Hello just diagnosed and very frightened

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  • Tech70
    Tech70 Member Posts: 70 Member
    Steve1961 said:

    Okay

    so when I show up for the mri hopefully they will. Be using the apron but if not what then get up and leave or should I call to find out first 

    Prep

    If they tell you to prep for the MRI by taking an enema before your appointment, they are planning to use an ERC.  If you ask if there is any prep required and they say no, then they probably are planning to use a phased array pelvic coil.  That was my experiene

  • grahambda
    grahambda Member Posts: 18
    Great study of 100,000 patients with recommendations..

    Steve check this out..

    https://www.youtube.com/watch?v=aGN2gUVFJEE

    and

     

    https://prostatecancerfree.org/compare-prostate-cancer-treatments-high-risk/

     

    Helped me.

     

    Good luck!

     

     

  • Steve1961
    Steve1961 Member Posts: 301
    Oncotype

    wow so many things to consider so confusing.anyone know about this oncotype dx testing .i see harely anyone has done it. Apparantly it tells you how aggressive the cancer is and helps u with your trwatment decision. Can Gleason scores u get be wrong . when u get a 3-4 score can they be wrong and it be 4-3 or worse .  If this oncotype dx is so good why aren’t all dr using it.r they not using it because it is relatively new and they don’t know enough about it . I am just trying to make a right decision beteen surgury brachytherapy and I want to   know exactly where I am at now without having drs guess because of one pathology report. Should I suggest getting oncotype dx testing done or am I over thinking all this just when I start feeling good about starting to make a decision something else pops up to cause worry thanks any way bout about oncotype dx would be appreciated 

  • Tech70
    Tech70 Member Posts: 70 Member
    edited January 2018 #105
    Oncotype

    Oncotype DX testing is usually for folks who are candidates for active survelllance.  I was such an person and I had Oncotype testing done.  The result was a GPS of 19 which confirmed my decision to go with AS.  I have a less than 1% chance of developing metasatic PCa or dying of PCa within the next 10 years based on that GPS.  However if your Gleason is 4+3  you would be marginal for AS.  However, if you did get the testing and your GPS came back high, say 60 or greater, then you would probably rule out AS extirely.  Also, if I recall, you're too young to be on Medicare so you would want to check with your insurance company to see if they cover it.  The test is a bit over $4000 which is covered by Medicare but might not be by other insurance.

  • contento
    contento Member Posts: 75
    Yes Steve

    Steve, I'm not sure you can ever get a perfect clear gleason score since to some extent it is subjective depending on the pathologist. However, I believe that the most accurate  gleason can only be attained if the pathologist  has your prostate in hand. I had 3 biopsy 's before they found my cancer and the last biopsy revealed  a gleason 7 (3+4).

    I opted  for surgery  and once my prostate was removed and evaluated my gleason was upgraded to 8 (4+4). So yes it it is very possible that your gleason score can change.

  • Steve1961
    Steve1961 Member Posts: 301
    contento said:

    Yes Steve

    Steve, I'm not sure you can ever get a perfect clear gleason score since to some extent it is subjective depending on the pathologist. However, I believe that the most accurate  gleason can only be attained if the pathologist  has your prostate in hand. I had 3 biopsy 's before they found my cancer and the last biopsy revealed  a gleason 7 (3+4).

    I opted  for surgery  and once my prostate was removed and evaluated my gleason was upgraded to 8 (4+4). So yes it it is very possible that your gleason score can change.

    got ya

    so contento  how are u now is all good i hope.

  • Steve1961
    Steve1961 Member Posts: 301
    Wow what roller coaster

    well looks like I was misinformed again....or was I ....Stanford surgeon tells me a am not a candidate for brachytherapy.reason why because I am intermediate...also because I have urinary problems now and they are pretty extensive ..brachytherapy would most likely make those problems much worse...then he stated that if brachytherapy was not successful there is no plan b because u won’t be able to remove prostrate after brachytherapy...he also said I didn’t need a bone scan even though I have done it already..hr said if they see something on the scan it’s not from the prostrate. And then u have to deal with that and have biopsies and maybe more and most of the time it was nothing.   the Stanford surgeon was very thorough he said though the DRE is ok tool it could be on the other side ...he said the real only way to know for sure is to remove send it out to the lab and go from there...he did say will all mt stats and his experience that I have a 95 % of no reoccorrance which is great...also said no need for mri or ct scan because they won’t show a lot for someone at my stage but if I was to get one the mri is the one to get ..my new urologist suggested anct scan instead of mri.....wow this new neuro gave me sooooo much hope about brachytherapy and now that’s out the window....I am meeting with the brachytherapy dr today just to see what he has to say...i comes to a point of who do u believe ....this Stanford surgeon has been st Stanford since 2006 has over 1200 surguries under his belt is 45 years old and definitely seems like he knows what he is doing and takikng about then again I thought the same of the Nero I saw who is 65 and been at it for 36 years and had ovef 2500 surguries under his belt ....wow what a rollercoaster any thoughts u seem to trust all of you people over drs 

