Hello just diagnosed and very frightened

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Comments

  • Grinder
    Grinder Member Posts: 487 Member
    Steve

    We all likely reacted the same way. Don't worry about it... I am asking stuff all the time. Even if you behave like Peter Finch in Network and you:

    Go to the window, open it, stick your head out and scream as loud as you can...

     "I AM MAD AS HELL, AND I'M NOT GONNA TAKE IT ANYMORE!!"

     It's ok because you are perfectly right to feel that way. Although the neighbors may not like it.

  • Steve1961
    Steve1961 Member Posts: 301
    Grinder said:

    Steve

    We all likely reacted the same way. Don't worry about it... I am asking stuff all the time. Even if you behave like Peter Finch in Network and you:

    Go to the window, open it, stick your head out and scream as loud as you can...

     "I AM MAD AS HELL, AND I'M NOT GONNA TAKE IT ANYMORE!!"

     It's ok because you are perfectly right to feel that way. Although the neighbors may not like it.

    Thanks

    I just may do that ..I want to decide and get this over with ...I’m getting tired and pissed ..thanks again.

  • Steve1961
    Steve1961 Member Posts: 301
    Need some reassurance

    as u all know this has been going on fir 5 months ...starting to slowly lose it ..all the studying all the drs all the info.all the what’s ifsssss .getting that news now 2 weeks ago about the cancer being of high risk and Gleason 4 being of cribiform has me real shook up..so the last doc says we shouldnot wait around and watch this ,,.well I knew that that 5 months ago ..he says he didn’t think it would escape the would capsule in the next few months ..well what if i saw the this dr back in February he would have said the same thing and now it’s 3 months later ...the radition dr at UCSF cant start treatment until   June 25th ....that would be 7 months after diagnosis .now with high risk cancer .if I knew this 5 months ago I would be done with treatment no way I would have waited 5 months ..would youuuuu.I mean only 15% of men hsve high risk cancer and I am one of them...10 year survival rate drops to like 70 percent the 15 year like 67 ...but the localized 15 year rate is still Around 90 % ...so where does that put me ..I guess the only way to know if it’s actually still localized us surgury...the Stanford people want to do the most sgressive treatment just to make sure in case it actually is of high risk.they want to do 4 months hormine treatments 25 EBR and 1 IBR brachytherapy..I was talking to s resident about this ,he wanted me to start the hormone Monday ..then radiation on may10th and do the 1 day brachytherapy in the middle of the IBR ...I told him I needed at least a few days to think about it ..I get a call from the scheduler that same night last thursday at 740 pm ..she left a message saying she heard u wanted to proceed with treatment call her anytime to set it al up....WTH ...I don’t think I can wait until until June 25 th for UCSF the worrying will ruin me ..I am scheduled for surgery on the 31st and I am seeing the dr on Tuesday because I have many more questions to ask..this dr had been with UCSF for 32 years ..I waited this long to see him because he is known at least around here as the best ...UCSF is #4 in the nation supposedly ...he is the only who wanted this testing done .  After seeing him the first time I did say to everyone how impressed I was with him and I said what ever he thinks I should do I will.   He did say that hands down he would take it out and go straight fir the cure ...looks like I am seriously leaning this way .i just seriously thought the test would come back of low or intermediate risk since everything was pointing that way ..I can’t,let my fear of surg sway my decision because that’s what I’m doing ... I’m sure a lot choose other treatments over surgury because of fear as well but if it’s the right thing to do one should try to get over the fear ..but it’s tough ..thanks for listening again ..always open to suggestions ...btw I went fOr another psa test Monday came back 7.1 down from 8.6 when diagnosed dont know if that means anything 

  • RobLee
    RobLee Member Posts: 269 Member
    Steve1961 said:

