Hello just diagnosed and very frightened

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  • Old Salt
    Old Salt Member Posts: 910 Member
    edited December 2017 #62
    Grinder said:

    I researched this in a limited way with keywords "CK shrinks prostate" and I can't find any other instance where CK effectively did shrink the prostate through atrophy. Yes, your friend's prostate may have shrunk, but if this were a common effect of CK, it seems like it would be heralded as a positive effect of CK technology. I strongly suggest it be researched further into the archives of other medical forums and university websites to see if it does have that effect, before anyone makes their treatment decision.

    If it did harmlessly shrink the prostate, then why isn't CK being used to address severe BPH symptoms regardless of cancer presence?

    In the case of RP, there is no question it resolves BPH and prostatitis issues.

    Another view on this matter

    (Not really, because Hopeful posted the same, now that I reviewed the earlier thread).

    Irradiation will kill the cancerous cells (we hope!). When those cells die, the prostate does loose the space they used to occupy. If there was a lot of cancer, one can expect to loose prostate volume (I did). And, BTW, the prostate will become softer as well.

    It's my understanding that irradiation of the prostate is unlikely to improve urine flow and may, in fact, make it worse.

  • 1005tanner
    1005tanner Member Posts: 29
    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

    Be comfortable with the

    Be comfortable with the surgeon and talk to people that have used him or know of him.

    Dont be afraid to talk to several and find the one you are comfortable with if that is the direction 

    you want to go in. Relax and study and ask questions .In  this forum these gentlemen have alot

    of knowlege because they have lived through it.

    Have a Happy Holiday and Good Luck

  • CC52
    CC52 Member Posts: 103 Member

    actually

    When my friend and I interviewed doctors we interviewed  a robotic surgeon and a radiation oncologist who specialized in SBRT. Well the surgeon said that the prostate would not atrophy and surgery was necessary for better urinary function, while the radiaiton oncologist told us , that the prostate would atrophy. We did not know which doctor was accurate. Well, since my friend had heart disease, he opted to go with the radiation.

    Initially after the radiation, there was some swelling of the prostate which affected his ability to urinate. He was prescribe Flomax. After a while the prostate did atropy. so he does not have any problems with urination.

    The urologist that leds a local support group that I like to attend told me that radiaiton with larger prostates are not ideal. Quite often men receive hormone  in advance  of radiation treatment, that shrinks the prostate 

    Atrophy

    So that begs the question: If the prostate shrinks (atrophies) following SBRT, how is the urethrea not constricted (restricted?) by the process? It seems then that urination would naturally worsen over time.

    My RO was adamant that the urinary issues I experienced post SBRT were not completely "cause and effect". During my follow-up visits over the 3+ years since my treatment, he reminds me that I still have a prostate and that urinary problems could still occur with aging - again emphasizing that statistics indicate very few urinary problems can be attributed to the treatment. Sounds like he may have been covering all bases?

    Regardless, the problems I had urinating (which were burning and weak stream) have all but disappeared over time. An occasional hiccup - mostly after a few beers.

      

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,726 Member
    Grinder said:

    I researched this in a limited way with keywords "CK shrinks prostate" and I can't find any other instance where CK effectively did shrink the prostate through atrophy. Yes, your friend's prostate may have shrunk, but if this were a common effect of CK, it seems like it would be heralded as a positive effect of CK technology. I strongly suggest it be researched further into the archives of other medical forums and university websites to see if it does have that effect, before anyone makes their treatment decision.

    If it did harmlessly shrink the prostate, then why isn't CK being used to address severe BPH symptoms regardless of cancer presence?

    In the case of RP, there is no question it resolves BPH and prostatitis issues.

    Well, because...

    grinder,

    After radiation, the prostate has the texture of a used charcoal brickette -- think Kingsford on tailgating day.  My R.O. told me this himself.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,726 Member
    CC52 said:

    Atrophy

    So that begs the question: If the prostate shrinks (atrophies) following SBRT, how is the urethrea not constricted (restricted?) by the process? It seems then that urination would naturally worsen over time.

