Recently Diagnosed

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Worried60
Worried60 Member Posts: 13 Member
edited October 2022 in Prostate Cancer #1

My husband is a 75 year old who was diagnosed last week with what we’re told us an aggressive cancer. An MRI in Chattanooga shows cancer in both seminal vesicles, bladder base, suspicious bone lesions on pelvis.

14 core biopsy show positive in all, Gleason 5+5, 5+4 in 13 and one as 4+4. Percentage in each all range from lowest at 50, 3 at 60, 1 at 65 and rest are 75, 80, 85 and 100 percent.. Perineural invasion is seen.

We have an appointment at Cleveland Clinic Sep 9 with a urologist.

No idea what to expect or what we can do. I’m extremely worried.

Any advice or suggestions?

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  • Clevelandguy
    Clevelandguy Member Posts: 1,076 Member
    edited September 2022 #2
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    Hi,

    Sorry to hear about your advanced case but have faith the Cleveland Clinic is a top notch organization. Between the Clinic and University Hospital Siedman cancer center(thats where I was treated) your getting the best of the best, doctors + equipment. Have faith in your doctor team(Urologist and Oncologist) as they will determine the best treatment for your husband. Sounds like with his advanced case some form of testosterone lowering medication, possibly radiation and/or chemo might be in order. Good luck and report back with his course of treatment.

    Dave 3+4

  • Worried60
    Worried60 Member Posts: 13 Member
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    Thank you for the positive and encouraging words on Cleveland Clinic. We’re nervous and apprehensive for our first visit. I’m guessing the only way they will know if it’s spread outside the prostate will be with a CT or PET? I pray they will do one on Friday even though it’s a first visit.

  • VascodaGama
    VascodaGama Member Posts: 3,689 Member
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    I am sorry to hear about your husband's conditions. Probably a bone scan may be better than a CT to verify bone involvement. I wonder if he experienced pain. What is the PSA level?

    Gleason rate of 5 is the highest so the cancer is quite aggressive. Typically oncologists recommend hormonal treatment (ADT) followed by chemotherapy or in combination.

    These are palliative treatments that manage to control, and in some cases stop, the advance of the cancer. Hopefully the spread is localized and you manage to halted there.

    Your husband should also get a dexascan to verify bone health. He may need to add bisphosphonates to control bone loss (osteoporosis/osteopenia), which is common in advanced cases.

    Best wishes and luck in this journey.

    VG

  • Worried60
    Worried60 Member Posts: 13 Member
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    Thank you. Any help/guidance/advice is truly appreciated. He’s had no pain. His PSA was 4 in 2019 and 7.10 in June this year. He had been struggling with urinary in continence and retention due to BPH which led to a Uro-lift and then a TURP which those biopsies led to the MRI to the 14 cores. We’re praying it hasn’t spread and a removal will fix him up. Hoping they do some tests Friday at his first appointment to find out if it’s spread. Will let you know.

  • VascodaGama
    VascodaGama Member Posts: 3,689 Member
    edited September 2022 #6
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    I am with you. Do as many tests as possible before starting the ADT.

    Though the cancer is aggressive, the present status wouldn't alter much in two months. The treatment choice would be the same.

    I recommend a complete lipids test (blood test) to check the liver and kidneys, and a testosterone together with the psa, and heart issues. These will help in the choice of drugs, define parameters and serve as base data to compare in future tests.

    Doctors tend to offer sort of palliative approachs to older patients (over 75). However, some survivors in this board with risk cases have done multimodal treatment involving surgery plus radiation plus hormonal. Surely, the number of side effects increase which prejudices the quality of life.

    Discuss on the possibilities with his doctor and get second opinions if possible. He needs to treat but do not rush.

    Be wise and do things coordinatly.

    Best,

    VG

  • Worried60
    Worried60 Member Posts: 13 Member
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    Absolutely, must thought, talking and research must go into the decision making. His blood work is all good except for some anemia which he’s had for life. His heart is in good shape and sees his cardiologist regularly as he’s had a triple bypass long ago and stents have now replaced those. Do you know if they do CTs, MEIs or PET scans on first appointments?

