Newly diagnosed with prostate cancer

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I am 86 years old, fit ,active and mentally alert. Here is a list of events that happened to me recently in chronological order:

1) March 2024: Noted first blood in urine.

2) April 2024: Cystoscopy procedure found abnormal tissue on prostate urethra wall.

3) April 15, 2024: Underwent partial bipolar TURP operation to remove some tissue for cancer examination.

4) April 19, 2024: Pathology examination showed prostate adenocarcinoma with ductal variant features. Gleason score 8 ( 4+4 ), N0M1

5) May 1,2024 : Bone scan.

6) May 9, 2024 : CT Scan

Both scans showed suspected cancer spread to T12 of spine ( one site only ).

7) The doctors in charge felt that there was " likely " micrometastatic cancer spread, so I was prescribed hormone treatment ( Casodex 30 days + ongoing Zoladex injection).

8) Unhappy with the lack of clarity of diagnosis, I requested a second look at my cancer staging. My request was met with a positive response from a medical oncologist who ordered a PSMA PET Scan. It will be done on July 18.

9) My major concerns now: (a) Side effects of hormone treatment. Since my testostarone level as an old man is already at a low level, can I expect less side effects? (b) My urine flow is not normal after the TURP operation. When the bladder is full, urine flow is a single stream. When the bladder is not full, the urine stream is split. This seems to indicate that my urethra has been deformed by the instrument of the TURP operation.

I would appreciate very much if some of you could shed some lights.

  • Good Afternoon  

    A warm welcome to the Macmillan Online Prostate Community - i am so sorry to find you here.

    Just to remind you we are all speaking from our personal journey here so I will comment as follows:-

    a) I would think you are just the same as all of us to suffer the side effects of the Hormone Therapy as it's the hormones combined with the lack of testosterone causing the side effects. We don't all get all or even any of the side effects, you may be lucky.

    b) i too have had a TURP operation and there has been no change in my urine flow but there was to the frequency. This has been mastered by me doing my pelvic floor exercises. i would suggest if you are not happy with your flow you contact the urology department where the TURP was performed. They do not discharge you from their care until everything is OK.

    I hope this helps - if you have any further questions please don't hesitate to ask. Nothing is too trivial.

    Best wishes  - Brian.

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  • Hi Brian,

    Thank you very much for your response. The long list of hormone treatment side effects does make me worried. Since I am physically fit at a senior age, I'll keep my fingers crossed and hope for the best. I did talk to my urologist about the urination issue. He said he's not worried about that. He trained me how to use intermittent catheter just in case there is a blockage. I may have to live with the urethra deformation if it is permanent. I am eagerly waiting for the PSMA PET Scan hoping it will give a clearer picture of my cancer spread. I am still hoping that radiation therapy is my option to cure my cancer completely. I am of the opinion that systemic approach is used only when the picture is cloudy. Am I not right?

    Henry.

  • Good Afternoon Henry ()

    It may well be Good Morning to you as I have just noticed you have told my fellow Champion Mike you are in Canada!!

    I have been on Hormone Therapy for over 30 months - (you can read my entire journey by clicking on my avatar or name) I have had nearly every side effect going but I just shrug them off and get on with life!!

    If your PSAM PET scan shows just the one site only for the spread it should easily be curable with Radiotherapy, so I wish you well with the scan. I think your ultimate treatment plan will be chosen once this scan has taken place and the results are in.

    Good luck with everything. Keep us posted as to how you get on.

    Best wishes - Brian.

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  • Hello Henry  .

    A warm welcome from a wife whose husband has advanced metastatic prostate cancer. Brian has given a brilliant response already. I have a question about the PSMA PET CT scan. Are you still on the Casodex and if so, how long have you been taking it? The Casodex contains Bicalutamide which can affect the accuracy of the scan within a fairly short period of time so maybe a question for your oncologist about timings. If you had a very high initial PSA it may not be too much of an issue but if you are looking for micromets it may.

  • Hello Alwayshope,

    Thank you very much for your input. I finished Casodex on June 28, and will have PSMA PET scan on July 18. I am not sure how long Bicsalutamide can remain effective but you do raise a good point. I will certainly talk to my oncologist about timings. Thank you again for joining my discussion.

    Henry.

  • Casodex has a half life of 7 days and is almost completely out of the system in 30 days.

  • Hello Alwayshope,

    Just received a call from my hospital. They confirmed that my course of Casodex completed on June 28 will not interfere with the PMSA PET scan to be done on July 18. I want to thank you again for raising this important issue.

    Henry.

  • Hi Brian,

    One issue about my TURP operation just came to my mine. I remember my instrument size was 26 French. What was yours? I still believe that my urethra was hurt by the instrument judged by the pain I had post operation,even though the doctor disagreed. A doctor always acts on his best judgement. The reason I raise this issue is not to blame anyone, only for fact finding.

    Henry.

  • Hello Henry ( 

    I honestly have no idea about the instrument used. I was busy lying on my back chatting about football and thinking just as soon as I am out of here it's good riddance to the catheter I have had for over 10 months.

    The operation worked for me although the "chips" from the operation upgraded me from a Gleason 7 to a Gleason 9 Grimacing !!

    Best wishes - Brian.

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  • For your Info:

    Doctors excited about targeted prostate cancer therapy, but can't prescribe it yet

    Dale Cousins was thrilled when he saw his body scans from before and after a new prostate cancer treatment.

    "(The doctor) said, 'Do you see any difference?'" the 79-year-old from Petrolia, Ont., recalled.

