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Thread: Adjuvant Radiation/Oncologist question

  1. #1
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    Adjuvant Radiation/Oncologist question

    Next Wednesday I'm meeting the the Radiation Oncologist for the large practice where I've gotten all of my treatment thus far (surgery). I met with this guy before surgery, but since both he and I ended up pointing me down the surgery path, I didn't spend a lot of time worrying about him as a provider for me personally. I've been very pleased with my surgeon and the practice overall (what I've seen of it). Based on my research and discussions with my Dr. Ruff, my uro, it looks likely the way forward will include adjuvant radiation treatments, likely sometime after the first of August (first post-surgical PSA/followup uro visit). Since my current insurance (through wife's work) ends with this month, and new plan is worse, at least for cost (thousands more deductible, less coinsurance, etc.) and likely coverage, I'm going to see the RO before the end of the month for an initial consult on this path. As a review, the adjuvant is suggested because of the upgrade from 3+3 to 4+3 (w/ 5) and positive margins.

    So, the question. With the help of you guys here, and other research, I got pretty comfortable with the things I wanted to know about the surgeon to get a feel for expertise prior to surgery. I knew his 3-5 a week, 1000+ totals, etc., demonstrated he was well past the learning curve. I had a good list of questions to ask about outcomes and related. Based on the stuff I learned by asking/exploring, I got really comfortable with the surgeon. I feel like the outcome was great. No incontinence to speak of, healing progressing well, etc.

    I'm kinda starting over with this kind of radiation stuff. I know that there's a team of folks, RO, dosing specialists, etc, that work to design and monitor the treatment and progress. What I don't know is if there are any specific questions or areas of interest I should be pursuing at this consult to help me know if this is the guy/team. I know he did his residency at Loyola and then stayed on as a prof there and ended up director of the residency program for the RO's. His specialties (at least what he publishes about) are Prostate, Bladder, and Breast cancers. That all seems great, but I'd like any advice you guys have on things I should be asking or watching for. As I said, this is really an exploratory/planning consult designed to figure out if adjuvant is the right idea and how/when he'd proceed. Thanks in advance.
    Dx 06jan2017, 53yo
    PSA 7
    Gleason 3+3=6, 2 cores from 12,
    L apex 1mm, 14% and 0.5mm 5%
    Grade T2a
    RP Davinci 10 Apr 2017
    Final Pathology: 36 grams (4x3x3cm)
    Tumor 1.8cm greatest dimension, extrapostatic ext. indeterminate
    Primary Grade 4, Secondary Grade 3, Tertiary Grade 5 (5%)
    4mm span positive margin apex
    "Tumor not obviously beyond the prostate" (at margin), but into striated muscle tissue.
    Extraprostatic tissues, 5 lymph nodes, seminal vessicles all no malignancy.
    pT2c, N0, Mx
    Adjuvant RT scheduled: 39 tx at 70Gy Oct - Dec 2017
    PSA
    1/17 (pre surgery) 7
    8/17 0.04
    10/17 0.06

  2. #2
    Top User FeatherBoy's Avatar
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    Hi DanaATX

    If I understand your question correctly, It seems to be the issue of picking a good RO.
    I got very lucky with mine and I stand by that.
    Choose one who your providers think highly of and would go to if necessary.
    Whatever mode of radiation you choose, follow their instruction EXACTLY TO THE LETTER!
    If they tell you to have a full bladder before treatment, be damn sure you do it, even if it is uncomfortable.
    If they tell you to lie perfectly still during active treatment, don't even move a muscle until they ok it.
    Failure in following simple instructions can result in disastrous consequences later in life I know, been there, done it, bought the tee shirt.
    Radiation in the proper hands can potentially cure cancer if you are careful. I wasn't and am paying for it for the rest of my life!
    I hope I haven't scared you off radiation, that was not my intent! Just do your homework and talk to as many ROs as possible.

    Cheers and Keep the faith! --- Dave
    Age At Diagnosis: 59
    Pre-Op PSA: 4.5
    Diagnosis: Prostatic Adenocarcinoma
    Surgery: Retropubic Radical Prostatectomy (RRP) 07/16/2012
    Stage: pT2c,pNO,PMX
    Gleason Grade: 4+3=7 (Not-So-Good Cancer)
    Extraprostatic Extension: Neg.
    Lymph Nodes: Neg.
    Seminal Vesicles: Neg.
    Positive Margins
    Tumor Quantitation: <5% Of Prostate
    Tumor size: 1.1cm.
    High-Grade PIN
    Perineural Invasion: Present
    Post-Op PSA: 0.4
    Completed 35 sessions adjuvant IMRT on 12/13/2012
    PSA as of 01/10/2013: 0.2
    PSA as of 04/12/2013: 0.1
    PSA as of 07/10/2013: <0.1
    PSA as of 10/08/2013: 0.1
    PSA as of 01/15/2014: 0.2
    Still holding at 0.2 7/15
    0.3 as of 12 month ago.
    0.8 as of 9 months ago.
    1.8 as of 6months ago.
    1.6 as of 3 months ago
    7.3 as of 05/15/2017
    Bone Scan 06/08/2017 Negative
    9.3 as of 06/14/2017

