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Looking for similar cases

Fkulick
Posts: 3
Joined: Dec 2015

I am 64. Had psa of 9 then 7 then 8.3 over 3 month span, had biopsy on 12/9 at john Hopkins. Result 2 specimens with Gleason 7(4+3) one with Gleason 7(3+4) the rest  ok. Graded TC1. Doc told me to read dr Walsh book and we have consult phone call on 12/23. Said option are surgery or radiation. I see no mention in the book at all about cyber knife. I gave done research and been in contact with cancer center of America. It seems to me anyway that I am a candidate for cyber knife which seems lesser of all evils relative to side effects etc. just strange that no mention in book or by the doctor that did biopsy about that option at least not yet.

 

Uh_Oh
Posts: 17
Joined: Mar 2015

Hi, Fkulick.

I believe 'Cyberknife' is just a brand name for what is actually a SBRT (stereotactic body radiation therapy) delivery system, so could it just be that the doctor was just generalizing when referring to radiation and not going into the specific types? Same for Dr. Walsh's book? I urge you to ask this question during your phone consult. I'd also ask about your options should you choose radiation and suffer a cancer recurrence somewhere down the road. The concensus has been that after radiation, surgery isn't an option (or at least an easy option) whereas after surgery radiation is available as a 'second bite at the apple.' Things constantly change however, so I'd ask.

Also, my biopsy was performed as a 'fusion' targeted biopsy after having a 3Tmp MRI performed at JH. This gave us all good idea that the tumor was organ convined and that the lymphnodes appeared to be unaffected. Did you also have a MRI prior to your biopsy?

Personal note: You'll get a lot of opinions here, but at 51 years old, I decided on surgery as my best option and have recovered well. Part of that decision making was that I wanted to be sure that my Gleason was accurate. When I went into surgery, I was diagnosed with 'bilateral' G6 in only 2 biopsy cores. After surgery I was upstaged to G7 (3+4). I just felt we couldn't know for sure what was in there until the whole thing was under the 'scope in pathology. I've read elsewhere of a G6 going into surgey wasupstaged to a G9 afterwards! I just had to know once and for all.

I'm curious as to who your doctor is, as my biopsy and RP surgery was also performed as Hopkins in August.

 

Best wishes!

Fkulick
Posts: 3
Joined: Dec 2015

thanks for the response. I did not have MRI before biopsy. My doctor was Mishop Han

Swingshiftworker
Posts: 1013
Joined: Mar 2010

Walsh's book was written in 2001.  CK was developed before then but not in general use (ie., considered "experimental") until around 2005 and was not approved for insurance coverage (ie., no longer considered "experimental") until around 2010. 

From what you've said, you are a suitable candidate for CK. 

I received CK treatment in 2010.  I was a Gleason 6, PSA 9 and T1c at the time of treatment.  The treatment is completed in only 3-4 sessions usually administered every other day over a week's time.  I experienced no side effects whatsoever -- no ED, no incontinency, nada.  It took awhile for my PSA readings to settle down and, after I had an MRI/MRSI scan done around 3 years after treatment, it was confirmed that there was no remaining cancer and my PSA level has since dropped below 1 (and is still dropping after 5 years), which is considered a success.  So, I would highly recommend that you persue this form of treatment.

The advantages of CK over surgery as a form of treatment cannot be exaggerated.  The risks of surgery are extreme and can result in a lifetime of pain and misery.  Of course, there are "successful surgeries but they often come w/at least a 1 year recovery period in order to regain erectile function and urinary control.  I would not recommend surgery for anyone unless there was absolutely no alternative and, fact is, there are just too many alternatives to surgery (not just CK) to subject yourself to it.

Good luck!

 

 

 

 

 

Fkulick
Posts: 3
Joined: Dec 2015

I appreciate the response and encouragement. I certainly am leaning towards cyber knife but have open mind. I have been talking with cancer center of America and nay we'll have my slides sent there and get another look at them and another opinion.

tks

Uh_Oh
Posts: 17
Joined: Mar 2015

Fkulick......Update us after your consult tomorrow. As you likely know, Hopkins pathology is world renowned, and is where people send their slides to for a second look. I don't see a second opinion being much use to you, as you will need treatment one way or another. Ask about CK/SBRT at Hopkins. I can't believe it isn't an option there, if that's your preferred route to travel.

Swingshiftworker
Posts: 1013
Joined: Mar 2010

I too sent my slide to Johns Hopkins for a 2nd opinion.  Dr. Jonathan Epstein, who is considered a leading expert in the field, did mine and confirmed the original diagnosis which was just a Gleason 6.  Hopefully, they will confirm your Gleason 7 diagnosis as well.  Good luck!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3323
Joined: May 2012

Fkulick,

I agree with SSW that, based on what information you have so far, Cyberknife is probably a good choice. As mentioned, Cyberknife is a company name for SBRT; there is at least one other equivalent brand, Novalis.  The SBRT technology in both is reportedly close to identical. Some cancer centers have bought one brand, others bought the other.  Many have NEITHER, and use IMRT or IGRT. The difference with IGRT is that it requires more visits for treatment. But IGRT is equivalent to Cyberknife in curative outcomes in all major studies.

If tests discover extra-capsular escape, radiation in the form of IGRT becomes the first-line treatment of choice.  Surgery is ordinarily not done on men who have cancer outside the glland.

I had surgical removal in January, at age 58.  If you are otherwise in good health, you are certainly young enough for the prostectomy option, but I would only do surgery if there was a compelling reason to choose it over radiation.  From what you have provided thus far, I can't see any such reasons.