    My RO was adamant that the urinary issues I experienced post SBRT were not completely "cause and effect". During my follow-up visits over the 3+ years since my treatment, he reminds me that I still have a prostate and that urinary problems could still occur with aging - again emphasizing that statistics indicate very few urinary problems can be attributed to the treatment. Sounds like he may have been covering all bases?

    Regardless, the problems I had urinating (which were burning and weak stream) have all but disappeared over time. An occasional hiccup - mostly after a few beers.

      

    Urethera

    CC,

    My urology surgeon has a great map of the prostate and all of the associated plumbing on the wall in one of his exam rooms, and I have over the last two years asked him several questions about it.  He told me that the urethera actually does not run through the prostate gland. A section connects the bladder to the prostate, and then another section conncets the other end of the pprostate to the end of the penis.  But he said the passage through the prostate itself is pretty rigid and sort of like a superhighway entering into a cave bored through the side of a mountian.  This may explain why there was no stricture (restriction).

    This is probably just more information than almost any layperson needs to know, and most pictures just describe the section through the galnd as in fact "urethera."   My doc has done well over 1,000 DaVincis and is a subspecialist in post-radiation salvage surgery, which is a fairly rare thing, so he must know of what he speaks.  He has taught urinary surgery at two medical schools also.

    This is a highly detailed critique of the male ureathera and each of its many subdivisions:

    https://emedicine.medscape.com/article/1972482-overview#a2

    max

  • CC52
    CC52 Member Posts: 103 Member
    edited December 2017 #67

    Urethera

    CC,

    My urology surgeon has a great map of the prostate and all of the associated plumbing on the wall in one of his exam rooms, and I have over the last two years asked him several questions about it.  He told me that the urethera actually does not run through the prostate gland. A section connects the bladder to the prostate, and then another section conncets the other end of the pprostate to the end of the penis.  But he said the passage through the prostate itself is pretty rigid and sort of like a superhighway entering into a cave bored through the side of a mountian.  This may explain why there was no stricture (restriction).

    This is probably just more information than almost any layperson needs to know, and most pictures just describe the section through the galnd as in fact "urethera."   My doc has done well over 1,000 DaVincis and is a subspecialist in post-radiation salvage surgery, which is a fairly rare thing, so he must know of what he speaks.  He has taught urinary surgery at two medical schools also.

    This is a highly detailed critique of the male ureathera and each of its many subdivisions:

    https://emedicine.medscape.com/article/1972482-overview#a2

    max

    .

    Thanks for your input Max, however can you check the link you provided? It wouldn't open for me - just a blank page.

  • Old Salt
    Old Salt Member Posts: 910 Member
    CC52 said:

    .

    Thanks for your input Max, however can you check the link you provided? It wouldn't open for me - just a blank page.

    Here's the link, I hope...

    https://emedicine.medscape.com/article/1972482-overview#a2

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,726 Member
    CC52 said:

    .

    Thanks for your input Max, however can you check the link you provided? It wouldn't open for me - just a blank page.

    Links

    I and a lot of other people here have been having trouble ove the last year getting links to open.

    I used to just do a cut and paste and it worked great, but no more.  I manually used the editing options on the toolbar here and made the link a Hyperlink, but even that won't work.

    You CAN read the link by typing in the address manually. If interested in the subject, it will be worth the few moment's effort required.

    max

  • Grinder
    Grinder Member Posts: 487 Member
    edited December 2017 #70
    .....

    This is from an Ultrasound prostate treatment website...

    26. What happens to the prostate after the procedure?

    Ablatherm HIFU treatment completely destroys the prostate tissue and cancer cells reducing them to protein debris and non-viable tissue. Most of this tissue is sloughed through the urinary tract while some is re-absorbed by the body’s natural mechanisms of dealing with injured or non-viable tissue.

    http://www.hifu.ca/prostate-cancer-FAQ-hifu.htm

  • Grinder
    Grinder Member Posts: 487 Member
    CK...

    This is from these archives.

