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  • need help just found out i have prostrate cancer

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    Old 08-31-2020, 05:33 PM   #1
    phil138
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    Angry need help just found out i have prostrate cancer

    MRI Tesla 3 showed one lesion 4/5 rad ,it said it was organ defined
    urologist felt the lesion on exam
    psa 7.1 8.0 6.9 8.0
    biopsy they took 14 cores ,12 were positive 4 were the lesion was were 4 plus 3 but the rest were 3 plus 3
    they said i was a 3 plus 4 but had higher level due ti the lesion.
    he they told me i am only a candidate for surgery or radiation nor seeds because i have to much cancer in there
    i am going to do bone scan and ct now .
    what are my chances of this spreading before surgery i am doing it on Oct 6 i am only 56 years old and very fit.
    he told me the nerve for the sexual part will be damaged due to all the cancer ion that side after surgery i been doing weights for 30 years now i screwed with the chance of incontinence
    are you supposed to wait 6 to eight weeks after biopsy to have surgery
    Dealing with this alone is very difficult any advise on radiation i heard to terrible side effects and at least surgery you get it out

     
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    Old 08-31-2020, 09:28 PM   #2
    Sw1218
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    Re: need help just found out i have prostrate cancer

    phil,

    hello, phil. i'm so sorry you have to go through this, but with your support group in this forum, i can assure you won't be alone and will receive GREAT advice/information. here's some things you can do.

    1. call the john hopkins labs and ask to speak to a ms. jackie {410.614.6330 or 410.955.2405} tell ms. jackie that you would like dr. john epstein to take a look at your slides to give you a 2nd opinion. i wouldn't agree to ANY form of treatment without doing so. she {ms. jackie} will give you all of the information you need to have that done. dr. john epstein is one of the TOP pathologists in the country to study prostate cancer and can give you a more accurate diagnosis of what he finds. also, if you live outside of baltimore, maryland, there will be at least a charge of $275, because they don't bill out of state insurance. so, what they'll do is just send you a bill in the mail. you WILL get the 2nd opinion results before you are billed, so don't fret. also, make sure you ask them to send you a copy.

    2. purchase a book titled [The Key to Prostate Cancer: 30 Experts Explain 15 Stages of Prostate Cancer
    by Dr Mark Scholz] some book stores have the paperback for $18.49 and on kindle for $10.99. this is a book that will break down what IS prostate cancer, what treatments you qualify for and how to take good care of yourself.

    3. also, keep in mind a urologist loves surgery like a fat kid loves cake. so of course he/she will tell you that you need surgery. surgery is their area of expertise. a uro telling you that you need surgery is like asking a kid do you want veggies or cake for dinner. which choice do you think the kid'll make? my urologist told me the same crap. he said i needed a week to think about it. i took two months before i decided on radiation. i encourage you to do your own studying, ask questions, get opinions and determine for yourself which option would be best. the bone and CT scan will help determine if the cancer has spread. in general, prostate cancer is very slow growing, so unless they're putting you on a treatment right now, you have time to weigh your options. you'll be fine before 35 days from now. this is VERY treatable.


    4. from here on out, keep a list of ALL appointments, paperwork, results and conversations you have with any doctor.
    __________________

    D.O.B. | 12/18/1973
    02.28.2019 | Dx 45
    Elev. PSA | 11.9
    GS | 4+3 = 7
    Treatment | HDR Brachytherapy & 6 mths of Casodex 50mg

     
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    Old 08-31-2020, 10:23 PM   #3
    guitarhillbilly
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    Re: need help just found out i have prostrate cancer

    A Good UR will not push you into any particular treatment but inform you of the Pros and Cons of Surgery or Radiation.
    My UR is a surgeon who performs robotic RP's and he never "pushed" me towards surgery. In fact he works very closely with the Radiologists at the Cancer Center where I had my 42 IMRT Treatments. My wife and I made the choice as a team to do the IMRT and ADT.
    My UR is the one who performed my Fiducial Markers and SpaceOAR GEL Procedure at my local hospital in the surgery area while I was under general anesthesia.
    I cannot tell you what treatment to choose but gather as much information as you can about your particular diagnosis before making any decision on treatment method.
    I wish you the very best outcome in whatever you choose.
    __________________
    T2a / Gleason Score 8 / PSA at Diagnosis 6.9 /
    1-5 aggressive score : 4
    12 cores= 4 positive
    NBS = Negative
    Pelvic CT= Negative
    Pelvic MRI= Negative
    Age at Diagnosis= 60-65 age group
    Completed 42 IMRT Sessions
    Lupron scheduled for 2 years [Started DEC 2019]

