Hello just diagnosed and very frightened

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  • Old-timer
    Old-timer Member Posts: 196
    Words of encouragement and hope

    Hello Steve,

    I'm 91 years old and a 25-year prostate cancer survivor. You are getting a lot of information from others. That's good. Treatments for PC have changed (improved?) since I began this journey with a prostatectomy, in 1991.

    Even though I have had many experiences with and related to PC, I am not qualified to advise you. Learn as much as you can, involve your loved ones in your decision, then grab the ball and run!

    By the way, my Gleason score was also 3+4.

    One other thought, I feel that my life has been richer as a consequence of experiencing prostate cancer. Think about it.

     

    Best of success to you.

    Old-timer (Jarry)

     

  • Old Salt
    Old Salt Member Posts: 910 Member
    edited December 2017 #23
    Steve1961 said:

    Ohh btw swing shift hasn’t

    Ohh btw swing shift hasn’t posted since 2010 but thanks

     

     

    The correct name is

    Swingshiftworker

    and he posts fairly often

  • 1005tanner
    1005tanner Member Posts: 29
    Steve1961 said:

    Ohh btw swing shift hasn’t

    Ohh btw swing shift hasn’t posted since 2010 but thanks

     

     

    You are very young and a good

    You are very young and a good canditate for surgery if you decide to go that way. Depending on no medical issues. 

    Seek 2nd and 3 opinions on treatments and go from there. Take your time slow down and educate yourself on this forum

    and from reserch and doctors. Im trying to do the same being told oct i had 2 cores positive gleason 6 t2a tumor 25%

    left apex. contained in prostate. It is a shock like being hit in stomach after leaving doctors office. Good Luck

  • Steve1961
    Steve1961 Member Posts: 301
    thanks old timer

    old timers are the greatest

  • Steve1961
    Steve1961 Member Posts: 301
    edited December 2017 #26
    soo confused

    dont mean to be a pain..the specialist i am seeing is a radiation oncologist...i asked my dr if this guy is a oncologist..the dr said a regular oncologist does chemo  and i dont need that so i am seeing a radition oncologist....so will thi s gyt be able to answer all my questions and is he an oncologist  ....damnnnnnn his name is david kornguth thanks i wont post again until io see this guy thursday

     

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

    soo confused

    dont mean to be a pain..the specialist i am seeing is a radiation oncologist...i asked my dr if this guy is a oncologist..the dr said a regular oncologist does chemo  and i dont need that so i am seeing a radition oncologist....so will thi s gyt be able to answer all my questions and is he an oncologist  ....damnnnnnn his name is david kornguth thanks i wont post again until io see this guy thursday

     

    Yes

    Your doctor is correct; you should be seeing a RADIATION oncologist.

  • fishinguy
    fishinguy Member Posts: 18
    Steve1961 said:

    soo confused

    dont mean to be a pain..the specialist i am seeing is a radiation oncologist...i asked my dr if this guy is a oncologist..the dr said a regular oncologist does chemo  and i dont need that so i am seeing a radition oncologist....so will thi s gyt be able to answer all my questions and is he an oncologist  ....damnnnnnn his name is david kornguth thanks i wont post again until io see this guy thursday

     

    It is a confusing time....

    We've all been there.   Right now, try to relax (as much as you can) and take time with all the information you're hearing.  From my short time of six months researching and treatment, I'd take confidence in your PSA being under 8 and being a 3+4.  You can only go with the information you have, and the information you have so far is not bad for being on a site like this.

    I too, skipped a year of PSA screening.   I'm 56, my PSA peaked at 7.9 January of 2017, after skipping just over a year.   I had the same thoughts about what if I hadn't skipped, but it may not have sped up the diagnosis either.  Then, I had a 3T MRI in April, Fusion biopsy in May to discover 3 cores; 3+3, 3+4 and 4+3 diagnosis.  Researching all options is a very good idea to pick the one right for you.  I've heard many good things of current radiation treatments, although a different direction than I took.  

    My pathology report downgraded me to a 3+4 and I expect a full cure, but that of course is years off officially.  Mine had not left the prostate.  I'm just looking 90 days out at this time, because well, that's the plan for now.  The one thing you'll find is when you do start treatment, all the thought cycles about this will diminish and you'll get abck into your regular routines.    So again, take the time to read and ask questions.   Best wishes to you!

  • Steve1961
    Steve1961 Member Posts: 301
    Tomorrow can’t come fast

    Tomorrow can’t come fast enough.the not knowing is the worst...I still have pain in my tailbone from the biopsy which of corse is unusual...it feels like a bruise because I have dine it before but of course I am thinking  that this crap has now spread to my bones  that’s why my. Dr suggested radiation ...man I hope I am wrong sorry for the venting ....

