I have questions... new member

tonkinese88
tonkinese88 Member Posts: 13 Member
edited July 12 in Prostate Cancer #1

I am 53 and might be dealing with prostate cancer. heres my story. I have had my large intestine removed in 2008 from ulceritive colitis. I kept having microscopic blood in my urine and still do to this day. Also in past had a growth on my kidney that they did a cryoablation on 8 years ago and followed up with MRI for 5 years and last 2 with ultrasound. Nothing came back and basically cleared. Biopsy at the time was indeterminate. My urologist did 2 cystoscopies over course of 3 years just to make sure nothing was going on causing the microscopic bleeding but nothing ever found. Only thing he noticed was my prostate was a bit larger for my age. Had my first PSA test 16 months ago and it was 1.97. I repeated this week and its now 2.78 and free PSA is 30%. Psa is considered elevated now since its over 2.6. Saw my urologist who is one of the best with Cleveland Clinic today. He stated hes not overly concerned and told me not to stress and we came up with a plan. Said repeat PSA in 6 weeks. at that point if its about the same or has gone up he will get an MRI. Between the MRI and PSA he might order a biopsy to be sure. Due to my large intestine being removed I have a jpouch which is an internal pouch made from small intestine, and i cannot have anything done rectally or any type of radiation due to the pouch as it could cause it to fail and i could end up with a permanent bag rest of my life. He stated the if i need biopsy they will get it through the bladder??? If comes up cancer and what type, if i need treatment it would have to be removed by surgery since i cannot do any radiation. There is another Urologist at the clinic that does a single port robot through the perianal skin to remove and he has done 50-100 of them on jpouch patients with great success and minimal lasting complications. He mentioned could be BPH cuz we already know my prostate is enlarged for at least the past few years. He told me this is first step and try not to worry myself sick with it and we will figure it all out. He said for us getting answers so early the outcome will be more successful and more than a 98% survival rate..

Can anyone give me any insite on my situation? i would be so grateful..

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Comments

  • Clevelandguy
    Clevelandguy Member Posts: 1,206 Member
    #2

    Hi,

    Sounds like you are already working through the process. My Internist did not get excited til my PSA reached 4+ so sounds like you have some wiggle room. I had my Prostate removed at University Hospital Siedman cancer center in 2014 robotically by Dr. Lee Ponsky who came highly recommended. I have heard the Cleveland Clinic also have good doctors + facilities. As you were probably told BPH can also cause your PSA to rise. The determining factor will be the biopsy if & when it’s needed. I think your in good hands at the Clinic and like they said don’t get too worried too soon. Good luck……..

    Dave 3+4

  • Mar2124co
    Mar2124co Member Posts: 3 Member
    #3

    I was diagnosed with prostate cancer last year I am 70 y/o . PSA 8, upon diagnosis , ran all the procedures from : DE, biopsy, (Gleason 8)all the test. Radiation + ADT, recently PSA less than .86.

    So far so good 😊

  • Oldernow
    Oldernow Member Posts: 49 Member
    #4
    https://csn.cancer.org/discussion/327650/i-have-questions-new-member

    You're in good hands at Cleveland Clinic. Dr. Weight did my MRI Fusion Guided trans-perineal biopsy there in the fall of 2022. It was my 5th biopsy and my first trans-perineal. Doctor Weight did an awesome job. Had nitrous oxide and local pain meds. Walked in and walked out - no issues at all. He was able to find the cancer that had been hiding from other biopsies. I have since had radiation and ADT. Last PSA check was <.03 - considered non-detectable.

  • Old Salt
    Old Salt Member Posts: 1,530 Member
    #5

    YOur urologist:

    He stated hes not overly concerned and told me not to stress and we came up with a plan. Said repeat PSA in 6 weeks. at that point if its about the same or has gone up he will get an MRI. Between the MRI and PSA he might order a biopsy to be sure.

    Makes a lot of sense IMHO.

    Best wishes, I hope that no intervention will be necessary.

  • tonkinese88
    tonkinese88 Member Posts: 13 Member
    #6

    Thanks guys. I’m still a little freaked out about the possibilities of it being cancer. My urinalysis also showed some blood , microscopic. But I’ve showed that off and on for years and that’s why urologist did the cystoscopy years ago and things looked good except for him mentioning the prostate enlargement. I mean I’m hoping it BPH rather than cancer. Are symptoms pretty similar?