     
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    Old 09-01-2020, 04:29 AM   #4
    Steve135
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    Re: need help just found out i have prostrate cancer

    Sorry to see you arrived a t this page. The first three post are great advice. I'll add that what happens to one person isn't the same for the next so don't compare yourself with anyone else, even when your age numbers and test look the same. If you read the signatures on peoples post you'll see how different results turnout. Take the information from all soarces and make your final choice. It is very common to wait 8 weeks after biopsy as the organ swells so large from biopsy. It needs to be as small as possible to allow removal, or radiation. IMHO the last thing to address is saving the nerve bundle, if you leave Pca tissue in your body you might just as well not done surgery! Most of us have several years under our belts and whats available today wasn't when we had our treatments. That's a real plus for you. I was 56 also, my numbers said it most likely escaped, they were correct. 5 years in the found it had escaped long before they knew I had Pca in the first place. You did nothing wrong and now you need to choose the right path. Bring someone with you for every visit you won't hear half of what is said.
    steve
    _________________
    Diag. 56 DOB 2/59 PSA Base 1.5 01/14 2.0 6/15 2.4
    Biopsy 6/15 5 Gleason Score 8
    RP 10/15 Path 54g 5x4.2x2.8cm 4+3=7 Tumor location quadrants Bilateral
    Extra-capsular extensions present,SV no invasion
    Vascular invasion none, PNI ,Multicentricity multifocal
    Margins No tPresent inked margins 5 neg pT3a,N0
    PSA 10/16 <0.1 02/7/17 1st BCR 0.4 02/15/17 0.5
    Pet Scan 2/17 Neg PSA 03/17 0.6 Axumin trial 17.4mm tumor rt. SVB Casodex + Trelstar
    04/17 SRT (42) to include location of tumor
    08/17 PSA 0.1 Last 6 uPSA 0.006 uPSA 2/19 0.030 2nd BCR 5/19 0.235 5/30 0.32 6/19 0.34 7/19 0.06 8/19 0.08 9/19 0.05610/190 0.08 11/19 0.07 12/19 0.07 7/19 Trelstar, Xtandi, Zoledronic Acid
    12/19 (3) SBRT Iliac bone liasion post SBRT 1/ 20 0.06 2/20 0.04 3/20 0.02 4/20 <.02 5/20 <0.02 6/20 <.02
    7/20 <0.014 8/13 <0.014

     
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    Old 09-01-2020, 05:00 AM   #5
    Prostatefree
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    Re: need help just found out i have prostrate cancer

    You can not assume the cancer has not spread. It is safer to assume it has.

    The body scans can only detect metastasized cancer above a certain size. So, the scans can not rule out the cancer has not spread. If they do detect remote cancer they may then be treated with radiation if possible.

    If you have been taking testosterone or testosterone boosting supplements to enhance your physique you should stop.

    A concern is if the surgery doesn't "get it all" you will have radiation after the surgery, either immediately or several years later. If the surgery fails and radiation must follow the surgery immediately without a chance for the side effects to fully recover they never will after the radiation. The choice then is to skip surgery and start with radiation and avoid the trauma of both. There may also be a choice to add androgen deprivation therapy to the radiation treatment to enhance it's effect.

    In my case, I had a large volume of 3+4. I had surgery. So far, so good. 4+3 is exponentially more serious and your young age is a clue it may be more aggressive since it is beginning sooner. I recommend genetic testing of your biopsy samples to determine aggressiveness. If it tends toward less aggressive it may support a plan for surgery first. If it comes back highly aggressive it increases the chances/risk it has already metastasized. Valuable information, but again, not conclusive.

    There are rare cases where surgery is used simply to debulk the cancer knowing radiation will follow to get more, but not all of it.

    Surgery also gives the advantage of physically examining the prostate and accurately grading the cancer. In my case, the biopsy found only 3+3. In reality, surgery revealed 3+4. It confirmed my choice to be more aggressive in my treatment. In your case, the guided biopsy has already revealed what you want to know, a large volume of aggressive cancer. Even so, sometimes the genetic testing will reveal a less aggressive 4+3. This may help in your choice to start with surgery while your age and volume of G4+3 points to going directly to radiation.

    Your guided biopsy indicates a higher level of care. If your doctor believes he may not be able to save a nerve bundle it implies he thinks there is a reasonable chance/risk the cancer has escaped the prostate near those nerve bundles. Not the prognosis you want to hear, but good to know your doctor recognizes it and is being honest.