    "I said, 'all these spots around my abdomen, they’re gone.'"

    Cousins is part of a clinical trial of radioligand therapy, or RLT — a precise targeting of cancer cells with radiation given intravenously. Oncologists say RLT is poised to become a new "pillar" of cancer care, alongside surgery, chemotherapy and radiation. But unlike Cousins, prostate cancer patients who aren't in a clinical trial don't have free access to it.

    "We're able to deliver this very specific therapy to specific cells in the body," said Dr. David Laidley, a nuclear oncologist with Western University and London Health Sciences Centre.

    "We're able to deliver lethal radiation therapy specifically targeted to cancer cells and at the same time generally sparing the normal tissues," said Laidley, who is the principal investigator for the London, Ont., site of the Canada-wide clinical trial comparing RLT to chemotherapy.

    Cousins was diagnosed with prostate cancer in 2010 and has been through many treatments, including surgery. After being stable for several years, a scan last year revealed his cancer had spread and he was enrolled in the trial.

    With the last of his six RLT infusions coming on July 10, Cousins has already had a "dramatic reduction" in cancerous lesions and his prostate specific antigen levels have decreased significantly, suggesting an "excellent response," Laidley said.

    Past clinical trials have already shown RLT's effectiveness, leading to Health Canada approving Pluvicto — the radioactive drug that kills the targeted cancer cells — in August 2022 for patients whose prostate cancer has spread and chemotherapy has failed.

    But almost two years later, advanced prostate cancer patients still can't get public access to radioligand therapy because negotiations on how much it should cost government health plans are ongoing.

    While waiting for that decision, there are men with prostate cancer who need the treatment to improve their quality of life and live longer, Laidley said.

    "Oncologists are asking 'can we refer patients or is this an option?' And unfortunately, we have to say that it's not available."

    Right now, radioligand therapy for cancer is only publicly available for patients with neuroendocrine tumours, an uncommon but not rare cancer that starts in neuroendocrine cells in the gastrointestinal system or the pancreas, said Dr. Simron Singh, a medical oncologist at Sunnybrook Health Sciences Centre in Toronto.

    Singh was the global principal investigator for a recent international clinical trial that found another radioactive drug delivered through RLT, called Lutathera, reduced neuroendocrine tumour progression and death by 72 per cent when given early after a patient's diagnosis.

    Like Pluvicto, Lutathera was already approved in Canada as a last line of cancer treatment but the trial results, published in The Lancet last month, were the first to show that RLT could be used as a "starting treatment," said Singh, who is the co-founder of Sunnybrook's Susan Leslie Clinic for Neuroendocrine Tumours.

    In addition to neuroendocrine and prostate cancer, radioligand treatment using different radioactive drugs is currently in clinical trials for other types of cancers, he said.

    "This is a new pillar (in cancer care) that we're developing," Singh said.

    "It's going to revolutionize the way we treat cancer completely in the years to come."

    RLT works by finding a target, which is usually a receptor on the surface of cancer cells that doesn't exist in healthy tissue, he said.

    Successful radioligand therapy depends on identifying that receptor in each patient's cancer cells using a PET scan, then delivering the right radioactive medication — like Pluvicto for prostate cancer and Lutathera for neuroendocrine tumours — that will bind to the cancer cells and kill them without harming healthy cells, he said.

    The Canadian Cancer Society calls radioligand therapy "a remarkable breakthrough" that started with Lutathera for neuroendocrine cancer around 2018.

    ”We saw patients having metastases all over their body and then with one or two treatments completely cleared up. It's incredible,” said Stuart Edmonds, a pharmacology expert and the cancer society's executive vice-president of mission, research and advocacy.

    RLT also has "considerably lower" side-effects compared to traditional radiation because it minimizes harm to healthy cells, Edmonds said.

    Now that RLT's effectiveness in prolonging life for patients with metastatic prostate cancer who have run out of other treatment options has been proven, the cancer society is funding clinical trials across Canada looking at whether Pluvicto can be used for prostate cancer patients in much earlier stages of the disease.

    In the meantime, Edmonds said it's "tremendously important" to make Pluvicto publicly accessible for advanced prostate cancer patients.

    "I just want it to be available in Canada as soon as possible," he said.

    Global pharmaceutical company Novartis manufactures both Pluvicto and Lutathera.

    Both the company and the agency in charge of negotiating drug pricing confirmed to The Canadian Press that they have not yet reached an agreement on how much Pluvicto should cost.

    The negotiations began in August of last year, but then had "an unanticipated delay," said Dominic Tan, acting CEO of the pan-Canadian Pharmaceutical Alliance in an emailed statement.

    "The pCPA always strives to complete the process as quickly as circumstances allow," Tan said.

    "However, negotiations are a two-way street, and as such we are unable to provide a precise timeline for when the process will be complete."

    Novartis said it recognizes the "high unmet need" of advanced prostate cancer patients.

    "It is with these patients in mind that we continue to actively collaborate with the pCPA with the goal of achieving timely and responsible access to this therapeutic advance," Novartis Canada spokesperson Rosa D'Acunti said in an emailed statement.

    "We are hopeful that an agreement with pCPA that recognizes the significant innovation Pluvicto represents and the value it brings to patients is within reach."

    This report by The Canadian Press was first published July 6, 2024.

    Canadian Press health coverage receives support through a partnership with the Canadian Medical Association. CP is solely responsible for this content.

    Nicole Ireland, The Canadian Press