Hello just diagnosed and very frightened

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  • Steve1961
    Steve1961 Member Posts: 301
    edited February 2018 #122
    STANFORD

    SO STANFORD DID SAY THAT DR KING WAS THE TRIAL CYBERKNIFE DR AT STANFORD  AND HE TOOK THE TRIAL WITH HIM TO UCLA  AND STANFORD HASNT OPENED ANOTHER ONE YET....HMMM  ALSO THE STANFORD RADIOLOGIST SAID SINCE THE CANCER I HAVE IS IN THE LOWER REGION THERE IS A 30% CHANCE OF ESCAPE...WHY THE LOWER REGION IS MORE RISKY THAN THE REST OF THE PROSTRATE I DONT KNOW...SO I ASKED THE SURGEON AT STANFORD IF THIS IS TRUE  WILL WAIT FOR HIS REPLY AND LET U ALL KNOW....WAS ALSO TOLD DOING CYBERKNIFE IS A GAMBLE BECAUSE THE DONT KNOW THE EXACT DOSE TO GIVE EACH PATIENT  ITS NOT AS SIMPLE AS DIVIVDING 40 TREATMENTS BY 4,,, SO I ASKED THE UCSF CYBERKNIFE DR THIS QUESTION...I ASKED SO HOW DO U CALCULATE THE DOES OF RADIATION TO USE  AND IS IT THE SAME FOR EACH PATIENT  ...WILL ALSO WAIT FOR RESPONSE...HOPEFULLY ALL U PEOPLE CAM HELP ME DECIDE WHO IS FULL OF IT OR NOT.....ALSO I AN SEEING UCSF CYBERK NIFE DR TOMMORROW...I HAVE ATON OF QUESTIONS TO ASK..I WILL ASK HIM IF I DECIDE TO DO BRACHY   I WILL NEED NEED 21 TREATMENT OF RADIATION AS  WE.... SO WHY COULDNT I DO JUST 2 TREATMENTS OF CYBERKNIFE INSTEAD OF 21 TREATMENTS OF STANDARD RADIATION..MAKES SENSE TO ME  RIGHT.. I WILL OUT THE PIECES OF THIS PUZZLE TOGETHER SOON..ALSO GETTING MY LATEST PSA SCORE TODAY..I PRAY ITS STILL BELOW 10  IF NOT NO WAY I WILL DO BRACHYTHERAPY  AND 21 TREATMENTS OF RADIATION  AND HORMONE FOR 4 MONTHS,,I WILL JUST HAVE IT OUT  SCREW ALL THAT  WILL KEEP IN TOUCH

  • Old Salt
    Old Salt Member Posts: 910 Member
    Please

    Steve, 

    We are more than willing to help you learn, but please don't post essentially the same story twice. I already responded in the other thread. And don't be so negative/derogatory about the medical folks that are trying to help you.

    Note that SBRT is never done in two sessions as monotherapy.

    PS: You should take better notes from your visits and, if you can,  take someone along to back you up with respect to what the doctors actually said. Too many misunderstandings, it seems to me.

  • Steve1961
    Steve1961 Member Posts: 301
    Thanks

    I record each session on my iPad. ..don’t need notes .... Stanford surgeon actually called me  back to respond and he said he has never heard of cancer being in the bottom region of the prostrate having a 1 in 3 chance of escaping ...he also said he doesn’t know why the radiologist would say that unless the radiologist knows something that he doesn’t ...so who do I believe ....this is what frustrates me ....all these different opinions and supposedly facts from drs one would hope they are facts ...

  • Old Salt
    Old Salt Member Posts: 910 Member
    Steve1961 said:

    Thanks

    I record each session on my iPad. ..don’t need notes .... Stanford surgeon actually called me  back to respond and he said he has never heard of cancer being in the bottom region of the prostrate having a 1 in 3 chance of escaping ...he also said he doesn’t know why the radiologist would say that unless the radiologist knows something that he doesn’t ...so who do I believe ....this is what frustrates me ....all these different opinions and supposedly facts from drs one would hope they are facts ...

    Nobody here

    ever said, or wrote, that the decision process would be easy...

    On the other hand, it is good to have several options.

