New here - need to make treatment decision soon

comausa
comausa Member Posts: 6
in Prostate Cancer #1

Hi, I'm new here. Diagonosed about 8 weeks ago with PCa, got second opinion from Dr. Epstein in the meantime which confirms Kaiser's initial analysis of my biopsy samples: PSA: 7.2, Gleason 3+4 (intermediate risk), T1c. Dr. Epstein's analysis revelaed that Type 4 (intermediate) cancer cell content is below 5% in all of my biopsy cores.

Kaiser (Santa Clara) radiation oncologyst recommended HDR plus EBRT therapy. I have been reading about the good results from several people who went with CK treatment in the SF Bay Area and am not sure anymore what the best treatment in my case would be. The Kaiser doctor mentioned during a consultation that they have a CK system in South-SF, but didn't comment any further on whether he would support this treatment in my case. Since they seem to not use it on a regular basis for PCa, I'd be also worried that they might lacki the needed experience to apply it appropriatelly in a PCa case.

So, opting for CK treatment might involve changing insurance coverage which I wouldn't be able to do before end of the year (unless Kaiser would approve the CK treatment option and I'd be comfortable getting it done there). Adding the approx. 6 months it might take to get the actual CK treatment performed at either UCSF or Standord, I'm not sure I have enough time to wait that long (probably one full year).

Any tips / advice is highly appreciated.

Thanks

C.M.

Comments

  • Old Salt
    Old Salt Member Posts: 1,505 Member
    #2
    Some comments

    Not sure what HDR stands for in this case. Did he mean HDR brachytherapy? It's generally recommended that this procedure be done by urologists who are highly experienced with this form of radiation therapy.

    I do recommend that you look further into SBRT. It would certainly be a lot simpler for you (typically only five sessions). But as you wrote, the issue with your insurance may be problematic.

    I have read that Stanford currently does not offer SBRT after Dr Chris King moved to UCLA. UCSF has an active SBRT program and I would hope that you can use them.

    Good luck with the decision process!

    PS: In your discovery process, please use 'SBRT' rather than 'CyberKnife'. The latter is just a system to do SBRT, but there is at least one other system that is highly competitive. Again, investigate the experience level of the group that might be irradiating you. You don't want to be part of the 'learning curve'.

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    #3
    .

    Please give more input about your biopsy. HOw many cores were taken. How many were positive. What was the Gleason in each core, and what percent of the core was cancerous.

    Here is published data about success for SBRT, to include intermediate (89percent success).

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

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #4
    Choose what you trust and follow with insurance coverage

    CM

    You can get better answers/opinions/suggestions from guys here if you share more details of your diagnosis and reason for the clinical stage. I assume that the second opinion regards the biopsy cores alone without any regards of the location of positive cores. I would think that the protocol recommended by your oncologist (HDR plus SBRT) is based on the report of the pathologist and an image study, probably identifying existing hyperplasia with cancer contained but close to the prostate shell.

    The HDR will care the inner region of the gland, adding the SBRT to attack the areas close to the capsule. In any case, in similar diagnosis one can be treated by SBRT alone if the prostate size is not very large. It all depends on the experience of the radiologist. T3 cases would be recommended for a wider attack, probably involving HDR plus IMRT.

    My opinion in regards to the insurance coverage and the time you need for complete assurances of their participation, is that you can postpone the RT treatment four to six months without affecting the treatment outcome. I would opt by choosing the type of treatment most comfortable to me and assure insurance coverage before scheduling the therapy.

    PCa does not alter status overnight, unless it is very aggressive. Not the common case in intermediate risk.

    Best wishes and luck in your journey,

    VGama

  • Clevelandguy
    Clevelandguy Member Posts: 1,180 Member
    #5
    Proton Beam?

    Hi,

    Might want to consider Proton beam radiation which is much like CK but has a fixed focal length.  CK will go completely through your body where Proton beam stops at the tumor(so no exit trauma).  Don't know if your insurance supports it or if there is one near you.  Just my 2c worth...................