    Knowing only what you've shared, the scale tips in the direction of skipping over surgery and going directly to radiation. Remember, I'm just a guy on the internet and not a doctor.

     
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    Old 09-01-2020, 10:58 AM   #6
    Southsider170
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    Re: need help just found out i have prostrate cancer

    Based on your statistics and biopsy report, you are definitely in the treatment zone.

    Radiation or surgery are what you want to consider. Generally for young guys like you, the recommendation is surgery- provided they don't find metastases in your scans.

    If you do go for surgery, you should be advised that radical prostatectomy is one of the most challenging surgeries out there that is commonly done. You want a doctor with a lot of experience with the daVinci robot. A minimum of 300 of these operations, and that's really a minimum. A lot of operations makes it more certain that the doctor has already seen it all, so nothing he sees will surprise him while you are being treated.

    Most surgeons definitely want to wait a minimum of 6 weeks to let the prostrate settle down after the biopsy to do the operation, although there is some flexibility there.

     
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    Old 09-01-2020, 01:53 PM   #7
    IADT3since2000
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    Re: need help just found out i have prostrate cancer

    Hi Phil138.

    You've had good responses already. My view is summed up in the following:
    Quote:
    Originally Posted by Prostatefree View Post
    Knowing only what you've shared, the scale tips in the direction of skipping over surgery and going directly to radiation. Remember, I'm just a guy on the internet and not a doctor.
    That said, surgery is not an unreasonable option.

    Ö.Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
    Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
    Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA remarkably low and stable at <0.01; apparently cured. (Current T 99 6/5/20.) Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs.

     
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    Old 09-08-2020, 02:04 PM   #8
    Terry G
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    Re: need help just found out i have prostrate cancer

    Phil, Getting a second opinion from Epstein maybe the best $200 youíll ever spend. The difference between Gleason Pattern 3 and Gleason 4 is significant and Epstein is the very best and considered the gold standard. One of the biggest challenges of a prostate cancer diagnosis is choosing a treatment. Although most treatments are likely to offer a cure they all come with side effects. I suggest you make an informed decision having potential side effects that you can live with. Urologists are surgeons and most are not qualified to know a lot about or discuss radiation treatments. Unless you have significant urinary issues along with Pc I suggest talking with a Radiation Oncologist who specializes in Pc.

    The newest radiation treatments are very effective and delivered with precision and most guys suffer very few long term side effects. Some treatments like SBRT have only five radiation treatments. I suggest you do a Ďsearchí on this forum as well as the internet to educate yourself on your options. I would also recommend seeking out the very best practitioner and team no matter what treatment you may decide is right for you. As you can see from my signature I maybe bias towards radiation.

    Your PSA seems like itís been elevated for several checks. Was this your first biopsy? Did they tell you the size of your prostate and is your urinary function normal? I ask these questions not to pry; but, because they may help direct a treatment choice. Also, if youíre willing to share your location often times people on this forum can help direct you to specific Physicians, Radiation Oncologists, and Centers of Excellence.
    __________________
    Rising PSA:
    11/13 1.95; 9/15 3.28; 10/16 5.94
    TRUS 1/17
    Bx: Three of twelve cores adenocarcinoma Gleason 6 (3+3) all on left side, no pni.
    DOB 7/21/47; good health; age 69 @ Dx
    Treated 6/17 SBRT @ Cleveland Clinic by Dr. Tendulkar
    Reduced ejaculate only side effect; everything works
    To view links or images in signatures your post count must be 10 or greater. You currently have 0 posts.

    PSAís post.SBRT 1.1, 1.1, .9, 1.8, 2.7, 1.0, 0.3, 0.6

     
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    Old 09-09-2020, 03:27 PM   #9
    phil138
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    Red face Re: need help just found out i have prostrate cancer

    Sorry for not getting back sooner but I met with Radiation oncologist today and he told me Iím not eligible for brac seed, he recommended radiation with hormone but just the base radiation thatís all they have here thereís a lot of side effects he said to your rectum or your bladder so Iím opting for surgery my prostate size is 49 cc .