  • Steve1961
    Steve1961 Member Posts: 301
    One last dr

    ok saw hdr brachytherapy expert at UCSF been there for 22 years has done over 2000 treatments he seems very confident that 2 treatments done in one visit one in the afternoon next one ithe next morning will have to stay overnight will give me in the low 90 s for full recovery without reoccurrence .........sooo it’s up,to Friday now ..I am seeing UCSF top surgeon peter Carroll he has done over 2000 robotic surgery if he says that I really don’t have to do surgery then brachytherapy it is but if he suggests surgery then I will have to:make a serious decision and may need help ..it will either be 3 to 1 saying no surgery or 2 and 2 ..will return Friday night ...thanks to everyone all the advice about seeing as many dr as I could was great ,I am so blessed to be i this position ..I hsve great university hospitals close by and have seen many respected experts and I don’t  this for  granted 

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    Steve1961 said:

    One last dr

    ok saw hdr brachytherapy expert at UCSF been there for 22 years has done over 2000 treatments he seems very confident that 2 treatments done in one visit one in the afternoon next one ithe next morning will have to stay overnight will give me in the low 90 s for full recovery without reoccurrence .........sooo it’s up,to Friday now ..I am seeing UCSF top surgeon peter Carroll he has done over 2000 robotic surgery if he says that I really don’t have to do surgery then brachytherapy it is but if he suggests surgery then I will have to:make a serious decision and may need help ..it will either be 3 to 1 saying no surgery or 2 and 2 ..will return Friday night ...thanks to everyone all the advice about seeing as many dr as I could was great ,I am so blessed to be i this position ..I hsve great university hospitals close by and have seen many respected experts and I don’t  this for  granted 

    aside

    Steve, You are really doing your due diligence, as you should do.   You are becoming the expert. .....keep on interviewing and asking questions........well done.

    By the way what is your take on SBRT?

  • Steve1961
    Steve1961 Member Posts: 301
    edited March 2018 #128
    Hmmm sbrt

    Ok so I went to UCSF and saw dr gottschaulk Cyberknife sbrt guy...so what can I say..sounds great ..almost too easy 4 treatments and done ...what I didn’t like was nit enough data only I think 9 years ..though the 9 years were very promising ..also it takes years for PSA to drop like 7 to 8 years .I was told that whoever does this treatment is doing a study ...stanfords Cyberknife guy left for UCLA and took the study with him and Stanford didn’t open another Cyberknife program yet because it’s not perfected enough...basically the are guessing on how much radiation to give ...so I calle on UCSF guy and asked how they determine the of radiation given is it the same or different for each patient ..dr responded that he uses his own formula based off this and that ...hmm.seems like this his his own study .....didn5 like that ...apparantly swingshift worker had cyberknife done in 2010 and from what I can see his PSA is still droppin* 7 years later ..I have reached out to him to ask about his PSA level Gleason score etc etc but he hasn’t replied ..not much help..oh well ....leaning towards brachytherapy at UCSF ..so most impressed with them and that dr..2 trestmrnts in 1 overnight stay and should be done just need to look into long term side effects .internal is always better than external 

  • Grinder
    Grinder Member Posts: 487 Member
    edited March 2018 #129

    So... You are saying the Cyberknife guy at Stanford who did all the research and established the amount, frequency and/or correct targeting left Stanford for UCLA and took all his research with him, leaving Stanford in the dark for correct procedures in Cyberknife treatments, so now they are starting at or near square one? Is that legal? Doesn't Stanford have a clause that prevents research done in their institution from being pirated away?

    Any research facility I have ever heard of or been associated with, makes you sign a waiver that prevents you from doing research in their facility then leaving and taking the research with you for a better deal somewhere else.

    Not only is this unfair to Stanford, but this is highly unethical. The main concern of this doctor should be the lives of men counting on the development of new techniques to save them AND THEIR FAMILIES from the scourge and misery of prostate cancer. That he would pirate the research away for a little extra personal gain is unconscionable.

    I would guess that Stanford would take him to court, but then that would tie up the research for years, and cost money to litigate. He may be calling their bluff, figuring they will just restart the research rather than tie it up in litigation.

    This is the drawback of the free enterprise system that is dependent on biased, slow, expensive justice in a courtroom,  which is why judicial appointments are so important, and should not be politicized as they have been for the past 50 years or more. Justice should be swift, impartial, and available. It is none of those, thanks to injury attorneys and politicized judicial appointments.

    Assuming this is what happened... How disappointing.