  • contento
    contento Member Posts: 75
    Steve

    Steve, it should be interesting today to hear the oncologists response  to the Standford surgeon 's rationale  as to why you are not a candidate  for Brachytherapy i.e. intermediate grade w/ urinary  issues. Make sure he addresses these concerns. If not Brachytherapy what about IMRT ? Hopefully you'll cover all the radiation type options and then you could make your decision as to  weather you do surgery  or some type of radiation. --  good luck -- contento

     

    PS -- I'm doing just fine as my psa is non- detectable..

  • Steve1961
    Steve1961 Member Posts: 301
    roller coaster contunues

    wow i cant believe some of these guys are drs  radiologist lol just met with a total schmuck radiologist who does brachyology...what a jerk and a liar..he bad mouthed stanford  and the surgeon i saw..he said stanford is the worst place to have surgury..he said he has done over 5000 in 18 years lol i queationed him on that because i do math lol i said that comes out to 1  a day he yep i just did 2 today across the bay...he had no receptionist the room had tools out everwhere  and he straight up lied and said yopu can have your prostrate out after radiation  and i know u cant period.....WOW unreal....so i have an app with UCSF brachytherapy come on they r supposed to be the 4th best in the cou ntry hopefully i will the truth out if them if i am a candidate or not...and then i will meet with a surgeon from ucsf  it will interesting if they both haver different views at the same place ..i sure hope not i am getting frustrtaed and upset which i dont need.in fact i think i will go to stanford as well for brachyherapy consult  to see if thjey differ from their top surgeon asa well.i plan on holding all thier  feet to the fire thats for sure i want answers and straight one or i will go above their head at the universities .hope i can make a decision soon

  • Steve1961
    Steve1961 Member Posts: 301
    Learning the hard way

    Wow there are a bunch of no good lying scum bad drs out there....maybe because I live in sickening northern calif near Silicon Valley and everything is about money here it’s disgusting the drs and surgeons and radiations assholes I have been seeing unreallll..the last 3 brought up money sooo many times saying I don’t make money doing this I would make more I had u do this and that wowwww I can’t believe thar a lot of people fall for this crap ...I hsve learned only going to universities from here out..it seems they do care about you and are not getting paid by each greedy procedure at least I hope not ....

  • Steve1961
    Steve1961 Member Posts: 301
    Wow

    and thanks to all of u wonderful people and knowledge...very helpful over the last 6 weeks ..I appreciate everything.its because of your advice I am not falling for any of this....yes u were all right to take your time ..lol...all yhe so called specialists  say u have  to wait at least 6 to 8 weeks or more afyer a biopsy before any treatment so their u go about not being in s hurry ...only good encouring words from every quack I have seen is that they all said I am going to be just fine after this ...I believe that ..thank u all and god bless u ..I will keep posted..hopefully not as much ...and with better news about treatment .thanks agsin

  • Steve1961
    Steve1961 Member Posts: 301
    edited January 2018 #113
    Tech70 said:

    ERC Avoided

    I had an MRI about 6 weeks ago and they used a pelvic phased array coil, essentially an apron-like device resting on the pelvis.  The radiologist's report was conclusive ( no lesion of concern, thank goodness) and there hae been studies showing equivalent results using both PPA and ERC.

    Thanks

    yep cancelled the last mri they were going to use ERC  I said thanks but no thanks ..called another new hospital and they use the apron going there next week....thanks for saving me a bit more misery and stress I appreciate it sooo much ...btw they were not happy about cancelling oh well I wasn’t happy hsving to call them 6 times either..

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    .

