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    Old 04-07-2021, 02:09 PM   #1
    Pdubs4444
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    Can't shake this particular fear. Bone.

    I've posted previously about my recent PC diagnosis. 7.2 PSA. Biopsy done. Results show mostly negative cores or 3+3. That's all on the left. The right is the problem. Again, some negative cores and 3 + 3. But 1 with 3+4=7 and 2 with 4+3 = 7.

    I understand the latter are worse, especially the 4+3. The prostate is coming out, im 46. Before this surgery my EXCELLENT surgeon has me scheduled for a CT scan and bone scan. His nurse assured me he does this with all his prostatectomy patients. Not because of any extra fear of advanced metastases in my case.

    I suffer from tremendous anxiety, always have. This has made it unbearable to where I need xanax to get through the day. I just want the surgery done. I have been through 2 months of waiting and wondering. Now these scans are what keep me up at night. I know chances are low of specifically bone mets with my PSA of 7.2 and biopsy. But I can't get it out of my head that it's already mets and I'm screwed at 46. Even though my own surgeon and another doctor told me it would be extremely rare and they see me as a "typical" prostate cancer patient who can be either cured or just do maintenance for decades to come. I know there are no doctors here and nobody can answer these specific concerns. But I just need to vent. I want my surgery, recovery and life back.

     
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    Old 04-07-2021, 03:10 PM   #2
    IADT3since2000
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    Re: Can't shake this particular fear. Bone.

    Hi Pdubs, you wrote:

    Quote:
    Originally Posted by Pdubs4444 View Post
    ... I know chances are low of specifically bone mets with my PSA of 7.2 and biopsy. But I can't get it out of my head that it's already mets and I'm screwed at 46. ...


    Anxiety can bite any of us like a bad dream, no matter the otherwise convincing facts on the other side.

    With your figures, "extremely rare" matches what research tells us, convincingly! Even with my risky case characteristics, stated below, my CT and bone scan were negative. Indeed, such scans are not often done these days for patients like you as they are so rarely positive. Guidelines recommend that they not be done for patients like you. Perhaps your doctor does them because he also does/publishes research and uses them for that purpose.

    You have elected surgery, which is reasonable for someone in your circumstances as it very often is curative, as is radiation. But if you are in the rather small minority of intermediate-risk cases with some good characteristics who are not cured by surgery, you will then have a good shot at a cure with salvage radiation - it's not just a matter of "maintenance."

    You might want to consider consulting a doctor who could prescribe something for your excessive anxiety at this time. My understanding is that many patients have benefited from that if they are suffering from unwarranted anxiety.

    Ö.Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    21 years as a survivor. Doing well. 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 12/2/2020). (Current T 93 12/2/2020.) 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 do to long use of ADT, but good energy and adequate strength. I have a lot of School of Hard Knocks knowledge, and have followed research, which has made me an empowered and savvy patient, but I have had no enrolled medical education. What I experienced is not a guarantee for all but shows what is possible.

     
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    Old 04-07-2021, 05:42 PM   #3
    DjinTonic
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    Re: Can't shake this particular fear. Bone.

    I wouldn't worry about the imaging. A bone scan is routinely done for Gleason grade 7 (4+3) and higher. Your PSA is not alarmingly high. Checking for bone mets is just due diligence and part of your workup.

    Pelvic/abdominal CT scans serves several purposes -- in addition to giving your docs some idea as to whether your PCa is currently confined to the prostate or not, they serve to rule out anatomical problems/anomalies, other diseases such as cancer of other organs, adhesions or complications from prior surgery, enlarged lymph nodes, other medical conditions etc. Your surgeon doesn't want or need "surprises" when doing the procedure

    Just relax and let the medical professionals work for you. That is the attitude I had throughout my workup all the way into my surgery. As I'm sure you know, excessive anxiety serves no constructive purpose. The chances are that everything will go smoothly. If there are problems, you and your medical team will deal with them as need be.

    Stay positive!

    Djin
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    69 yr at Dx, BPH x 20 yr, 9 (!) neg. Bx, PCA3-
    7-05-13 TURP for BPH (90→30 g) path neg. for PCa, then 6-mo. checks
    6-06-17 Nodule on R + PSA rise on finasteride: 3.6→4.3
    6-28-17 Bx #10: 2/14 cores: G10 (5+5) 50% RB, G9 (4+5) 3% RLM
    Nodule negative for PCa. Bone scan, CTs, X-rays: neg.
    8-7-17 Open RP, negative frozen sections, Duke Regional Hosp.
    SM EPE BNI LVI SVI LNI(5L, 11R): negative, PNI+, nerves spared
    pT2c pN0 pMX, G9 (4+5) 5% of prostate (4.5x5x4 cm, 64 g)
    Dry; ED OK with sildenafil
    Decipher 0.37 (Low Risk), uPSA: 0.010 (3 mo.)...0.020 (3 yr. 7 mo.)

