When to Get Second Opinions

JasonB176
JasonB176 Member Posts: 24 Member
edited January 25 in Prostate Cancer #1

I started a thread last week about my situation having recently got the PRADS 5 score. My urologist moved up my follow-up appointment to late this afternoon. I'm trying my best to be calm and to get the most from the visit.

I'm wondering at what point in the process it's recommended to get a second opinion. He'll almost certainly be scheduling me for a biopsy. Would it make sense to go ahead and work through him exclusively until the biopsy results are back and he gives his recommendation? Or do some patients seek second opinions or even a second biopsy from another source before this?

It's such an odd feeling to be about to cross a threshold and continue life as a cancer patient. My plan is to let him talk at first and then bring up my concerns and questions.

Thanks for any input.

Comments

  • HoosierTexan
    HoosierTexan Member Posts: 6 Member

    My opinion only. Go get the biopsy. Early detection is key

  • centralPA
    centralPA Member Posts: 209 Member

    You can get the biopsy, have your Uro's org do the pathology review, then have the pathology sent out to another institute. Do that immediately so he'll have both reviews to stare at.

    Then after you get treatment recommendations, you can get a second opinion on that too.

  • Clevelandguy
    Clevelandguy Member Posts: 950 Member

    Hi,

    As centralPA said, I would get a second opinion off of the initial biopsy. Second opinions are always a good thing with different doctors and different recommendations.

    Dave 3+4

  • swl1956
    swl1956 Member Posts: 42 Member

    My local urologist ordered an MRI after a second PSA of over 4 in a six month period. Indicated PI-RAD 4 which is when he scheduled the biopsy. Not too long after I had the biopsy results including the worst sample 4+3 GG3, I scheduled an appointment for a second opinion at Fox Chase Cancer Center. I took the MRI CD with me. Fox Chase obtained all other data they needed thru their networks. I suspect this second opinion stuff is quite common and sharing info didn't seem to be a problem. They said the imaging and fusion biopsy were of high quality and confirmed what my local urologist was telling me. Where they differed however was in how to treat it. My local urologist recommended radiation, but Fox Chase Doc was less opinionated. They offered different choices, including focal therapy which they thought I may be a good candidate. Anyhow, get the biopsy. Not a big deal. I was put under and had the image guided fusion biopsy which I believe is more accurate at getting good samples? My biopsy was done transrectal. I did struggle with diarrhea for a couple weeks afterwards due to the strong antibiotic I was prescribed prior the procedure. The Fox Chase people do it transperineal. They say it's less prone to infections that way? I don't think you need the antibiotic with that one? A friend of mine just had a transrectal done in his doctor's office while awake. He said it wasn't that bad, but I think I would pass on that if you have a choice. Sounds like you and I are starting this "journey" at about the same time. 😒 Everyone keeps telling me to take my time, but it feels urgent and is consuming my thoughts constantly. Still working, time between appointments, and trying to learn all these PCa acronyms is not helping my stress level. Anyhow, hang in there! This forum is a fantastic help. I'm amazed at how knowledgeable and articulate about PCa many on here are. 😀

  • JasonB176
    JasonB176 Member Posts: 24 Member

    Thanks guys for your thoughts. My urologist called me yesterday and confirmed that the biopsy is the next step. I was fortunate and able to get one scheduled for this coming Monday. It will be a targeted transperineal one. My follow-up with my urologist will be on 2/16/24 so that's when I'll really know more about my future course. I plan to hear what he says and then decide on a second opinion.

    A friend who had prostate cancer a few years ago told me he drove himself to and from the biopsies but maybe something has changed because I was told that I won't be able to drive and that I'll be pretty much knocked out for the procedure.

  • HoosierTexan
    HoosierTexan Member Posts: 6 Member
    edited January 25 #7

    That sounds like my experience. They will put you under and my hospital wouldn't release me without a ride home. There's always Uber (smile).