    Need some reassurance

    as u all know this has been going on fir 5 months ...starting to slowly lose it ..all the studying all the drs all the info.all the what’s ifsssss .getting that news now 2 weeks ago about the cancer being of high risk and Gleason 4 being of cribiform has me real shook up..so the last doc says we shouldnot wait around and watch this ,,.well I knew that that 5 months ago ..he says he didn’t think it would escape the would capsule in the next few months ..well what if i saw the this dr back in February he would have said the same thing and now it’s 3 months later ...the radition dr at UCSF cant start treatment until   June 25th ....that would be 7 months after diagnosis .now with high risk cancer .if I knew this 5 months ago I would be done with treatment no way I would have waited 5 months ..would youuuuu.I mean only 15% of men hsve high risk cancer and I am one of them...10 year survival rate drops to like 70 percent the 15 year like 67 ...but the localized 15 year rate is still Around 90 % ...so where does that put me ..I guess the only way to know if it’s actually still localized us surgury...the Stanford people want to do the most sgressive treatment just to make sure in case it actually is of high risk.they want to do 4 months hormine treatments 25 EBR and 1 IBR brachytherapy..I was talking to s resident about this ,he wanted me to start the hormone Monday ..then radiation on may10th and do the 1 day brachytherapy in the middle of the IBR ...I told him I needed at least a few days to think about it ..I get a call from the scheduler that same night last thursday at 740 pm ..she left a message saying she heard u wanted to proceed with treatment call her anytime to set it al up....WTH ...I don’t think I can wait until until June 25 th for UCSF the worrying will ruin me ..I am scheduled for surgery on the 31st and I am seeing the dr on Tuesday because I have many more questions to ask..this dr had been with UCSF for 32 years ..I waited this long to see him because he is known at least around here as the best ...UCSF is #4 in the nation supposedly ...he is the only who wanted this testing done .  After seeing him the first time I did say to everyone how impressed I was with him and I said what ever he thinks I should do I will.   He did say that hands down he would take it out and go straight fir the cure ...looks like I am seriously leaning this way .i just seriously thought the test would come back of low or intermediate risk since everything was pointing that way ..I can’t,let my fear of surg sway my decision because that’s what I’m doing ... I’m sure a lot choose other treatments over surgury because of fear as well but if it’s the right thing to do one should try to get over the fear ..but it’s tough ..thanks for listening again ..always open to suggestions ...btw I went fOr another psa test Monday came back 7.1 down from 8.6 when diagnosed dont know if that means anything 

    The problem is...

    The problem is you have had WAAAY too much time to think about this, you have way too many doctors involved, and way too many options to chose from. You need to make a decision and not put it off any longer. Mine was very high risk, and as soon as I got the diagnosis I had surgery scheduled just as soon as I could get some guys lined up to move our stuff out of our house and load a truck. Then I drove a uHaul a thousand miles and flew back the weekend before my surgery.

    You can try to simplify things by making pro/con lists for each treatment you are considering. Or use a dart board and if you don't like the answer then throw again. What is left is what your stuck with. Or you might want to have more input to the decision than a mere crap shoot. But the longer you wait the closer your cancer will grow toward the capsule wall and then you're looking at a lot more complicated treatment.

    Last week I had surgery number fourteen (but who's counting)... at least I think it was 14. Anyway, just another surgery did not scare me. Radiation scared me. I was lucky that I did not have time to overthink what was going to happen. As I've said before, the most effective executives make a decision and just go with it.

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    edited May 2018 #186
    steve

    RobLee gives good advice, but first have a drink tonight, relax a little....then cut to the chase and make your deicision............no one else can make it...none of us.....none of your family members...no one but you....................

  • Steve1961
    Steve1961 Member Posts: 301
    Thanks

    u r all right need to make choice ...don’t feel comfortable with Stanford radiologist..I mean wants to start ADT this week the EBR may 14 and in the middle of all that do the brachytherapy with no break...wonder if my body can handle that all at once ..ohh I must continue my physical job as well .....UCSF radiologist is on fu....Ing vacation the next 2 weeks and won’t answer ant questions and I can get an appt to se him until may 24 and I cane stsrt radition until damn June 24th almost 2 more months ...I can’t wait this long .rob Lee is right this cancer could be growing faster i will meet with surgeon Tuesday and then decide ....looks like god is making all this happen fir a reason I think he may want me to do surgury ..we shall see thanks everyone 

  • hotstox
    hotstox Member Posts: 4
    Steve1961 said:

    Oh I think my urologist

    Oh I think my urologist should have told me the Gleason score now I’m thinking he didn’t because it was bad and he would let the specialist deal with it ...I am very upset...about all this...myGP seems to think he is great but I dint know now 

    Gleason Score

    If you had a biopsy, your gleason should be assessed right there on the report.  The last page of mine contains the final answer while the body of the report shows the results of each core taken.

