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  • positive lymph node removal during prostate removal

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    Old 05-01-2021, 09:47 AM   #1
    JD2823
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    positive lymph node removal during prostate removal

    My husband: age 60, psa 11.8, Cores involved 12/12 (70%), Gleason Group 5+4=9, Adenocarcinoma

    Bone Scan clear, MRI showed: Seminal vesicle invasion on one side and nerve bundle invasion.

    This week he had prostate removed and pathology came back that two lymph nodes on one side and four on other were positive. He is not scheduled to see urologist again for 4-6 weeks which is when next step will be discussed. My question... shouldn't he go see an oncologist and why are we waiting on starting the ADT, radiation or whatever next step is? I am so tired of the waiting game. I know his body needs to heal from surgery... but seems we should be on a faster timeline.

    Also, I know the ten day catheter can damage the bladder. I read that radiation can damage it even further.

    Advice would be greatly appreciated.

     
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    Old 05-02-2021, 02:13 AM   #2
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    Re: positive lymph node removal during prostate removal

    The catheter is the least of your worries. I have not heard of it causing damage. It is giving the bladder a rest and a scaffold for the urethra to bladder connection to heal. The bladder muscle may get lazy during it's 10 day respite, but it will come back once the catheter is removed.

     
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    Old 05-02-2021, 04:56 AM   #3
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    Re: positive lymph node removal during prostate removal

    I am a bit surprised with the imaging results your husband had surgery. But now that he has you may want to get more imaging or investigate a clinical trial before proceeding. If he goes on ADT immediately he can’t get an accurate PET scan.

     
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    Old 05-02-2021, 08:44 AM   #4
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    Re: positive lymph node removal during prostate removal

    Quote:
    Originally Posted by JD2823 View Post
    My husband: age 60, psa 11.8, Cores involved 12/12 (70%), Gleason Group 5+4=9, Adenocarcinoma

    Bone Scan clear, MRI showed: Seminal vesicle invasion on one side and nerve bundle invasion.

    This week he had prostate removed and pathology came back that two lymph nodes on one side and four on other were positive. He is not scheduled to see urologist again for 4-6 weeks which is when next step will be discussed. My question... shouldn't he go see an oncologist and why are we waiting on starting the ADT, radiation or whatever next step is? I am so tired of the waiting game. I know his body needs to heal from surgery... but seems we should be on a faster timeline.
    ...
    Hi JD2823,

    Yes, a faster timeline would be wise, if possible.

    It's fine to keep the urologist as part of the team, but it would be wise to add now, as you are already thinking, either a medical oncologist (experts in drugs and generally with the least treatment bias coupled with general good, research based overviews of all approaches), a radiation oncologist (as radiation is likely in your husband's future), or both, to your husband's team. Urologists are the folks to go to for surgery, but my impression after 21 years of paying attention to this disease is that the vast majority of urologists (not all) are not in the best position to deal with side effects (unless they specialize in that), advanced cases like your husband's, or both.

    If you have good leads to an oncologist and/or radiation oncologist who specialize in (of have a lot of experience with) prostate cancer, you and your husband could make the contact directly. You might want to "interview"/research several. Do you need leads? Alternately, if you trust your urologists judgement, you could ask him or her for the names of oncologists and radiation oncologists in whom they have confidence. That's what I did back in early 2020 when it was becoming clear to both me and my urologist team that I needed a different kind of expertise than what they had to offer. They referred me to a local oncologist with whom I was able to work very well for many years until his retirement, with complementary important strategic support from a world-class expert oncologist specializing in prostate cancer. Of course, my radiation was done by a radiation oncologist. If it were me, and if both types of oncologists were available currently, I would see the medical oncologist first and then the radiation oncologist. You could see a medical oncologist first and get his or her recommendation for a radiation oncologist.

    ADT is fine early before the body heals from surgery. However, as already suggested, ADT will knock the cancer back quickly but not cure it, thereby lowering the PSA that reflects the cancer, and today's powerful imaging technology for metastasis detection needs a certain, minimal amount of cancer (reflected in PSA) in order to have a strong enough signal to be observed by the radiologist. As you may know, the technetium standard bone scan is only sensitive enough to pick up fairly good sized metastases; the new scans are far superior, and will also do a much better job of picking up very small metastases than the CT scan. A medical oncologist with appropriate experience in prostate cancer would be very well positioned to manage the timing of scans and ADT.