     

    Dave 3+4

  • GeorgeG
    GeorgeG Member Posts: 152
    #6
    As a point of reference,

    As a point of reference, seeds plus EBRT is the standard of care at MSK and I found them to be very competent.

     

    George

     

  • comausa
    comausa Member Posts: 6
    edited August 2017 #7
    Thanks much for all the

    Thanks much for all the responses so far and sorry for the delay in follow up - back from business trip now.

    Here are more details about my needle biopsy analysis from Dr. Epstein at Johns Hopkins:

    A to C: Benign tissue.

    D: Prostatic Adenocarcinoma, Gleason Score 3+4=7 (Grade Group 2) involving 4 cores (30%, Discontinuously involving 60%, 5%, 100%) (Less than or equal to 5% Gleason Pattern 4).

    E. Prostatic Adenocarcinoma, Gleason Score 3+4=7 (Grade Group 2) involving 2 cores (90%, 30%) (Less than or equal to 5% Gleason Pattern 4).

    F: Prostatic Adenocarcinoma, Gleason Score 3+4=7 (Grade Group 2) involving 2 cores (80%, 80%) (Less than or equal to 5% Gleason Pattern 4).

     

    Kaiser treatment update: Had a consultation with Dr. Mohan at Kaiser in South San Francisco a couple of days ago and was surprised to instantly get accepted for SBRT treatment. Older posts here had suggested that Kaiser is not allowing Cyberknife procedure for PCa, so this has changed now ... according to Dr. Mohan, they are using SBRT for PCa now since about two years. In the SBRT (or SRS - Stereotactic Radiation System, how they call it) category, Kaiser SSF has a Cyberknife and two Varian machines (Trilogy and TrueBeam). According to Dr. Mohan, Cyberknife is the older technology and not as accurate and efficient (higher dosage) as the newer Varian systems, which he wants to use for treating me. To me that's all good news, since I had expected a battle for getting SBRT treatment approval. Dr. Mohan proposed a treatment plan for me that includes radiation of a few millimeters of tissue outside the prostate gland as well as parts of the seminal vesicles (sparing all nerves of course) besides the prostate itself, to insure that potentially escaped cancer cells get destroyed as well. 

    Now, here are my three questions:

    1) Does anyone have experience with Dr. Mohan at Kaiser in South SF?

    2) Does anyone have experience with the Varian TrueBeam system (versus Cyberknife)

    3) Did anybody else have a similar treatment plan (including outside perimeter of prostate and parts of seminal vesicles) and can share experience?

     

    Thanks much in advance.

     

     

     

  • GeorgeG
    GeorgeG Member Posts: 152
    #8
    Varian Truebeam is used at a

    Varian Truebeam is used at a lot of high end institutions including Mayo where I am getting SRT treatment. It's not SBRT but rather standard 39 fraction treatment. My primary treatment was RP so I can't comment directly on primary radiation choices.

     

    George

     

  • Billdonaldson
    Billdonaldson Member Posts: 9 Member
    #9
    Gold seed fiduicals

    I had three gold seeds fiduicals placed 4 weeks ago and the MRI last week. Possible CT after the radio oncologist examines the MRI. I didn't have the 3T mpMRI due to a aneurysm clip and shunt in my head from last years rupture. Been quiet a year. Diagnosis of prostate cancer 6 months ago with 3+3 Gleason but a month later the results of Prolaris genetic  test indicated it was a "more aggressive " type. I've been on finesteride for 6 months to reduce the prostate size. Cyberknife seems the best option for me. Does anyone know why some people get 3 seeds and others get 4-5-or more? Thanks 

  • Billdonaldson
    Billdonaldson Member Posts: 9 Member
    edited August 2017 #10
    Cyberknife and Medicare

    can anyone give me a idea of the cost of Cyberknife if you have Medicare? Thanks 

  • Billdonaldson
    Billdonaldson Member Posts: 9 Member
    #11
    Genetic testing for AS

    i would highly suggest that if you are on AS you get a genetic testing of your biopsy tissue done by one of the four different genetic assessment compan. Your urologist can submit your prior biopsy tissues to a company like Prolaris ( had this company) . It will add to your information for future planning. Google prostate cancer diagnosis genetic testing. Mine was covered by Medicare. 