     

    Richard

  • hotstox
    hotstox Member Posts: 4
    Steve1961 said:

    have report looks very hopeful

    core 3 gleason 3+4 tumor size 7mm 80%length of biopsy

    core6 gleason 3+4 tumor size9.5 mm 90 % lenght of biopsy

    core 8 gleason 3+3 tumor size 2 mm 20 % length of biopsy

    urologist recommends radition but my GP whom i have been with for 25 years suggestd removal..get it out and over with  he thinks is the most sure way..granted he is just a GP but he is very knowledgable...i think i will meet with both a radiologist and rbotic surgeon just not sure what questions to ask.......many thanks for all your help and guidence ...i will follow up all the y way with my journey...my doc did say take my time and find the right Dr..he says i should find one that has done the surgury at least 500 times...i am fortunate to have excellent facilities around me...i am in the san francisco bay area....UCSF  as well as Stanford......i am sure i will find  agreat surgeon ...or radiation oncologist

     

    Surgery option

    I have a Gleason 4+4.  Surgery is on for Thursday, May 10...4 days from this writing.  I reached the surgery conclusion after considering a number of factors.  Since I am 71, there is some logic in having radiation but, since the cancer is encapsulated (not found outside the prostate), I could just do nothing and have perhaps 10 years of life.  Bone scan is clear.  But here's what tipped the scale for me.  Radiation is easier and less invasive but has an effect on surrounding organs.  If you have radiation, you may not be able to have surgery later since other organs may be fused together.  Obviously check with your Dr. on this.  Also, if you have radiation, you will be coming back every six months or so for a progress report.  I personally dont like that either.  I dont need more drama. By removing the prostate it seems you get a much more certain result earlier, granted possibly more recover time, but your PSA goes to zero.  If it ever becomes other than zero, the docs know they need to do other testing. But you have a very easy indicator that there could still be a problem since it will be part of a routing physical.

    My PSA started out at 3.5 rose (over about 2 years) to 4.5.  My Internist said "lets check with a urologist".  Hats off to him on that because many of my friends (who happen to be docs) say they would not have concerned themselves at this point.  Now, since the cancer is encapsulated and bone scan negative, I believe it is the right decision to get this over with.  Stay tuned.  I'll let you know in 3 or 4 months. :)  Get other opinions and select a Dr. with a lot of experience in robotics.  If your town doesnt have a great facility, consider where else you might be able to go for the treatment.  Hi tech is super important.  ie. Laproscopic/robotic.

    Keep cool and do your research.  Once you find out about the options you'll be more relaxed and optomistic. A good attitude is a real help.  Best of luck to all of you.

     

    Richard

  • ASAdvocate
    ASAdvocate Member Posts: 179 Member
    RobLee has given you good advice

    The more time you deliberate, the more confused and conflicted you are becoming. RobLee and I watched a very intelligent and methodical man with a similar case as yours, spend six months interviewing every expert, and reading just about everything written, in his exhaustive quest to find a treatment that was best for him. For months, he seemed sold on surgery. Suddenly, after meeting an expert in that treatment, he decided on High Dose Brachytherapy, and had that treatment, and is very satisfied. So, while several options could cure you, you need to roll the dice on one.

    Personally, with the G4 with Cribriform. I would consider a strong regimen, such as IMRT with brachy boost, or HDR-BT as a monotherapy.

    https://www.ncbi.nlm.nih.gov/pubmed/28341241

    Good luck.

