PSA Bounce and 2nd Opinions

Hi all,

First, just want to thank everyone for the support throughout this process. Soon after my father was diagnosed w advanced PC (gleason 10, age 59 -now 60) he started combo hormone therapy and docetaxal. About a month ago he finished his six cycles. After his sixth, his psa was about 1.6. He just went back for his 3 month lupron shot and the psa score from that test jumped up to 6. I know it's common for it to jump a little after chemo, but how much is too much?

Also, his oncologist seems very dependent on the psa test. He still has back pain and sometimes bone pain and he thinks it may be inflammation. However, he changed his mind about him doing a pet scan after they were done with chemo. During the chemo he was complaining of back pain so he sent him to radiation but it didn't make a difference (were basing it off a few month old mri). Do you think it's reasonable to wait on a pet scan?

Thank you!

22 Replies

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  • I'm on chemo now and my Doctor wants to do a Tc99 bone scan after it's done to establish a baseline. That would be what I suggest doing but I'm not a doctor. If a bone scan has already been done, another scan would also be useful for comparison. PSA alone doesn't tell you everything, so you need more information. I'm also having some lower back pain that comes and goes on chemo. Many people report having that so it's not uncommon.

  • Thanks Greg, we were surprised that he didn't want to go ahead with it either. Trying to find a 2nd opinion that is covered by our insurance now. i think the back pain persisted even after chemo, he is a little over a month from having finished the 6th cycle (does the scare of the psa flair)

  • I would be thinking of asking, "At what PSA level (or other indications) will we need to move on to another type of treatment? And then, What are all the Options?"

    I agree with Gregg57 that a Tc99 Nuclear Medicine Bone Scan could give a new baseline of where bones are now actively remodeling.

    CT & MRI scans could detect obvious changes in mets to bones and soft tissues.

    The typical PET scans most folks are familiar with may or may not show much for low volumes or slower growing prostate cancer tissues. Some of the more advanced PET scans, often used when PSAs are at least 2.0 or higher, might show more, and help direct targeted therapy or palliation.

    The different types of PET scans in the Prostate Cancer universe are rapidly changing. Here is a link to an overview of most of the ones that are becoming available, with excellent commentary.

    pcnrv.blogspot.com/search?q...

    Charles

  • Thanks Charles. The oncologist called and said it was a big increase and he wants to discuss substituting casodex w another medication but won't tell us what the other two options are... he usually tells us but this time said he wants to talk to my father directly about side effects. Unfortunatly this has really hit hard on his spirit

  • You can find the names of drugs commonly used initially, such as Lupron, Zoladex, Firmagon, .... here:

    ustoo.org/Treatment-Options...

    Some second line drugs like Zytiga w/Prednisone, and Xtandi are here:

    ustoo.org/Treatment-Options...

    You can Google any of the above to learn more about the Prescribing Information.

    It is your father's choice of who is in the room with him when the doctor discusses things. The extra set of eyes, ears, hands, note taking, and support can be helpful. But, it is his life, with his concerns and symptoms that will help the doctor lay out ALL his options for treatment, before your father makes his informed decisions.

    Many of us here fully understand how very hard the upgrade in diagnosis can be on the spirit. It might help him to get to a local face-to-face Prostate Cancer Support Group and talk about it with men who "get it". I know such Groups have helped me.

    Here are a couple of handy links if you are in the USA.

    ustoo.org/Support-Group-Nea...

    pcri.org/supportgroups

    Charles

    Dx Nov 2013 Metastatic Prostate Cancer at Age 65.

    Numerous Bone Mets and Lymph Nodes, PSA 5,006.

    ADT Lupron + Zometa, PSA Nadir 1.0.

    Resistance after two years.

    Short rechallenge Casodex.

    Oct 2016 Provenge.

    Dec 2016 Start Xtandi, PSA 95.

    May 2017 PSA 2.6

  • Six months after my chemo trial for Stage 4, I stopped Casodex. Casodex withdrawal will cause PSA to drop for about 20%. My PSA dropped to undetectable. This was 13 years ago

    I stopped Lupron in 2010. I remain undetectable without medication.

    Keep kicking the bastard,

    Gourd Dancer

  • Wow that's incredible. Did you ever replace casodex with something else ?

  • No. I had Luoron and Chemo. Added Casodex and then took it away 7 months later. Then eventually took the Luoron away. I had mets to T3 & L2; which resolved at the completion of chemo with new bone growth.