    A great book for orienting patients and loved ones who are dealing with challenging cases is "The Key to Prostate Cancer," by Dr. Mark Scholz, MD, an eminent medical oncologist who specializes in prostate cancer, plus 29 others, published in 2018 and still quite current. A peculiarity of the book is that it refers to ADT as TIP. (I can explain, but it's only of academic significance.) The book is divided into color-coded sections for increasing levels of challenge in cases, from mild to the most serious, which means you can focus on the key sections and common sections and skip the rest. Your husband's key sections would be those for Indigo (high-risk) and Azure (recurring), with Royal (metastatic, which is not yet documented for your husband, the lymph nodes not counting).

    I'm sorry you both are having to go through this, but there have been numerous advances since about 2010 for patient with challenging cases, and there is no doubt that your husband will benefit from these advances. By the way, one of the leading imaging experts practices in Phoenix, but the technology he was using a few years ago has already been overtaken, more or less, by an even more potent technology. Also, Arizona has some strong education and support groups as well as what I believe is still a strong state-wide prostate cancer coalition.

    Good luck!

    ….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 05-02-2021, 08:56 AM   #5
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    Re: positive lymph node removal during prostate removal

    You husband has metastatic PSA, as documented by the post-op path report. Please obtain and post the complete details of this report. It is more important than the MRI results now and any other doc with whom you consult will need it.

    I assume the G9 Gleason score was confirmed by the path report (?) It is likely your husband will be told that radiation and/or ADT are necessary to complete his primary cancer treatment. A waiting time before beginning adjuvant treatment gives the body time for improvement in continence.

    Given the large number of positive nodes, a radiation oncologist may suggest pelvic-wide RT. An advanced scan (such as gallium-PET or Axumin) can help locate remaining lesions, which are sources of PSA. It can help establish whether the cancer is locally advanced (limited to the pelvis) or more widespread. A post-op ultrasensitive PSA level at 4 week (minimum) can determine whether his PSA is now high enough for one of these advanced, more sensitive scans.

    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 05-02-2021, 05:28 PM   #6
    JD2823
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    Re: positive lymph node removal during prostate removal

    Thank you for the reply. I am confused about doctors not recommending surgery with his type prognosis?? His urologist said best to get out as much of the cancer as possible. He said lymph nodes were clear on MRI prior surgery, but when he took lymph nodes out during surgery and sent them off, they came back Positive. Why do doctors choose not to do surgery? My assumption is just not to put them through it when they know more treatment will be necessary after?
    So there is no reason for him to wait on ADT ... correct?

    The plan was for him to start a clinical trial which included ADT six weeks after surgery, but he will not be a candidate if psa is above 2 which it probably will be. We won't know that four another month.

    I am an anxious, jump in and get the ball rolling kind of person, and he is a sit and wait to process kind of guy. He wants to just wait until his surgical follow up appt to see what urologist wants to do. I don't think he understands the seriousness of his condition.

     
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    Old 05-02-2021, 05:47 PM   #7
    JD2823
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    Re: positive lymph node removal during prostate removal

    Jim, Thanks so much for taking the time to give me so much information. We do have a medical oncologist in mind. He does not specialize in prostate cancer, but he treated my husband's mom who had lung cancer. So you are saying the reason to wait on treatment is so that if there is a metastases it will be more likely to show up on scans? That makes sense and is something I never thought about.
    How do I know if he had a standard bone scan or one of the newer ones? Is there a specific name for the higher tech bone scan?
    Thanks for the book advice, I will definitely order it tonight. I feel like we have been thrown into a foreign world. Maybe that will help. You certainly have, thanks so much for the info and avice.

     
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    Old 05-02-2021, 06:02 PM   #8
    JD2823
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    Re: positive lymph node removal during prostate removal

    Thank you for taking the time to reply. I am understanding the wait time now. The Gleason 9 was the biopsy report. We haven't seen the post op report yet. The doctor just called with results. We are going to call tomorrow and ask him to send us the report and send it to oncologist. You mentioned the pelvic wide scan/ pet.
    Shouldn't they do a full body scan and not just another pelvic? I'm assuming they only did MRI of pelvic area and then full bone scan because if it has spread, it is usually just to pelvic area and then to bones? So if not in bones, it shouldn't be elsewhere in the body??