  • ASAdvocate
    ASAdvocate Member Posts: 177 Member
    Steve1961 said:

    soo confused

    dont mean to be a pain..the specialist i am seeing is a radiation oncologist...i asked my dr if this guy is a oncologist..the dr said a regular oncologist does chemo  and i dont need that so i am seeing a radition oncologist....so will thi s gyt be able to answer all my questions and is he an oncologist  ....damnnnnnn his name is david kornguth thanks i wont post again until io see this guy thursday

     

    Three Specialists for Prostate Cancer

    There are three types of doctors that are involved inn treating prostate cancer:

    Urologist - the first specialist you see. They do the DRE and biopsies, and perform surgery

    Radiation oncologist - they perform the various radiation treatments to eradicate PCa.

    Medical oncologist - when the cancer is systemic, they prescribe chemotherapy and medicines.

    In aggresssive cases, men often have to see all three of them, one after the other.

    In your case, either of the first two will likely cure you.

     

     

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    edited December 2017 #31
    local support groups

    ustoo.com is an organzation that sponsors local support groups worldwide. These groups can provide a wealth of information, especially about local treatments available, and emotional support. google them.

    Steve....you are thinking too much about seeing doctors in various specialties. this is standard operation procedure. ...By the way UCSF is a hospital recognized world wide that has experts, "artists" if you may who treat prostate cancer. For radiation it is high volume, with expertise with facilities.

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

    Tomorrow can’t come fast

    Tomorrow can’t come fast enough.the not knowing is the worst...I still have pain in my tailbone from the biopsy which of corse is unusual...it feels like a bruise because I have dine it before but of course I am thinking  that this crap has now spread to my bones  that’s why my. Dr suggested radiation ...man I hope I am wrong sorry for the venting ....

    Welcome

    Welcome to you Steve. 

    Prostate cancer (abbreviated 'PCa') very seldom 'hurts.'   Your biopsy numbers do not suggest that what you are feeling in your 'tailbone' in any way relates to PCa. Usually, only highly advanced cases that have significant bone metastasis will hurt, and none of your numbers suggest that at all.   You most likely have incipient (mild) or moderately intermediate (slightly aggressive) disease based on what data has been shared thus far.  I sense that you are panicing a little (fairly common and reasonable).  This PCa research will become old-hat to you soon.  There is no rush; in fact, rushing is often very harmful.  Being systematic is much better. 

    Because before I got PCa I had gone through massive chemo and treatment for Lymphoma, and had been around several friends with advanced PCa, when my urologist told me that I had PCa I yawned in her face (it was an early morning appointment), told her thanks, and said we would be in touch.  I had already laid out which doctors I was going to consult, and did not need recommendations from her.  In other words, there was no shock for me.  The guys here who have been fighting PCa for 12-15 years will tell you that the melodrama wears off pretty fast for most men.  PCa is beatable or highly controllable in most cases.  It has never "frightened" me at all, although it is extremely inconvenient. I do RESPECT it however, and know that is some cases it can be a killer.

    You are seeing the right people: A radiation oncologist (RO), and later a surgeon.  Likely, either can cure you, meaning eradicate all of the PCa.  Both will want to share their skills on you.  Very generally, surgery is only advisible if all results fairly strongly suggest no escape of the disease from the gland.  It is also a good choice for men with serious urinary problems or chronic, lifelong prostatitis, such as I had. 

    Radiation therapy (RT) generally is easier to undergo than surgery.  And there are 3 primary forms of radiation, based upon how the radiation is delivered: 

    (1) Fractionated. This is the most common form of RT and its origins derive from the oldest of radiation techniques, although it is today as accurate in delivery (aim) as the other forms.  Fractionated is also best if escape is likely or definite, and areas adjacent to the gland must be radiated also out of caution.  Fractionated takes about 40 applications, usually just on weekdays; a session is painless and you will be in and out within an hour at most cancer centers.  Codenames your RO will use for fractionated delivery are IMRT or IGRT.  IGRT is an advancement over IMRT in precision of delivery -- a better mousetrap.

    (2) SBRT.  SBRT does what fractionated does, but faster. A patient will only go for about 5 treatment sessions, since each session has much more radiation delivered at once than fractionated does.  It is reportedly painless also.  There are a variety of SBRT manufacturers, but the most popular machines are known by their tradenames of Cyberknife or Varian Truebeam.  If the RT discusses either of those, he is discussing SBRT. Initially uncommon, SBRT today is almost as commonly available as fractionated and is a popular choice, although a few rural areas around the country still do not have SBRT in-house.  Most better centers today have both fractionated and SBRT to choose from in the same office.  I read this week that SBRT is now being used at some centers for area radiation outside the gland if the location of metastasis is well established, similiar to how ROs use IGRT.  This is still somewhat experimental however as a use for SBRT, and not something most ROs currently do with SBRT.

