Newly diagnosed with prostate cancer

Stephen62
Stephen62 Member Posts: 3

I am 62, physically fit, and found out I had a rising psa when I went in to get blood testing for hip replacement. My psa rose to 4.4 from 3.0 the year before. A urologist saw me on a Friday before my hip replacement the following Monday. His digital exam found an "abnormality" on the right side of my prostate. He recommended the 4K blood test. I had the hip replaced and the results of the 4k test came back that I had a 7% chance of having prostate cancer. Because of the abnormality, my doctor wanted me to get a biobsy performed. I waited three months after my hip surgery to have the biopsy performed. During the biopsy I asked my doctor how enlarged my prostate is and he said it is about 40 grams. Results are as follows bellow:

A. Left Apex; Gleason 3+3 with adenocarcinoma involving 30% of biopsy

D. Left Lateral Apex; Gleason 4+3=7 with adenocarcinoma involving 20% of biopsy, Gleason Pattern 4 comprises approximately 60% of the tumor volume

F. Left Lateral Base; Gleason 3+3 with adenocarcinoma involving approximately 30% of the biopsy length.

I. Right Base - High grade prostatic intraepithelial neoplasia (HGPIN)

K. Right Lateral Mid; Gleason 3+3 with adenocarcinoma involving approximately 40% of the biopsy length.

The rest of the cores were benign prostate tissue.

Since getting the results, my urologist arranged for me to get a CT scan, chest x-ray, and bone scan. The good news is that all these tests concluded that there were no abnormalities. What struck me is a comment on this test results that states "Visualized portion of the prostate is grossly unremarkable". 

I have an appointment with my urologist on Monday where he will answer my questions and we will formulate a treatment plan for me. I have been doing a lot of research over these several weeks and have concluded seeds and radiation will be the best option for me. I have contacted a radiation oncologist with Radiotherapy Clinics of Georgia. They implant 70 - 80 iodine radiation seeds and 3 -4 gold gold seeds that are used as targets for the IMRT. Radiation will commence three weeks after seeding and will require 30-35 treatments. They have a data base of over 14,000 patiants. They told me I have a 82% 10 year statistical cure rate based on my prostate biopsy and the other follow up tests.

I am leaning very heavily toward the above treatment because incontinance occurs in only 1% of their patients and other side effects are also minimized with their methodology in patients with similar statistical characteristics. I was also told that I fit into the 1% group since I have no urinary problems nor have had any urinary type medical procedures.

Currently I am writing down questions to ask my urologist. One of which is why my prostate looks grossly unremarkable under ct scan and yet he said it felt abnormal or irregular. I welcome any input from members here, as well as help with good questions to ask my urologist.

Thanks in advance!

Comments

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    .

    Regulator gives good advise; the bone scan and ct scan  many times provides false negatives...recommend better image tests such as a T3 MRI and a PET Scan.............proper diagnostic tests upfront is critical for an optimum treatment decision.

    check out a local support group for input about facilities near you...........go to the ustoo site...they sponsor local support groups world wide

    You may wish to investigate, if hormone treatment along with radiation will improve your outcome

    You may also wish to investigate SBRT, to see if this will work for you.

    ...........................

    I would be careful about Georgia Based Radiaiton Oncology practice......they sound sleezy to me....I dpretty sure that I heard other negative things about this practice in the past,...at any rate I would interview another practice.....

    Georgia-Based Radiation Oncology Practice to Pay $3.8 Million to Settle False Claims Act Case

     

    https://www.justice.gov/opa/pr/georgia-based-radiation-oncology-practice-pay-38-million-settle-false-claims-act-case

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member

    .

    Regulator gives good advise; the bone scan and ct scan  many times provides false negatives...recommend better image tests such as a T3 MRI and a PET Scan.............proper diagnostic tests upfront is critical for an optimum treatment decision.

    check out a local support group for input about facilities near you...........go to the ustoo site...they sponsor local support groups world wide

    You may wish to investigate, if hormone treatment along with radiation will improve your outcome

    You may also wish to investigate SBRT, to see if this will work for you.

    ...........................

    I would be careful about Georgia Based Radiaiton Oncology practice......they sound sleezy to me....I dpretty sure that I heard other negative things about this practice in the past,...at any rate I would interview another practice.....

    Georgia-Based Radiation Oncology Practice to Pay $3.8 Million to Settle False Claims Act Case

     

    https://www.justice.gov/opa/pr/georgia-based-radiation-oncology-practice-pay-38-million-settle-false-claims-act-case

    Me also

    Stephen,

    I also have some recollection of negative reports about a radiology facility in Georgia. I would proceed with caution, and speak with doctors at another facility first.  "Seeding" (brachytherapy) is regarded as effective mostly for minor disease.  Assuming all reports are correct, your case would probably require the additional EBRT (external) radiation that they mentioned to you.