     
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    Old 04-08-2021, 03:24 AM   #4
    SubDenis
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    Re: Can't shake this particular fear. Bone.

    What I know is is fear is devastating and based on irrational thoughts. I listen to spiritual music and there is a song "Fear is a liar!" Why isn't it that we don't project good outcomes? We can say this will be curative as easily as it will be metastatic! I have a shirt that my wife bought that says "he is making it up!"

    I like to ask two questions. 1. What do I know? 2. What do I think? Focus on what you know! Denis
    __________________
    65YO healthy man, PSA 5/17 4.6, MPMRI, 5/17 lesion. 13 core biopsy 3 positive 3+3 All cores less than 30% 8/17 - second opinion Yale (3+4) in one core, < 5%, decipher test shows intermediate risks. HDR BT completed 2/6/18. 5/3/18 3 month Post HDR BT PSA 1.3, 6 mo PSA 1.2. 1-year PSA 1.0, testosterone 475, 18 month PSA 0.4 Testosterone 524, 24 month PSA 0.4, 32 month PSA 0.4 Testosterone 391, 40 months PSA 0.3, PSA 630

     
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    Old 04-08-2021, 05:37 AM   #5
    Insanus
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    Re: Can't shake this particular fear. Bone.

    There is a 99% chance there will not be bone Mets from prostate cancer on your scans for two reasons. You are an early stage and bone Mets are very unlikely at this stage with your G score. Even the most sensitive PET scans available today donít do a great job of finding very small areas of bone Mets.

    At 46 should you be worried? Hell yes. If you arenít with a prostate cancer expert find one.

     
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    Old 04-08-2021, 07:17 AM   #6
    Pdubs4444
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    Re: Can't shake this particular fear. Bone.

    Quote:
    Originally Posted by Insanus View Post
    There is a 99% chance there will not be bone Mets from prostate cancer on your scans for two reasons. You are an early stage and bone Mets are very unlikely at this stage with your G score. Even the most sensitive PET scans available today donít do a great job of finding very small areas of bone Mets.

    At 46 should you be worried? Hell yes. If you arenít with a prostate cancer expert find one.
    I am with an excellent urologist. Literally the best in my entire region. So I am not so worried about my level of care. Just this anxiety that dominates my thoughts. Anyone would be worried, but people with high natural anxiety can't get.past certain thoughts. Even when told by their own doctors these same things, the comfort levels are not better. Just need the endless waiting and testing over. Oddly im not afraid of surgery. I've had a few, and this one is actually much less invasive than the previous ones I have had in my.life.

     
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    Old 04-08-2021, 07:24 AM   #7
    SubDenis
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    Re: Can't shake this particular fear. Bone.

    Quote:
    Originally Posted by Pdubs4444 View Post
    I am with an excellent urologist. Literally the best in my entire region. So I am not so worried about my level of care. Just this anxiety that dominates my thoughts. Anyone would be worried, but people with high natural anxiety can't get.past certain thoughts. Even when told by their own doctors these same things, the comfort levels are not better. Just need the endless waiting and testing over. Oddly im not afraid of surgery. I've had a few, and this one is actually much less invasive than the previous ones I have had in my.life.
    We have a zoom support group Tuesday night 7:00 p.m. eastern time might be a good place to vent anxiety link is below

    https://us02web.zoom.us/j/82817487939

     
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    Old 04-09-2021, 10:42 AM   #8
    Prostatefree
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    Re: Can't shake this particular fear. Bone.

    Your anxiety has nothing to do with prostate cancer.

    The risk of prostate cancer will be with you the rest of your life regadless of the treament method you choose. My health system will monitor me for 10 years post treatment before clearing me.

    What worked best for me and anxiety was to transform the way I manage my thoughts. The mind is not a safe place and you can not trust emotions.

    Your mind produces thoughts endlessly. What makes you you is which of those thoughts you choose as your own. You get to choose. Just because you think it doesn't make it so. You get to say what the meaning of anything is, not your thoughts and not your emotions.

