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  • positive lymph node removal during prostate removal

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    Old 05-03-2021, 06:13 PM   #16
    JD2823
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    Re: positive lymph node removal during prostate removal

    Jim, Yes, you are so right on the opposites... and though he may never get on here and ask questions himself, he is hearing all of my questions and I am sharing all of "your" answers and advice with him. He does love his urologist, he is great, but like you all said, it is time to add to the team. You have all been amazing on here! It is so good to hear that you are a 21 year survivor. That gives me a lot of hope. It sounds like you have been through it all. Thank you for sharing your experiences.

     
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    Old 05-03-2021, 06:15 PM   #17
    JD2823
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    Re: positive lymph node removal during prostate removal

    I did look up bone scan: NMBone Scan, it does have RADIOPHARMACEUTICAL: 28 millicuries technetium, so I think you are right about the old war horse. Great to know what kind of scan to ask for now.
    The MRI with and without contrast with 3D processing
    Both were on 3/12/21

     
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    Old 05-03-2021, 06:31 PM   #18
    JD2823
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    Re: positive lymph node removal during prostate removal

    I'm anxious to get some new, more advanced scans to make sure it has not moved outside pelvic area. So you are saying if there is only pelvic lymph node involvement that it is still just locally advanced and not metastatic?

     
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    Old 05-03-2021, 07:23 PM   #19
    DjinTonic
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    Re: positive lymph node removal during prostate removal

    Quote:
    Originally Posted by JD2823 View Post
    I'm anxious to get some new, more advanced scans to make sure it has not moved outside pelvic area. So you are saying if there is only pelvic lymph node involvement that it is still just locally advanced and not metastatic?
    Locally advanced means the cancer has spread outside the prostate, but is still thought to all be located within the pelvis. This can be (1) contiguous, but non-metastatic spread, e.g., through the prostate capsule, into the neck of the bladder, into one or both seminal vesicles and/or (2) metastatic spread into pelvic lymph nodes. Radiation therapy in these cases (whether done as the primary treatment or as post-prostatectomy treatment) is usually done with what is termed curative intent. In other words, some men will not encounter a recurrence of their cancer after radiation, but others will.

    It's a good idea to keep a running list of written questions to ask you doctors during visits and consults. From experience I can tell you that if you trust your memory it will likely fail you. It's very easy for a question to prompt a longer discussion with the doc, after which you'll leave only to remember you had other questions. As you get answers and concepts become clear (which they will), you will have new questions. Write them down.

    Djin
    __________________
    69 yr at Dx, BPH x 20 yr, 9 (!) neg. Bx, PCA3-
    7-05-13 TURP for BPH (90→30 g) path neg. for PCa, then 6-mo. checks
    6-06-17 Nodule on R + PSA rise on finasteride: 3.6→4.3
    6-28-17 Bx #10: 2/14 cores: G10 (5+5) 50% RB, G9 (4+5) 3% RLM
    Nodule negative for PCa. Bone scan, CTs, X-rays: neg.
    8-7-17 Open RP, negative frozen sections, Duke Regional Hosp.
    SM EPE BNI LVI SVI LNI(5L, 11R): negative, PNI+, nerves spared
    pT2c pN0 pMX, G9 (4+5) 5% of prostate (4.5x5x4 cm, 64 g)
    Dry; ED OK with sildenafil
    Decipher 0.37 (Low Risk), uPSA: 0.010 (3 mo.)...0.020 (3 yr. 7 mo.)

     
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    Old 05-04-2021, 06:24 AM   #20
    JD2823
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    Re: positive lymph node removal during prostate removal

    Terry, My as far as prostate history, my husband went to his pcp five years ago to discuss erectile issues that had been going on probably two years prior to that. He tried several medications but none helped. He has never had any bladder issues. There was a rise in psa a few years ago that they were watching, but it went back down and he was not sent to a specialist. Last summer his psa rose to 12, that is when he was referred to a urologist. Dr. did a digital rectal exam and said everything felt normal, but because psa was high, he decided to go ahead and schedule a biopsy. He had the biopsy February 10th. That is when we found out that 12/12 cores were positive. Then we went on for MRI/ Bone Scan which I discussed above.
    We are in Arkansas (50 miles from Little Rock, two hours from Memphis)
    We are both teachers currently working. I can't wrap my head around treatments in another state, we just can't afford something like that. We do have insurance, but I have no idea what they will pay for and what they won't. I'm sure out of state/out of network??
    We chose surgery because that is what the urologist said he would do if it were him and he was the only doctor involved with his care.
    His overall health... he has type II diabetes and has had a very hard time controlling his sugar the past two years. He has complained a lot of fatigue and tired legs for the past year. Other than that he is in good health. I think this answered best that I could with information that I have so far. We are still waiting on post op pathology.

     
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    Old 05-04-2021, 07:51 AM   #21
    IADT3since2000
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    Re: positive lymph node removal during prostate removal

    Hi again JD,

    Here are a few thoughts prompted by your reply to Terry about your husband's history.

    Quote:
    Originally Posted by JD2823 View Post
    ...
    We are in Arkansas (50 miles from Little Rock, two hours from Memphis)
    We are both teachers currently working. I can't wrap my head around treatments in another state, we just can't afford something like that. We do have insurance, but I have no idea what they will pay for and what they won't. I'm sure out of state/out of network??
    One source that may be able to provide information on good local doctors or leads to local support groups is the Arkansas Prostate Cancer Coalition. You can find contact information for it by going to the site for the National Alliance of State Prostate Cancer Coalitions at https://naspcc.org/index.php/state-coalitions . My recollection from one annual NASPCC meeting I attended is that it was quite active. They may also be able to advise on insurance aspects. Your husband's case is challenging of course, and you may be able to negotiate a waiver to get out of state care, if that would be better than care available in-state. Nearby powerhouses for prostate cancer are MD Anderson in Houston and Vanderbilt University, with MD Anderson being especially prominent.

