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Cancer: Prostate Message Board

  • Just diagnosed

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    Old 04-11-2019, 08:43 PM   #1
    PCaStudent
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    Just diagnosed

    My husband 75, has joined the club and has just been diagnosed with Prostate Cancer. Twelve cores, eleven positive for cancer, Gleason 8. Yeah, not good. The treatment will be Lupron, Casodex, bone scan, CT scan and radiation.

    He has already started the Casodex a couple of days ago. The Lupron shot is scheduled in three weeks. I think that is way too long to wait to start the Lupron. I know the Casodex is to be started 5-7 days before the Lupron to help with the testosterone flare from the Lupron.

    I called and expedited the authorization for the Lupron and it has been approved. The authorization for the scans and radiologist will be ready shortly but he doesn't have appointments for those yet, probably in a week.

    I am going to insist he gets his Lupron shot within the next few days and not wait the three weeks. Unless there is a reason not to.

    My question is this. If his bone and CT scans are done right after he gets his Lupron shot will the testosterone flare from the Lupron have negative effect on the scans? Can he get the shot and still have the scans within days of each other?

    If anyone can answer this I would appreciate it. I don't want to insist on something that is different from what the Dr set up if I am incorrect in thinking he needs that Lupron now. It is scaring me for him to wait three weeks for it. I will be calling the Doctor's office in the morning to request the Lupron shot be given to my husband now, not in three weeks and I would like to know if it will have any effect on the scans before I talk to the dr.

     
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    Old 04-12-2019, 09:01 AM   #2
    PCaStudent
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    Re: Just diagnosed

    I forgot to add to my post that his PSA is now 25.5
    I am still in gut punch mode and my thinking is very scattered.

     
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    Old 04-12-2019, 11:40 AM   #3
    IADT3since2000
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    Re: Just diagnosed

    Hi again PCaStudent, and welcome back to the Board! (Of course you did not want to have to visit again, but hopefully we can help.)

    I looked up your husband’s old situation way back in 2011. One very important point is that there has been great progress since then. That was about the time that a slew of new drugs for prostate cancer began to be approved, some old drugs were finding new purposes, radiation and supportive imaging had nearly completed great improvement, and oncologists were beginning to learn how to put these advances to work.

    I understand your concern about getting the Lupron fast. I had the same concern back in 1999 when I was diagnosed. We had a vacation planned, but I got my first shot five days before Christmas. I had not had a bone or CT scan yet, but the doctor arranged to have them done the afternoon after I got my shot. That timing was important, as Lupron can lower PSA pretty rapidly, also knocking back the cancer, once the patient is past the Lupron flare, and imaging is more effective when there is still some cancer that is sizable. What this means for your husband is that he should get his imaging done before Lupron or within a few days afterward, before the PSA (and cancer) begins to plummet. In answer to your specific question, Lupron flare would actually make the scans more effective, just the opposite of a negative effect. However, since he has already been on Casodex for a couple of days and will have been on it for, I’m guessing, a week or more before the Lupron shot, there should be minimal or no flare effect from the Lupron. That is fine, as the “boost” that flare would provide would very likely not make much of a difference in the scan results for most patients.

    You may know that the CT scan is not all that sensitive, and the standard initial bone scan, which is based on the element technetium (Tc99), is also not nearly as sensitive as other available scans. In fact the Tc99 bone scan requires a minimum of about 10% cancer involvement at a site before it will show up. These CT and Tc99 scans are so often of no use that they are now not given to patients unless there are some challenging case characteristics, such as your husband’s Gleason 8 and PSA of 25.5. (Both my CT and Tc99 bone scan were negative despite my PSA of 113.6, my doubling time (based on much later data) of 3 to 4 months, my rock hard prostate with all cores positive, and my Gleason score of 4+3=8 confirmed by an expert.) However, one advantage in having these scan results is that they have been used in research for decades, so that track record can help reveal details about your husband’s case, even if the scans are negative. That said, there has been such great improvement that the prognostic information in those research articles has considerably less relevance for patients today.

    Here’s an issue to think about: these days; with a “high-risk” case (meaning back in the day a case with a high risk that surgery would not cure the cancer) – quite elevated PSA well above 10 and Gleason 8 – the initial CT and bone scans are kind of a gate-keeper for much more powerful scans that are now available. For instance, while the CT scan needs a tumor about the size of a pea before it will show up, the new scans can detect tumors as small as about 2-3 mm, far smaller. The punch line is that these new scans too need some PSA (reflecting a significant amount of cancer) to work well – not much, but some, and Lupron may knock the PSA down too fast for the scans to be of use in view of the time to get the CT and Tc99 scans first, interpret them, and if positive assess whether more sophisticated scans are needed and arrange for them. Some areas of California have world class facilities and experts, and this issue could be handled smoothly; however, some areas almost certainly would be less able to support good handling of this issue. Here is a quick review of some of the sophisticated scans with brief comments:

    Ga-68 (Gallium 68) PET/CT Picks up the PSMA (not PSA) molecule on cancer cells, which at least 80% of cancer patients have, and is extremely good at picking out cancer and not being confused by non-cancer influences (both highly “sensitive” and highly “specific”). It does the best of any of the scans with very low PSAs, even below 1, though, like the others, it works better when PSA is at least in the lower digits. However, while this scan has been approved for some purposes, I believe it is still in the “investigational” status for prostate cancer. In the past couple of years, my impression is that only two to three locations have offered it, though one at least is in California.