    It takes practise to retrain your relationship with anxiety. Some people like it. It's a definite buzz.
    __________________
    Born 1953; family w/PCa-grandfather, 3 brothers;
    7-12-04 PSA 1.9; 7-10-06 PSA 2.0; 8-30-07 PSA 3.2; 12-1-11 PSA 5.7; 5-16-12 PSA 4.76; 12-11-12 PSA 5.2; 3-7-16 PSA 7.2;
    3-14-16 TRUS biopsy, PCa 1%-60% across 8 of 12 samples, G3+3;
    5-4-16 DaVinci RP, Path-65g, lymph nodes, seminal vesicles, capsule, margin all neg, G3+4, T vol 35%, +pT2c, No Incontinence-6mos, Erections-14 months;
    1-15-21 PSA less than 0.02; zero club 4.5 yrs

     
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    Old 04-11-2021, 05:29 AM   #9
    Pdubs4444
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    Re: Can't shake this particular fear. Bone.

    Thanks as always for the responses. The CT scan is done and as most of you know it was very quick and easy. The bone scan I fear most is Tuesday. I was hoping to work a half day that day. Didn't know this test can take a few hours until I just read up on it. If I am scheduled at 9:30 can I really expect to be be done by say 1 or 2 pm? More I read, doesn't seem like it.

     
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    Old 04-11-2021, 06:27 AM   #10
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    Re: Can't shake this particular fear. Bone.

    Fear?

    These tests are your access to your health and your care. Embrace them.

    Why make a good thing bad?

     
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    Old 04-11-2021, 06:49 AM   #11
    Pdubs4444
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    Re: Can't shake this particular fear. Bone.

    Quote:
    Originally Posted by Prostatefree View Post
    Fear?

    These tests are your access to your health and your care. Embrace them.

    Why make a good thing bad?
    Only those who truly suffer from mental illness on top of physical illness understand that fear.

    Anyway, history of timing of these bone scans anyone?

     
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    Old 04-11-2021, 10:12 AM   #12
    Gary I
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    Re: Can't shake this particular fear. Bone.

    Quote:
    Originally Posted by Pdubs4444 View Post
    Only those who truly suffer from mental illness on top of physical illness understand that fear.

    Anyway, history of timing of these bone scans anyone?
    If you're in by 9:30, you should be out before 1pm.

    Seems like you're doing lots of reading. Suggest you read up on mindfulness.

    Fear, worry, and irrational obsession just feed inflammation, which in turn feeds cancer, and lots of other bad stuff.
    __________________
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    Old 04-11-2021, 11:10 AM   #13
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    Re: Can't shake this particular fear. Bone.

    Hi Pdubs,

    You asked:

    Quote:
    Originally Posted by Pdubs4444 View Post
    Thanks as always for the responses. The CT scan is done and as most of you know it was very quick and easy. The bone scan I fear most is Tuesday. I was hoping to work a half day that day. Didn't know this test can take a few hours until I just read up on it. If I am scheduled at 9:30 can I really expect to be be done by say 1 or 2 pm? More I read, doesn't seem like it.
    I had my tests back in late 1999, so my recollection is somewhat hazy, but I am almost sure I did it all within a few hours in the afternoon. The contrast agent is what takes time as you need to let it spread around the body for an hour or so, as I recall it. I would be surprised if you are not done by 1 or 2 pm.

    A doctor ordered these scans for me because I was very obviously a high-risk case where there was some chance the scans would provide a positive result; even for me, with a baseline PSA of 113.6 and a "rock hard" prostate, they did not. For anyone else reading this, a great many doctors are thoroughly convinced that these scans are not worthwhile unless the patient has high-risk case characteristics or an algorithm suggests there is a low risk of metastasis that should be ruled out. That said, a patient should not be concerned if his doctor orders these scans as some doctors stick to a routine they have maintained for many years. There are now far more sensitive and specific scans for soft tissue and bone metastases, but they are expensive enough that the cost/benefit balance is poor unless disease is high risk.

    Ö.Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    21 years as a survivor. Doing well. 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 12/2/2020). (Current T 93 12/2/2020.) 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 do to long use of ADT, but good energy and adequate strength. I have a lot of School of Hard Knocks knowledge, and have followed research, which has made me an empowered and savvy patient, but I have had no enrolled medical education. What I experienced is not a guarantee for all but shows what is possible.

     
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    Old 04-11-2021, 12:04 PM   #14
    Pdubs4444
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    Re: Can't shake this particular fear. Bone.

    Thanks Jim. And as you said protocol is different for all doctors. His nurse told me clearly he does this for ALL his surgical patients, nothing specific to me. There are a ton of surgeons who would probably would skip this for me. But he is thorough.

     
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    Old 04-12-2021, 05:43 AM   #15
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    Re: Can't shake this particular fear. Bone.

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