    56 Years old my urologist call just told me that I have a good chance of fighting this with surgery due to the prostate having so much With cancer in it hopefully taking it all out at once but he cannot guarantee me saving my sexual nerve because it might have some cancer on it he prefer to rather take it all out and not take the chance of the cancer spreading

    Iím just trying to figure out how I can deal after surgery all by myself anyone have any clues on sleeping food Arrangements and trying to deal with getting up and doing cooking and taking care of yourself Iím very fit and hopefully I can deal with it by myself I think the they will allow me one day at the hospital

    The radiation oncologist scared the hell out of me with all these side effects from radiation and hormone treatment My bone scan came out negative and hopefully my CT scan will be good next week and Iíll be ready for surgery the beginning of next month having 12 cores positive on the 14 Sounds very alarming two cores were 4 3 the rest were 33 So they categorize me as intermediate high.

    urologist wonít know my prognosis for sure until he takes my prostate out and does a biopsy and check to the margins and also I have to wait for three months for my PSA results Iím praying that itís not spread I really donít want to do radiation

    any help with the Preparing for surgery and after surgery by myself will be surely appreciated

     
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    Old 09-10-2020, 09:15 AM   #10
    IADT3since2000
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    Re: need help just found out i have prostrate cancer

    Hi Phil. You have been spooked and are not grasping key relevant facts and lining them up properly. Here's what I'm responding to that you posted, in part:
    Quote:
    Originally Posted by phil138 View Post
    ... I met with Radiation oncologist today and he told me I’m not eligible for brac seed, he recommended radiation with hormone but just the base radiation that’s all they have here there’s a lot of side effects he said to your rectum or your bladder so I’m opting for surgery my prostate size is 49 cc.... The radiation oncologist scared the hell out of me with all these side effects from radiation and hormone treatment My bone scan came out negative and hopefully my CT scan will be good next week and I’ll be ready for surgery the beginning of next month having 12 cores positive on the 14 Sounds very alarming two cores were 4 3 the rest were 33 So they categorize me as intermediate high.... I really don’t want to do radiation...
    Yes, external beam radiation, with or without a boost with seeds, plus ADT would be a good program that would be at least equal to the potential of surgery against the cancer, probably superior to surgery based on your characteristics, but very likely with a LOWER burden of side effects!

    Now what you wrote suggests that your local radiation facility is limited in what they can offer. If he really means that their treatment causes a lot of side effects to the rectum and bladder, then, in my informed but not medically educated opinion, you SHOULD NOT GO TO THAT DOCTOR FOR TREATMENT! These days, radiation should cause neither, except in rare instances. Now, if that is your only radiation option because of insurance or restrictions on your ability to travel, then surgery is a better option. But you may be less restricted than you think at this moment.

    What you want is a radiation facility with advanced treatment AND imaging capability, and I would think there is at least one in every state and most countries. That's important to both wipe out the cancer AND to target the dosing so minimal injury is done to other cells that are healthy, particularly in the rectum. Modern radiation facilities used by up-to-date, talented radiation oncologists and their teams achieve these effectiveness and safety objectives routinely, leaving their patients in good shape long-term, as in my case.

    Just a few years ago finding such a doctor and facility could be a tough as external beam radiation often took about 8 weeks to deliver (as it was delivered for me), and that could require traveling to a center of excellence in radiation with a stay of two months away from home. However, in the past several years, as has been posted earlier, external beam radiation can be delivered in as few as 5 sessions, often delivered a day or so apart, so a total span of under two weeks. Another choice is about 20 sessions delivered on the weekdays with the weekends off, so a span of about a month. Your ability to be away from home (which was an issue for me before it was resolved by imaging that allowed local treatment) is a factor the doctor should accommodate in making the treatment plan.

    The side effects from such an excellent course of radiation are remarkably low, and are extremely likely to involve NO LONG TERM INCONTINENCE, in contrast to surgery, which has a substantial risk of at least some incontinence, often a substantial and annoying burden. I'm endorsing what Terry previously posted here:
    Quote:
    Originally Posted by Terry G View Post
    Phil, ... The newest radiation treatments are very effective and delivered with precision and most guys suffer very few long term side effects. Some treatments like SBRT have only five radiation treatments...
    As for the side effects of ADT that you are worried about, did the doctor explain how they can be minimized and some even prevented by well-known, widely used counter measures? He obviously scared you about ADT, and it would be irresponsible if he did not couple his description of side effects with an explanation that they could be prevented or minimized. However, unfortunately, some doctors have just not gotten the word on counter measures and do not understand. The previously recommended book "The Key to Prostate Cancer" is good and succinct on this, with more detail in the fellow 2018 book "Androgen Deprivation Therapy 2nd Ed.", Wassersug, Robinson, and Walker.

    Don't be spooked! As the carpenters say, "Measure twice so you can cut once." Don't fire before you take careful aim.