  • Clevelandguy
    Clevelandguy Member Posts: 1,076 Member
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    Hi,

    I assume you have a doctor contact for the Cleveland Clinic, you might want to call them ASAP to set up some testing while you are there. If it was me I would not want the first visit just to be a meet & greet. Hopefully your visit is for more than one day and you can get the doctors working on hour husbands case with the appropriate diagnostic tests to evaluate and form a treatment plan. PET and a bone scan plus the blood tests Vasco recommended would be a good starting point.

    Dave 3+4

  • Worried60
    Worried60 Member Posts: 13 Member
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    It IS a first visit but they have all his records, tests, imaging, everything they could need. I will call them and ask about tests for same day but we’re going in on dietary restrictions in preparation for tests. And yes, we have an appointment scheduled at the Glickman Tower with them.

  • Clevelandguy
    Clevelandguy Member Posts: 1,076 Member
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    Hi,

    Great, sounds like your going to have a productive visit…………….

    Dave 3+4

  • Worried60
    Worried60 Member Posts: 13 Member
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    The doctor we met with was urology surgical. They cannot remove anything at this time because there is no clear defined line. The cancer abuts the rectal wall and is in bladder neck. The “suspicion bone lesion” on his pelvis is more likely than not the cancer because it follows the “natural progression “. The doctor started him on the med today that stops/reduces the flare from hormone treatment which he will start in 3 weeks. In the meantime he has upgraded my husband to a high priority for a PET and moved to oncology. He said he has already spoken with them because my husband’s case is a bad one but he said the goal is to shrink the cancer enough to create the defined line they need and then remove the prostate and bladder. He said things will also depend on the PET.

  • Clevelandguy
    Clevelandguy Member Posts: 1,076 Member
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    Hi,

    Sounds like your headed in the right direction and are starting to define a treatment path. The PET scan should help them define what the cancer is attached to so that they can proceed with his treatment.

    Dave 3+4

  • JP63
    JP63 Member Posts: 33 Member
    edited September 2022 #13
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    And his PSA readings were only 4 and 7.

    In some cancers mine included the PSA numbers are low.

    Maybe they could try to do other tests like the 4K score more often.

    The cancer abutting the rectal wall doesnt mean that it went thru. It is uncommon for the prostate cancer to spread to the rectum since there is a fascia or membrane between the prostate and rectum that gives some protection.

    Thats a good thing that you are being treated in a top notch hospital!!!

  • Worried60
    Worried60 Member Posts: 13 Member
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    Thanks for the info. What is a 4K test? We’re headed to CC today for his appointment tomorrow with the Oncologist. They want to meet and we’re hoping give us some more information or insight on what the options will be depending on the PSMA scan on Oct 5 that we come back for. That would also be the time he would start the hormone therapy so we hope they can arrange that first treatment on the same day.

  • JP63
    JP63 Member Posts: 33 Member
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    its a test to find out the probability of having agressive cancer…..my PSA was 2 thats is good but the Free PSA percent was low at 10% it should have been 25%. So before doing a biopsy the Dr ordered the test and it came back as high probability of having aggressive cancer….so then the MRI, biopsy, decipher and then surgery..

  • Worried60
    Worried60 Member Posts: 13 Member
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    Thank you for that info. That test wasn’t offered by his initial urologist. When the TURP biopsies came back as highly probable cancer, it went to the detailed MRI and then the 14 core biopsy. Which has now told us how aggressive it is.