    Message from Steve1961,


    hello i am the pain in the butt lol that has quite a long thread going..it seems that you my friend are very knowledgeable about alot of treatment.... I.want YOUR opinion because i respect all of your opinions i have read.....i have seen 4 quacks so far and didnt pay any attention to anything they had to say except they all said that i will be fine and most likely cured  which is good....so i did go to Stanford and met with RP surgeon that has 1200 under his belt....he highly stated that i wasnt a candidate for Brachytherapy because i am intermediate..Also he said that with brachytherapy  there really is no plan B if it comes back...hmmmthats the only comment i didnt go for....so this week met with a surgeon from UCSF   26 year veteran has over 1200 open and around 500 robotic ..this man said i am an candidate fro brachy and cyberknife..he explained it all to me  and he even said that surgery is invasive and that should be the last resort  and in  my case he felt strongly i should
    have one of the radiation therapies...he said at my stage the outcome are all the same for a cure in the 90% with any treatment i choose...today met with CK specialist that did swingshiftworker 6 years ago....so my stats are 3 cores positive  3+3  3+4 3+4  20 % 60% 70%  low psa 8.1 DRE clean i guess where they were located and all this put me at the lower end of the intermediate risk which makes me a candidate......so this ck  has been around for a while but only has 10 years of stats.....which are good...they use the same radiation as the other methods  and expect the same outcome...my question is should i believe them ... this method seems way to easy and effortless ..can i be soo lucky to have this simple procedure done  and be free of PC for ever...also i will be going to stanford again to their ck clinic because they pioneered it back in 1990  and have made MAJOR advances  and apparent have done over 7000 treatments  so they say..oh also waiting on Stanford to re look over my
    pathology slides  hopefully all will stay the same or even better i..thanks for your time   and input i cant say how much all u people have helped me thru my journey..i hope i can figure out a way to give back..sure has been a tough ride  making a decision  i think the treatment part will be easier  thanks again..just wondering what u think about ck and everything i have said...also going for a brachy consultation with an expert lol  but i have some existing urinary problem that may cause me major problems with brachy that i dont need will discuss that with him at appointment  thanks  again.....man i hope my insurance will cover consultations"

     

    Dear Steve,

    I wonder, did you have a T3 MRI yet. This image test is needed for any type of treatment that you will have so you will be able to better quantify if the cancer has or has not escaped the prostate. Eash of these institution likes to do their own MRI, so if for example you are treated at UCSF they will want to do the MRI and probably will not except the results from certain other institutions.

     

    With reguard to SBRT, of which cyberknife is one of the machines that deliver.

    You mention that you were told that Stanford did 7000. Well that number is high and probably includes all SBRT's done to include treatment for parts of the body other than prostate...ie brain, etc, etc. They probably have done 500 to 700 tops for prostate cancer treatment.

    Yes Stanford pioneered cyberknife for prostate cancer, however the doctors who originated cyberknife for prostate cancer  with them ,have since switched to other organizations. 

    Here is a nine year study of SBRT done with cyberknife by a doctor Katz in NYC, who I believe has treated the most prostate with cyberkife.

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

    Nine-year outcomes after treatment with SBRT

    Posted on January 6, 2016 by Sitemaster

     




     

     

     

     

     


     
     

    11 Votes

     


    Katz and Kang will present their 9-year outcomes on 515 patients treated by stereotactic body radiation therapy (SBRT) at the Genitourinary Cancers Symposium tomorrow (see abstract no. 20; “Stereotactic body radiation therapy for low-, intermediate- and high-risk prostate cancer: disease control and quality of life at 9 years”). This represents the longest tracking of SBRT outcomes — just 1 year short of the IMRT tracking reported by Alicikus et al. on a starting cohort of 170 patients treated at Memorial Sloan-Kettering Cancer Center.

    The patients were treated between 2006 and 2010 using the CyberKnife platform.

    • 324 were low risk, 139 were intermediate risk, and 52 were high risk according to NCCN definitions.
    • 70 patients received adjuvant ADT for up to 1 year.
    • 158 patients, all with Gleason score < 4 + 3, received 35 Gy in 5 fractions.
    • 357 patients received 36.25 Gy in 5 fractions.
    • Median patient age was 69 years.
    • Median patient PSA level at diagnosis was 6.5 ng/ml.