  • Oldernow
    Oldernow Member Posts: 24 Member

    Hi Jason -

    When I had my targeted transperineal biopsy at Cleveland Clinic my only sedation was nitrous oxide (laughing gas) and local injections in the perineum and around the prostate. Deep breaths of the gas put me in a very relaxed state while the doctor did his thing. I had minimal discomfort and, since the effects of the gas wear off quickly, I was able to drive home about an hour after the procedure.

    I had 4 previous biopsies with rectal access. Since I had developed a bad infection after one of those (hospitalized 10 days with sepsis) I didn't want another one. My urologist set me up with an excellent doctor at Cleveland Clinic who specializes in the fusion trans-perineal biopsies. Using the MRI images along with the live ultrasound images enabled him to sample areas that couldn't be reached in the other biopsies. He found cancer that I have since had treated with radiation and ADT (androgen deprivation therapy - Lupron). My PSA went from 20 (pre-treatment) to <.03 (considered non detectable). Hoping it stays there as I have future bloodwork done.

    Good luck as you move forward in your journey...

  • PaulCalif
    PaulCalif Member Posts: 7 Member

    I'm Paul, 68, recently diagnosed 3+4 (7) on Gleason. 5 out of 12 biopsy sites detected cancer. I had the Rectal biopsy, local anesthetic, ultra sound guided. Doctor offered the biopsy based solely on elevated PSA, 5.1. I'm now scheduled for a Pet Scan on the 20th of next month. Urologist is confident that the cancer is localized to the prostate but can't be certain, hence the Pet Scan. Since I'm getting the Pet Scan, do you guys still recommend getting a second opinion of the biopsy? I'm on Medicare, HMO, so my covered options appear to be limited to surgery or radiation. I'm leaning towards radiation but would like to hear other's thoughts and opinions. So many alternative types of treatments available today. Out of pocket for laser or ultra sound appears to be $25K plus. I can pay that but certainly don't want to unless the outcome is far superior.

  • Oldernow
    Oldernow Member Posts: 24 Member

    Hi Paul -

    I am 76 and my urologist and radiation oncologist felt I would have the best outcome with radiation along with ADT. I had a PSMA Pet scan prior to the start of radiation that showed no spread of cancer outside the prostate. I was comfortable with my doctor's recommendations and did not seek a second opinion. So far I am satisfied with the outcome of my treatments. After 28 radiation visits my PSA dropped from 20 to <.03 (considered non-detectable). The ADT (Three 6 month Lupron injections) is supposed to starve any remaining cancer by depriving it of the testosterone that feeds it. I sure hope it is working because I am due to get the last of the 3 shots in early April. I really want this part of the treatment to be over because I have had troubling side effects from the Lupron. In short, I want my manhood back.

    My Medicare advantage plan covered the majority of my treatments last year to the tune of over $250,000. I maxed out my "out of pocket" at $3,700. I took advantage of that by getting multiple physical therapy visits free of the normal $35 copay per visit. The physical therapy was needed due to weekend muscle tone from lack of testosterone causing knee, shoulder and neck issues. As I said - I really want to get past the ADT part of my treatment.

    Good luck on your journey...

  • JasonB176
    JasonB176 Member Posts: 24 Member

    It sounds like I'm better off getting the transperineal biopsy. Thanks for sharing your experience. How long was the discomfort after the biopsy? I'm hoping I'll be able to do regular activities, including cycling, not too many days later.

  • Oldernow
    Oldernow Member Posts: 24 Member

    I would give it about a week. I had minor bleeding after the biopsy and blood in my urine for a few days. Your doctor should spell out your limitations.

  • PaulCalif
    PaulCalif Member Posts: 7 Member

    Thanks for the reply! One of the reasons I chose my Advantage plan was the low maximum out of pocket. Figured I wouldn't need it, lol. If I remember correctly, it's around $1000.

    I hadn't even considered that so thank you for reminding me :-)

    Not looking forward to hormone blocking treatment, but if that's what it takes, I'm in.