    (3) Brachytherapy ("Seeding").   Seeding involves a surgeon placing tiny radioactive seeds, or pellets, inside the gland itself, as close to the known tumors as possible.  Seeding is usually not advised for more advanced or serious cases.

    Although a few writers here are highly critical of surgery, it can be a good or even the best choice is some cases. One such case is when there is serious urinary blockage; surgery is then the best option, if metastasis is not suspected. A psychological advantage to surgery for some is that when the gland is cut out and studied by a pathologist in the lab, a man knows EXACTLY what he was dealing with: level of aggression, and escape from the gland is almost definitely confirmed or ruled out in most cases. My own case was diagnosed at Stage I using available data, but as soon as the pathologist dissected it, he knew with certitude that it was a significant Stage II.  This would most likely not have been discovered with RT.  While T3 MRIs and bone scans are much better than older PCa scans, imaging to establish where metastatic PCa is located (or to determine if there is any metastasis) are very imperfect; false negatives (missing tumors because they are too small for detection) are not uncommon at all.  Imaging in general for PCa is among the worst of all cancers due to how tiny metastatic PCa tumors can be.  Ordinarily, a CT for instance cannot spot a mass smaller than 3mm or a bit larger, but PCa can be significantly smaller than that. I am describing a generality in PCa detection, and am not interested in arguing with anyone over minutiae regarding what this or that machinc can do. 

    Following surgery, the PCS will almost instantly (within 2 months or thereabout) go to zero and stay there forever, if the surgery was successful.  This can be an asset for men prone to stress.  

    Conversely, following radiation treatments, PSA will oscillate for some time, ocassionally even a year or so, until a lowest PSA value, called a nadir, is established. Thereafter, the nadir is compared to subsequent PSA results over the years, and a formula is used to determine if relapse has ever occured. Differing cancer centers or labs use differing thresholds, or tripping points, to conclude relapse. But PSA following just RT will never go to zero. This is not a problem, just potentially unsettling for some men.

    Surgery will leave almost all patients impotent for six months or more (a year is not uncommon).   But in the majority of prostectomies, most men regain potency at some point, unless age or significant preconditions preclude this.  Today, a technique called erectile nerve sparing is almost always used by surgeons, unless what they discover when the patient is open precludes this. Decades ago, nerve sparing was highly uncommon, leaving nearly all men impotent for life.  Luckily, no longer the case.  Rare horror stories occur in surgery and post radiation, as they do following any medical proceedure.  But RT side-effects are delayed, not instantaneous, and in general are usually milder for most men.  As one would expect, a person with problems is more given to report their situation than a person with no problems, so issues post-surgery appear frequent to some evaluators. 

    I hope this helps a little. It is very general in nature; what you experience will not be exactly like what any other man experiences.  The ancedotal accounts men share with you will not be identical to your own, unique reality and results.

    Good luck !

    max

     

  • Steve1961
    Steve1961 Member Posts: 301
    MRI

    wby didn’t my urologist order an mri right away i am going to need one i would have had results already so upset over all this pissing me off sorry 

  • Steve1961
    Steve1961 Member Posts: 301
    edited December 2017 #34
    Wow

    thanks for the confidence and all the knowledge ..I still have a lot to live for as we all do also have people that depend on me and I feel obligated to them .....I am going to nail this and I won’t leave this sight I will be an inspiration ...I owe that to all u wonderful knowledgabke people that have brought me some peace of mind  thanks again

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

    MRI

    wby didn’t my urologist order an mri right away i am going to need one i would have had results already so upset over all this pissing me off sorry 

    .

     

    Steve, Listen....you need to calm down.......things need to be done in a coordinated fashion.......the T3 MRI will be done at the right time, by the right institution....i.e.if you go to ucsf they will probably want to do their own.

     

    Last week you didn't know what an MRI was, now your pissed without one......relax...have a glass or two of the California red....there's plenty of time, so you can do things right.

    LOL

     

     

  • Steve1961
    Steve1961 Member Posts: 301
    edited December 2017 #36
    First thanks for all info...