     
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    Old 05-02-2021, 07:25 PM   #9
    DjinTonic
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    Re: positive lymph node removal during prostate removal

    Quote:
    Originally Posted by JD2823 View Post
    Thank you for taking the time to reply. I am understanding the wait time now. The Gleason 9 was the biopsy report. We haven't seen the post op report yet. The doctor just called with results. We are going to call tomorrow and ask him to send us the report and send it to oncologist. You mentioned the pelvic wide scan/ pet.
    Shouldn't they do a full body scan and not just another pelvic? I'm assuming they only did MRI of pelvic area and then full bone scan because if it has spread, it is usually just to pelvic area and then to bones? So if not in bones, it shouldn't be elsewhere in the body??
    I think you are confusing two separate issues, which I may not have explained clearly. Yes, the advanced scans are full-body. They are also more sensitive than the standard bone scans done before treatment. In addition, they pick up lesions in all soft tissue/organs. However, they do require a certain minimum amout of residual PSA after surgery. By about 4 weeks post-op the body has boken down and eliminated the remaining PSA secreted by the removed prostate. So an ultrasensitive PSA test after that will tell you if an advanced scan is worthwhile. Imaging can pick up hot spots (usually cancer mets) through the body, including the pelvis, provided the PSA is high ebough.

    The separate, narrow vs. wide issue concerns the size of the radiation field used to treat the pelvis for metastases. For men with positive pelvic nodes and other post-op adverse findings, it often makes sense to irradiate the pelvis. For high-risk men with adverse RP findings, pelvic radiation is often advised even without advanced scanning, because RT will treat local spread to tissues adjacent to the prostate in addition to mets in pelvic nodes.

    I think your husbands doc will cover these issues, which all deal with what's called adjuvant treament, at his next visit. It always seems like there is an information overload at first, but I guarantee things will become clearer to you both in a short time.

    We are here for you.

    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 05-02-2021, 09:47 PM   #10
    Eonore
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    Re: positive lymph node removal during prostate removal

    Dear JD,

    I am sorry to hear of your husband’s complicated case. I do not know where you are treating, and where you are located, but if you are not now at a cancer center of excellence, it’s time to have your case reviewed at a top notch institution. In addition, if the medical oncoogist you are considering does not specialize in prostate cancer, find one who does.

    Eric

     
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    Old 05-03-2021, 07:57 AM   #11
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    Re: positive lymph node removal during prostate removal

    To Be Metastatic, Or Not To Be Metastatic, That Is The Question


    Good morning JD283,


    With a nod to Hamlet’s famous puzzlement, we prostate cancer patients now face the issue of what does metastatic mean, and this is something you and your husband need to understand because doctors’ opinions and decisions about metastasis for prostate cancer vary depending on what metastatic means. It’s not overly complicated, but not simple and straightforward either.


    You wrote in your initial post: [QUOTE=JD2823;5510445]My husband: age 60, psa 11.8, Cores involved 12/12 (70%), Gleason Group 5+4=9, Adenocarcinoma

    Bone Scan clear, MRI showed: Seminal vesicle invasion on one side and nerve bundle invasion.

    This week he had prostate removed and pathology came back that two lymph nodes on one side and four on other were positive….[QUOTE]

    And DjinTonic replied:
    [QUOTE=DjinTonic;5510466]You husband has metastatic PSA, as documented by the post-op path report….[QUOTE]


    In one sense, being metastatic for prostate cancer means the cancer has spread to other parts of the body, and that means kind of a jump with no direct connection to the original tumor, so it doesn’t count spread to the seminal vesicles or presence right outside the capsule, including the rectum and bladder. In one sense, commonly accepted, it includes the lymph nodes, and that is the basis for Djin’s comment.