     

  • Steve1961
    Steve1961 Member Posts: 301

    RobLee has given you good advice

    The more time you deliberate, the more confused and conflicted you are becoming. RobLee and I watched a very intelligent and methodical man with a similar case as yours, spend six months interviewing every expert, and reading just about everything written, in his exhaustive quest to find a treatment that was best for him. For months, he seemed sold on surgery. Suddenly, after meeting an expert in that treatment, he decided on High Dose Brachytherapy, and had that treatment, and is very satisfied. So, while several options could cure you, you need to roll the dice on one.

    Personally, with the G4 with Cribriform. I would consider a strong regimen, such as IMRT with brachy boost, or HDR-BT as a monotherapy.

    https://www.ncbi.nlm.nih.gov/pubmed/28341241

    Good luck.

     

    Most definitely 

    Most definitely 

  • RobLee
    RobLee Member Posts: 269 Member
    hotstox said:

    Surgery option

    I have a Gleason 4+4.  Surgery is on for Thursday, May 10...4 days from this writing.  I reached the surgery conclusion after considering a number of factors.  Since I am 71, there is some logic in having radiation but, since the cancer is encapsulated (not found outside the prostate), I could just do nothing and have perhaps 10 years of life.  Bone scan is clear.  But here's what tipped the scale for me.  Radiation is easier and less invasive but has an effect on surrounding organs.  If you have radiation, you may not be able to have surgery later since other organs may be fused together.  Obviously check with your Dr. on this.  Also, if you have radiation, you will be coming back every six months or so for a progress report.  I personally dont like that either.  I dont need more drama. By removing the prostate it seems you get a much more certain result earlier, granted possibly more recover time, but your PSA goes to zero.  If it ever becomes other than zero, the docs know they need to do other testing. But you have a very easy indicator that there could still be a problem since it will be part of a routing physical.

    My PSA started out at 3.5 rose (over about 2 years) to 4.5.  My Internist said "lets check with a urologist".  Hats off to him on that because many of my friends (who happen to be docs) say they would not have concerned themselves at this point.  Now, since the cancer is encapsulated and bone scan negative, I believe it is the right decision to get this over with.  Stay tuned.  I'll let you know in 3 or 4 months. :)  Get other opinions and select a Dr. with a lot of experience in robotics.  If your town doesnt have a great facility, consider where else you might be able to go for the treatment.  Hi tech is super important.  ie. Laproscopic/robotic.

    Keep cool and do your research.  Once you find out about the options you'll be more relaxed and optomistic. A good attitude is a real help.  Best of luck to all of you.

     

    Richard

    Good luck Richard

    You are probably in excellent health (other than the PCa) to be undergoing RP at age 71. I hope everythign goes well for you. You make many good points throughout your post. My Urologist mentioned "salvage radiation" during our initial consultation, and required me to meet with a RO before proceding with surgery. RO's generally do not bring up the possibility of treatment failure. But I did learn after reading many online forums that PSA following RT bounces all over the place but never goes to zero. It just levels off somwhere and presumably the post treatment process is anything but reassuring. Granted, the primary radiation route has its benefits for those who choose it, but I for one required more certainty.

    Good luck on Thursday!

  • RobLee
    RobLee Member Posts: 269 Member
    Good luck Richard

    A new forum brother has posted on page one of this thread that he is having RP on Thursday May 10th. As threaded replies are not easy to find in this forum, I thougt I'd post a link to his story. Let's wish user "HotStox" a successful surgery!

    https://csn.cancer.org/comment/1627498#comment-1627498

  • graycloud
    graycloud Member Posts: 42 Member
    Good luck

    I thought I would just throw this in.  My husband is 3 months post robotic, nerve sparing surgery to remove his prostate.  We were gleason 9 going in.  Caugh it early.  Downgraded to a 7 post surgery.  Lymph nodes - clean.  Bladder neck and seminal vessels - clean.  We went to one of the top prostate cancer centers in the country/world.  My husband is doing fantastic.  Was it a piece of cake?  No, but for him to be feeling great and doing great at this point 3 months post surgery is incredible.  His side affects are getting better every day.  No pad at night - can sleep in his old sleeping shorts. A victory last week!   I'm confident he will be out of pads during the day(other than for exercising) within the next 60-90 days.  From an ED standpoint, very minimal side affects.  The doctors have put him in the top 15% for recovery because he listened to his doctors, spent 3 months pre-surgery getting healthy, did what they told him to do, and worked hard.  Put your emotions now in to getting in the best physical shape of your life.  Start walking.  If you decide to go the surgery route - tell your doctor your want physical therapy before surgery to get a baseline on your pelvic floor strength, and get them to agree to start PT 3 weeks post surgery.  You've got this! 