    'Archaeologist of The Forum Archives'


    "Every day above ground is a good day". -- Scarface




  3. #3
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    Hi Dan! Your case must be noted by anyone considering AS. PC can be a wolf in sheep's clothing. Biopsies are not a 100% accurate assessment! Fortunately, you opted for RP and not AS.

    Sorry about the insurance change at the end of May and hope your out of pocket expenses are not crippling.

    The discussions I would have with the RO is:

    - "When to start AR?" Optimally, you want to fully recover and regain as much functions as possible

    - "Can we monitor PSA using an ultrasensitive PSA test (uPSA)?" If your PSA remains < 0.05 ng/ml, this should buy you more time. Also, it is unlikely that insurance will cover AR/SR with an undetectable PSA

    It is possible that you may never experience Biochemical Recurrence (BR). In this scenario, having AR/SR would be a total waste of time, $250K and would create unnecessary radiation damage to healthy tissues.

    IMO, I would aim to buy as much time as possible prior to starting AR/SR in order to maximally regain functions. Simultaneously, I would fervently hope for the best = BR does not happen!

    Good luck!

    MF
    PSA: Oct '09 = 1.91, Oct '11 = 2.79, Dec '11 = 2.98 (PSA, Free = 0.39ng/ml, % PSA Free = 13%)
    Jan '12: DRE = Positive: "Left induration"
    Jan '12: Biopsy = 6 of 12 Cores were Positive: 1 = Gleason 7 (3+4) and 5 = Gleason 6
    March '12: Robotic RP: Left Positive Margins + EPEs. MD waited in surgery for preliminary Path Report then excised substantial left adjacent tissue(s) down to negative margins and placed 2 Ti clips for SR guidance, if needed in future.
    Pathology: Gleason (3+4) pT3A pNO pMX pRO / Prostate Size = 32 grams; Tumor = Bilateral; 20% / Perineural invasion: present
    3 month Post Op standard PSA = <0.1 ng/ml
    1st uPSA at 7 months Post Op = 0.018 ng/ml uPSA remains stable: = 0.020 ng/ml "Mean (+/-) STD" = 0.002 at 66 Months Post Op: (16 uPSAs: Range 0.017 - 0.024) LabCorp: Ultrasensitive PSA: Roche ECLIA
    Continence = Very Good (≥ 99%)
    ED = present

  4. #4
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    Quote Originally Posted by Michael F View Post
    Sorry about the insurance change at the end of May and hope your out of pocket expenses are not crippling.

    Also, it is unlikely that insurance will cover AR/SR with an undetectable PSA

    It is possible that you may never experience Biochemical Recurrence (BR). In this scenario, having AR/SR would be a total waste of time, $250K and would create unnecessary radiation damage to healthy tissues.

    IMO, I would aim to buy as much time as possible prior to starting AR/SR in order to maximally regain functions. Simultaneously, I would fervently hope for the best = BR does not happen!

    Good luck!
    MF
    Thanks, Michael. The costs won't likely be crippling, especially if I can get them covered in the same year with the surgery, just "unfortunate". Insurance not covering is my biggest fear, really. According to my uro doc, the American Urological Assoc. and the Amer. Soc. for Rad. Oncology, plus others, the current recommendation for "best practices" given my pathology is to do adjuvant radiation therapy. Sort of the definition of adjuvant is post-surgery, pre-BR radiation. The PSA is expected/required to be undetectable to do it. If you wait until BR, regardless of timeframe, it is considered salvage radiation. As my doc describes it, adjuvant is a "hit it while it's weakened and down and hasn't had any chances to grow/spread/get stronger" approach. Given the combination of higher risk (4+3 w/5) and positive margins, the probability of BR is much higher than if I'd had clean margins. Another advantage for me is that adjuvant is generally recommended without hormone therapy (leave that bullet in the gun) where this RO already told me pre-surgery that salvage/primary would include months of HT prior to radiation to weaken the cancer. From what I've read and just imagined, hormone therapy sounds like some very undesirable side effects... Adjuvant, from what I understand, must happen within 12 months of surgery, or you default to waiting until recurrence and salvage (I think because you would then need the HT to weaken vs surgical weakening). So, this whole thing will hinge on getting the insurance coverage to do it -- who knows.

