Recently Diagnosed, Intermediate Prostate Cancer

Posted by scj428 @scj428, Dec 8, 2023

Hello, New to this group, new to this subject. I was recently diagnosed with prostate cancer at age 63. Had a 12 core biopsy, five positive, three Gleason 3+3= 6, 5%, two are Gleason 3+4=7, one 5%, one is 10%. Was told I have a very large prostate at 110cc. I'm trying to decide on a treatment. I was told that active surveillance was probably not a good idea with a Gleason 7, even though biopsy says small amount plus favorable. So I'm looking at the same set of circumstances that most of you in this group have been faced with at one time. Surgery, Robotic RP, or Radiation. Possibly the Photon or Proton Beam radiation. I know every ones situation is different. At this point I only have the biopsy results. Need some scans I think before making a decision. Looking for a comment from someone who has been diagnosed with similar numbers who has been or is currently being treated. What type of treatment did you decide on? How has it worked for you? If you had it to do over would you stay with the treatment you chose or try another?

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Highly recommend decipher test . I was confident in my decision for surgery but decipher test just confirmed decision for me. I was high risk 93%. Was diagnosed 3+3 but after surgery dissection of prostate was 3+4. 59 years old 6 months post surgery doing good. Still have so dribble not to bad . Ed work in progress. Using Trimix injection is a great option for me. I had enlarged prostate also just don’t remember size. Ed was a problem before surgery along with peeing all the time. Something to consider in surgery vs other treatments. Wishing you the best and a peaceful decision.

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I choose surgery because, as mentioned by others above, I felt it gave me greater flexibility with salvage radiation if needed (I was diagnosed at age 51 with Gleeson of 4+3=7). Having two reoccurrences since surgery in late 2017, I believe I made the right choice. Unfortunately, PC often does come back, so having as many tools as possible is important.

A regret was not going to one of the best medical facilities after my first reoccurrence and before blindly radiating the prostate bed. I chose to use my local urologist. I now see Dr. Kwon. If I had used Dr. Kwon beforehand, he would have likely done a PET scan to see the specific location before starting treatment. In my experience, the Mayo's of the world have much greater access to current research and treatment options.

I hope this helps and I wish you the very best of luck!

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Good morning. Sorry you got the diagnosis but, as you can see, you have a lot of company.

I was diagnosed 2 years ago at age 68 with Gleason 8. No evidence of spread on scans and the MRI suggested it was confined to the prostate. In excellent health otherwise. I talked with numerous colleagues of mine and sought opinions from Urologists and Radiation Oncologists. There was no "right" answer regarding surgery vs radiation (I realize there a several additional options available but I did not consider them). As has been mentioned, RP (surgery) immediately removes the cancer, allows more complete staging and lymph node sampling and reserves the option of salvage radiation therapy in the future should you need it. Surgery after radiation is fraught with difficulties. Unfortunately, 6 months later a single metastasis was discovered in my T8 vertebral body and I once again did my homework and elected aggressive treatment at Johns Hopkins. A year later and my PSA is undetectable and I am off all medication/treatments. Fingers crossed.

Side effects with surgery are immediate-incontinence (significant majority temporary), rarely infection or other risks of surgery and ED. The side effects from radiation tend to be delayed-possible incontinence and ED but also bladder and bowel issues should they be in the treatment field. Increased risk of other cancer is a questionable and very low risk and tends to be decades later.

Although your biopsy shows a Gleason 7 it only samples a very small portion of the gland. If you have surgery it could be upgraded or downgraded.

The choice of treatment is difficult and depends on individual and personal factors. There is no one size fits all. Educate yourself and discuss with doctors you trust and are willing to give them time to you. Avoid listening to individuals who claim there is only this way or they had such and such a complication. They are a single person and may have an ax to grind. Large scientific studies tend to give the best information regarding outcomes and side effects.

Good luck.

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@bens1

scj428: I had 3+4 Gleason. 10.2 PSA and was 69 when treated in January/February. I was diagnosed in October of last year. I looked at removal, different forms of radiation and tulsa pro/ablation.... I spoke with 5 radiation oncologists from at least 3 centers of excellence.

I too had the Decipher test and it was one piece that was definitely used by the doctors and me to help with our treatment decision.

Removal was not right for me as I did not want to deal with a 20-30% of biological re-occurrence. I was also willing to rule out, or make removal more difficult later on. Tulsa Pro and ablation statistics were not robust enough for me to decide for that type of targeted treatment. I felt the same way about cyberknife, though it has been out longer, so I focused on radiation.

I looked at Proton and narrow margin photon machines. The process of radiation usually involves radiating the entire prostate and 3-5 mm outside of it to cover any possible microcell spread. Anything that narrows that margin to limit healthy tissue exposure, and therefore side effects is important. Most of the radiation treatments used margins of 3-5 mm. The margins on the photon machine I used was 2 mm. Thats a BIG deal (2mm vs 3-5mm) and I had 5 hypo fractional treatments. The MIRAGE randomized trial also showed how important real time, while on the table, MRI imaging is versus fused images. Again, PROTECT HEALTHY TISSUE by choosing reduced margin treatment if you choose radiation.

Proton was a choice that I strongly considered because of how the radiation exit could be stopped and its narrow beam but it did not have real time built in MRI. There are several MRI guided machines to use on the market now but NOT for Proton.

I also had spaceoar inserted to give separation between my rectum and my prostate, to minimize healthy tissue exposure. There are several spaceoar type gels on the market as well as a fairly new saline into a narrow disappearing ballon insertion.

