Prostate cancer and no follow up

louiselisa19
louiselisa19 Member Posts: 2 Member
edited September 2022 in Prostate Cancer #1

I was diagnosed with prostate cancer and told not to worry, it is no big deal . People die with prostate cancer and never know they had it . I suppose die from something else. I was sent home with an appointment 6 months from now . No medicine, no screening orders . Just a smile and a handshake . Meanwhile I suffer from chronic diarrhea, lower back pain ( with fusion surgery., headaches . Sleeplessness , nausea and a feeling of a welcome death . I am 69 years old.

Comments

  • eonore
    eonore Member Posts: 185 Member
    #2

    I am sorry you find yourself in this predicament. Could you please give us a little more detail about your tests, and I assume your biopsy? Also, do you have anyone coordinating your overall care? It sounds like you are facing multiple medical problems. Do you have any friends or family who can assist you in making sense of this all?

    When we know a little more about the nature of your diagnosis, there are many here who can help you understand what is going on, and to ask the right questions. In the meantime, try not to feel too low, until you get everything sorted out.

    Eric

  • Rob.Ski
    Rob.Ski Member Posts: 174 Member
    #3

    If you had a biopsy and confirmed PCa, I wouldn't call it no big deal. Might not be an emergency but, 6 months is a long time for no additional information. Might want to get a second opinion on your results. When I was first told I had PCa as a result of a biopsy it was over the phone. Doc said call to schedule a follow up to go over all my options. When I called the next day to get an appointment they told me 8 weeks for the appointment. The doc did tell me on the phone it was a low grade cancer but, I had no idea what that really meant and was shocked I'd have to wait 2 months for more info. I immediately was on the hunt for second opinions and was able to get one before my first opinion. In the end the 8 weeks probably wasn't too long to wait if I knew now what I didn't know then. When I was scheduling the appointment I was talking to an administrator, not a doctor. Basically told me if 8 weeks was too long, they could refer me somewhere else. Not exactly what someone that just found out they have cancer and has little knowledge on it wants to hear.

    Anyway, this site has lots of knowledgeable folks who have been through it. It was very helpful to me in getting smarter on PCa. Post more info about your tests, PSA history, biopsy specifics.

  • ASAdvocate
    ASAdvocate Member Posts: 193 Member
    #4

    You need to obtain a copy of your biopsy pathology report from the doctor’s office. Many practices have online portals where patients can view and download their tests. With that report, your risk level can be known.

    Secondly, you need to have them clarify what their plan is regarding treating your prostate cancer. Low risk prostate cancer is usually watched now rather than treated, but there needs to be a clear plan and schedule for future tests.

    These are questions that you need to demand answers for.

  • lighterwood67
    lighterwood67 Member Posts: 395 Member
    #5

    Based on what you have said. I would think a second opinion is warranted. Best of luck on your journey.

  • louiselisa19
    louiselisa19 Member Posts: 2 Member
    #6
    https://csn.cancer.org/discussion/comment/1699615#Comment_1699615

    I am so depressed and sick with diarrhea. I had two biopsy’s . The first one was called off because I took Eloquist and it was not planned properly and I must have bled . So I had a second . They found one cancer cell and it was considered my lucky day. I have been told that a bone graft needed to be done but this office said nothing. I have friends who worked in the same chemical refineries that I worked in and they all have the bone cancer. I was a locomotive engineer and wore no protection. I have a back stimulator that does not function and cannot get it turned back on. Every Doctor I’ve spoke to says no one will touch it. The Doctor that put it in gave me an epidural and within hours I was paralyzed from the waste down . I had fusion surgery to repair my lower back and cervical spine . Four bolts in my back and a . Well that’s enough. I do not know where to turn

  • eonore
    eonore Member Posts: 185 Member
    #7

    I am terribly sorry you are going through this. Do you have a family member or friend who can help you negotiate your various medical providers, and advocate for you? If you were a member of a union, maybe they have resources that can help you. If you are willing to disclose where you live, I would be happy to research whether there are any social service agencies that can work with you. You sound overwhelmed.

    Eric

  • Clevelandguy
    Clevelandguy Member Posts: 1,206 Member
    #8

    Hi,

    Sounds like you might have a couple of medical things going on. Like others have said you need to learn more about your biopsy and determine if the cancer is contained(MRI,PET,Bone scan) and how aggressive the cancer is(Gleason score). Your diarrhea might not have anything to do with your cancer, but could be coming from some other condition,nerves,IBS,ect. A second opinion from another doctor(Urologist) might not be a bad choice. Once you figure out what is going on you can determine how to treat your medical issues.

    Dave 3+4

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