    First thanks for all info....met with radiologist he right away recommended surgury.must have totally misunderstood  urologist....anyway will meet with surgeon soon and see if he wants to do mri. Radiologist said it would help but either way even if it’s nout contained we will do surgury. He said post pathology report will tell if tumor has spread or not as well  so mri is helpful but not necessary.  Still have discomfort in pelvis probably from the cancer and swollen prostrate...prostrate is pretty big 55 cc average is 15 to 30 I am being told...said is slow growing probably had cancer for 5 or 6 years. Just didn’t know it...reason my PSA was at 5.5 for about 6 years...they say if your prostrate is over 30 cc good  chance u have cancer ..to bad they could not just cut it out years go..but I guess no diagnosis no cutting oh well... I move into next step and hope for best....they alll seem pretty confident ..I am 6ft 3 200lbs in great shape and have good genes still have all my hair and hardly and wrinkles look like I am 44 not 56   Not bragging but DR says that’s all in my. Favor as well....will keep updating thanks again I will pray a lot not just for. Myself but everyone one this forum ...fight on 

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

    Not a doctor, but I think the radiologist is full of it when he tells you that you do not need an MRI before any treatment. 

    If you have, say surgery as the doctor suggested and the cancer is outside additional treatment(s) ..radiation/hormone will be necessary.... the side effects from each treatment is cummulative....since surgery is a localized treatment, it is very possible if the cancer is outside the prostate that you will still need radiation and/or hormone treatment.

    I wonder , your medical coverage, are you with a HMO, and they are trying to save money on you? 

    Does your medical insurance cover medical treatment at UCSF?, If so, go there, they do everything related to prostate cancer well. They are one of the best institutions in the country.

  • eonore
    eonore Member Posts: 118 Member
    edited December 2017 #38
    Steve1961 said:

    First thanks for all info...

    First thanks for all info....met with radiologist he right away recommended surgury.must have totally misunderstood  urologist....anyway will meet with surgeon soon and see if he wants to do mri. Radiologist said it would help but either way even if it’s nout contained we will do surgury. He said post pathology report will tell if tumor has spread or not as well  so mri is helpful but not necessary.  Still have discomfort in pelvis probably from the cancer and swollen prostrate...prostrate is pretty big 55 cc average is 15 to 30 I am being told...said is slow growing probably had cancer for 5 or 6 years. Just didn’t know it...reason my PSA was at 5.5 for about 6 years...they say if your prostrate is over 30 cc good  chance u have cancer ..to bad they could not just cut it out years go..but I guess no diagnosis no cutting oh well... I move into next step and hope for best....they alll seem pretty confident ..I am 6ft 3 200lbs in great shape and have good genes still have all my hair and hardly and wrinkles look like I am 44 not 56   Not bragging but DR says that’s all in my. Favor as well....will keep updating thanks again I will pray a lot not just for. Myself but everyone one this forum ...fight on 

    prostate size

    It is doubtful that your pelvic pain is associated with your prostate or prostate cancer.   Prostate cancer is typically asymtomatic unless extremely advanced.   As far as the size of your prostate, 55cc is not very big at all.   Mine was 225cc at time of surgery, which admittedly is huge, but it caused me no discomfort (it did cause lots of urinary problems).   One thing I will tell you, between the time I got my diagnosis after the biopsy, and the time the doctor told me that the bone scans and MRI did not show any spread, I was having aches and pains all over, sure that I was riddled with cancer.

    The best thing is to find the best and most experienced doctors you can, research and ask questions so you can make the best decisions about treatment, and then have confidence that that your innate good health and the excellent care you are receiving will carry you through.

  • Steve1961
    Steve1961 Member Posts: 301
    Thanks

    I have 2 insurances both ppo and yes I will be going to UCSF just waiting for them to look over my case and which dr is right for me..actually this radiologist did say an MRI would be very helpful but they would still do surgery unless it has spread a lot so maybe since he isn’t the surgeon he couldn’t prescribe one...I don’t know ...I wonder if my urologist could prescribe one an MRI that is  so I don’t waste any more time maybe I should ask him...thanks again everyone 

  • Steve1961
    Steve1961 Member Posts: 301
    Hmmm

    also I asked him if he thought that since my PSA was5.5 for around 5  6 years If it’s possibke I have been walking around with cancer.answer was probably yes but since nothing showed up on biopsy nothing can be done ....wow I guess if we all knew this had this knowledge and are filthy rich and could pay for ut yourself but that’s not me...but even if they told us  there is a good chance that down the line this may turn to cancer ..sure may cause anxiety but one could start eating better and taking better care of oneself ...just a thought 

  • SubDenis
    SubDenis Member Posts: 130
    Steve, I get the feelings of

    Steve, I get the feelings of panic and fear.  And we have time to make an informed decision.  Read, study, ask questions, seek second and third opinions.  I was convinced I was going to do surgery and have changed that to HDR Brachytherapy.  Learn about the different treatment options, the risks, the side effects, and the post-op recovery period.  Once you have all that info solid in your mind the choice will become evident.  Only you can and should make the decision. I am almost six months from diagnosis and just made my decision a couple of weeks ago.  My treatment starts in January.  

    You have time to learn about our disease and learning will help you understand your path.  Denis