  • Worried60
    Worried60 Member Posts: 13 Member
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    We met with the oncologist at Cleveland Clinic on 9-19-22. We really liked the doctor. His PSMA scan is set for late in the day Oct 5 and he asked is we would spend the night and he will meet with us the next day to go over the results. He confirmed the cancer is a very aggressive one and he also thinks the lesion on the pelvis is probably cancer as well. He also said that from a cancer standpoint there is no reason to remove the prostate and bladder. Due to my husband's cardiac risk, the doctor said he was going to change the order for the ADT from injection to pill form because there is a slightly less risk. His notes say he was prescribing Relugolix and a pharmacy would contact us, it would be a pill form, shipped to our home and he would take it every day. In the mail today was a letter from our insurance BCBS of TN stating they have approved what the doctor requested, "J9217 Eligard/Lupron Depot (leuprolide acetate (for depot suspension)) ." The letter also states the "Maintenance Dose Amount 22.50mg; Maintenance Dose Frequency (Days) 84; Total Doses Approved 112.50mg; Total Duration 365 Days". So what I think I'm understanding is, he's changed his mind on what medicine to give him and that my husband will receive an injection every 3 months? Trying to read about this different medicine I found this is prescribed as palliative care for advanced prostate cancer. My husband is now wondering if the doctor is not being more honest about his odds or what lays in front of him. We don't want to be molly coddled or led down a path of it will be fine when it may not be. Since the PSMA scan is yet to come, why the change of meds? We welcome all advice/suggestions/ideas...well at least that ones that are grounded.

  • VascodaGama
    VascodaGama Member Posts: 3,689 Member
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    Hi again,

    Though the PET scan will add more info, the opinion of the oncologist is correct. Your husband seems to have a T4 case which, in accordance with the NCCN guidelines to older patients (over75), is recommend to be treated with palliative approaches (ADT and/or Chemotherapy).

    In other words, radical therapies, that would manage cure, become not practical due to the extent of the spread. You couldn't be sure of dissecting the whole cancer with surgery but the risks involved.

    Radiation which shouldn't be done twice at the same area (risk of fistulas) is also reserved to treat pain when this becomes unbearable at bone lesions.

    In any case, your husband can try stopping the advancement of the cancer with ADT and still enjoying life for many years.

    He would need to try to adapt to the side effects caused by the ADT drugs. Some guys do well with intermittent administration. You can inquire about such possibilities in future.

    Regarding the drugs, your husband is already taking daily antiandrogens as describe in your above post.

    This pairs with the LHRH agonist Lupron (approved by the insurance).

    The Relugolix (LHRH antagonist) is a similar drug to Lupron but more expensive which may not be covered by your insurance.

    Relugolix is friendlier and recommended to patients with previous heart issues. You should inform his oncologist on the insurance letter and inquire if it is ok.

    Please note that ADT will affect the PET results. You should get the tests done before taking Lupron, including a testosterone blood test and dexa scan.

    Let's wait for the PET scan before starting anything.

    Best wishes,

    VGama

  • Worried60
    Worried60 Member Posts: 13 Member
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    I truly thank you for the information and insight. It makes more sense now. He’s getting his blood work this week, Testosterone, PSA, CBC, CMP. The oncologist at Cleveland Clinic didn’t tell us about the labs. I came across it while looking over my husband’s chart. We had already linked it to his local MyChart. We have a message into his PCP asking how we go about this…do we just print off the requested labs and go to our local/regular lab? This is all too new. I will be calling a local oncologist office today and get set up with them so he can have a local oncologist to coordinate with CC oncologist. I’m guessing the local oncologist can administer any injections and/or chemo to cut down on the trips to Cleveland. His PET PSMA is Oct 5 and we see the CC oncologist the next morning. They may give him his first injection at that time.

  • Worried60
    Worried60 Member Posts: 13 Member
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    The PSMA PET scan is day after tomorrow and we will find out the results the day after. Our nervousness has been compounded due to a test result in his MyChart. The oncologist had CC go through the 15 biopsies and have added “there is an intraductal component “. It sounds like it makes it worse with his already high volume high grade PC.

    Advice/opinions/thoughts?

  • Worried60
    Worried60 Member Posts: 13 Member
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    Has anyone not dealt with the intraductal component for prostate cancer?