  • Steve1961
    Steve1961 Member Posts: 301
    Cyberknife

    i am just the messenger ..this is exactly what I was told I can copy and paste the email message if u like...I thought it was odd myself...Stanford no longer  .cyberknifeb.no remember the man that told me all the reasons why they don’t is a brachytherapy man ..so he may be bias but he shouldn’t be saying things about why Stanford does not do Cyberknife if he diesnt have .facts and h3 is Stanford’s top brachytherapy man ...not to impressed with Stanford anymore whatever treatment I chose it will be done at UCSF 

  • lighterwood67
    lighterwood67 Member Posts: 324 Member
    Steve1961 said:

    surgury

    yes oncologist recvommended surgury...he said at my age its better to take it out and be done with it..was told they reccomond radiation for older people late 60s 70s because the surgury at that age is kinda rough..gand usually its so slow growing radiation is better for them...anyway yes i have decided on ssurgury..just need tips on finding the right surgeon.. i was told he should have performed at least 500 of these  and read ever review  what else should i know about the surgeon...is robotic the wasyto go or is the old way good as well...thast all...just asking asking..like i said Stanford and UCSF are the places i will be most likely deciding on...hope i am not being a pest...hopefully i can return the favor when i am done  and help other feel comfortable like all of you guys thanks

    67 with PC

    Well, as you can tell from this site that you are not alone.  I was diagnosed officially in Feb 2018.  PSA: 4.72; Gleason 4+3=7.  Looks like you are doing all the right things.  My doctor recommended RP.  He said the radiation, hormone, beam, seediing, etc. would take a lot of time and probably a lot of visits.  I am comfortable with this doctor.  He is 63; graduated from Duke University; was over the Onocology-Urology Department at Levine Cancer Institute; performed over 1000 robotic guided surgeries.  He is a no non-sense doctor.  In my journey and choosing to have an RP, I prioritised.  First and foremost , address the cancer; 2nd address the incontinence; 3rd address the ED.  My RP occurs on 3/20/2018.  I will put my thoughts out there on having the RP surgery.  Looking for some Depends and Pads now.  Good luck to you.

  • Steve1961
    Steve1961 Member Posts: 301
    Still waiting done on feb26

    ok so I saw the final top surgeon at UCSF peter Carroll on March 4th had. Blood test  done feb 26. Psa has gone down from 8.1 in August to 7.4   Had an untrasound done shuck I was shown and was told looks like fully contained and not too close to margain. So this surgeon wants UCSF to look at tge slides and also wanted genetic testing done to see exactly what type of cancer it is  low medium hi risk   He was upset they no one had done this already I gave a follow up on April 18 I will have had every test done and this dr said he will help us make the right decision and not necessarily surgury. He seems like is is out fir my best interest will be back on the 18th with updates 

  • Steve1961
    Steve1961 Member Posts: 301
    Question about enlarged prostrate
    So does everyone with pc have prostrate problems like urgency or low flow or getting up at night to go . I have all these and if I choose some kind of radiation I am worried that my problems will get worse and that’s a tough thing to deal with the rest of your life . Sometimes I am
    Just dripping out fir like 4 5 minutes kinda sucks and dint know if I want to deal with this just to avoid surgery
  • Steve1961
    Steve1961 Member Posts: 301
    Genomic testing

    well I went for my final consultation at UCSF dr Peter Carroll very well known surgeon ...the results of genomic  testing  not good seems like the cancer is high risk and after UCSF reviewing the slides Dr. Carroll did not like the fact that the Gleason 4 cancer is of predominantly of fused and cribiform type...what ever that means ..I looked it up and it diesnt seem bad  but he said it is ....anyway he suggested that since the cancer is high risk and tbat it still seems to be inside  that surgury would b3 the best option but if I was to chilose brachytherapy that I should definitely follow it up with 20 doses of EBR .hmm now I met with his scheduler and we talked and she handed  me a20 page handout on what to expect with surgury ....man oh man ..I think the hard part is the 7 days with the catheter. Man cleaning and the care and all the pills ...wow I really don’t know which way to go now 

  • VascodaGama
    VascodaGama Member Posts: 3,501 Member
    Everyone with PCa have problems of all colors and sizes ....

    Steve,

    This (last) post of yours makes sense to me. Since your initial diagnosis you did study a lot on the PCa subjects and I believe you have now the tools to decide on your next step. It may seem confusing but if you take a moment away from the issue, relaxing, I believe that you get the answer (in your mind) just like a awakening.

    How about having a week vacation at that place you always wanted to visit or see? On your return you will be enlighten in something you trust and that, consequently, should follow. 

    Looking back, today your status has not changed. The PSA is equal and the cancer is at the same place. Your knowledge on treatment capabilities and direct influences is pretty clear, and the contacts (clinics, doctors, etc) you got are trustful enough to advance with a therapy. You may opt for the one that gives you more comfort. That will be the best and you can rely on that choice. You will receive this hint naturally in your mind once you release the grip on the matter for a moment.