     

  • Steve1961
    Steve1961 Member Posts: 301
    graycloud said:

    Good luck

    I thought I would just throw this in.  My husband is 3 months post robotic, nerve sparing surgery to remove his prostate.  We were gleason 9 going in.  Caugh it early.  Downgraded to a 7 post surgery.  Lymph nodes - clean.  Bladder neck and seminal vessels - clean.  We went to one of the top prostate cancer centers in the country/world.  My husband is doing fantastic.  Was it a piece of cake?  No, but for him to be feeling great and doing great at this point 3 months post surgery is incredible.  His side affects are getting better every day.  No pad at night - can sleep in his old sleeping shorts. A victory last week!   I'm confident he will be out of pads during the day(other than for exercising) within the next 60-90 days.  From an ED standpoint, very minimal side affects.  The doctors have put him in the top 15% for recovery because he listened to his doctors, spent 3 months pre-surgery getting healthy, did what they told him to do, and worked hard.  Put your emotions now in to getting in the best physical shape of your life.  Start walking.  If you decide to go the surgery route - tell your doctor your want physical therapy before surgery to get a baseline on your pelvic floor strength, and get them to agree to start PT 3 weeks post surgery.  You've got this! 

     

    Thanks

    Was surgury a success what’s his PSA level

  • Steve1961
    Steve1961 Member Posts: 301
    edited May 2018 #196
    Question about positive margins

    I know what positive margins are ...but do u have to wait until after surgery to find out if there were any according to path report and if so hope for the best or does the surgeon find out in real time during the surgery so he can fix things if there were positive margins 

  • RobLee
    RobLee Member Posts: 269 Member
    Positive Surgical Margins

    Positive margins aappear during the course of surgery. Depending on the location of the tumor on the prostate the PSM may be correctable. If the extracapsular extension is at the base, the surgeon squirts dye on the surrounding tissue that can identify cancerous tissue that can usually be cut away. If the tumor is at the apex it becomes more difficult to differentiate between healthy and cancerous tissue. Samples of tissue may be excised and sent to the pathology lab for examination during the course of surgery to determine if the tissue contains any cancerous cells.

    As is usually the case when cancer is involved, it is not a simple matter. Nothing ever is. When there is knowledge upon the conclusion of surgery that surgical margins remain the patient may be advised to undergo adjuvant radiation as soon as continence is regained. Sometimes it is preferred to "wait and see" if PSA rises over the months or years following surgery before commencing salvage radiation. The hope being that the cancer is still confined to the prostate bed or pelvic floor.

    The advntage of surgery is that the surgeon is actually "in there" looking around for cancer, whereas radiation just bakes the entire area. Radiation damages all the cells it hits. Healthy cells are able to recover but cancerous cells are not and eventually die. Hormone deprivation weakens the cancerous cells and makes them more susceptible to the effects of radiation, but does not kill them. It's an imperfect process but usually gets the job done.

  • scout10
    scout10 Member Posts: 2
    Steve1961 said:

    have report looks very hopeful

    core 3 gleason 3+4 tumor size 7mm 80%length of biopsy

    core6 gleason 3+4 tumor size9.5 mm 90 % lenght of biopsy

    core 8 gleason 3+3 tumor size 2 mm 20 % length of biopsy

    urologist recommends radition but my GP whom i have been with for 25 years suggestd removal..get it out and over with  he thinks is the most sure way..granted he is just a GP but he is very knowledgable...i think i will meet with both a radiologist and rbotic surgeon just not sure what questions to ask.......many thanks for all your help and guidence ...i will follow up all the y way with my journey...my doc did say take my time and find the right Dr..he says i should find one that has done the surgury at least 500 times...i am fortunate to have excellent facilities around me...i am in the san francisco bay area....UCSF  as well as Stanford......i am sure i will find  agreat surgeon ...or radiation oncologist

