Wow you can’t trust doctors

Steve1961
Steve1961 Member Posts: 625 Member
in Prostate Cancer #1

most of you know my story ..I opted for combo radiation treatment instead of surgery ...which I regret now very much ...too many drs with too many opinions...that was my biggest mistake ...along with having a fear of surgery which didnt help ....anyway things are getting better starting to deal with it better and then BAM....punched in the gut harder than when I first found out I had PC ...I had an MRI done just to make sure all was good .....did I ever get a report ...no...I asked the 2 surgeons and radiologist how the mri looked ..anything out of the ordinary ..is it contained ..they all said it looked very good .no nodes swollen nerve bundles ok looks to be contained ...well good I said..then I asked a question of one surgeon that swayed me away from surgery ..he answered me and then said DONT forget to get your pancreas checked  periodically....WHAT WHY I asked ....because the MRI report stated I had a lesion 5 mm on the tail of my pancreas most likely IPMN. follow up mri is recommended in a year for stability ....WOWWWWWW...if I knew this I would have ran to surgery for PC ...I guesss it’s my fault I don’t know why I didn’t go and get a copy fir myself ...I thougt they were only looking at the prostate and figured they would tell me if anything looked wrong ...wow ...this IPMN looks way more serious than PC ....SOB....now I have 2 things to worry about ...,I am really a wreck right now ...I keep blaming myself for all this .... **** ...at least  with PC we have a fighting chance but pancreas ...not good at all..talk about **** luck 

Comments

  • Clevelandguy
    Clevelandguy Member Posts: 1,207 Member
    #2
    Cancer?

    Hi Steve,

    From I briefly read IPMN is a pre-cancerous cyist that could turn into cancer.  Hopefully they caught yours in time so it won’t develope into cancer. Are they really going to wait a year for another MRI?  If it was me I would want to do something a little more agressive treatment wise than wait a year?  Just my 2c worth.

    Dave 3+4

  • Steve1961
    Steve1961 Member Posts: 625 Member
    #3
    Clevelandguy said:

    Cancer?

    Hi Steve,

    From I briefly read IPMN is a pre-cancerous cyist that could turn into cancer.  Hopefully they caught yours in time so it won’t develope into cancer. Are they really going to wait a year for another MRI?  If it was me I would want to do something a little more agressive treatment wise than wait a year?  Just my 2c worth.

    Dave 3+4

    Yeah

    i just found out last week it’s been 15 months since I had the mri ...I am just sic k over this ...I’m disgusted with myself and all these so called top notch drs ....at these big **** name institutes ..Stanford UCSF ...

  • eonore
    eonore Member Posts: 185 Member
    #4
    Steve1961 said:

    Yeah

    i just found out last week it’s been 15 months since I had the mri ...I am just sic k over this ...I’m disgusted with myself and all these so called top notch drs ....at these big **** name institutes ..Stanford UCSF ...

    Ipmn

    Hey Steve,

    Sorry for this additional complication.  It is appalling that no one mentioned this to you.  I know that Johns Hopkins has a whole treatment center devoted to pancreatic cysts.  I would schedule a consult there or with a pancreatic surgeon at a high end institution to find out if this is something to worry about.  I would not continued to be followed by your present group, since you have clearly lost faith with them and need to find someone you can trust.

  • jacob45
    jacob45 Member Posts: 1
    edited April 2019 #5
    Prostat treatment or AS....

    Recently diagnosed with PC....currently watching it based on what urologist suggects from report....age 67......current readings are 7.5 psa..........1 of 12 samples found to have 5% cancer and 2 with high grade PIN.......sample is a gleason score of 6   (3+3)....Have not had any other tests recommended by urologist..just AS at this time...Is this a normal procedure for a low grade cancer?  I see other posters have other tests and second opinion done.....My report states that another Dr. at the pathology clinic looked at an concurred with biopsy report.   Would that suffice for the  second opinion?  Thanks for any info that you may give at this time.

  • Clevelandguy
    Clevelandguy Member Posts: 1,207 Member
    #6
    More tests

    Hi Jacob,

    If it was me I would want to know where the cancer is located inside my Prostate.  If it’s buried deep inside the Prostate then you have time with AS.  If it’s near the edge then in my opinion you want to keep a very close eye on it to make sure it does not leave the Prostate.  If it does then you have the chance of it spreading to other parts of your body which is not a good thing. A PET or MRI scan should tell the doctors where it is located. If your current doctors poo poo this then a second opinion with another doctor might be a good thing.

    Dave 3+4

  • lighterwood67
    lighterwood67 Member Posts: 395 Member
    #7
    Good News, Bad news

    Well, as a lot of folks told you to give youself time to heal after your prostate treatment.  Looks like you are on the mend there.  Glad to hear that.  I know that is a load off of you.  The IPMN (Intraductal papillary mucinous neoplasm (IPMN) is a type of tumor that can occur within the cells of the pancreatic duct. ... Although intraductal papillary mucinous neoplasms are benign tumors, they can progress to pancreatic cancer).  Looks like for now they want you to do Active Surveillance.  We can't do anything about the cards dealt to us as far as our bodies are oncerned.  So, when you go to see your doctor about your PSA tests, go and see the doctor for your pancreas.  Anyway, glad to hear you are on the mend with your prostate. Actively surveil the pancreas and live your life to the fullest.  Good luck you.

  • Steve1961
    Steve1961 Member Posts: 625 Member
    #8
    lighterwood67 said:

    Good News, Bad news

    Well, as a lot of folks told you to give youself time to heal after your prostate treatment.  Looks like you are on the mend there.  Glad to hear that.  I know that is a load off of you.  The IPMN (Intraductal papillary mucinous neoplasm (IPMN) is a type of tumor that can occur within the cells of the pancreatic duct. ... Although intraductal papillary mucinous neoplasms are benign tumors, they can progress to pancreatic cancer).  Looks like for now they want you to do Active Surveillance.  We can't do anything about the cards dealt to us as far as our bodies are oncerned.  So, when you go to see your doctor about your PSA tests, go and see the doctor for your pancreas.  Anyway, glad to hear you are on the mend with your prostate. Actively surveil the pancreas and live your life to the fullest.  Good luck you.

    Doctors

     As soon as I emailed the three doctors who I know saw the report the one from Stanford whom I should’ve used called me immediately. He said he saw that and said it was not an issue he said he sees it a lot at least once a week on imaging he said there’s a 99.9% chance that it’s nothing. It is on the tail not the duct. I’m getting another MRI but I already have an appointment with a specialist at UCSF I’m not gonna **** around this time

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