    However, the crux of my question was more to selecting RO. I've seen/read/participated in lots of discussions about how to select the right surgeon. Rates/numbers of procedures, etc. But I haven't seen as much, or just not found it, about how to select a RO to direct radiation therapy. I "get" the idea of a learning curve on surgery in general and davinci in specific. Less clear about such things on a big x-ray machine. So if anyone has thoughts about that side of things, have at it.

    Thanks for your rapid and, as usual, thoughtful reply.

    Dan
    Dx 06jan2017, 53yo
    PSA 7
    Gleason 3+3=6, 2 cores from 12,
    L apex 1mm, 14% and 0.5mm 5%
    Grade T2a
    RP Davinci 10 Apr 2017
    Final Pathology: 36 grams (4x3x3cm)
    Tumor 1.8cm greatest dimension, extrapostatic ext. indeterminate
    Primary Grade 4, Secondary Grade 3, Tertiary Grade 5 (5%)
    4mm span positive margin apex
    "Tumor not obviously beyond the prostate" (at margin), but into striated muscle tissue.
    Extraprostatic tissues, 5 lymph nodes, seminal vessicles all no malignancy.
    pT2c, N0, Mx
    Adjuvant RT scheduled: 39 tx at 70Gy Oct - Dec 2017
    PSA
    1/17 (pre surgery) 7
    8/17 0.04
    10/17 0.06

  5. #5
    DanATX: I am at work, but will respond later today based on what I have done. Talk soon, MM
    DOB:Feb 1958
    PSA: 9/15: 5.9 PC/Father
    DRE: Negative
    Biopsy: 10/1/15. Second Opinion University of Chicago. 9 of 12 cores positive. G6: 5 cores, G7 ( 4+3) 4 cores
    10/12/15: Ct scan/bone scan- Negative
    Clinical Staging: 10/28/15 T2c
    Surgery ( RALP) UC scheduled 12/29/15

    Final Pathology Report; Jan. 6 2016

    15 lymph nodes; no tumor present
    gleason upgraded to 9 ( 4+5)
    EPE; present
    Lymphovascular invasion present
    Right SV Positive
    Left SV and vasa deferentia, no tumor present
    PIN
    Perineural invasion present
    PM
    pT3bNO
    uPSA 2/9/16 0.05
    uPSA 3/23/16 0.11
    Casodex: 4/1/16-8/5/16
    Lupron: 4/15/16....present
    SRT: 6/14/16...8/5/16 38 treatments completed
    8/10/16. uPSA <0.05
    11/18/16 uPSA <0.05
    2/8/17 uPSA <0.05....Loyola University Chicago
    5/15/17 uPSA <0.05
    8/10/17 uPSA <0.05
    11/10/17 uPSA <0.05

  6. #6
    Quote Originally Posted by Michael F View Post
    Hi Dan! Your case must be noted by anyone considering AS. PC can be a wolf in sheep's clothing. Biopsies are not a 100% accurate assessment! Fortunately, you opted for RP and not AS.

    MF
    I feel that this is a very unfair and incomplete statement. If Dan had chosen to enter a formal AS program, he would have had additional testing (Imaging, fusion biopsy, genomics tests, PHI/4K) within a few months of his original diagnosis. These would have either found his more advanced cancer, or; reassured him that AS was a proper choice for him.

    Nobody can know if AS is a correct choice after one biopsy. That is why "active" is the core element of those programs. Properly screened, the enrollees can enjoy their lives without the negative QOL factors of overtreatment.
    DOB: May 1944
    In Active Surveillance program at Johns Hopkins
    Five biopsies from 2009 to 2014. The third and fourth biopsies were positive with one core and three cores <5% and G 3+3. Fifth biopsy was negative.
    OncotypeDX: 86 percent chance of PCa remaining indolent
    August 2015: tests are stable; no MRI or biopsy this year for my AS program
    August 2016: MRI unchanged from 2/2014; PSA=3.9; FPSA=26; PHI=28. No biopsy necessary.

    A NOTE ON PSA: My readings have been erratic for over 10 years; typically being 3.5-4.2, but spiking to over 10 at times.
    These spikes are asymtomatic to me, and resolve themselves. A prostate biopsy can triple the PSA, which lasts for months.
    Last Free PSA was 26. I don't worry about PSA spikes anymore.