    After a median follow-up of 84 months, the authors report the following oncological control data:

    • 9-year freedom from biochemical failure was
      • 95 percent for low-risk men
      • 89 percent for intermediate-risk men
      • 66 percent for high-risk men
    • Median PSA was 0.11 ng/ml (at 78 months)
    • No difference in biochemical control for the lower vs. the higher radiation dose (for the men with Gleason scores of < 4 + 3 = 7)
    • 2 deaths from prostate cancer (i.e., an 0.4 percent prostate cancer-specific mortality rate)
    • 74 deaths from all causes (i.e., a 14 percent overall mortality rate)

    They also report the following toxicity data:

    • Late rectal toxicity:
      • Grade 2: 4 percent
    • Late urinary toxicity:
      • Grade 2: 9.5 percent
      • Grade 3: 1.9 percent
      • Grade 2 or 3: 6.9 percent for the lower radiation dose vs. 13.2 percent for the higher dose.
    • Patient-reported bowel and urinary quality-of-life (based on EPIC questionnaire data) declined at 1 month then returned to baseline by 2 years; sexual quality-of-life declined by 29 percent at last follow-up.

    These are clearly excellent results for any kind of radical therapy. The authors conclude:

    These long-term results appear superior to standard IMRT with lower cost and are strikingly similar to HDR therapy.

    While it’s tempting to conclude that neither the higher dose of radiation, with its greater toxicity, nor the addition of ADT conferred any incremental benefit, that can only be proved with a randomized clinical trial. Until so proven, it must be understood as only a good hypothesis to be discussed by patients with their radiation oncologists. It is also worth noting that these data reflect the outcomes of one very expert practitioner. There is an SBRT registry currently collecting data across many treatment centers.

    The reported outcomes are nearly identical to those reported at 7 years (see this link,this link, and this link), indicating very stable control and no additional late-term toxicity with longer follow-up. In light of that, its low cost, convenience, and the fact that the standard of care, IMRT, has only one more year of follow-up on a much smaller sample size, it’s difficult to understand why some insurance companies still balk at covering SBRT for low- and intermediate-risk patients. Medicare does cover this.

    Editorial note: This commentary was written for The “New” Prostate Cancer InfoLink by Allen Edel.

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

    Steve, please note that in this study for men  with intermediate prostate cancer, there is a 89 percent cure rate; the perimeter of the radiation can be easily expanded immediately outside the prostate.

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

    SBRT is given in four or five sessions, depending on the preference of the doctor administering. 

    I cannot comment on which institution, Stanford or UCSF will provide a better outcome. with sbrt. They are probably very similar. You will have to do your research in order to select one over the other.

    The side effects with sbrt are minimal. Generally, you can go on with your normal activities the days that you are treated.

    For the most part you will not be able to ejaculate after sbrt.

    It takes a while to reach nadir. Quite often 18 to 2 months out , there is a radiaition bump, then the psa reading continue to lower levels. Generally you want the PSA to go under 1.

    SBRT is a very precise radiation treatment, as far as I know the most precise, more so than IMRT.

    The cure rate is very similar to IMRT.

    The cure rate is also similar to surgery, but with less side effects

     

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

    Brachytherapy

    Not an expert about brachy, but with intermediate cancer , some seeds will also have to be implanted outside the prostate.I think that these seeds need to have less radiation. The seeds have a 3 mm range. It may not be as effective outside the prostate....I am not an expert, just making a laymans guess. I suggest that you speak with a radiation oncologist who specializes in brachy.

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    .

  • Chuckect
    Chuckect Member Posts: 45
    edited February 2018 #115
    A lot of good advice, and a

    A lot of good advice, and a lot to think about, so relax think twice and then act...   as to the virtual beer, ill be standing by to see how that works...

  • Steve1961
    Steve1961 Member Posts: 301
    edited February 2018 #116
    Thanks

    Finally getting the t3mri dine and yes they r using endo recto coil..I know people have said to stay away from it but it by far produces the best image u can ask for far superior than the apron...the results will help me a lot in my decision as well ..also getting another PSA dione as well been 4 months ...hope all is the same...we shall see...I am closer to maki g a decision ...I am holding all drs feet to the fire though ...I am putting them on the spot ...getting odd answers from some lol..even drs answer by Saying that’s weird I wonder why he would say that....a lot of thinking and evaluating to be done that’s for sure ,,,like on the 12th I will be meeting with the Stanford brachytherapy/cyberknife and I will flat out ask him why there Stanford’s top surgeon definitely says I am not a candidate fir radiation and advised against it ....can’t wait to hear this answer ....thanks everyone for listening 

  • Old-timer
    Old-timer Member Posts: 196
    Hello again, Steve

    So many "experts" saying so much! I can't read it all, but I am ever so interested. Have you reached a decision about what treartment you are choosing? When will treatment begin or take place? Are you still scared? What are you thinking now?

