First Post

VNT
VNT Member Posts: 3
in Prostate Cancer #1

Hi

I am 55 and live in Maine.  I had my first and only PSA test at the end of June, came back at 12.4

I have a appointmenmt with a Urologist (associated with Maine Medical Center, so probably as well qualified for medical in the area) on Tuesday.

I am in good general health, only thing concerns me is sometime I have pain in the perenium area when sitting, more uncomfortable than anything and sometimes I have sensation that someone is tugging on either or both testicles when sitting which at time gives me cramp like sensation on my right side, like a kidney stone, had one of those years back, although this is more of a cramp not anywhere as painful.

Are these signs of cancer or could they be something else?

I have been reading, Scardino, Walsh and few others plus networked to local support group plus visiting web boards.

I assume will have DRE and then biopsy.  I will request a 2nd PSA test with the FreePSa or ask about the 4Kscore test

From what I can read this doctor I will be seeing, is a proponent of MRI imaging for biopsy but it appears from reading insurances dont allow MRI fused or guided  for initial biopsy.  I assume one can push to have an 3T  MRI to see extent of any cancers after initial biopsy?  My understanding is initial grading of biopsy is 40% innacurate as to post RP biopsy which upstage 40% of the time, to me this must mean the blind biopsy miss the major cancers and this indicates to me that this could impact treatmet one chooses.

My biggest concern regardless of staging that I wont have a good feeling whether the cancer would be contained to the prostate, ie ECE, semival vessles etc

From reading if that is the case, one would want the 3T MRI with the endorectal coil images  to better understand what they are up agaisnt. 

Aslo from reading it sound like if the cancer is suspected to be outside the prostate but localized, one  should probably favor a treatment of RT, preferbly some HDR and IMRT since the HDR can deal with the tumors and the IMRT can target the rest of the prostate and the surrounding areas where the localized cancer may be?

I know one could also opt for the surgery and some follow up RT treatment, downside would be having side effects of both? Advantage here is one would have the post op staging and PSa testing to determine if cancer has been removed versus the RT treatments.

 

Are there any stats for PC that is localized, which treatments have better out comes, RP vs RT ?

 

 

 

I know this is all early but trying to get my ducks in a row and have some knowledge.

 

Also I have diasability insurance both short and long through a company called the Standard, any feed back dealing with disability insurance claims with these type of private insurers would be aprecaited, my STD is 26 weeks but dont know how much pushback I will get if I use it.

 

Thanks

 

Mike

 

 

Comments

  • GeorgeG
    GeorgeG Member Posts: 152
    #2
    Sorry that you have found

    Sorry that you have found your way here but welcome to the club. There is a lot of knowledge on this site That should help you. That said, you are getting up to speed quickly so far so congratulations on taking charge of your situation and getting educated.

    The process in imperfect throughout so at most stages you are playing the odds, not dealing in absolutes. You need more information before charting a course so I would concentrate on testing and recommendation right now. There are no reliable symptoms for self diagnosis of PC so I would not focus on those issues. We are all getting older and plenty of stuff hurts or doesn't work as new. The biopsy process is pseudo random, that is the core positions attempt to get a good sample but the process is not absolute. If you can get insurance to pony up for a fusion biopsy (MRI image first) then you have a better chance of getting a complete picture with the cores. The higher the tech level of the MRI, the better the assessment of the extent of the lesions so the 3T ER coil scan is better if available. Free PSA is also a good idea. DRE may also add some useful info. Most PC is slow growing so you will have time to digest your test results and recommendations and at that point you can start deciding on a treatment approach. For now work with the best doctors and facility that you have access to so that you improve your odds of a good outcome. I had surgery five states away and am currently having radiation for eight weeks out of town. I live in a small town and did not have confidence in my local options.

    take a deep breath and get a complete picture, then work through your options going forward. Only 3% of PC is fatal and newer treatments are delaying even those guys for many years now. 

     

    george

     

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    edited August 2017 #3
    .

    PSA is an indicator only. It is affected by many factors, sex , riding a bike before, hard stool, and a large prostate placing pressure on the uretha, so more PSA is secreted. From your post, it appears that there has not been a Digital Rectal Exam to date, so you have no idea what the size of your prostate may be. It may be that the symptoms that you are experiencing, may be from an enlarged prostate..ask the urologist.

    Only a biopsy can diagnose prostate cancer, which you have not had.

    Hoping for the best for you, and that you will not become a member of our club.

  • SubDenis
    SubDenis Member Posts: 130 Member
    #4
    I am also new here a week or

    I am also new here a week or so and there is great info on this forum.  Waiting is the hardest part.  Breath!  Denis

  • VNT
    VNT Member Posts: 3
    edited August 2017 #5
    Thanks for the replies.

    Thanks for the replies.

     

    Are there any good books on radiation treatments, maybe ones explaining what equipment to look for? and basics of how the treatments are performed.

     

    I know the older is EBRT, newer Intensity Modulated some with image guiding(I assume the gold markers).

    Then their is the cyberknife where the company claims it can reduce number of fraction and has better accuracy.

    Also looking for explanation of what is radiated in salvage radiation and how do they aim it.

    These are some of the questions I have to educate myself.