    GD

  • I think if my husband and I were in the same situation, we would get a second opinion. Go to a completely new doctor, who hasn't seen your father before, let him do a PSA test and a scan and see what he thinks.

  • Thanks all. We scheduled an appointment with another doctor at the end of the month though some decision will probably need to be made before then. He just started all of this at the beginning of this year (combo lupron, casodex, and chemo). We thought after the chemo finished since it's just a few months into everything we'd still be in the low numbers, but there is always a surprise around the corner.

  • Absolutely not! This sounds like this doctor hasn't a clue. I'm certain the Lupron will bring his PSA down, but at what cost? I cannot imagine a radiologist working from old pictures. And, what's being radiated? "So, where does it hurt? OK tech point it here." I haven't read the other posts yet, I wanted to give my opinion before being influenced. I mean, what if it's just arthritis? I personally think this is disturbing. But, that said, seek out another Oncologist, and a radiologist for that matter. Look, I'm 58, with 7 1/2 years with St. 4, and now mets. They don't hurt one bit. Nothing hurts, except my lifetime shoulder issue.

    Best of Luck, Joe

  • Thanks Joe, yea I've read a wide range of reasons for why there could be pain so it's def. tough to tell. When we started the casodes, lupron, chemo combo (right after diagnosis) his psa dropped dramatically. A month after the last chemo cycle it jumped and I guess the doctor thinks it may be the casodex.

  • get a psa and scan agree .Changes occur -back pain is a signal there are changes -find a dr you can trust and feel secure with ..print out drugs used to treat Prostate Cancer -research them --take notes at all visits -did he finish his chemo course and have nothing for 3 months ???? not even any labs in between?? my husband tried all they suggested both chemo and radiation -his journey ended in oct 2016 at age 67.i wish you the best .my husband was diagnosed at an early age too

  • I'm very sorry to hear about your husband. It's an incredibly difficult journey and the uncertainty doesn't help much. My father finished his chemo and his next lupron was schedule about two months later. He had a psa test soon after the last cycle and it went well but a month later spiked. The plan was for him to do six cycles and continue lupron + casodex after.

  • Did you know you can ask for copy of your xrays, mri, CT scans etc with report results for free from your doctors office. I have copy of all my scans, xreys and tests since I was diagnosed in 2011. These are useful to take to you second opinion. It is a good idea to keep copy for your files. I am with you in spirit and pray your dad gets some good answers and results.

    Dennis

  • Thanks Dennis! They are both part of NYU so I think it may all be in the system.

  • I was diagnosed with stage 4 prostate cancer at 45. Hard to find somebody my age. Chemo and Luprin to start. Chemo worked about 3 months. Then PSA up to 8. 2 wks later up to 21. Sent in for bone and CT scan. It was growing again. Started casadex and 1and 1/2month later pain and PSA up to 24. Stoped casadex and just started Zytiga. I have pain from chemo still, it's been 9 months. Mainly told it just started my arthritis early. I would for sure recommend a CT scan and maybe bone scan. PSA is for sure an indicator of growth, but not all the time.

  • Thanks! How has your experience on zytiga been? The doctor said he wants to discuss two alternatives for casodex and I wonder if that's one of them. Of course the concern is the length of time it keeps working. Do you take prednisone or stopped after chemo (he stopped right after)

  • My husband's stage 4 w/extensive bone mets treatment started with Casodex, Taxotere, Lupin and Xgeva was effective. His PSA varied the next year, and when PSA at 4 he did Casodex again for several months. PSA climbed to 8 when he changed to Xtandi in instead of Casodex. After 4 months on Xtandi PSA is 0.85, his lowest yet.

    He had a CT and nuclear bone CT when diagnosed. Next week I'll ask for a bone CT to compare and a bone density scan he never had. Since chemo, his years of back issues consistent level 2 pain on a 0 to 10 scale. The dr has also asked him to think about an immunotherapy treatment. We just go 1 day at a time but it's been ok so far.

  • Thanks Cat! Did they take him off casodex for any specific reason the first time? Did the doc say the back pain is the result of chemo?

    Best of luck and thank you for sharing

  • Hi anya6. Dr said cancer cells find ways to no longer respond to treatments over time but some may recover effectiveness if used again later. I can't recall us asking but we will next week. Husband's back pain has not changed from the years before his cancer. He would never see Drs. He rarely saw chiropractors for his Sciatica (?) for any relief.

  • I'll be thinking of you throughout this process

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