    The imaging report is using anatomical terminology. By "not grossly remarkable" the report is not saying that the gland is normal, but rather that its external shape is not overtly deformed; there are no immediately visable signs of severe abnormality.

    Emory (in Atlanta) is one of the best cancer centers in the US, and Mercer University (in Macon) also has a medical school, along with UGa in Athens, so from anywhere in Georgia you are close to a teaching hospital.

    max

  • Regulator
    Regulator Member Posts: 42
    edited June 2018 #4
    Stephen:

    Stephen:

    Sorry to hear about your recent diagnosis but welcome to the Board:

    I too am a newly diagnosed "high risk" PCa patient and my own particulars are significantly different (worse) than yours (see my own initial thread here on the ACS Board at - - https://csn.cancer.org/node/316458), so I'm not going to comment on too-too much here. However, I've come down the same basic road as you in terms of the usual steps that follow a high PSA result (i.e., biopsy, imaging, treatment decisions, etc.), so I've got a couple of key things to share with you that might prove to be of value.

    I went through many months of a rising PSA value without a single DRE (digital rectal exam) being performed, and then, when I finally did obtain one, the results were indeterminate (i.e., nothing irregular was discovered by the urologist). Weeks later, after a positive biopsy and negative bone scan, an initial CT scan reported (much like your own case) that "no nodularity" or other anomalies were associated with the prostate. Then, a multi-parametric (high-resolution) MRI that was just concluded this past week, clearly showed a rather sizeable (2.5 cm = 1") diameter nodule located at the base of my prostate.

    So, the takeaway from of all of this (at least for me), is that a lone, standard-issue CT scan should hardly be trusted when dealing with the prostate. Sadly, I believe the results of a standard bone scan are equally questionable when reported as "negative". Both tests produce far too many "false negatives" to be of much use in my view, and I've come to believe that multi-parametric (high-resolution) 3T-MRI and Pet-Scans of various types (FDG, F18, PSMA, etc.), offer far better diagnostic value for definitive prostate imaging.

    I hope that helps a little and the very best of luck to you!

  • VascodaGama
    VascodaGama Member Posts: 3,707 Member
    You are moving well

    Stephen,

    I like your sense of curiosity and inquisitiveness. Yes you should ask in what to believe; the DRE or the CT result.

    As you discovered the 4K blood test is also just a predictive calculation to avoid biopsies (AS patients), which in your case, showing a very low probability of cancer in need of treatment (Gs 7), has missed the staus of guys that are typical cases recommended to follow AS. We need to be inquisitive when the diagnosis tends to follow predictive tests. In PCa affairs decisions should be made on results from real facts, not just from pure calculations. 

    I recommend you to get second opinions before deciding. The image exams indicated by Regulator above may be your best shot to investigate if far metastases are present. The option you describe above (brachy plus IMRT) seems proper and effective if your case is localized. The hormonal component may improve outcomes.

    You are moving well. Do your researches, gain confidence and you will be ready for the kill.

    Best of lucks,

    VGama

  • Stephen62
    Stephen62 Member Posts: 3
    Saw my urologist

    Saw my urologist for the first time after getting results of my CT scan, chest x-ray, and bone scan. Asked him about a PET scan and MRI. He said they aren't necesarry. I have my first scheduled appontment with a radiation oncologist for next week. Treatment plan recommended by my urologist is seeds followed by radiation therapy. 

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    I think that I remember now

    I think that there was urological ownership of the georgia based radiation oncology....so there is bias for profit

    https://www.renalandurologynews.com/prostate-cancer/prostate-cancer-urologist-ownership-ups-intensity-modulated-radiation-therapy/article/683361/

    ....

    I strongly suggest that you receive a second opinion from a urologist not associated with the urological practice or radiation practice that you seeing. ....In my opinion, the urologist who recommended a CT scan and bone scan that quite often show false negatives, and tells you that an MRI with much finer resolution is not necessary is full of it. ..So you may be inadequately treated and not be cured.

     

     

  • Stephen62
    Stephen62 Member Posts: 3

    I think that I remember now

    I think that there was urological ownership of the georgia based radiation oncology....so there is bias for profit

    https://www.renalandurologynews.com/prostate-cancer/prostate-cancer-urologist-ownership-ups-intensity-modulated-radiation-therapy/article/683361/

    ....

    I strongly suggest that you receive a second opinion from a urologist not associated with the urological practice or radiation practice that you seeing. ....In my opinion, the urologist who recommended a CT scan and bone scan that quite often show false negatives, and tells you that an MRI with much finer resolution is not necessary is full of it. ..So you may be inadequately treated and not be cured.

