sky high psa

Adice
Adice Member Posts: 27 Member
edited June 25 in Prostate Cancer #1

New diagnosis of PC. 72yo and worried. Had Biopsy 4 areas 3+3, 2 areas 3+4 but psa >30. Not much info on patients with psa > 30. difficult to stage with that number. PET scan scheduled Really nervous . Any thoughts?

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Comments

  • centralPA
    centralPA Member Posts: 341 Member

    Hi @Adice , can you post the details of your biopsy? For example, info like positive biopsy samples on both sides versus one side only, percentage that is Gleason 4, percentage of total samples that were positive…all impacts the setting of your risk. Also, did you have an MRI first? Guided biopsy?

  • Adice
    Adice Member Posts: 27 Member

    It wouldn't let me post photo. All 6 core segments had some involvement. Left from 10% to 38% all 3+3. Right 23%-74% only lower segment was 74% 3+4 .No MRI. US guided.If that helps

  • centralPA
    centralPA Member Posts: 341 Member

    So only 6 samples in the biopsy? With a PSA of 30? No MRI prior?

    I think the first thing to do is to move your care to a better site, frankly. The care you've received, based on what you said, is in no way standard of care. You would have ideally had an mpMRI first to identify potential lesions. Then a biopsy, at least 12 samples, with extra samples targeting any lesions identified from the MRI. Then you'd be ready to truly set your risk.

    How much of the 3+4 sample was categorized as 4?

  • swl1956
    swl1956 Member Posts: 131 Member

    Agree with centralPA, MRI should have been done first, then a targeted biopsy in order to begin staging your risk before you can even start making any decisions of treatments or maybe no treatments? Personally, I would seek a second opinion at a center of excellence.

  • Adice
    Adice Member Posts: 27 Member

    They did take 12 samples but those are the results of the pathology.I would prefer avoiding the MRI as I am way claustrophobic. I have no problem going to another site. This is all new for me ,not sure where the centers of excellence are. I had planned a second opinion after the PET scan but unsure where. Almost impossible to get into Mayo at Jax. Still wont let me post a photo of the report. Says I Have to be around longer. From their site to God's ears

  • centralPA
    centralPA Member Posts: 341 Member

    Ahhh, OK

    The MRI will contain some critical information, to include if it appears the cancer has crossed the boundary of the prostate, if it appears to involve seminal vesicles, suggestions about lymph node involvement, and total prostate volume. My wife is very claustrophobic too, so they essentially sedate her for MRIs. It'd be worth it.

    If you have a PET scan coming up, it will give pretty much the same info.

    The early patient resource on the NCCN site will help you determine your risk level

    https://www.nccn.org/guidelines/guidelines-detail?category=1&id=1459

  • swl1956
    swl1956 Member Posts: 131 Member

    If you're close to Mayo or University of Florida Health both are likely good places. I was surprised at how quickly I was able to get an appointment at Fox Chase in Philadelphia. I've read where some individuals travel great distances to go to places like Memorial Sloan Kettering, Mayo Clinic, John's Hopkins, Cleveland Clinic, and other top notch institutions around the world. Its just not logistically possible for me. Even traveling to Philly is a hassle, but the expertise I received there was superior compared to what my local urologist was giving me. Have you attempted to make an appointment at Mayo? I suspect already having a cancer diagnosis it may not take too long? Not meaning to scare you, but I just had a PSMA PET scan which like an MRI is also a bit confining. You'll have to work on your claustrophobia a bit in order to get the scans which are necessary for proper staging of your disease. I know it's difficult, but try to stay calm and methodical. You likely have plenty of time to gather info and make the best decision for your situation. Get the scans. Ask for a copy of the scans on disc so you can take them with you for any second opinions.

  • Adice
    Adice Member Posts: 27 Member

    • What kind of sedation does your wife get?

  • Adice
    Adice Member Posts: 27 Member
  • Adice
    Adice Member Posts: 27 Member

    Sorry for the duplicate

  • Steve1961
    Steve1961 Member Posts: 625 Member

    totally agree with Central. I had my first biopsy at 50 years old. The SOB only took five samples five and no MRI of course he said no cancer enlarge prostrate is the cause four years later PSA went to 6.2 another biopsy only took six samples this time again no cancer at age 57 PSA went to 7.2 wanna do another biopsy. This is when I said wait a minute somethings not right and sure enough this jerk was screwing me mri first and then MRI guided biopsy they take about 20 samples I wouod go somewhere else go to a major hospital or university or somebody that knows what they’re doing

  • centralPA
    centralPA Member Posts: 341 Member

    Not sure. Xanax? I promise you’re not the first person to suffering anxiety in an MRI and to ask for something to help.

  • Adice
    Adice Member Posts: 27 Member

    I don't know what kind of expertise you guys have but I appreciate you talking with me. I am having a great deal of difficulty. This came on all of a sudden just trouble peeing. Feeling well, a little more tired. Feel like this is it and getting really down.I felt that the rise in psa was just from 2 weeks of difficulty peeing and days of bouncing up and down in a plane,bus ,truck for two weeks.Now I feel like someone has turned over the hourglass. No one has to answer just chills me a little to talk. thx

  • swl1956
    swl1956 Member Posts: 131 Member

    No expertise here! Just an average fella in the same boat as others here trying to figure out how to handle my situation. I completely get your hourglass analogy. My diagnosis has definitely focused my thoughts of my mortality. The reality however, it's statistically more likely our demise will be from something other than Pca. It is slow progressing and highly treatable.

    I found https://pcri.org/ very helpful. Dr. Mark Scholz has a series of videos with great information. The below link is one that especially helped to lower my stress a bit.

    https://www.google.com/search?client=firefox-b-1-lm&q=dr.+mark+scholz+how+long+can+you+wait#fpstate=ive&vld=cid:9669309c,vid:aotF2SPzCmU,st:0

  • centralPA
    centralPA Member Posts: 341 Member

    How’s your health otherwise, @Adice ? Hanging in there at 72?

  • Adice
    Adice Member Posts: 27 Member

    Health was great until about 70.LOL.Then a broken collarbone,T2 diabetes. However feel well and not sick. Always in such great shape. That is why this is such a shock. Just going thru the initial hit and very depressed. Thank you for asking.

  • Adice
    Adice Member Posts: 27 Member

    Thank you , I will check out those sites. My main concern is that my psa is so high there is very little good information on this.I don't know when this all started as I stopped getting psa about 4 yrs ago as they were all pretty much the same for several years. Thank you for the info

  • Old Salt
    Old Salt Member Posts: 1,530 Member
    edited May 4 #19

    There's open MRI, but I have no idea if that instrument is suitable for prostate cancer detection. Also, as I recall, your head will be out in the open in a closed MRI instrument. Not saying it's a walk in the park though. I have had this procedure at least twice by now… The tranquilizer idea is good, if necessary.

    As an aside, I think you will be advised to get ADT before long (Androgen Deprivation Therapy). That should bring your PSA way down.

  • Josephg
    Josephg Member Posts: 460 Member

    I am also too claustrophobic to go into a closed tube MRI without sedation. I take 2 Valium 1/2 hour before the MRI is to begin, and I have a small towel across my eyes before I enter the tube (just in case that I inadvertently open them while in the tube). With Valium, the MRI becomes a nothing burger. I've even fall asleep while in the tube, I am so relaxed. The Valium is prescribed by my Oncologist, who typically orders PCa-related MRIs for me.