Husband was misdiagnosed

dp60544
dp60544 Member Posts: 12 Member
edited June 3 in Prostate Cancer #1

My husband is 53, urologist diagnosed him in January with bph and borderline low testosterone. Started him on testosterone injections every two weeks until May when she said he needed to stop because he could have prostate cancer, and that the testosterone will fuel the cancer. she wanted to do a biopsy immediately. We were stunned. She had been doing blood work through out and said psa was a little elevated but that all was good. We had no idea what psa was, I now know we should have. His first psa test she did on Dec. 28th was 4.8, Feb.8th, 5.1, May 3rd 6.5, she also did an isopsa in May which was 23.6. He had also went to his regular doctor on May 3rd for his yearly blood work and his psa there was 7.3 so two different results on the same day. The urologist never did an Dre exam. He had his primary do one and he felt a nodule. After that I looked up his past psa tests and his first one in 2021 was 2.8, 2022,3.1 and May 2023, 3.9. We are scared that he’s had cancer for awhile now with the rise of psa and problems with urination the past five years. He has a new urologist who is sending him for a mri next week. Sorry this is so long just so confused as to why he was put on testosterone. And if someone can explain what the ISOpsa number means.

Comments

  • Clevelandguy
    Clevelandguy Member Posts: 1,180 Member
    edited June 1 #2

    Hi,

    To answer your question on an ISO PSA test vs std PSA, the ISO test measures various protein components where a std test just measures the amount of PSA in the blood. Most psa tests look for a trend to see if the PSA is increasing(a sign of possible cancer). A biopsy will detect cancer and also grade it for it’s aggressiveness. Only a biopsy can determine if you have cancer where MRIs and PET scans can pinpoint suspected areas that might contain cancerous growths. BPH can also elevate PSA numbers as does having sex or riding a bicycle before the PSA test. The MRI data can be used to guide the doctor to sample the suspicious areas with greater accuracy. I would think an MRI guided biopsy would be in your husband’s future to determine if he has cancer. Adding extra testosterone I feel is not a good thing since Prostate cancer does feed off of testosterone. One method of slowing down the cancer is to starve it of testosterone called ADT, Androgen deprivation therapy.

    Dave 3+4

  • dp60544
    dp60544 Member Posts: 12 Member

    Thank you for all the information and explaining things. Hope fully we have found a better urologist than the first one he had. I still can’t believe she put him on testosterone with his psa numbers.

  • Steve1961
    Steve1961 Member Posts: 618 Member

    you are on the rifht track for sure i were the same boat as you 13 years back i had a horrible urologist then I decided to go to a major university ..Stanford ….first things first get MRI if you need a biopsy, I would find a urologist just done thousands of them make sure they do an MRI guided biopsy..dont panic …

  • acssjm
    acssjm Member Posts: 5 Member

    Testosterone supplementation is NOT a treatment for bph (potentially worsen it). A urologist that did not perform DRE for patients with prostate issues? These are all red flags questioning his/her credentials. Agree with others about multiparametric MRI and prostate biopsy. Your husband is now on the right track.

    Your experience makes me wonder what doctor review websites are used these days to find and share positive and negative experiences.

  • centralPA
    centralPA Member Posts: 322 Member

    Lots and lots of people have BPH but no cancer or cancer but no BPH so I wouldn’t worry too much about the BPH being a sign of cancer.

    I am not surprised by the big difference in PSA values taken on the same day. I had two taken the same week and they are different from each other by 20%. It’s a noisy measurement.

    The MRI will provide a ton of information. It will identify the size of the prostate, which will allow you to calculate prostate density. It will also potentially identify any lesions, which might suggest prostate cancer.

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member

    I agree with the opinions of above survivors. A biopsy will verify if cancer exists.

    I wonder what was his testosterone histology. In any case, the T shots would not raise or cause or alter the diagnosis for cancer in such a short time. Surely it could influence the levels of the PSA in influencing the activity of the prostatic cells (benign and cancerous).

    Let's wait for the results of those exams. For the moment your husband hasn't been diagnosed with PCa.

    Good luck in his journey.

  • dp60544
    dp60544 Member Posts: 12 Member

    Thank you, I’m trying not to panic but it’s hard.

