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  • Who to consult with for long term monitoring?

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    Old 04-09-2021, 03:27 PM   #1
    Hiker2020
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    Who to consult with for long term monitoring?

    I have my 6-month post radiation coming up with my radiation oncologist and want to figure out who to use for monitoring in the coming years.

    I can stay with my radiation oncologist but I think she is so focused on the technical aspects of radiation treatment, which is great while undergoing treatment, that she might not consider the bigger picture of overall health.

    I could go back to my urologist who was excellent in monitoring, biopsies, determining treatment, and getting me ready for radiation treatment (markers and spacer). I am not sure what he would do besides monitor my PSA.

    I could also rely on my primary are doc if it is just PSA monitoring.

    Lastly I could work with a medical oncologist.

    I am looking for the group's experience in long term monitoring and who to best provide it.

    Thanks!
    __________________
    PSA results: 9/16-12.73;11/16-13.26; 7/17-14.97; 1/18-14.08; 4/18-13.94; 7/18-17.61; 10/18-16.29; 2/19-17.09; 4/19-17.84; 6/19-17.81; 10/19-16.24; 1/20-23.14;3/20-19.41; 5/20-17.66; 7/20-20.86; 12/2-0.1
    Biopsy results: 10/17-Gleason 3+3=6- Group 1; 11/18-Gleason 3+3=6- Group 1; 11/19-Gleason 3+3=6- Group 1 Increases in PSA even with no change in biopsy results indicated the need to begin treatment. Decided on IMRT.
    Lupron injection #1: 7/20; Markers and spacer placed 8/20; Lupron injection #2 10/20
    Radiation treatment began 9/15 and ended 11/06: 39 sessions at 200cGY per session
    Side effects of radiation general fatigue and painful frequent urination treated successfully with Flomax. Stopped using Flomax after 2 months due to it causing a severe dry cough. A cough is a listed side effect. Switched to saw palmetto with no decrease in effectiveness. All in all not a bad marathon to run.

     
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    Old 04-09-2021, 03:32 PM   #2
    SubDenis
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    Re: Who to consult with for long term monitoring?

    I have my PC doc order blood work. I see my RO every 6 months. Denis

     
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    Old 04-10-2021, 08:13 AM   #3
    Terry G
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    Re: Who to consult with for long term monitoring?

    Same as Denis...PC using the same lab every 6 mo. and a virtual followup with either my RO or his PA. Using the same lab could be important.
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    TRUS 1/17
    Bx: Three of twelve cores adenocarcinoma Gleason 6 (3+3) all on left side, no pni.
    DOB 7/21/47; good health; age 69 @ Dx
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    Old 04-11-2021, 05:17 AM   #4
    Prostatefree
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    Re: Who to consult with for long term monitoring?

    Stick with your RO. Don't over think this. You will be responsible for meeting your testing schedule.

     
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    Old 04-11-2021, 11:17 AM   #5
    IADT3since2000
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    Re: Who to consult with for long term monitoring?

    Hi Hiker,

    I replied a couple of days ago but fear it may have been on the wrong thread.

    Basically, in your circumstances, it is probably a coin flip scenario. I generally prefer medical oncologists because long-term follow-up is their stock-in-trade, they are the experts in the drugs that often will be used for a patient with a significant recurrence, and they often have a pretty good understanding of side effects of various prostate cancer treatments because they are the docs we typically go to when we have recurrences rather than the doc who did the treatment (therefore making them less experienced with follow-up care if that is needed). For you, your case is favorable enough that any diligent doctor will probably do a good job. If monitoring with a PCP or RO turns up a problem, that's the time to find a good "medical oncologist."

    ….Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    21 years as a survivor. Doing well. Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
    Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
    Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA remarkably low and stable at <0.01; apparently cured (Current PSA as of 12/2/2020). (Current T 93 12/2/2020.) Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs. Barely noticeable side effects from radiation; continuing low T, likely do to long use of ADT, but good energy and adequate strength. I have a lot of School of Hard Knocks knowledge, and have followed research, which has made me an empowered and savvy patient, but I have had no enrolled medical education. What I experienced is not a guarantee for all but shows what is possible.

     
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