    I am not suggesting CK is to blame, I am suggesting the improper administration of CK is to blame. And, similarly, the lesson here is that the best most experienced professional is necessary regardless of the procedure. Side effects are more prevalent when inexperienced professionals perform procedures.





    My husband had cyber knife treatment last September 2011, with only mild side effects a week later. Now, more than 6 months later, he is having severe problems. For the last two weeks he has had pain , burning, urgency, and blood in the urine. He was prescribed an antibiotic and flomax for a week, which did not relieve his symptoms. Yesterday we back to the doctor. He did a cistscope to check his bladder, a sonogram, and urine test. He said that husband does not have an infection, and took him off of the other meds, and put him on vesicare. He said that symptoms are a result of the cyber knife surgery last September. He still has all of the symptoms, and cannot sleep because of the pain and having to constantly go to bathroom. Has anyone else had this, or have any advise ? Please let us know, as he is miserable. Thanks

     




    The following is a response inre the side effects suffered from the procedure...

    "ASTRO’s executive summary paper states: “Given that very high-dose fractions of radiation are delivered, the margin of error for SRS and SBRT is significantly smaller than that of conventional radiotherapy and therefore special attention and diligence is required. A SMALL ERROR IN TARGET LOCALIZATION FOR ANY 1 FRACTION RISKS UNDER TREATMENT OF PORTIONS OF THE TUMOR BY 20% OR MORE, AND INADVERTENT OVER DOSAGE OF ADJACENT NORMAL TISSUES COULD ESCALATE THE RISK OF SERIOUS INJURY TO A MUCH GREATER DEGREE THAN AN EQUIVALENT TREATMENT ERROR IN A COURSE OF RADIOTHERAPY WHERE A SUBSTANTIALLY LOWER DOSE PER FRACTION IS USED [IG/IMRT].”

    "I have posted this info before and know it is not what you want to read but, without knowing more about your husband’s PCa history, stats, his clinical staging, the CK tx protocol used, dosing, the expertise & skill of his radiation team, including the radiation oncologist, the dosimetrist/physicist, the CK technician, etc., its difficult to know for certain whether your husband may have suffered permanent or temporary injury and/or collateral tissue damage from his CK/SBRT tx. I hope you find some answers soon, and that the symptoms are short term, treatable, and the pain resolves quickly. "

    ************* 

    Note the words " the expertise & skill of his radiation team, including the radiation oncologist, the dosimetrist/physicist, the CK technician, etc. "

    I can't help but point to one significant variable when it comes to side effects in ANY procedure... Skill and Expertise.

    It is my contention that once CK is more widespread as RP is now, then less experienced and less skilled persons will administer the procedure, resulting in more side effects. 

    Comparing the two procedure when SUCCESSFULLY done by expert skilled persons, they each have their advantages. If CK appears to be the recommended treatment for a particular patient's profile, then by all means, pursue that course of treatment. But the caveat remains, as it does for RP as well, get the best available. 

    Once CK eclipses RP, don't be surprised if incidences of side effects increase dramatically, as the increased demand will exhaust the supply of competent professionals to administer the treatment. Then less skilled persons will be needed to meet the increased demand.

    I continue to emphasize VARIABLES, which is necessary in any experiment. Everyone points to RP as the culprit, rather than consider the VARIABLES between successful treatment with RP versus unsuccessful treatment. The main variable continues to be the skill of the surgeon. In my case, everything went exactly as planned, just a little behind schedule. That is why I continue to be adamant that everyone gets the MOST SKILLED professional available, and not just condemn any particular procedure outright.