  7. #7
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    You must yourself heal completely from the surgery before you start radiation..The radiation will stop the healing process right where it is...if you are still a little incontinent you will remain that way....Also, radiation treatments can be VERY expensive..Don't bankrupt yourself, get a solid estimate of your out-of-pocket expenses before you start.. There are people who can help....
    PSA at age 55: 3.5, DRE negative.
    65: 8.5, DRE " normal", biopsy, 12 core, negative...
    66 9.0 DRE "normal", BPH, (Proscar)
    67 4.5 DRE "normal" second biopsy, negative.
    67.5 5.6, DRE "normal" U-doc worried..
    age 68, 7.0, third biopsy (June 2010) positive for cancer in 4 cores, 2 cores Gleason 6, one core Gleason 7. one core Gleason 9. RALP on Sept. 3, 2010, Positive margin, post-op PSA. 0.9, SRT , HT. Feb.2011 PSA <0.1 Oct 2011 <0.1 Feb 2012 <0.01 Sept 2012 0.8 June 2013 1.1, Casodex added, PSA 0.04 10/2013. PSA 0.32 1/14. On 6/14 PSA 0.4, "T"-5. 10/14 PSA 0.6, T-11. 1/2015 PSA 0.106. 4/15. 0.4, 9/15 1.4, 3/16 Zytiga, 0.04, 5/17 1.4 may switch to Xtandi

  8. #8
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    Dan: Apologies for not answering your question on how to select an RO as I am not experienced (so far!) MM, as promised, will be providing superior suggestions and guidance.

    I was adding a few points to consider as to when to commence RT with the small possibility that RT may be delayed or averted until/if your PSA becomes both clinically detectable and clinically rising. From experience, I was worked up for entry into an SR clinical trial and was told by a top Urologic RO that I was a candidate for SR and should consider undergoing SR whether on not I enrolled in the clinical trial. He provided reprints of the latest published data. I challenged him and asked "how many of the successful SR recipients would have never recurred without SR?" My Primary Uro MD forbid me to consider SR until/unless my uPSA indicated BR. Most fortunately, that has not yet occurred. Had I followed the advice of this "Apex" Uro Oncologist, I would have had SR unnecessarily.

    Thus there are always unknowns and there are never 100% 'absolute' answers. We base our decisions on: 1) current medical data 2) information and characteristics of a specific disease 3) Outcomes probabilities 4) Wisdom of our MDs

    ASAdvocate: Apologies if you have misinterpreted the intent of that statement. It was made from the "after the fact" perspective specific to Dan's post RP pathology findings. Dan's exact PC status on 6 Jan 2017 would have 100% precluded him from any AS protocol. However, his Bx findings alone would have made him a candidate for AS.

    As you pointed out, AS is far more involved than "watch and wait" of the past. Thus if one had the "right" Bx & PSA #s; then AS should be considered 1st. There is no universal AS protocol. It is essential to be Active in maintaining AS. Exactly as you have been doing by following the JH AS protocol and closely monitoring your status. Clearly, had Dan gone down the AS road and his MD(S) applied a "JH AS" protocol, his increased risk status would have likely manifested resulting in a transition to treatment.

    You are "The Expert ASAdvocate" and your guidance is always superb! I am a strong proponent of AS as well. Read the 2nd paragraph! I underwent successful (so far) post RP AS!

    I also look forward to the day not too far away when Imaging, Genomics and Liquid Biopsy technologies will permanently supplant needle biopsies and their associated shortcomings.

    Dan & ASA: I was about to run out the door this AM and hastily replied. i should have waited until now to reply.

    Lastly: getting back to The Wolf analogy: PC creeps up silently with few symptoms. It can disguise itself in wool at the time of biopsy and "hide" from the needle. If left alone inside the chicken pen, it will wreak havoc! And if not eradicated, it will return!

    Good luck keeping The Wolf permanently off of the farm!

    MF
    Last edited by Michael F; 05-19-2017 at 07:09 PM.
    PSA: Oct '09 = 1.91, Oct '11 = 2.79, Dec '11 = 2.98 (PSA, Free = 0.39ng/ml, % PSA Free = 13%)
    Jan '12: DRE = Positive: "Left induration"
    Jan '12: Biopsy = 6 of 12 Cores were Positive: 1 = Gleason 7 (3+4) and 5 = Gleason 6
    March '12: Robotic RP: Left Positive Margins + EPEs. MD waited in surgery for preliminary Path Report then excised substantial left adjacent tissue(s) down to negative margins and placed 2 Ti clips for SR guidance, if needed in future.
    Pathology: Gleason (3+4) pT3A pNO pMX pRO / Prostate Size = 32 grams; Tumor = Bilateral; 20% / Perineural invasion: present
    3 month Post Op standard PSA = <0.1 ng/ml
    1st uPSA at 7 months Post Op = 0.018 ng/ml uPSA remains stable: = 0.020 ng/ml "Mean (+/-) STD" = 0.002 at 66 Months Post Op: (16 uPSAs: Range 0.017 - 0.024) LabCorp: Ultrasensitive PSA: Roche ECLIA
    Continence = Very Good (≥ 99%)
    ED = present

