to tell me it didn't even happen when I asked about it.   Don't trust any urologist/surgeon who tells you otherwise.  Between open and robotic, open is much better in terms of avoiding unintended tissue cutting/damage and detection of the spread of the cancer.  Robotic requires much more skill and training to perform well; the more procedures a doctor has done the better but unintended injuries can still occur and cancer can be missed because the doctor has to look thru a camera to perform the surgery which obstructs his/her field of vision.

5) You may also want to consder active surveillance (AS), which is considered a form of treatment without actually treating the cancer.  You just have to get regular PSA testing (usually quarterly) and biopsies (every 1-2 years, I believe) and keep an eye out for any acceleration in the growth of the cancer.  Hopeful and Optimistic (who has already posted above) has already mentioned this and is your best source of info on this forum about it. 

I personally could not live w/the need to constantly monitor the cancer in my body.  Like most other men, I just wanted it delt with.  Some men gravitate to surgery for this reason, thinking that the only way to be rid of it is to cut it out, but I did not like the risks presents by surgery and opted for CK, which is a choice I have NEVER regretted.  I am cancer free, there is no indication of remission, there were no side effects and my quality of life was never adversely affected.  Other men on this forum have reported similiar results.

So, for obvious reasons, I highly recommend that you consder CK as your choice of treatment.  The choice seems obvious when you consider the alternatives but you'll have to decide that for yourself.

Good luck!

Julielynn0501
Posts: 12
Joined: Dec 2017

Thank you so much!  I will look at your Choices to Consider.

 

Julie

mstoriop
Posts: 37
Joined: Dec 2016

I always seem to follow the great information supplied by Hopeful, Swing and Vasco.  That's a good group to follow.  Actually their input as well as info from many others on this site really helped me gather information.  I completed CK (SBRT) treatment in August of this year over a two week period after diagnosis around November of last year.  As above I strenuously suggest at a minimum another biposy opinion ($250 with no insurance assistance from Johns Hopkins) and the 3T MRI as without this information there is speculation.  Also things like PSA % free, PSA density, PSA doubling time if you have a history are all good to at least check out but not sure if all this is neccessary since the diagnosis is some cancer present.  A common thread through this site is multiple opinions.  In my case I talked to 5 doctors total, 2 Urologists, one RO who used either proton beam or IMRT, and luckily for me 2 RO's and their staff at 2 different CK facilities.  All of this spread over 4 different hospitals.  I took time and was a pain to an extent but I found it desirable to get out of one facility's possible groupthink and for me it was extremely informative.  For me, for a variety of reasons I could bore you with, once I had been diagnosed and had been ruled out for AS, CK was my choice going in and I more or less I suppose baselined all of the other options to this for good or bad.  There are many options for you to study and decide all with some statistical after effects but all having relative long term positivity so I wish you well and good luck with your choice.  Except for your husbands higher PSA readings than I had the diagnosis of mine to his is very similar.  For whatever it is worth and while it is rather recent since treatment I have been blessed with zero notable after effects of any sort and hope that continues.  If you want more information from a newbie by all means just ask and trolling this site for other entries is obviously a good source for honest thoughts.  Best regards.                      

Julielynn0501
Posts: 12
Joined: Dec 2017

We will probably postpone the surgery while we study CK more.  So much to consider.

Julielynn0501
Posts: 12
Joined: Dec 2017

Thanks for ALL your comments, input and web links.  Got the PSA results from yesterday and it is an 11 - down from 14.7 five months ago!! This probably doesn't mean much as far as treatment, but was hopefu since it had been risingl.  Met with his internist and reviewed all the info with him.  Decided to postpone the surgery and look in CK more thoroughly.  I spoke with someone at Winthrop and asked if they knew about the West Jefferson Hospital New Orleans center, which is where we would be doing it.  She said she'd ask the doctor his opinion, if any, of the results of the center.  Moving along...

CC52
Posts: 103
Joined: Nov 2013

Somehow I had missed your initial post, but I wanted to add my thoughts. Keep in mind that none on this board are physicians (that I'm aware of at least), but there is much to be gained from the knowledge and experience of our members.

FWIW, I am happy to hear that for now, your husband is delaying treatment until you can explore his options. Like Swingshift and many others on the board, I also was successfully treated by CyberKnife (SBRT) in 2013. 

I'm sorry that you have found your way here, but this is the place to come for support and advice. Keep us updated as your research continues...

Best - CC

 

hopeful and opt...
Posts: 2226
Joined: Apr 2009

ustoo.com sponsors local support groups worldwide. Suggest that you go to their site, and see if they sponsor a group near you.At the meeting(s)  you might receive input about treatment facilities in the area....also google your location for prostate cancer support groups.

Glad that the PSA level has decreased..........  By the way did your husband have what is called a FREE PSA test, if not ask one of the docs to order this blood test for you.