    Here is something you can do on your own to explore state/local resources: go to www.pubmed.gov and search for something like - prostate cancer AND Arkansas . I just did that and got a list of 51 papers. You can then click on the blue hypertext to get the abstracts that most papers have, and then click on the + sign for author affiliations and look for Arkansas institutions. That will facilitate contacts and acquiring leads. To focus the search more, try something like - prostate cancer AND Gleason AND Arkansas . When I did that I narrowed the list to just nine articles. The first author listed is typically the quarterback or director for the study, and the last author is typically the senior member of the team, sort of like the producer, so such authors with an Arkansas base would likely be more helpful.

    Quote:
    Originally Posted by JD2823 View Post
    We chose surgery because that is what the urologist said he would do if it were him and he was the only doctor involved with his care.
    That's typical, kind of like the Ford salesman telling you that a Ford would best serve you, but that's the reality the vast majority of us prostate cancer patients face. Urologists, for better and for worse, are the gate keepers for prostate cancer. They aren't out to deceive us; most honestly believe they are the best doctors to take care of us, and often their product, surgery, is a reasonable option.

    Quote:
    Originally Posted by JD2823 View Post
    His overall health... he has type II diabetes and has had a very hard time controlling his sugar the past two years. He has complained a lot of fatigue and tired legs for the past year.
    This is really important. Is your husband taking metformin for his diabetes? There has been exciting research suggesting that metformin, the old mainstay, dirt cheap drug for diabetes, is quite active in helping to counter prostate cancer, not just clinical evidence but also research showing why metformin is likely helpful, the "mechanisms" of actions. Research has also shown that other diabetes medications do not have this favorable effect. Moreover, research indicates that metformin counters some of the side effects, especially "metabolic syndrome", including controlling blood sugar, faced by men on ADT (androgen deprivation therapy) for prostate cancer. Here are links to two of many papers that are particularly encouraging: https://pubmed.ncbi.nlm.nih.gov/21933330/ , and https://pubmed.ncbi.nlm.nih.gov/23287698/ . The latter link has a further link to free access to the complete paper with its highly encouraging graphs. You can view other research by going to PubMed and searching for - prostate cancer AND metformin ; I just did that and got a list of 345 papers, virtually all published after 2007, which indicates this is a very active, hot area for research. At least one clinical trial is now underway (an arm of the STAMPEDE trial in the UK) to test whether metformin does really work against prostate cancer the way we think it works. Now retired eminent prostate cancer expert Dr. Charles "Snuffy" Myers, MD, did a wonderful presentation focused on metformin at the 2016 Conference on Prostate Cancer in the annual series held in Los Angeles. An inexpensive DVD set that contains that talk is available at https://secure.pcri.org/np/clients/pcri/giftstore.jsp#welcome .

    Quote:
    Originally Posted by JD2823 View Post
    Other than that he is in good health. I think this answered best that I could with information that I have so far. We are still waiting on post op pathology.
    Be sure to get copies of all test results and reports. Even if you don't understand all they contain, other doctors you see will appreciate having them.

    Good luck!

    Ö.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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    Old 05-04-2021, 12:23 PM   #22
    Terry G
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    Re: positive lymph node removal during prostate removal

    JD, The additional information is already proving very helpful. Early detection is key to a quick resolution to most any cancer and especially prostate cancer. It frustrates me to find men that are not detected earlier.

    Reading through the comments I see youíre getting excellent information and advice. Even though my diagnosis was far simpler than your husbandís I found out with the advice of forumís like this one that the best treatment is often at a center of excellence. Although it was a little effort on our part getting out of network to seek treatment it was very much worth it. I believe the very best can make a difference and MD Anderson is among the very best. We treated our travel like an adventure or mini vacation seeking out new restaurants etc. Also, all of our followup has been by virtual visit and very convenient. After 50 years with our original insurance we changed to a company that offers Cleveland Clinic in network just in case we had a new challenge face us. Iím glad youíre getting such good advice here and wishing your husband and yourself the very best.
    __________________
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    11/13 1.95; 9/15 3.28; 10/16 5.94
    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
    Treated 6/17 SBRT @ Cleveland Clinic by Dr. Tendulkar
    Reduced ejaculate only side effect; everything works
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    Old 06-14-2021, 10:59 AM   #23
    JD2823
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    Re: positive lymph node removal during prostate removal

    Just want to tell you thank you again for helping us understand so much of the unknown. I read the book you suggested and it is excellent. We now have had an appt. with radiology oncologist. I understand now that the waiting is to get the accurate psa 6 weeks post op and that will tell if there is any cancer left in his body? I think if it is above three then insurance will pay for more advanced scans. He goes Thursday for six week post op. I guess they will do the psa test and start hormone therapy then. I was reading about all the different kinds. is one better than another? The surgeon wants him to wait twelve weeks to start radiation. He is still dealing with incontinence so I understand why we are waiting now. Hoping for complete recovery for sure! I know it is such a pain to pee when I sneeze, so I certainly sympathize with someone dealing with it all the time.

     
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    Old 06-14-2021, 11:13 AM   #24
    JD2823
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    Re: positive lymph node removal during prostate removal

    Jim, sorry I haven't been on here in awhile so just now seeing this. He has been on metformin for several years. Hopefully it has been helping... encouraging news to hear. I think I also read that in the book. I will research these links and see what I can find. Thanks again for the info.

     
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