    You should register for and view the conference, starting tomorrow, that has been addressed elsewhere on this board. You should especially hear the talk by Dr. Mack Roach, MD, a widely renowned, expert researcher/radiation oncologist. You might also get some good advice on ADT from the highly respected researcher/medical oncologist Dr. Nick Vogelzang, MD. You can submit questions, but the moderator is looking for questions he can direct to the speakers - questions that are short and of general interest, as opposed to ones with a detailed case history. You might ask something like, "For men with high-risk, organ confined but mostly positive (12 of 14 cores for me) MRI PI-RADS 4 to 5 disease, is there a high risk of burdensome side effects with modern external beam radiation plus ADT, and would brachytherapy be ruled out by the volume of cancer?" You could use that or modify it. I doubt all questions will fit in the time available, but it costs nothing to take your shot. Dr. Mack Roach or Dr. Nick Vogelzang would be the speakers to whom to address that question.Good luck!

    ….Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
    Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
    Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA remarkably low and stable at <0.01; apparently cured (Current PSA as of 9/4/2020). (Current T 99 6/5/20.) Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs.

    Last edited by IADT3since2000; 09-10-2020 at 11:05 AM. Reason: Added parts about my layman's opinion and asking a conference question.

     
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    Old 09-10-2020, 10:18 AM   #11
    guitarhillbilly
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    Re: need help just found out i have prostrate cancer

    Quote:
    Originally Posted by phil138 View Post
    Sorry for not getting back sooner but I met with Radiation oncologist today and he told me Iím not eligible for brac seed, he recommended radiation with hormone but just the base radiation thatís all they have here thereís a lot of side effects he said to your rectum or your bladder so Iím opting for surgery my prostate size is 49 cc .

    56 Years old my urologist call just told me that I have a good chance of fighting this with surgery due to the prostate having so much With cancer in it hopefully taking it all out at once but he cannot guarantee me saving my sexual nerve because it might have some cancer on it he prefer to rather take it all out and not take the chance of the cancer spreading

    Iím just trying to figure out how I can deal after surgery all by myself anyone have any clues on sleeping food Arrangements and trying to deal with getting up and doing cooking and taking care of yourself Iím very fit and hopefully I can deal with it by myself I think the they will allow me one day at the hospital

    The radiation oncologist scared the hell out of me with all these side effects from radiation and hormone treatment My bone scan came out negative and hopefully my CT scan will be good next week and Iíll be ready for surgery the beginning of next month having 12 cores positive on the 14 Sounds very alarming two cores were 4 3 the rest were 33 So they categorize me as intermediate high.

    urologist wonít know my prognosis for sure until he takes my prostate out and does a biopsy and check to the margins and also I have to wait for three months for my PSA results Iím praying that itís not spread I really donít want to do radiation

    any help with the Preparing for surgery and after surgery by myself will be surely appreciated
    I wish you the very best outcome in your choice and that you will not need radiation as you wish.

    Please understand that it is very possible that you may still need radiation and ADT in the future.

    https://prostate-center.com/basics/prostate-post-rt/
    __________________
    T2a / Gleason Score 8 / PSA at Diagnosis 6.9 /
    1-5 aggressive score : 4
    12 cores= 4 positive
    NBS = Negative
    Pelvic CT= Negative
    Pelvic MRI= Negative
    Age at Diagnosis= 60-65 age group
    Completed 42 IMRT Sessions
    Lupron scheduled for 2 years [Started DEC 2019]

     
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    Old 09-10-2020, 01:19 PM   #12
    IADT3since2000
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    Re: need help just found out i have prostrate cancer

    Quote:
    Originally Posted by phil138 View Post
    ...
    I’m just trying to figure out how I can deal after surgery all by myself anyone have any clues on sleeping food Arrangements and trying to deal with getting up and doing cooking and taking care of yourself I’m very fit and hopefully I can deal with it by myself I think the they will allow me one day at the hospital...
    These concerns won't be a problem if you do radiation and ADT. That treatment does not involve staying in a hospital. You do it on an outpatient basis. The daily treatments last under an hour, and that includes the gowning-up, positioning, imaging, and measurement adjustments, the actual radiation delivery, and getting dressed. Actual radiation time would probably be around ten to 20 minutes actually on the table. I always drove back and forth to my sessions, and at home I went about my normal day, though with some fatigue and needing to nap later in the course of sessions.