    F-18 fluciclovine (Axumin) PET/CT scan: also highly sensitive, and with the huge advantages of being fairly widely available and FDA approved. My layman’s impression is that it works better when the PSA is 2 or more, though it picks up some tumors even when the PSA is slightly below 1. I’m not sure off hand if it does bones as well as soft tissue, but I think so.

    NaF18 PET/CT for bones: highly sensitive, and also highly specific. This is available widely. I had this in 2012 and was delighted and surprised when the results were negative.

    C-11 choline PET/CT: highly sensitive and specific with an adequate level of PSA, but that necessary level of PSA is somewhat higher than for the other sophisticated scans; it is fairly good when the PSA is in the 1 to 3 range but is really good when the PSA is greater than 3 ng/mL. Due to the 20 minute half-life of the radioactive isotope used, it must be made by a cyclotron on site and therefore is available at only a few sites around the country.

    C-11 acetate PET/CT: quite good sensitivity and excellent specificity, but it too is not yet FDA approved, and it too has that 20 minute half-life, so access can be a problem. I’m not sure off-hand what PSA levels are needed for good results; I suspect it resembles the previous carbon 11 scan.


    It's possible that good doctors would consider the old type scans all that are needed prior to initial treatment. These newer scans are especially useful when there are recurrences of the cancer after treatment. That said, these scans could pick up metastases now, and that might change the approach to treatment.


    Whew! This is getting long so I’ll stop. But please come back with questions.


    Good luck to you and your husband!

     
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    Old 04-12-2019, 12:31 PM   #4
    PCaStudent
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    Re: Just diagnosed

    I have just reread my old posts from 2011 and boy I am ashamed to say I really dropped the ball with his prostate. Our doctors office burned down and we waited too long to get a new doctor. We got complacent about getting PSA numbers and now he is in big trouble.

    Thank you for that info. I am on my way out the door for his Lupron shot. I will push to get the scans quickly. I hope I haven't done damage by insisting he get the shot now and then have to wait for the scans.

    My IPA has the latest radiation equipment but I am not certain if our insurance will pay for the best. I am trying to be organized but my thinking is scattered. I have to digest the information you gave me and I have more questions but have to leave. Will be back in an hour or so and hope to talk to you then.
    Thanks, in am so grateful for your help
    Cindy

     
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    Old 04-12-2019, 03:06 PM   #5
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    Re: Just diagnosed

    I decided to delay the Lupron shot until at least Monday or a little later as we visited the office and the authorizations for the scans still hadn't been approved. In light of the information about the PSA affecting the scans and because we are at the weekend where nothing is going to get taken care of I thought it best to delay it. It will also give the Casodex more time as this is only his third day on it.

    It was still beneficial to go to the office as I talked to the gatekeeper and apologized for calling her three times this morning and assured her after the treatment was under way I won't be such a pest, but until I get all my questions answered I will be bothering them. She was wonderful and assured me she would help me expedite things. I feel she “sees” us now. The trip to the office was worth it as I feel much better now about getting through to them quickly and not being ignored. My husband and I have had 50 years of great health and few interactions with doctors so learning to navigate the medical system is daunting right now.

    My opinion on the urologist he is seeing is still undecided but I told them that I expected him to return my calls as I will have lots of questions. She assured me he would. After the Dr. told us that it was PCa and what the treatment would be (last Monday, the 8th), took about 5 minutes, I haven't talked to him again.

    He knew from our initial visit with him that I had done a lot of research in 2011 so I know a little about this. I asked for the path report on the biopsy. They gave it to me and when I got home realized it was useless. All it said was he had cancer. Well I know that! I had to call the office and insist they email me the real path report, which they did. I now realize that I am going to have to fight for full access to information.

    I am going to post more over the weekend as I have a lot of questions. My IPA here has the new linear particle accelerator and we will be seeing Dr. Kwon for the radiology consult. Doubtful the latest machine will be covered with our insurance but miracles do happen. I may be able to cash pay for an upgrade to some services (better scans, better radiation etc.) if I think it would be necessary,but will have to start researching. I am going to start digesting what you have so kindly typed up for me.

    Again, thank you Jim for everything you do for all us club members.
    Cindy

    Last edited by Administrator; 04-12-2019 at 08:14 PM.

     
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    Old 04-12-2019, 04:32 PM   #6
    PCaStudent
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    Re: Just diagnosed

    I received the authorization for the CT and Bone scan today and made the appointment. They had nothing available until May 9 and will do them on the same day. That is four weeks away… scary.

    I asked if there was any way to get it done sooner and she told me no, they are booked solid, but I could call and see if they had any cancellations. You better believe I will be calling every day hoping for a sooner spot if they have a cancellation.

    My thinking right now is to get the Lupron shot a day or two before the scans to take advantage of the testosterone flare, but will have to think about it. The Dr’s office will accommodate me on that.

    My plan of action is fluid and changes as I gather more info and learn what our insurance will provide. I know zero about that stuff. But right now time is of the essence so I am going to go with the planned CT Scan and the Bone Scan so that I can get to the consult and treatment plan with the oncology radiologist.

    I suspect it has metastasized as he has been complaining that his hip/lower back right side has been bothering him. He has never had that complaint until a month or so ago, before his biopsy. I know that the cancer usually migrates to the spine first. I haven’t mentioned it to him and hope I am just borrowing trouble. I am trying to keep him in a positive state of mind as I think that is important and trying not to worry about what might be. Just take his one step at a time.

    I have a lot of research to do.
    Cindy

    Last edited by Administrator; 04-12-2019 at 08:13 PM.

     
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    Old 05-15-2019, 10:28 AM   #7
    IADT3since2000
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    Re: Just diagnosed

    Hi Cindy,

    Any word on the scan reports yet?

     
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