  9. #9
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    Hi Dan, I look at your latest post with keen interest as I appear to very similar to you- RALP on 3/8/17, Final biopsy data G4+3, 4mm margin, pT2c, nodes and tissues negative. The possibility of salvage radiation was mentioned, however this would hinge on PSA #, which of course have not been done yet. So I see it somewhat alarming (to me being so close to in your shoes) that you are already considering radiation even before your first PSA result. Are you and your doc being too aggressive, or is my uro being too conservative and missing something?
    Age:59
    Family history: Father Dx PC ~ age 60 brachytherapy; colon cancer surgery ~age 70 (deceased heart failure ~ age 80); Brother age 67, PSAs low (<2)
    June 2013 PSA: 4.20 DRE: Normal
    Nov 2015 PSA: 5.51 DRE: GP noted smooth, slight enlargement. Biopsy suggested.
    Mar 2016 Biopsy: 2/12 cores positive; G3+3
    Nov 2016 PSA: 8.76
    Dec 2016 Biopsy: 1/12 core positive right lateral apex; G5+3
    3/08/17 daVinci RALP; Pathology: 34 grams, tumor present 13/37 cassettes, Margins involved 4mm distance 6:00-9:00 apex margin; G4+3, stage pT2c; Extraprostatic extension, seminal vesicle, 11 lymph nodes (7R, 4L) all negative
    Cystograms 3/23 and 3/30 suggested small leak, speculated probably contrast agent in bulbourethral duct
    3/30/17 Catheter out (22 day!)
    4/29/17 Ran/walked half marathon in 2hr 39 mins!
    Post Surg PSA: Jun/17 0.01 Sep/17 0.00

  10. #10
    Top User RobLee's Avatar
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    Quote Originally Posted by Michael F View Post
    I was adding a few points to consider as to when to commence RT with the small possibility that RT may be delayed or averted until/if your PSA becomes both clinically detectable and clinically rising. From experience, I was worked up for entry into an SR clinical trial and was told by a top Urologic RO that I was a candidate for SR and should consider undergoing SR whether on not I enrolled in the clinical trial. He provided reprints of the latest published data. I challenged him and asked "how many of the successful SR recipients would have never recurred without SR?" My Primary Uro MD forbid me to consider SR until/unless my uPSA indicated BR. Most fortunately, that has not yet occurred. Had I followed the advice of this "Apex" Uro Oncologist, I would have had SR unnecessarily.
    Quote Originally Posted by njstol01 View Post
    The possibility of salvage radiation was mentioned, however this would hinge on PSA #, which of course have not been done yet. So I see it somewhat alarming (to me being so close to in your shoes) that you are already considering radiation even before your first PSA result. Are you and your doc being too aggressive, or is my uro being too conservative and missing something?
    As you both bring up the "whether or not and when to begin RT" topic, you may both be interested in this recent posting (or you may have seen it already, as it has appeared on several blogs): Conflicting messages after surgery for high-risk patients from radiation oncologists and urologists
    Remember, remember... MOVEMBER ( ˇ෴ˇ )

    Me: Age 66, 62 when this started
    Oct 2012 & 2013: PSA=4, DRE negative
    Mar 2014: PSA=9, TRUS biopsy negative
    Mar 2015: PSA 12, Oct PSA 20 lots of Cipro
    Mar 2016: PSA 25, changed Uro

    Jun 2016: MRI fusion biopsy, tumor right base, 2 cores 100% +2x40% all G8 (4+4)
    Aug 2016: DaVinci RP (-)margins & 11 lymph nodes(-) 53g 25% involved, pT3B n0m0
    Grade group IV, 6mm extraprostatic extension w/PNI, bilateral seminal vesicle invasion
    Jan 2017: 18 months Lupron ADT initiated, uPSA's ~.03
    May 2017: AMS800 implanted & revised 5/15-7/21
    Aug 2017: 39 tx (70 Gy) RapidArc IMRT 8/14-10/9

    Mrs: Age 64, Dec 2016 Dx stage 4 NHL/DLBCL, Primary Bone Lymphoma
    spinal RT, 6X R-CHOP21+intrathecal MTX via LP. Only 1% of lymphomas are Primary Bone
    "Everyone you meet is fighting a battle you cannot see"

    Read our story at Cancer Couple Blog

 

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