Don't forget to pursue the various diagnostic tests that were mentioned to you.

hopeful and opt...
Posts: 2226
Joined: Apr 2009

You said,

"Thanks so much for your input!  He has no medical issues other than high BP.  Healthy, not overweight, etc.  They are saying the CA is contained in the prostate.  Do not recommend watchful waiting for him due to his age (60) and history (father had PCa)."

There is a man of 35 who is treated with active surveillance at the same institution as myself. He was able to marry and have a child. 

Active Surveillance is available for younger men as well. 

Here is a study that ASAdvocate just posted  regarding age and active surveiilance.

 

https://prostatecancerinfolink.net/2016/07/07/can-a-man-be-too-young-for-active-surveillance/

Julielynn0501
Posts: 12
Joined: Dec 2017

Getting an MRI tomorrow.  Someone just told us about FLA - Focal Laser Ablation.  Looks like a miracle treatment (??)  Has anyone ever heard of this?  sperlingprostatecenter.com  The laser heats and ablates the tumor with no ED, rectal irritation, incontinence, etc.  Appreciate your help in this ever-changing journey.

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Focal Laser Ablation....there are a few centers that do focal laser or Hifu to target small amounts of low volume, low aggressive cancer...these methods are used in conjunction with both 1.5 and 3.0 multiparametric MRI that locates the cancer(s).

In theory this procedure is great, however, since prostate cancer is multifocal, and it is hard to locate very small amount of cancer with current MRI technology, it is my laymans opinion that   better technology is required for this type procedure to be effective.

The procedure is self pay, not covered by medical insurance. I am  on active surveillance with low volume , low aggressive disease, and  was offered the opportunity to have this type procedure gratis; declined for the above reasons. If I have an active procedure, at this time I would elect SBRT that will treat the whole prostate since I believe that there is a better chance of cure.

You mention that you are having an MRI tomorrow..I hope that it is a T3 multiparametric MRI.

USToo lists discussions about prostate cancer at their web site. I visited the site about a year ago, where there were several men and doctors who posted at a thread about focal laser abation. It not for me, but you may wish to find out more information about this treatment.

 

Best

Julielynn0501
Posts: 12
Joined: Dec 2017

How were you lucky enough to be selected to do the FLA gratis?  We are seriously looking into this since if it doesn't work you can have any other treatment if necessary.  They supposedly have a 90% success rate.  We are fortunate to have a supplemental cancer policy that will cover most of the TX.  

Unfortunately, there is no T3 MRI near us so it was a regular one...  We are sending the results to Sperling to see if he is a candidate.  

Thanks again for being so helpful!

And I will check out the "USToo" site.

 

MEtoAZ
Posts: 37
Joined: Feb 2016

Hi, Sorry you have to be here but since you are, I would echo most comments here.  I have not been on for a while but I had CK back in April 2016.  My PSA was a little over 5 and now down to .3 and continues dropping.  I chose CK for the same reasona listed previously, I was young (52 when diagnosed) and while that is a good age for surgery, I didn't like the potential side effects that if they happen, stay with you.  There are side effects for every treatment, I continue to have occassions when bladder control isn't what it was but those are infrequent and certainly not life changing, just inconvient.  Overall, the side effects have been minimal and I am happy with the result, had I spent more time on research I probably would have done some AS but doctors tend to push procedures since that's how they get paid so I went that route as do many others.  I looked at HiFU (FLA) when I was considering treatment.  I chose not to go that route for several reasons, 1, cost ($25K plus travel), 2, location have to travel outside country and follow-up care is sketchy because procedure is done outside country, 3, there are some people who have not had very good experience during and after the procedure.  I suspect that is all tied into the number of procedure preformed by the doctor but needless to say, with the way laser ablation works, a miss can do a lot of damage very quickly adn 4, wasn't comfortable with doing something that wasn't yet mainstream within the US, really tied to point 2 and potential lack of follow-up care I suppose.  There is a lot of documentation on the procedure so if someone is offering it with a local presence for follow-up you should probably consider it as another possible option.  The most important thing for you, whatever the decision, be comfortable with it and move on, no reason to second guess!

hopeful and opt...
Posts: 2226
Joined: Apr 2009

In answer to your question, I am in an Active Surveillance program at UCLA, where an image is taken with a T3 MRI, then a three dimensional biopsy using the Artemis machine.

To administer HIFU a Sonoblate machine is used, previous to two or three years ago it was not FDA approved, and one had to go out of country to have this procedure at a cost of aout 25,000. There was was a multi institutional clinical test for the Sonoblate machine. My doctor who is experienced in using the Aremis machine, was in the clinical test for the Sonoblate, which uses some of the same skills in taking cores. I was offered to be included in the clinical study. My doc still does HIFU to treat localized first treatment choice, or salvage with more advanced.

 

The T3 multiparmetric MRI provides better definition in determining where the cancer is, and a better tool to know where you stand, and for any doctor providing  activr treatment such as FLA. ...I propose that one needs to travel to obtain the necesary diagnostic tests and treatments necessary.

I wonder if you would be a candidate for FLA since generally it is geared for men with a low amount of 3+3=6. ...well good luck if you decide to pursue this 

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