     

     

    Saw my urologist

    My urologist IS NOT in practice with Radiotherapy Clinics of Georgia but is well aquainted with them. His recommendation of using seeds and then radiation therapy was suggested but he never mentioned Radiotherapy Clinics of Georgia. I asked him if he was knowledgeable about them and he was very knowledgeable about them but neither recommended nor dissuaded me from using them. I asked if their treatment methodology was the same as that provided by Northside Hospital Forsyth (in Cumming Georgia) and his response was yes- both use Iodine 25 seeds and Northside Cancer Institute has the EBRT utilizing IGRT w/image guided equipment. My urologist and radiation oncologist from Northside will also utilize the operating room at Northside as well for seed planting. So the operation and follow up radiation will all be performed at Northside Hospital Forsyth. I chose this provider because it is much closer to my home than the other provider I was researching and the treatment regimen is nearly identical. As to future PET scans and MRI's, I've decided to put my trust AND FAITH in my urologist and move on to the next step of planning my operation schedule. It's easy to be fearful and/or over plan, but eventually we have to put our trust somewhere.  

  • VascodaGama
    VascodaGama Member Posts: 3,707 Member
    Metals can distort images and influence the area being radiated

    Trusting the doctor in charge of the procedures is a step forward for the success of the treatment. But one needs to be certain that such doctor has enough experience and proven "repertoire" in his play. I agree with above survivors' suggestions for you to be inquisitive on the recommendations of your doctor due to his rejection in your wish of having a better image exam, without proper explanation. The value of an image study in the diagnosis of PCa is high and provides more confidence when choosing the route to take. Probably I would disqualify the MRI as its image could be distorted by the hip replacement at the area, but a PET with choline tracers (metals condition the uptake of FDG) could be specific to cancerous cells, not influenced by the metals.

    In any case, the recommended brachy plus IMRT seem to me (a lay guy) to be a reasonable choice based on the biopsy results. Your urologist may have guessed a localized case (not contained) so that the IMRT is included to cover the surrounding areas. One doubt is the influence that the local "metal hip" has in the overall outcome. The hip stands at the area receiving the radiation. The metal will bounce off the rays risking collateral damage of tissues that should be avoided. I wonder if the radiologist plans to deliver a lower dose or even avoid such risky areas and, consequently, diminishing the value of the whole treatment. You should discuss with the doctor you trust and get assurances on the procedure with detailed explanations not a simple brush up of the issue. In other words, how much would the new hip influence a good job by the radiologist?

    In the end you will be the one benefiting or losing with the results of what was decided. The side effects are the risks but these would be there even without extra influences. The doctor and radiologist will continue their professional daily life as usual.
    And you should ask yourself: Can I trust them? Is there anything I would like to know before saying yes?

    Once comfortable with the process, you only need to receive the green light from your family.

    Best of lucks.

    VG

  • Chuckect
    Chuckect Member Posts: 45
    2nd and third opinions are important

    as a guy that had runaway cancer running through his body and ending up with stage 4 metistatic prostate cancer because off missed dx.. So whatever you do get a second opinion,, you don't want to make a mistake, i assure you the results of doing the wrong thing could be bad.. later gater and good luck

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    Stephen62 said:

    Saw my urologist

    My urologist IS NOT in practice with Radiotherapy Clinics of Georgia but is well aquainted with them. His recommendation of using seeds and then radiation therapy was suggested but he never mentioned Radiotherapy Clinics of Georgia. I asked him if he was knowledgeable about them and he was very knowledgeable about them but neither recommended nor dissuaded me from using them. I asked if their treatment methodology was the same as that provided by Northside Hospital Forsyth (in Cumming Georgia) and his response was yes- both use Iodine 25 seeds and Northside Cancer Institute has the EBRT utilizing IGRT w/image guided equipment. My urologist and radiation oncologist from Northside will also utilize the operating room at Northside as well for seed planting. So the operation and follow up radiation will all be performed at Northside Hospital Forsyth. I chose this provider because it is much closer to my home than the other provider I was researching and the treatment regimen is nearly identical. As to future PET scans and MRI's, I've decided to put my trust AND FAITH in my urologist and move on to the next step of planning my operation schedule. It's easy to be fearful and/or over plan, but eventually we have to put our trust somewhere.  

    Works for Me

    Stephen it now seems to me that you have exercised due diligence, asked the right questions, and are at peace with a treatment plan.  I would feel good with your level of investigation myself. 

    Some men globe trot across the earth consulting this expert, that authority. But most men cannot afford this, and most men also get treatment at a location that is convenient.  IGRT is the most modern form of fractionated EBRT, and I nearly chose that over surgery myself. Feel good about it.

    May you be blessed with curative results. It is reasonable to think that you will get them,

    max