  • Billdonaldson
    Billdonaldson Member Posts: 9 Member
    #12
    After cyberknife treatment

    those of you who had Cyberknife I hope you are all doing great! If you were taking finesteride before the treatment did you need to take it after? Thanks 

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #13
    Is the clinical stage confirmed?

    I cannot help with any own experience in CK treatment but I wonder if the protocol proposed by Dr. Mohan is enough. What is his idea of your clinical stage?

    According to your added info, they have found a voluminous cancer case with 8 positive cores out of twelve. The confirmed Gleason rate of 4 places your case in the high risk of probable positive metastases. I would think that the doctor would include a wider area of attack probably radiating the localized lymph nodes (at the iliac) and the nerves bundles (a common escape route taken by PCa). Without a due image exam the success of the treatment cannot be assured and if recurrence occurs in the future, radiation (salvage therapy) on closer areas cannot be done again for the high dose Gy typical of CK modalities. I recommend you to discuss the matter further with him before making a final decision.

    Best

    VG

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #14
    GeorgeG said:

    Varian Truebeam is used at a

    Varian Truebeam is used at a lot of high end institutions including Mayo where I am getting SRT treatment. It's not SBRT but rather standard 39 fraction treatment. My primary treatment was RP so I can't comment directly on primary radiation choices.

     

    George

     

    Varian

    George,

    In many hospitals, the Truebeam machines are capable of both Fractionated employment, and SBRT.  This is  a marketing point for them: Buy one machine, and get both abilities.  The machine at my cancer certer is both, and bragged about as such: The beancounters want to pretend they are concerned with saving money.

    It may be that some Truebeam models are only Fractionated, I have not looked into it in that much detail.

    Bless your SRT results,

    max

  • comausa
    comausa Member Posts: 6
    #15
    VascodaGama said:

    Is the clinical stage confirmed?

    I cannot help with any own experience in CK treatment but I wonder if the protocol proposed by Dr. Mohan is enough. What is his idea of your clinical stage?

    According to your added info, they have found a voluminous cancer case with 8 positive cores out of twelve. The confirmed Gleason rate of 4 places your case in the high risk of probable positive metastases. I would think that the doctor would include a wider area of attack probably radiating the localized lymph nodes (at the iliac) and the nerves bundles (a common escape route taken by PCa). Without a due image exam the success of the treatment cannot be assured and if recurrence occurs in the future, radiation (salvage therapy) on closer areas cannot be done again for the high dose Gy typical of CK modalities. I recommend you to discuss the matter further with him before making a final decision.

    Best

    VG

     

    Thanks for the feedback. That

    Thanks for the feedback. That was Dr. Mohan's initial recommendation. He said that I will have to do a CT scan plus 3T MRI before we can make final treatment decisions. Looking at my biopsy results, he wasn't too worried about potential spread of the tumor, but I will consult with him again regarding this after the imaging is done.

    Cheers

  • comausa
    comausa Member Posts: 6
    #16
    Max Former Hodgkins Stage 3 said:

    Varian

    George,

    In many hospitals, the Truebeam machines are capable of both Fractionated employment, and SBRT.  This is  a marketing point for them: Buy one machine, and get both abilities.  The machine at my cancer certer is both, and bragged about as such: The beancounters want to pretend they are concerned with saving money.

    It may be that some Truebeam models are only Fractionated, I have not looked into it in that much detail.

    Bless your SRT results,

    max

    Thanks for these insights ...

    Thanks for these insights ... I will make sure to ask about the SBRT capabilities of their TrueBeam system.

    Cheers

     

  • comausa
    comausa Member Posts: 6
    #17
    GeorgeG said:

    Varian Truebeam is used at a

    Varian Truebeam is used at a lot of high end institutions including Mayo where I am getting SRT treatment. It's not SBRT but rather standard 39 fraction treatment. My primary treatment was RP so I can't comment directly on primary radiation choices.