     

    type of treatment

    I was recently diganosed March 5, 2018. I have done a ton of reserach, talked to many patient friends, my urologist, a radiation oncologist, and robotic surgeon. June 14 I am getting robotic surgery. If you get radiation it burns the tissue and leaves scar tissue, and if the cancer returns you can not have robotic surgery. I have chosen surgery to get the prostate gland, seminal vesicles, and lymph nodes all removed. I have chosen a robotic surgeon who has done 700 surgeries, and also a top hospital here in Atlanta, Ga. You have to wait 8 weeks after a biopsy before you can have the surgery to allow the prostate gland to heal. I hope this helps, I wish you well, I know the anxiety stinks. Try to be strong, positive and a lot of prayers. Good Luck.

  • MK1965
    MK1965 Member Posts: 231 Member
    scout10 said:

    type of treatment

    I was recently diganosed March 5, 2018. I have done a ton of reserach, talked to many patient friends, my urologist, a radiation oncologist, and robotic surgeon. June 14 I am getting robotic surgery. If you get radiation it burns the tissue and leaves scar tissue, and if the cancer returns you can not have robotic surgery. I have chosen surgery to get the prostate gland, seminal vesicles, and lymph nodes all removed. I have chosen a robotic surgeon who has done 700 surgeries, and also a top hospital here in Atlanta, Ga. You have to wait 8 weeks after a biopsy before you can have the surgery to allow the prostate gland to heal. I hope this helps, I wish you well, I know the anxiety stinks. Try to be strong, positive and a lot of prayers. Good Luck.

    Yes

    Yes. You can have Salvage RP after Radiation. That info always comes from surgeons who are performing surgery and trying to scare patients away from Radiation which is in this time comparable shoulder to shoulder with surgery in regards to succes rate and recurrence. Procedure is riskier but many centers are offering it.

    Here in Houston, It can be done at MDA. Recovery might take longer and SE might be more pronounced but they are anyway problem after RP even as a primary treatment.

    MK

  • Steve1961
    Steve1961 Member Posts: 301
    MK1965 said:

    Yes

    Yes. You can have Salvage RP after Radiation. That info always comes from surgeons who are performing surgery and trying to scare patients away from Radiation which is in this time comparable shoulder to shoulder with surgery in regards to succes rate and recurrence. Procedure is riskier but many centers are offering it.

    Here in Houston, It can be done at MDA. Recovery might take longer and SE might be more pronounced but they are anyway problem after RP even as a primary treatment.

    MK

    Yep

    r u right u can hsve surgury after radiation it’s just more risk of ed and incontinance ..they do it here st UCSF 

  • Steve1961
    Steve1961 Member Posts: 301
    Decision coming

    I will be honest will all of you wonderful people that have helped me ...I know I am being tooo thourough but I have all these great hospitals near me and drs at Stanford and UCSF  so why not f getbopinions  glad I did  now we know exactly what type of cancer it is but now dont Want to wait much longer...I kinda Want to have this thing taken out and be done with it ..but to be honest with all of you . I am sooo afraid of being put under ..I never have been and when I start thinking about it I get all worked up, I mean worked up. Like anxiety ridden ...I would hate to not do the right thing just because I am afraid to be put under the surgUrey side affects don’t worry me at all  the ED. Incontinance losing. Length the catheter just the anesthesia part frightens me ...I should thank god I have my dr gave me a choices.  He saying both have same overall outcomes and the radiologist seems to think he can cure me he is very confident . Well I guess ebryone has their reasons for not wanting surgury I hope mine isn’t a cowardly one .wouldnt want to,regret the choice I made bit I guesss this is a legitimate reason ....I just want to feel good about making my decision because Im pretty sure it going to be radiation...thanks everyone for all your help