I do not know a lot about Treatment Centers of America, but what little I know does not recommend them to me.  Often, these decisions come down to Insurance and money.

max

Trivia addendum:  My radiaology center, which has (as I mentioned) the Novalis radiation system, published a few weeks ago an online description of the system and how it differs from Cyberknife.  They state that Cyberknife is SBRT only, whereas Novalis has both fractionated IGRT and SBRT capability: the doctors involved decide which to use, based upon the cancer.  Basically, a way to buy one machine verses two.

.

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

A multiparametric MRI T3 can give an indication if there is extracapsular extension  This is necessary in seeking treatment. ....If the  the cancer is outside the prostate, hormone treatment in addition to SBRT may be indicated....also the perimeter of the SBRT may be extended if there is some likelihood of extension.

Johns Hopkins is world renoun, so have the MRI there, and SBRT if they have it...it may be known as Cyberknife, Novalis, or another manufacturer..ask them....let us know what is available to you.

Also as said they are the best for evaluating biopsies...the pathology department is world class.

Cancer centers of america has a poor reputation for medical services. They do have a good reputation for marketing....I suggest that you stay away

Best

H

 

CC52
Posts: 103
Joined: Nov 2013

Fkulick,

I "welcome" you to the club.

You are welcome to follow my story in two places: http://csn.cancer.org/node/264905 and more specific Cyberknife related here: http://csn.cancer.org/node/264905.

From my personal experience at Hopkins, I met with Dr. Han after participating in the day-long "Multidisiplinary Consultation" in March 2014. He is a Medical Oncologist (MO), meaning he will only discuss surgical options with you. After meeting with him, a Radiation Oncologist (RO) was next to speak with me about treatment. She mentioned only low dose radiation (LDR), the 8 week treatment regimen. I had already "penciled in" Cyberknife (SBRT) as my desired treatment option, so I asked her if Hopkins offered it. She mentioned they did, but only as part of their trial program. I didn't care for the approach at Hopkins. Honestly, it felt to me as if they were only interested in selling me something - much like the experience of buying a new car. 

I met with the Cyberknife team at Georgetown before going to Hopkins, and I was very impressed with their approach, specifically the fact that they encouraged me to take my time while considering options. They never applied any of the pressure I felt at Hopkins to decide "right now" how I should treat.

I would suggest that you consider meeting with the staff at Georgetown for a second opinion. It costs you nothing but a little more time, which it seems you have based on your condition. Research Dr. Sean Collins at Georgetown University Hospital.

Best wishes as you move forward toward treatment.

CC

Swingshiftworker
Posts: 1013
Joined: Mar 2010

CC52:  Your "consultation" experience at Johns Hopkins was surprising similiar to mine over 6 years ago at Kaiser in San Francisco.

I spoke initially w/several urologists who only recommended surgery and then went to the PCa radiation center in Roseville (near Sacramento), where they only did LDR BT.  The PCa raditaion center was set up in a very commercialized way, including an information packet and orientation meeting that just sounded like a big sales pitch.

This led me to do further research which resulted in my finding out 1st about PBT and then about CK, because I did not like the risks associated w/surgery or BT.

After I was told that Kasier did NOT use CK (at that time, although it does now) for PCa and that PBT was NOT covered by medical insurance (at that time, probably is now), I went to UCSF Medical Center for treatment w/CK, which was covered by Blue Shield, where they had been using it to treat PCa (and other cancers) since 2005 -- 5 years before I received mine.

I would have thought that Johns Hopkins would have been at the cutting edge of using CK and other technologies (as UCSF always seems to be) and was surprised to learn that they still do not use CK for the general treatment of low grade, early onset PCa, when it has been used as such for over 10 years now!!!

astout
Posts: 1
Joined: Jan 2016

In December, 2002, I had a radical prostetectomy at Mayo Clinic.  The results were "good" - no seminal vesicles, no lmyph node involvement - negative margins. On the downside, there was "extra-prostatic" extension, so my patholgocal stage was T3...

My PSA remained below .06, until last May - then, suddenly, it registered .11... my urologist(here in Boise, Idaho) changed my checks from 6 months to every two - last October, .12....yesterday, .16 - that's eight months. not great...

I was the last person there, and he spoke to me at length, explaining nowadays he truly IS more likely for me to die WITH prostate cacner than from it...and, he develed in depth into all the hormone depreivation therapy, etc. I KNOW how though that can be, as I was on Casodex pre-surgery to shrink teh tumor, which was substantial.

I felt, clearly, he was preparing me for the inevitable. But, up until NOW, he'd been of the opinion this was probably benign tissue growth....my surgeon form Mayo -with him I still email, consult (though he is retired), says this is NOT a signifcant increase. WHAT? Almost to .2 isn't??? HE thnks, still possibly benign... of course, as the one who did my surgery, he may be a bit prejudice.

At 10 years, EVERYONE - internist, urologist, surgeon - believed it would never "return." Now I seem at death's door...

All cases are different, unique - I understand that. Still, anyone here have a case similar to this? My urologist says, when it gets to .2, we'll "begin looking." Hmm.... I wonder, why wait? 

Old Salt
Posts: 720
Joined: Aug 2014

start a new thread to prevent confusion.

But be assured; you are not at death's door. A recurrence is not unusual, unfortunately. Usually though, if the cancer does come back after a prostatectomy, it happens much sooner. Therapies are available for cases like yours.

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