     

    George

     

    Thanks, George. Which machine

    Thanks, George. Which machine are they using for our SRT follow on treatment?

  • comausa
    comausa Member Posts: 6
    #18
    Kaiser or UCSF?

    Quick update ... I'm currently with Kaiser and have had a good discussion with Dr. Mohan at their SSF cancer center for treatment of my PCa with their state-of-the-art Varian TrueBeam SBRT machine. I think that he is competent and experienced in his field and would feel comfortable getting treated by him. I'm now planning to switch jobs beginning of November, so could change my health provider very soon in the process and am wondering if it would be preferable to get treatament from UCSF instead of Kaiser? Interested in your opinions and reasonings.

     

    Thanks much in advance.

  • GeorgeG
    GeorgeG Member Posts: 152
    #19
    I just finished my SRT which

    I just finished my SRT which was 39 fractions with a Varian Truebeam with a minimum field of 50 gy, the majority of the field at 67 gy and the bladder neck/anastamosis at 70 gy.

    George

     

  • Swingshiftworker
    Swingshiftworker Member Posts: 1,017 Member
    #20
    comausa said:

    Kaiser or UCSF?

    Quick update ... I'm currently with Kaiser and have had a good discussion with Dr. Mohan at their SSF cancer center for treatment of my PCa with their state-of-the-art Varian TrueBeam SBRT machine. I think that he is competent and experienced in his field and would feel comfortable getting treated by him. I'm now planning to switch jobs beginning of November, so could change my health provider very soon in the process and am wondering if it would be preferable to get treatament from UCSF instead of Kaiser? Interested in your opinions and reasonings.

     

    Thanks much in advance.

    I chose UCSF

    Don't know if you've read prior posts of mine concerning my choice of UCSF vs Kaiser for the treatment of my PCa.  Don't have any links near at hand so here's a quick summary.

    I was a lifelong member of Kaiser when I was diagnosed w/PCa in Jan 2010.  At the time, Kaiser did NOT treat PCa w/CK (or any other form of SBRT).  The only choices given to me at Kaiser were surgery in SF/Oakland or LDR BT (low dose rate brachytherapy) at the BT center in Roseville.  After doing my research the 1st few months after diagnosis, I was absolutely opposed to the idea of surgery and wasn't convinced that BT was the better way to go. 

    Further resarch led me to CK, which was a fairly new treatment method at the time.  I was attracted to it because of the claimed ability to treat the cancer w/o the same risk of ED and other problems commonly associated w/surgery and the lack of needing to have radioactive seeds placed in my prostate.  I paid for a uninsured consultation w/Dr. Gottschalk (the head of the CK program at UCSF) out of my own pocket and decided that CK was the way to go.

    I was ready to pay for the procedure out of pocket (about $70k) but several things enabled me to get it paid for by insurance.  First, I was able to enroll in Blue Shield (and drop Kaiser) as my medical provider.  Second, and Blue Shield CA had just approved CK as a "non-experimental treament' enabling it to be covered for payment just 6 months earlier.  Third, I was able to switch from Kaiser to Blue Shield during open enrollment in April 2010 which became effective in July.  

    I was subsequently treated at UCSF for PCa w/CK in Sept 2010.  My PSA was slow to drop and there was a "bounce" about 4 years out but I was sucessfully treated WITHOUT any side effects.  My PSA has since continued to drop (have not yet hit a nadir) and I have been cancer free ever since.

    I can't say whether treatment w/CK at UCSF would be "better" than treatment with True Bean at Kaiser.  I generally received excellent medical treatment at Kaiser but left when they could/would not provide me w/the treatment that I wanted at the time. 

    I have been w/Blue Shield and UCSF ever since and have no regrets about the switch.  If you are intersted in exploring other options, I'd suggest you contact Dr. Gottschalk at UCSF to discuss possible treatment w/CK.  You can Google his name for the necessary contact info.

    Good luck!

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