  • Mar2124co
    Mar2124co Member Posts: 3 Member
    #7
    https://csn.cancer.org/discussion/comment/1713128#Comment_1713128

    You'll be ok. I too was dgx, with (PSA 8+), (Gleason 8), and have had (ADT+42treatment of EBRT) so far so good.

    PSA > 0.86. But all me body hair is running for the hills. A little Gynecomastia, and still frequent Nocturia.

    I can LIVE with all that. Good Luck.

  • Old Salt
    Old Salt Member Posts: 1,530 Member
    #8

    Since you (tonkinese88) asked:

    Early prostate cancer usually has no symptoms...

  • tonkinese88
    tonkinese88 Member Posts: 13 Member
    #9

    Has anyone had a biopsy thru the bladder?

  • tonkinese88
    tonkinese88 Member Posts: 13 Member
    #10
    https://csn.cancer.org/discussion/comment/1713125#Comment_1713125

    Just got my PSA and it went down from 2.74 six weeks ago and now 2.38. Urologist said we can do another in 3 months and could get MRI just to make sure no lesions as well as get an exact size and volume of my prostate. Since we know it’s at least slightly enlarged it could be reason for my PSA numbers and that’s just my normal. BUT said insurance typically won’t pay for it unless it’s over 4.

  • Mar2124co
    Mar2124co Member Posts: 3 Member
    #11

    I guess, the rest is watch and wait.

    That is a realistic stage, once your PSA is wacky

    Watch and Wait.

  • Old Salt
    Old Salt Member Posts: 1,530 Member
    #12

    You wrote that insurance may not pay for the MRI unless the PSA is over 4. That may be generally true, but you can try to get an exemption because of your unusual medical background (unable to get a 'normal' biopsy).

  • tonkinese88
    tonkinese88 Member Posts: 13 Member
    #13
    https://csn.cancer.org/discussion/comment/1713129#Comment_1713129

    Just got my PSA and it went down from 2.74 six weeks ago and now 2.38. Urologist said we can do another in 3 months and could get MRI just to make sure no lesions as well as get an exact size and volume of my prostate. Since we know it’s at least slightly enlarged it could be reason for my PSA numbers and that’s just my normal. BUT said insurance typically won’t pay for it unless it’s over 4.

  • tonkinese88
    tonkinese88 Member Posts: 13 Member
    #14

    Oh my urologist said they have a cash option mri that’s $400 at the CLEVELAND clinic. If I went thru my insurance it would be $1100. lol

  • tonkinese88
    tonkinese88 Member Posts: 13 Member
    #15

    so if have cancer would PSA continue to rise and not fall? Like I said my first PSA was a year and a half ago and I did not ejaculate or do anything 2 days prior and it was 1.91. About 8-9 weeks ago it was 2.78 and again did nothing for a few days before lab. PSA % was 30. Urologist had me redo PSA a few weeks ago and I didn’t ejaculate or do anything strenuous for a week prior this time and it was 2.38. Going to redo PSA in 3 months and if it goes back up going to do the MRI. I’m still in my head and stressed out. Anxiety has me convinced I have cancer.

  • Clevelandguy
    Clevelandguy Member Posts: 1,206 Member
    #16

    Hi,

    Most of the time if you have Prostate cancer your PSA will increase as time goes on. Never heard(not to say it isn’t done) of doing a biopsy through the wall of the bladder. Remember only a biopsy can determine if you have cancer so relax until that time comes, 2.38 and 2.78 are not really all that high.

    Dave 3+4

  • Rob.Ski
    Rob.Ski Member Posts: 174 Member
    #17

    PSA can bounce around some. Need to see an increasing trend to be concerned. Like Dave said, those numbers aren't that high.

  • Old Salt
    Old Salt Member Posts: 1,530 Member
    #18

    Those last two comments are spot on.

  • tonkinese88
    tonkinese88 Member Posts: 13 Member
    #19

    due to my PSA level and knowing my prostate is at least slightly enlarged which was found from a cystoscopy 2 years ago, my urologist at Cleveland clinic doesn’t seem overly concerned at this point. This was response today.

    IMG_1044.jpeg

  • tonkinese88
    tonkinese88 Member Posts: 13 Member
    #20

    so I had my 3 month followup for my PSA and it went up slightly over 3 months ago to 2.5 from 2.38. And my PSA PERCENTAGE was 31%. They said to get another in 6 months but not at all concerned at this point.

  • Wheel
    Wheel Member Posts: 162 Member
    #21

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