You will see on this site that most were happy with their choice and treatment. I too would not do anything different except I would have a fusion MRI. I had restricted urine flow after 3 treatments but Flomax helped reduce that within a day. I had no bleeding and no pain and am still that way. PSA has been going down with each blood test every 3 months. No ed issues either.

Feel free to private message me or ask here if you have any questions.

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Had mri last week am scheduled for 5 day sbrt next week.My oncologist says they are doing the planning from ctscan and mri results.Did you have cat scan and markers inserted in prostate? Psa was 12.5 in June had eligard injection in July and last month psa 7.5. I have spaceoar also. Was your procedure mri guided?Facility here does not have that capability.

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@vshirley

Had mri last week am scheduled for 5 day sbrt next week.My oncologist says they are doing the planning from ctscan and mri results.Did you have cat scan and markers inserted in prostate? Psa was 12.5 in June had eligard injection in July and last month psa 7.5. I have spaceoar also. Was your procedure mri guided?Facility here does not have that capability.

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Vshirley: my procedure had a built in MRI so they were seeing my prostate in real time while they did the procedure. When they use fused images they increase the margins to make up for the fused image real-time trade off.

Although my markers were not required, since my RO was putting the spaceoar in anyway, she put markers in as a backup in case there was a maintenance issue with the machine but all went well and I did not mind that as it struck me as being on the cautious side.

They did a ct scan and an mri on the machine, pre-treatment, for initial mapping and then final mapping in real time.

Glad you are only doing 5 treatments. You might want to have your radiation oncologist prescribe Flomax to you ahead of time so that you have it available immediately if you need it. For me, after the third hypo-fractional treatment, I needed it and got relief overnight regarding urine flow, but was never in any pain.

Good luck next week.

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@bens1

Vshirley: my procedure had a built in MRI so they were seeing my prostate in real time while they did the procedure. When they use fused images they increase the margins to make up for the fused image real-time trade off.

Although my markers were not required, since my RO was putting the spaceoar in anyway, she put markers in as a backup in case there was a maintenance issue with the machine but all went well and I did not mind that as it struck me as being on the cautious side.

They did a ct scan and an mri on the machine, pre-treatment, for initial mapping and then final mapping in real time.

Glad you are only doing 5 treatments. You might want to have your radiation oncologist prescribe Flomax to you ahead of time so that you have it available immediately if you need it. For me, after the third hypo-fractional treatment, I needed it and got relief overnight regarding urine flow, but was never in any pain.

Good luck next week.

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Thank you so very much for the info and Good wishes.Did you lose weight during or after treatments and where did you have treatment as I have not been able to find facility with MRI guided procedure.My oncologits assures me all will be fine the way they are planning it.

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I did not lose weight or gain weight after the treatments. My weight has always been managed reasonably over the years and I have stayed active.

Here is a link to Elekta’s treatment centers:
https://www.elekta.com/patients/treatment-centers/
You have done the spaceoar which should help and they will ask you to drink water each time about 45 minutes before your treatment to help separate your bladder from the radiation. You may under or over do that but they will let you know. If you believe that your doctor has the expertise to accurately map your treatment plan then given all the prep work you have done, you should feel good that you have taken steps to minimize side effects. Keep asking questions of your doctor and the people (physicist, dosimitrist…) that are in the treatment room with you. It’s scary but after you have had your first treatment, you will feel more comfortable.

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@bens1

I did not lose weight or gain weight after the treatments. My weight has always been managed reasonably over the years and I have stayed active.

Here is a link to Elekta’s treatment centers:
https://www.elekta.com/patients/treatment-centers/
You have done the spaceoar which should help and they will ask you to drink water each time about 45 minutes before your treatment to help separate your bladder from the radiation. You may under or over do that but they will let you know. If you believe that your doctor has the expertise to accurately map your treatment plan then given all the prep work you have done, you should feel good that you have taken steps to minimize side effects. Keep asking questions of your doctor and the people (physicist, dosimitrist…) that are in the treatment room with you. It’s scary but after you have had your first treatment, you will feel more comfortable.

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Sorry vshirley, to answer your treatment location question, I had my treatment in Orlando Florida through Orlando health, after speaking with 5 radiation oncologists at 3 centers of excellence, all of whom I knew had the MRIdian machine. My RO trained at MD Andersen.

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@hbp

Scj. You are still young and should have many years of cancer thinking and planning and perhaps treatment ahead of you. Cancer tends go to sleep and then wake up again. If I were you I would have robotic surgery as that preserves the use of radiation in years ahead, conversely, doing radiation now eliminated the option of surgery later. I had the surgery, no pain, fully continent and a few days to recovery. I am in favor of an aggressive treatment at an excellent facility for this dreaded disease. I am against just hormone therapy as that fails in time and you should have a lot of time ahead of you. You need to be focused on a cure. The most important issue is a long and good life. Good luck!

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Thanks for taking the time to reply. I know what you are saying about surgery, its out and if there is a recurrence the radiation is the follow up. I just haven't been able to make a decision at the moment. As I mentioned I have no scans as of now. Working to get those at an out of area facility. I'm in a rural area and any kind of advanced care or treatment is 100 plus miles away and booked weeks out. I'm not getting rushed by these Drs. One told me I needed to make a decision on treatment and get started no later than six months from my diagnosis, Nov 1st. Then on a later visit same Dr. insisted that I make a decision and get scheduled in the next 2-3 weeks. Urologist , surgery I suppose.

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Scj. I understand your situation. I live about 75 miles north of UCLA where I had my surgery and my numerous 3 month follow up appoints ( every 3 months for the last 2 years). All of the travel is inconvenient, but it is a life threatening disease that gets worse without treatment. It is very important that your cancer is aggressively addressed before it spreads out of the prostrate area. Good luck

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