     

  • Steve1961
    Steve1961 Member Posts: 301
    edited December 2017 #72
    wow thanks everyone...i am

    wow thanks everyone...i am going to have it taken out...meeting with 3 surgeons in the next few weeks...will make my decision  and do it and hope for the best....i have learned alot from all u wonderful informative folks....i know what to ask and what what to expect now...i am jsut a little frustarted at my urologist about the MRI situation...i asked him about the MRI instaed of the biopsy..he said MRI does help if something is seen then we will ahve to do a biopsy anyway  ...so now i have to wait 6 weeks after the biopsy to get an MRI....Hmmmm i need to ask my urolist why,,i guess they want the prostrate to fully heal i guess..not sure but not happyt about it...especially when i asked the assistent to set one up and she saud they usually do that first.....maybe  from my past resukts he didnt think it was necessary..still wonderinging why we didbt i will have to ask himmmmm  happy holidays and merry christmas to all

     

  • Steve1961
    Steve1961 Member Posts: 301
    T3 mri

    just wondering if anyone knows why I will have to wait 6 weeks after biopsy to get an mri done ...I think that’s a long time and all this waiting is starting to get to me thanks 

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,726 Member
    Steve1961 said:

    T3 mri

    just wondering if anyone knows why I will have to wait 6 weeks after biopsy to get an mri done ...I think that’s a long time and all this waiting is starting to get to me thanks 

    Booked

    Steve,

    The wait is probably due to booking of the machine, not for medical reasons.

    Six weeks is not problematic. Use the time to read and ponder.

    I was diagnosed with advanced Lymphoma in 2009, all over.  It was way over two months from discovery until my first chemo began...being shuffled between doctors, tests.  There was a wait between everything.   It is not an issue.

    max

  • Steve1961
    Steve1961 Member Posts: 301
    Thanks

    not do to booking assistant said I have to wait 6 weeks for some reason ..not that there was nothing available ...I will call, Tuesday to find out why if no one knows ..thanks again 

  • Steve1961
    Steve1961 Member Posts: 301
    Like I mentioned before ..I

    Like I mentioned before ..I am a bit scared even though they say I am in s very good situation no one knows how close the tumors are to the margin I guess thatscnots known until after surguty so I am afraid it may be spreading ..ever since the biopsy I have had discomfort and a pain in my left cheek when sitting for a while ..sorry soo afraid it may have spread to my bones the wait is getting to me ..thanks for listening and sorry for being a hypo..

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    edited December 2017 #77
    disagree

    diagree,,,,,,,,,,the prostate is affected by the biopsy, and an MRI needs to wait.

    Steve, you exhibit panic, and you need to calm down.....did you visit with a radiation oncologist...or are you simply trying to get the the prostate out as quickly as you can?

  • Steve1961
    Steve1961 Member Posts: 301
    edited December 2017 #78
    DID VISIT WITH RADIOLOGIST

    DID VISIT WITH RADIOLOGIST AND HE SEEMED OF COURSE VERY KNOWLEDGEABLE ALOT OF AWARDS HONOR SDEGREES  ECT..HE EXPLAINED IT ALL TO ME HE ALSO SAYS I AM IN A GOOD STATE TO BE RID OF THIS FOR GOOD....THE RADIOLOGIST SUGGESTED THAT I HAVE IT REMOVED AS WELL FOR BEST RESULTS...THEY ALL SEEMS TO THINK I CAN RECOVER FAIRLY FAST AND WELL FROM SURGURY....

  • Tech70
    Tech70 Member Posts: 70 Member
    My MRI

    When I had my MRI they asked if I had had a biopsy and when I said yes, they asked how recently.  Apparently they want to wait for some period of time between the biopsy and MRI

  • Steve1961
    Steve1961 Member Posts: 301
    Thanks

    u know some of the things u find on the net can be very scared.such as the onco type dx test....I went to the sight they asked 3 lousy questions 1 have I had a blood test 2 have I had a biopsy last 6 months 3 they asked 3 question PSA under 20 Gleason 7 Or under and the third one 30% involvement or less in Tumors  all three have to be yes...well I put no because I have more than 30% involvement ..well the results said I should be tested because I have high risk aggressive cancer .....wow I hope this is not true ...it scared the crap out of me 

  • Steve1961
    Steve1961 Member Posts: 301
    waiting

    wow i will tell u this waiting for MRIs  and to see surgeons is the absolute worst...thank goodness i dont drink alot because if i did i would be drunk everday,,,,sooooo stressfullll..all the thoughts.......thank goodnes for faith and prayer  and exersize...