    But all metastases are not created equal, and metastases to the lymph nodes in the pelvis are less serious than metastases in lymph nodes outside the pelvis, metastases in the bones, or metastases in organs like the liver (uncommon in the liver). This inequality is addressed in “The Key to Prostate Cancer,” especially in the chapters on the Royal phase. The book’s index is also helpful. The takeaway point here is that just because a patient is metastatic, he is not in the same boat with all other metastatic patients – the extent (volume) and dispersal of metastases are important, and treatments differ depending on those differences.


    Also, when I started this journey two decades ago, I had the impression that having metastases meant you were near the end of the survival line. That is not at all the case, though being metastatic is definitely serious business. Having that clear bone scan is a good sign as it shows there are no large metastases in the bones, and extensive research shows that such patients do a lot better than patients with large, detectable metastases in bones.

    ….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 05-03-2021, 08:12 AM   #12
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    Re: positive lymph node removal during prostate removal

    Jim's comment about differences in metastatic prostate cancer (mPCa) is related to my comment about locally advanced and advanced metastatic disease. Local metastases are generally treatedwith RT after RP.. in some cases there are a small number of distant mets that can be treated with spot radiation; however distant mets often signal that systemic treatjmnt if one kind or another has become necessary.

    Your husband's path report (and advanced scanning) will help determine what treament or combination of treatments will either help prevent distant mets from forming, or treat any existing ones that are found and halt their progress.

    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 05-03-2021, 08:16 AM   #13
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    Re: positive lymph node removal during prostate removal

    JD, Welcome to this little band of brothers and sisters. Most of us arrive here after lurking for a while and often before treatment. We each have our own unique story; but, in your situation I feel your story is in the third chapter. More help will be available if we knew a few more earlier details. Things like your husbands prostate history, your location, why you chose surgery for treatment, overall health history would be helpful. Prostate cancer comes in with different risk levels and also with many forms of treatment. A Gleason 9 diagnosis is far more challenging than a Gleason 6 like myself. However; this forum has many guys with G9 experience that will offer their help. Thanks for advocating for your husband. Terry
    __________________
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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
    Treated 6/17 SBRT @ Cleveland Clinic by Dr. Tendulkar
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    Old 05-03-2021, 11:08 AM   #14
    IADT3since2000
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    Re: positive lymph node removal during prostate removal

    Hi again JD.

    I'm replying to one of your earlier posts. You wrote:

    Quote:
    Originally Posted by JD2823 View Post
    Jim, Thanks so much for taking the time to give me so much information. We do have a medical oncologist in mind. He does not specialize in prostate cancer, but he treated my husband's mom who had lung cancer.
    In my opinion it would not be a good idea to go to a general medical oncologist unless you are restricted in your choices. The doctor you have in mind may be excellent, but prostate cancer in advanced patients is a complex business with progress so rapid that it is hard for even the experts to keep up, and the stakes are high: you want to avoid sub-optimal treatment if you can. I'll join the chorus with EONORE, Eric's comment. In fact, there is a superb medical oncologist specializing in prostate cancer not far from you, a short plane trip away, in Las Vegas. He is Dr. Nick Vogelzang, MD, and he is extremely well known in the field. He has led many clinical trials for prostate cancer and participated in others, but aside from that, he has presented at national conferences for prostate cancer patients, and I am impressed with the way he thinks and his viewpoints. If you go to our taxpayer supported national resource at our National Library of medicine, www.pubmed.gov, and search for - vogelzang nj [au] AND prostate cancer , you will get an idea of his record. I just did that search and got a list of 168 papers spanning more than 30 years, and he is still going strong as the author or co-author. Most doctors, even good ones, don't author even a single paper. If you click on the blue hypertext of any listing, you will get an abstract brief description of the paper, stating key points, if there is one. Sometimes you get a link to a free copy online of the complete paper.

    Most of us don't need that high powered, highly experienced, extraordinarily talented kind of help, but if your husband truly has Gleason 9 cancer with spread to the lymph nodes, that kind of help could make a critical difference. Also, even if seeing Dr. Vogelzang is not practical, his office might be able to recommend some local doctors. I expect that Phoenix probably has some medical oncologists that are very good with prostate cancer.

    Here's another thing: often these genius experts will work with local medical oncologists who guide the month-to-month exam, test, and treatment routine. It's like having a general lay out the strategy and lower level but competent officers implement the tactics. That's the way my care went through my radiation in 2013.