    The cribriform type cancerous cells have a particular status in pathology, in particular with regards to the newer classification (2014) used in the grading system, that joints Gleason pattern of 3 in fused and cribriform types (upgrading) to 4 when aligning predictions in treatment outcomes. In other words, its finding could pair any Gs6 into a high risk Gleason score 8 (4+4). In RP terms means to go total radical (no spare techniques or partial dissection). In RT terms, a throughout radiation may be the preferred choice. Your doctor is exactly confirming the need for an extra EBR adjuvant to Brachy to complement the radical procedure.

    Your previous comment and query regarding the consequences of RT when "... urgency or low flow or getting up at night to go to pee " are existing facts; I would say that these may get worse with radiation if the issue has been around for years and have been on treatments such as with the use of alpha blockers. These kinds of symptoms are quite common in guys recently diagnosed with prostate cancer. This exists due to a sort of neurological effect by the brain that tends to direct all senses to the prostate zone. Such, indirectly increases and causes conflicts in brain sensations leading to a volumetric symptom and unneeded reaction.

    One should also consider any abnormal formation pushing the bladder wall-muscle up which could be irritating and causing such issues. I wonder if the cancer has been found at the prostate base. What about an influence/damage done by the additional needles in your second biopsy?

    I hope my comments help in this difficult moment of your journey.

    Best,

    VGama

     

     

  • Steve1961
    Steve1961 Member Posts: 301
    Thanks well brachytherapy

    yes cancer was  found at the base right side .lhmm wife and I totally respect Dr. Carroll .put of all the drs I have seen he seems to be the most thorough ..but radiologist at Stanford was very thorough as well but stanford brachytherapy program 2 treatments over 2 weeks that means being put under twice and then 20 treatments of EBR  wow the heck with that ....  anyway Dr. Carroll the surgeon at UCSF did say it’s mt choice but he recommends 2 treatments of radiation mot one..I have emailed both brachytherapy drs told them the results of genomic testing and I asked if the game plan has changed ,I will wait to hear from them.....it sucks I actually asked 2 drs if we should get genomic testing done and they said not necessary ...REALLY NOT NECESSARY ....wow I think ira very necessary in making the right decision .....I am leaning towards surgury because I totally trust Dr. Carroll .i am just scared ..I shoiulsnt let being scared sway my decision  but it’s haard I have never been in a hospital or had any kind of ptubedure done ever ...

  • Old-timer
    Old-timer Member Posts: 196
    Just checking up on you again, Steve

    Be brave!

    Coping with prostate cancer is tough. But we must deal with what we must deal with.

    Once you decide on a treatment plan, accept it and help your doctors make it work. It will be OK. Best wishes.

    Old-timer (Jerry)

    A 27- year prostate cancer survivor 

  • Steve1961
    Steve1961 Member Posts: 301
    Thanks to all

    e are evalusting each dr we saw..3 of them right away kicked to the curb.the other 5 being 3 radiologists ansv2 surgeons ...I guess the first surgeon dr chung head surgeon at Stanford said that genomic testing wasn’t necessary ..well  he Said my only option was surgury because of Gleason Score 4 in 2 cores...so in a sense he was right ..if u chose surgury really dies the matter what risk the cancer is buttttt this is the same guy who said I didn’t need an mri And then ordered one that cost 26000 yes 26 grand .the 3 radiologists 1 Stanford and 2 UCSF were good but neglected to offer genomic testing which I think they should have especially with gkeason score 4 because that is no longer low risk it’s intermediate and ewe all know that cyber knife and brachytherapy are for low risk patients ...hmmm so I really don’t think those 3 were looking out fir me ...except the Stanford dr...he asked me what I want to accomplish ..I said a cure ..he said 2 brachytherapy treatment and 20 EBR and if mt PSA rose to over 10 then hormone treatments as well..he said all that would give me 95% chance of cure.well I wouldn’t need the hormone .he also,said that if I didn’t do all of this and just brachytherapy and I had reoccurran s theN I would need hormone for life ...sooo do I really want to be put under twice in one week and then 20 ERB treatments just  to avoid surgury..I’ mean I might have even more long term side effect withLl that ...leaning surgury having a family meeting and we will make a joint decision wife 2 sons 1 daughter and 1 son in law. THanks for all Your help without all of everines advice I would have made a blind decision  and probably lived to regret it but now I won’t 

  • MK1965
    MK1965 Member Posts: 230 Member
    Steve1961 said:

    Thanks to all

    e are evalusting each dr we saw..3 of them right away kicked to the curb.the other 5 being 3 radiologists ansv2 surgeons ...I guess the first surgeon dr chung head surgeon at Stanford said that genomic testing wasn’t necessary ..well  he Said my only option was surgury because of Gleason Score 4 in 2 cores...so in a sense he was right ..if u chose surgury really dies the matter what risk the cancer is buttttt this is the same guy who said I didn’t need an mri And then ordered one that cost 26000 yes 26 grand .the 3 radiologists 1 Stanford and 2 UCSF were good but neglected to offer genomic testing which I think they should have especially with gkeason score 4 because that is no longer low risk it’s intermediate and ewe all know that cyber knife and brachytherapy are for low risk patients ...hmmm so I really don’t think those 3 were looking out fir me ...except the Stanford dr...he asked me what I want to accomplish ..I said a cure ..he said 2 brachytherapy treatment and 20 EBR and if mt PSA rose to over 10 then hormone treatments as well..he said all that would give me 95% chance of cure.well I wouldn’t need the hormone .he also,said that if I didn’t do all of this and just brachytherapy and I had reoccurran s theN I would need hormone for life ...sooo do I really want to be put under twice in one week and then 20 ERB treatments just  to avoid surgury..I’ mean I might have even more long term side effect withLl that ...leaning surgury having a family meeting and we will make a joint decision wife 2 sons 1 daughter and 1 son in law. THanks for all Your help without all of everines advice I would have made a blind decision  and probably lived to regret it but now I won’t 

    Treatment choice

    steve,

    I don’t think I responded on this tread before but here is my 2 cents. You are 56 y/o, four years older then me. Surgery in my case did not bring expected outcome. Thanks God, I am cancer free for now, but price I paid for it is  from QoL prospective too high.

    I am almost 18 months from RP and living completely sexless life. I lost my functionality and I lost very important part of me. 

    I am not advising you what to choosE. I am sure you have a valid reason for your choice and your family support. I hope you will have same support in case of unexpected.In my case, coin landed on the wrong side and now, I am suffering alone.

    If I knew before surgery what I know now, I would avoid surgeons by 9 miles radius. 

    I made mistake and I am paying for it now.

    Life made unexpected turn and before I knew it, I was in one way street going in wrong direction.

    I wish you best of luck with your treatment. God bless!

    MK

  • RobLee
    RobLee Member Posts: 269 Member
    The flip side of the coin

    FWIW my urosurgeon discovered that my prostate cancer was a bit worse than expected and I had to have radiation within the first year following surgery. During the course of radiation I developed severe digestive problems. After the radiation (39 Tx IMRT) I had to wait six months before I could get a colonoscopy... which I just had day before yesterday. The outcome is that I am now diagnosed with acute radiation colitis or pelvic radiation disease (PRD).

    It figures with my luck that after surgery left me with urinary incontinence that the follow up radiation would leave with a bowel disorder.  I'm still in the process of digesting (pardon the pun) the implication of this condition. But I just thought I would once again point out that all treatments have side effects.  It's not just surgery. Hormone therapy has them also. And of course, so does radiation.  There is very little information about it to be found online, and it isn't spoken of often, espcially by men. It is embarassing and unmanly. But it does happen.

    Of course, we have all been confronted by people who tell you "my so and so had prostate cancer and he's doing fine". That's a topic for another discussion.

  • lighterwood67
    lighterwood67 Member Posts: 324 Member
    Steve1961 said:

    surgury

    yes oncologist recvommended surgury...he said at my age its better to take it out and be done with it..was told they reccomond radiation for older people late 60s 70s because the surgury at that age is kinda rough..gand usually its so slow growing radiation is better for them...anyway yes i have decided on ssurgury..just need tips on finding the right surgeon.. i was told he should have performed at least 500 of these  and read ever review  what else should i know about the surgeon...is robotic the wasyto go or is the old way good as well...thast all...just asking asking..like i said Stanford and UCSF are the places i will be most likely deciding on...hope i am not being a pest...hopefully i can return the favor when i am done  and help other feel comfortable like all of you guys thanks

    RP at 67

    I had my RP at 67; Bladder Neck Reconstruction; and Pelvic lymph nodes removed (8 of them).  In my case, after the surgery and the catheter removed, my stream flow has not been that good since I was much younger.  If you need or want to take a look at my surgical procedure (robot guided assisted) please go to this post on this site.  Description of procedure RP 3/20/2018. Good luck to you.  You will be flooded with a lot of good information.  Take a deep breath and weigh it out.