  • dp60544
    dp60544 Member Posts: 12 Member

    we are now not even sure if he has Bph that’s what the urologist told him he had without doing any testing for it. Just went off of what my husband told her were his symptoms. All she was really interested in was prescribing him the testosterone.

  • dp60544
    dp60544 Member Posts: 12 Member

    Thank you, I have to just try and calm down a little. His total testosterone level on his first visit with her was 419.5 which she said was borderline, it went up to 991. His new urologist said that he never should’ve been put on testosterone treatment that his level was fine not borderline.

  • dp60544
    dp60544 Member Posts: 12 Member

    Thank you for explaining about the psa, It was confusing to my with the two different results.

  • ProfWagstaff
    ProfWagstaff Member Posts: 105 Member

    I'm a little surprised there was no DRE for a man over 50 especially from a urologist. Mine always did one when I was practically still in the parking lot. Okay, maybe a slight exaggeration. The best advice I got on this board when I was first diagnosed was to not jump the gun. As Vascodagama said, he has not been diagnosed yet. Tough not to panic but also remember that his psa, while elevated, is still under 10 so even if he is eventually diagnosed, you will have a choice of many different effective treatments. If and when that day comes, everyone on this board has always been willing to share their past treatment(s) to help you select.

  • dp60544
    dp60544 Member Posts: 12 Member

    she asked him when his last Dre was, he told her 5 years ago and she just said ok. We now know that she should’ve done one. Thanks for all the information, it makes me feel a little better. MRI is Thursday.

  • Old Salt
    Old Salt Member Posts: 1,505 Member

    I was going to ask about the reason for the T supplementation, but you have explained it. Actually, giving T to a man with borderline T (420) is almost malpractice IMHO.

    Moreover, T levels vary during the day and from day to day. There should have been more tests prior to prescribing such a powerful drug.

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member

    Hi again,

    His new urologist is correct. The 419.5 ng/dL level of testosterone is absolutely normal.

    And that makes me to inquire why did your husband to apply for an urological consultation initially. What were the symptoms that took him to the urologist and why such testosterone test was requested.

    Has your husband experienced a lack on libido? Feeling constant fatigue or falling into depression showing lack of interest in daily routines?

    It is hard to understand that the testosterone test was requested to check for BPH. One would expect a doctor request for a image study to check the size of the prostate gland, or a ecography of the bladder to measure the holding capacity of urine, or even, the dihydrotestosterone that can be a cause for an enlarged prostate gland.

    Typically, constant increases of the PSA along the time (even in small amounts) relate to prostate cancer. A graphical representation of the PSA showing ups and dows like the teeths of a saw usually relates to BPH issues.

    Well, I would suggest your husband to request the radiologist for providing in his report the size of the gland. Even the wording "enlarged" would satisfy for the investigation on a BPH case.

    Best wishes

    VG

  • dp60544
    dp60544 Member Posts: 12 Member

    We feel the same way about the testosterone now that we actually did the research on it. There really wasn’t hardly any testing done.

  • dp60544
    dp60544 Member Posts: 12 Member

    He went to that urologist to check his testosterone levels cause he was tired all the time and low libido also about urinating a lot at night and weak stream. The only testing she did was blood work. Put him on Cialis for the Bph , which we now are not even sure that he has. And Arimidex cause he was producing too much estrogen from the testosterone injections.

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member

    Well, somehow I think that now I understand your story.

    Your husband requested the check up of the testosterone levels because he was tired all the time and was experiencing low libido.

    The urologist recommended Cialis because it improves his libido (treats erectile dysfunction), and it is known to help in issues/symptoms of benign prostatic hyperplasia (BPH). 

    Probably, she (the urologist) included in the check up (blood analysis) apart from the PSA and Testosterone, a test for estrogens, which, according to what you say above, "she said he was producing to much estrogen".

    That took her in recommending Arimidex, an antiestrogenic medication which she tried to balance with shots of testosterone.

    Estrogens in males plays a role during the prostatic cells life-cycle and some times is recommended in prostate cancer hormonal treatments.

    Let's wait for the MRI results, particularly the biopsy, if any.

    Best wishes

    VGama