    Here's another other thing: chances are good that that GS-9 interpretations of the biopsy and RP specimen are accurate, but these Gleason score are so important that you want to ensure accuracy. Find out if the pathologist who looked at the biopsy and specimen is expert in reading prostate cancer tissue or whether he or she is a general pathologist. If not an expert, the results should be sent to an expert for rereading.

    Quote:
    Originally Posted by JD2823 View Post
    So you are saying the reason to wait on treatment is so that if there is a metastases it will be more likely to show up on scans? That makes sense and is something I never thought about.
    Yes, it's a balancing act. The sooner your husband starts ADT or other appropriate treatment, the sooner the cancer is knocked back, but if it is knocked back too much and too soon, there won't be large enough blocks of cancer for the scans to detect it. It helps to have PSA above about 2, but the best scans can detect it in the 1 to 2 range (Axumin, Ga68 PSMA-11 PET/CT), and even below 1 (Ga68 PSMA-11 PET/CT) with a fair amount of success. You may have seen threads from JWPMP on this board; her husband has been going through that kind of balancing act. I'm thinking that a good medical oncologist could get you scheduled for a scan fairly quickly, though the Ga68 scan is now available only at the Universities of California at Los Angeles and San Francisco, where it has been approved for those locations by the FDA, at least up until recently, and there is a backlog for that scan.

    Quote:
    Originally Posted by JD2823 View Post
    How do I know if he had a standard bone scan or one of the newer ones? Is there a specific name for the higher tech bone scan?
    It's almost a sure bet that your husband got the old war horse scan, the bone scan that uses an isotope of the element technetium (Tc). That scan will pick up tumors when about 10% or more of bone at a spot is invaded by cancer. The Axumin and Ga68 scans are far more sensitive, far more effective. There is another excellent scan, NaF18 PET/CT for bone (the one I had), which is widely available, but that is not good for soft tissue and is being supplanted by the other scans. Sometimes doctors elect not to get advanced scans, especially if the results would not alter the treatment plan, but my hunch is that experts would want them in your husband's case.

    You are asking good questions. It's hard at the beginning, really like being in a foreign land with no preparation. Before getting my fateful PSA result, I thought the highest a PSA could be was a score of 10, and I had never heard of a Digital Rectal Exam (DRE). I learned, and so will you and your husband.

    ….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 05-03-2021, 12:22 PM   #15
    IADT3since2000
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    Re: positive lymph node removal during prostate removal

    Some of this is academic now JD, past history rear-view-mirror stuff, but here are some answers to earlier questions.

    Quote:
    Originally Posted by JD2823 View Post
    Thank you for the reply. I am confused about doctors not recommending surgery with his type prognosis?? His urologist said best to get out as much of the cancer as possible.

    A lot depends on what was known ahead of the surgery. Surgery was considered “the gold standard” treatment for most types of prostate cancer, including cases like your husband’s seems to be, about two and a half decades ago, and radiation was not all that great back then, with prostate imaging in its infancy compared to what it is today. Many surgeons still believe in their bones that surgery is the best – “Heal with steel!” – it’s their training, profession and bread and butter, but radiation, imaging and other supportive technologies have advanced greatly, arguably, and in my opinion, offering better odds and prospects than surgery for most patients. Don’t feel badly if you and your husband were impressed with the surgeon and did not get an opinion from a medical or radiation oncologist; that’s probably par for the course. It’s what I did at the start also; fortunately, the surgeons refused to treat my case that I did not understand was so challenging.


    The key fact is that prostate cancers with high Gleason numbers, specifically 8 to 10, are more than likely to have spread beyond the prostate in the form of micro or larger metastases at the time of diagnosis. That fact results in odds that surgery more often than not will not cure those cancers. Radiation, on the other hand, can reach beyond the prostate, going where surgery cannot, including difficult-to-reach lymph nodes, and knock out the cancer in the first try. That is probably why initial, well-done radiation with supportive technology (especially imaging and ADT) posts better non-recurrence numbers than surgery, even surgery with follow-up radiation, though the latter numbers are within striking distance of the success enjoyed by radiation.