    Remember me? I am a 26-year prostate cancer survivor. Anybody interested in how I felt about it 26 years ago and how I feel about it now, at age 91?

    Old-timer (Jerry)

  • Steve1961
    Steve1961 Member Posts: 301
    edited February 2018 #118
    Hey.need advice

    so meeting with surgeons and radiologists will be making a decision within weeks I hope . All drs saying all positive things but when I ask shoukd I get anither PSA test  I am told not necessary . It’s been 4 months since last psa 8.1  biopsy now 2 months ago who knows my psa could rise I hope not but what if it’s now. 12 this could be a game changer I wouldn’t be on the low end of intermediate anymore thats  why I am Bring told I am a good candidate fir brachy and cyberknife  any thoughts I think I am going to get a recent psa also mri is Tuesday night hopefully this will all help me in my decision    By the way I can thank all if u in helping make the right decision with all your good advice about taking my time and getting many opinions 

  • Steve1961
    Steve1961 Member Posts: 301
    I’m tired of all this

    took a break after all I hsve going on ..I had to put my dear old 15 year old dog down last week...it Happened suddenly .....man heartbreaking ...........so my bone scan was clear  also t3 mri looks good corresponds with biopsy looks to be contained knock on wood.   UCSF Cyberknife says I am the perfect candidate 4 sessions over 2 weeks done 92 % success rate...seems tooo easy ......went to Stanford last week radiologist hi dose brachytherapy with 20sessions radiation 97% success rate if my PSA  is under 10 which it is now but if it is over 10 now then brachytherapy 20sesssions radiation and hormone therapy for 4 months 97% success rate....so getting another PSA test Friday ..if my PSA is over 10 I think I may opt for surgery ...I mean come on brachytherapy radiation and hormone ..the hormone side effects last about 1.5 years ......sooooo damn confusing ....and UCSF Cyberknife only 4 sessions and done I find this hard to believe.stanford does Cyberknife but not on the prostrate because they are still guessing the dose of radiation to give each patient it’s not perfected yet  so Stanford will not touch it u til it’s perfected......oh great I was thinking about Cyberknife now I don’t. Now ...I guess I will wait and see what my PSA is ...will stay in touch ....my goodness this is turning  into a soap opera 

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    edited February 2018 #120
    SBRT (cybernife) was invented

    SBRT (cybernife) was invented at Stanford. Prostate cancer was successfully treated there. SBRT given by  cyberknife and other machines such as varion is widely used at major institutions of learning, that are centers of excellence. Did the radiation oncologist at stanford who told you this had a different specialty that he wanted to sell you?

     

    https://stanfordhealthcare.org/medical-treatments/c/cyberknife.html

     

    Once again here are nine year results of this treatment type. These results look pretty good to me.

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

  • Old Salt
    Old Salt Member Posts: 910 Member

    SBRT (cybernife) was invented

    SBRT (cybernife) was invented at Stanford. Prostate cancer was successfully treated there. SBRT given by  cyberknife and other machines such as varion is widely used at major institutions of learning, that are centers of excellence. Did the radiation oncologist at stanford who told you this had a different specialty that he wanted to sell you?

     

    https://stanfordhealthcare.org/medical-treatments/c/cyberknife.html

     

    Once again here are nine year results of this treatment type. These results look pretty good to me.

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

    Disregard the Stanford 'advice'

    The Stanford folks that you talked to haven't told you the whole story. The current staff may not know how to properly run SBRT, but Stanford did have an experienced SBRT team for prostate cancer. THe team was headed by Chris King, but he left for UCLA. Don't know the background of all of this, but Stanford then closed the prostate cancer SBRT effort for some time. Now back up apparently.

    http://radonc.ucla.edu/prostate-cancer-sbrt

    If I were to choose SBRT and lived in your neighborhood, I would go with the Gottschalk group at UCSF becauses of their experience.