     

    I would be interested in some down to earth level explanations to these type of questions

  • jimbobaz
    jimbobaz Member Posts: 10
    edited August 2017 #6
    first psa at 12.4

    I would not delay getting a second psa with %free psa, mainly to confirm the initial score.  If confirmed, and with low %free psa, I would get the biopsy ASAP.  I had my psa score jump from 7 to 9 in a two month period, that together with an 11% free psa were the deciding factors for me to get a biopsy.  I am now nearly 7 weeks post robot assisted RP.

     

    Jim 

  • VNT
    VNT Member Posts: 3
    #7
    jimbobaz said:

    first psa at 12.4

    I would not delay getting a second psa with %free psa, mainly to confirm the initial score.  If confirmed, and with low %free psa, I would get the biopsy ASAP.  I had my psa score jump from 7 to 9 in a two month period, that together with an 11% free psa were the deciding factors for me to get a biopsy.  I am now nearly 7 weeks post robot assisted RP.

     

    Jim 

    Dont worry, will ask for

    Dont worry, will ask for repeat blood test with freePSA or the 4kscore and will get biopsy.  I am also going to ask about imaging, want the 3Tmri with endorectal coil.

     

  • GeorgeG
    GeorgeG Member Posts: 152
    #8
    The main radiation options

    The main radiation options are cyber knife (photon beam), Varian True beam (photon beam), SBRT (photon beam, hypo fractionated with 5 or so treatments) and Proton (proton beam). Proton is the newest and most expensive. Most of what I have seen shows proton beam to be more expensive and with similar outcomes as photon beam. Time will tell. SBRT is certainly more convienient but less data for PC than the other photon beam approaches. The proponents claim better results, time will tell. The largest number of spirited debates will be on surgery vs radiation and the different radiation approaches. Most studies show surgery and radiation having similar outcomes. Some here advocate radiation if you probably have extracapsular extension because you might wind up there anyhow even if you start with surgery. Surgery has immediate side effects that get better. Radiation has lower initial side effects that get worse later. I was hurting the day of surgery but no side effects from radiation until 5 weeks.

    The most advanced forms or radiation use markers such as fiducial gold markers (image guided), gel spacers to protect the rectum, intensity modulated (beam varies in intensity in different positions, and 3D (beam rotates around patient and produces a 3D field.

    Then there is with or without ADT. Most of the studies show that ADT with radiation yields better results. ADT side effects can be significant.

    Salvage radiation is a last attempt at cure if the primary treatment fails. I am in this camp. I started with surgery.

    Research is great and being informed is the right approach but make sure that you are at a top notch institution using the best doctors that you have access to because it is a lot to navigate. 

    George

     

  • Clevelandguy
    Clevelandguy Member Posts: 1,210 Member
    #9
    Study, Study, Study

    Hi,

    Good advice from the above folks, you need more tests to determine if you do have Pca and what extent it is invading your prostate.  Sounds like you are starting to study all the treament options which is good.  Work with your doctors and your support network to help you make the decision you want for your situation.  This board is a good source for the "been there done that" type of expertise.  Just remember each type of treatment has different cure rates & side effects, study them carefully so you know what you are getting into.

    Dave 3+4

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #10
    GeorgeG said:

    The main radiation options

    The main radiation options are cyber knife (photon beam), Varian True beam (photon beam), SBRT (photon beam, hypo fractionated with 5 or so treatments) and Proton (proton beam). Proton is the newest and most expensive. Most of what I have seen shows proton beam to be more expensive and with similar outcomes as photon beam. Time will tell. SBRT is certainly more convienient but less data for PC than the other photon beam approaches. The proponents claim better results, time will tell. The largest number of spirited debates will be on surgery vs radiation and the different radiation approaches. Most studies show surgery and radiation having similar outcomes. Some here advocate radiation if you probably have extracapsular extension because you might wind up there anyhow even if you start with surgery. Surgery has immediate side effects that get better. Radiation has lower initial side effects that get worse later. I was hurting the day of surgery but no side effects from radiation until 5 weeks.

    The most advanced forms or radiation use markers such as fiducial gold markers (image guided), gel spacers to protect the rectum, intensity modulated (beam varies in intensity in different positions, and 3D (beam rotates around patient and produces a 3D field.

    Then there is with or without ADT. Most of the studies show that ADT with radiation yields better results. ADT side effects can be significant.

    Salvage radiation is a last attempt at cure if the primary treatment fails. I am in this camp. I started with surgery.

    Research is great and being informed is the right approach but make sure that you are at a top notch institution using the best doctors that you have access to because it is a lot to navigate. 

    George

     

    RT

    VNT,

    I considered radiation before having surgery (DaVinci). George gave a great overviiew of what is available. My radiation oncologist (whom I knew before the consultation) recommended for me IGRT.  It uses fiduciaries, and they were going to plant transponders for accuracy, a system with a trade name of Artemis, which has been around for a few years.  IGRT (with or without Artemis) is a substantial move ahead of IMRT in accuracy, and approximates CK in precision.  Some guys here on occasion do not differentiate clearly enough between IMRT and IGRT; they are related, but different (I am NOT referring to George, whose views I don't even recall).  IGRT does remain a fractionated system, and I was gonna require about 40 trreatments for me to reach 76 Gray of radiation. A "Gray" ('Gr') is a meausre of applied therapeudic radiation. Total SBFRT Gr and fractionated Gr are usually about equal after all treatments are completed.

    My center did not have Cyberknife, but did have Varian True Beam (mentioned by George), which is also an SBRT machine, close to identical to Cyberknife. True beam vs CK has been apptly referred to by some here as FOrd vs. Chevy, very spot-on.

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