    Quote:
    Originally Posted by JD2823 View Post
    He said lymph nodes were clear on MRI prior surgery, but when he took lymph nodes out during surgery and sent them off, they came back Positive.

    I may have already mentioned this in another post, but here it is in case I did not: CT and MRI scans need a certain size of tumor before they show it clearly enough to be observed by a radiologist; with CT scans, the lower limit is about the size of a pea, which is pretty large tumor-wise. That means that smaller tumors slip through undetected. The biopsy of removed sample nodes is done with a microscope, I believe, probably with added staining which can spotlight problems,which can reveal very small tumors.

    Quote:
    Originally Posted by JD2823 View Post
    Why do doctors choose not to do surgery? My assumption is just not to put them through it when they know more treatment will be necessary after?

    A good argument can be made for going straight to radiation and supportive treatment (like ADT, possibly coupled with early chemo) and skipping surgery, in my opinion, but there are points to be made on the surgery side. DjinTonic has posted reasoned support for surgery in advanced cases. My own suspicion is that many surgeons (urologists) are just not sufficiently aware of research findings for surgery versus initial radiation; I hope to post about that research. On the patient and loved ones side, I suspect the desire to “just get the cancer out of me” and “end the problem” is strong, and, in the absence of knowledge about the early spread of aggressive cancer, that desire can feel compelling, meshing nicely with urologists desire to do what they trained for and believe in.


    Quote:
    Originally Posted by JD2823 View Post
    So there is no reason for him to wait on ADT ... correct?”

    The balancing act with getting in a scan while that is still practical has been discussed elsewhere.


    Quote:
    Originally Posted by JD2823 View Post
    The plan was for him to start a clinical trial which included ADT six weeks after surgery, but he will not be a candidate if psa is above 2 which it probably will be. We won't know that four another month.

    Whoa there! There may be an excellent clinical trial that fits your husband and would be good for him, but be aware that urologist are often not that aware of the success prospects of radiation and supportive drugs – therapy available now, proven and without the need for entering a trial, and also be aware that doctors often have some financial and/or professional motivation for getting patients into trials even when the trial is not in the best interest of the patient. That was the case for me; I was offered more than one trial, and I know now that they would have delayed appropriate therapy that was so successful, perhaps delaying until too late. On the other hand, an expert medical oncologist would be in an excellent position to evaluate your husband’s fit with a potentially beneficial clinical trial. Don’t get me wrong: I BELIEVE in and value research, but I also believe in patients first not data points first. I have participated in prostate cancer research, both in writing and with submission of blood and tissue.


    There is NO RESTRICTION on giving ADT to your husband no matter what his PSA level is, but there is the consideration of possibly compromising chances for a successful advanced scan if done too early, as we discussed elsewhere. While it would be good to start the next treatment (such as ADT, possibly coupled with a course of chemo but very likely not) soon, it is very likely that you do have some time before the cancer builds up momentum, especially after knocking it back with surgery; the surgery was definitely not a waste: while apparently not achieving a cure, it did destroy the “mother ship.” The timing your urologist told you about is very likely geared to the particular clinical trial with which he or she Is involved, but that timing is not a requirement for ADT beyond that trial.


    Quote:
    Originally Posted by JD2823 View Post
    I am an anxious, jump in and get the ball rolling kind of person, and he is a sit and wait to process kind of guy. He wants to just wait until his surgical follow up appt to see what urologist wants to do. I don't think he understands the seriousness of his condition.

    So opposites attract, like my wife and me, and that often makes for good teamwork (also what I will call "vigorous discussion," but no doubt you know all about that). You can get into learning about the disease now; that’s a very good approach at this time, and you can help educate your husband and be his advocate; he can make sure you both take careful aim with this second shot. Your husband may not want to understand the seriousness of his condition; he may be in “denial”, which is one of the stages of the grieving process, in this case grieving for loss of a future you both imagined that now seems like a nightmare. Chances are you both will soon again find joy in life, though prostate cancer, especially for an advanced case, is far from a cake walk. In a strange way it gives many of us a greater appreciation of life, but that can take time. It also could be that your husband, like many of us, wants to trust his urologist as his savior from prostate cancer. That’s pretty normal too, but often it is not the best approach at this stage where you need to move on to other treatment

    ….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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