    ….Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
    Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
    Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA remarkably low and stable at <0.01; apparently cured (Current PSA as of 9/4/2020). (Current T 99 6/5/20.) Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs. Barely noticeable side effects from radiation; continuing low T, likely due to long use of ADT, but good energy and adequate strength.

    Last edited by IADT3since2000; 09-10-2020 at 01:20 PM. Reason: Typo

     
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    Old 09-10-2020, 08:21 PM   #13
    Terry G
    Junior Member
    (male)
     
    Join Date: Dec 2019
    Location: Butler PA
    Posts: 49
    Terry G HB UserTerry G HB User
    Re: need help just found out i have prostrate cancer

    Phil, I remain very puzzled regarding your ROís focus on scary side effects for Pc. I wonder if he specializes in PC. Yes every treatment choice comes with the risk of side effects some of which can be life changing. As I said earlier we need to select a treatment option based on the possible side effects that we can live with. The side effects for most men selecting RT tend to be minor and temporary and the treatment is typically very effective. Surgery does have its advantages. You do get a postmortem on what they removed and for some men thatís important. If you have BPH causing significant urinary issues on top of your cancer removing the prostate may improve your urinary situation. Removing your prostate does not guarantee that ďthey got it allĒ; however, your PSA should drop immediately to undetectable and for some men thatís important. For me none of the above was as important as retaining sexual function and losing or compromising my normal urinary function. A bonus was that RT was a piece of cake compared to going through surgery. Yep...I admit my bias; however, if you do some digging I think youíll find my results are pretty much the norm for RT guys.

    Jim has offered some very good advice regarding getting more information on each treatment so you can make an informed decision. Regarding RT I would recommend doing a search for ďWhat every man should know about radiation therapy for prostate cancerĒ. It should lead you to the MSKCC.ORG website and a comprehensive article for RT. Sloan Kettering is just one of several centers of excellence for treating cancer. You may also see if you can setup a Ďvirtualí consult with any one of the centers for excellence that treat PC. Iím just not comfortable with what either your Urologist or RO has said and a Iíd recommend seeking other opinions.
    Terry
    __________________
    Rising PSA:
    11/13 1.95; 9/15 3.28; 10/16 5.94
    TRUS 1/17
    Bx: Three of twelve cores adenocarcinoma Gleason 6 (3+3) all on left side, no pni.
    DOB 7/21/47; good health; age 69 @ Dx
    Treated 6/17 SBRT @ Cleveland Clinic by Dr. Tendulkar
    Reduced ejaculate only side effect; everything works
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    PSAís post.SBRT 1.1, 1.1, .9, 1.8, 2.7, 1.0, 0.3, 0.6

     
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    Old 09-15-2020, 06:54 PM   #14
    IceStationZebra
    Senior Member
    (male)
     
    Join Date: Jan 2020
    Posts: 154
    IceStationZebra HB UserIceStationZebra HB User
    Re: need help just found out i have prostrate cancer

    I'll throw my two cents in.

    Given your age and length of life left, surgery is your best option. Rest easy.

    I had surgery on 12/9/20. Continence came back really fast, relatively speaking. No sexual functionality is back yet and I just presume it isn't coming back at this point. But I would still do it again.

    I had a relatively mild case of 3+3 and many here questioned my choice for surgery at 48 years old. But as it turns out we got it right at the last minute, I had one small margin that was positive. Had we relied on active surveillance for another year or two it likely would have escaped. Just part of the frustrating part of this disease.

    The surgery was a relative walk in the park, pain wise. The bladder spasms lasted about an hour and sucked but stopped. The rest of it was the catheter which SUCKED. A helpful hint, ask your surgeon to put a catheter hanger pad on the inside of each leg. Then switch the catheter back and forth each day so that the catheter isn't tugging the penis to one side and wearing the inside of the urethra out. That simple fix would have made the catheter bearable.

    Good luck brother. Get that cancer out. You'll get the rest back except for ejaculation, which I now sometimes miss.

     
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    Old 09-15-2020, 08:20 PM   #15
    Shellsb
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    Join Date: Jul 2019
    Posts: 22
    Shellsb HB User
    Re: need help just found out i have prostrate cancer

    I echo southstationzebra....

    Surgery on 8/20/19

    80 psa , Gleason 9 and 12 of 14 cores positive. Undetectable PSA since 9/20/19 and a perfect pathology report. Good possibility for reoccurrence, but thatís for another challenge.

    I am 45 years older and zebra nailed it..... just my 2 cents.

    Last edited by Shellsb; 09-15-2020 at 08:21 PM. Reason: Dates

     
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