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New to the site. Feeling overwhelmed with recent news

To say the last month has been a whirlwind of bad news is an understatement. I am a 51 year old, active and healthy male. Non smoker, non drinker. Went to my GP to have a check up due to chronic fatigue and not "feeling myself". Blood work came back with a psa of 85. This was repeated to ensure no error. Since then I have seen a urologist who biopsied where 10 of 12 samples had a Gleason of 7. I had a negative bone scan and CT scan. I have since been referred to 2 prostate specialists (one specializing in radiation). I have a PET scan in progress with no date of image as of yet.
In meeting with the specialist today, he shared:
- 98% that this cancer is metastatic
- his opinion (after PET results) are to start hormone therapy (casodex and lupron depot). He would do a prostatectomy and remove lymph in area, seminal vesicles, nerves, etc.
- would likely need a form of radiation therapy following

His reasoning was this would give me the best chance at greater longevity. He commented that "I am not much older than you and with children, this is what I would want done if I was in your shoes".
Impotence, possible urinary incontinence, along with our negatives from this route are quite concerning and not what I thought I was going to today.

I didnt ask him what he thought my prognosis would be opting for radiation/hormone vs his more aggressive treatment option.

Feeling on an island, where do I go next. My poor wife, parents and children. My life has just been turned upside down and I honestly havent been told what I can expect from a prognosis standpoint but guessing that will come after PET scan and results.

Has anyone been in my shoes?

  1. Wait for the PET scan results. I am traveling that same path. My original PSA score was just under 20 and I decided to go to NorthWestern (as I am in Chicago) and have a great team, Urologist, Radiologist and Medical Oncologist to work with. Had blood work, MRI, biopsy (Gleason score was 9) and the PET scan. I have three lesions (I refer to them as Papa Bear, Momma Bear and Baby Bear as they are large, medium and small) plus the PET scan found 3 lymph nodes were involved, but they are very small - two are 0.3 cm and one is 0.6 cm. I was started on bicalutamide just over a week ago and am scheduled for a lupron injection next Monday. When I will stop taking the bicalutamide and start with abiraterone and prednisone. Initially I was scared to death as each test result seemed to give me bad news, then I got the PET scan and learned that the cancer has not spread anywhere (except those three lymph nodes) and now the Doctors think I have an 80 % (not sure where that number came from) chance of being cured. Will start 5 1/2 weeks of radiation therapy in late November and the abiraterone will be taken for the next 24 months. This is a great place for support. Do some research and if you are uncomfortable get a second opinion. Most cancers are slow growing, mine is a more aggressive one and I am sticking with the folks that have gotten me to this point. Stay positive! Ask questions, do your research. Good luck on your journey and keep the site updated on your prognosis.

    1. After my initial diagnosis I started reading and researching, I had over 8 pages of notes that I asked my Urologist, the Radiologist and the Medical Oncologist, I think there is a way to private message, if so send me a note and I will scan and forward everything I have along to you.

    2. Just sent over what I have accumulated, good luck.

  2. So I was in your same boat. You need to have surgery 1st. Preferably robotic. Not because it is nerve sparing just less invasive. Than within a yr. Have a penile implant. Do not wait two yrs that pointless. Then they will monitor your PSA . If or when some yrs later your PSA goes up you will have other options. Hopefully, you will die of something else that is not cancer. You will be fine just take one day at a time.

    1. Thank you so much for your replies. My PSMA PET is scheduled for Sep 5th. So will wait to see what the scan shows. I have tentatively booked my robotic removal for November with Casodex and Lupron Depot to start following PET and up to surgery. The replies do help! Thank you!

      1. Hi . Glad to hear that you have the Psma PET scheduled and you are waiting on the results before making any decisions. Generally a Gleason 7 puts all treatment options on the table if it is still contained to the prostate. Your PSA may be the reason your doctor is betting on spread outside of the prostate, but the PSMA will give you a much more definitive answer. Even if the cancer has escaped the prostate, a Gleason 7 gives you options. My father-in-law had a Gleason 8 that had escaped the prostate, but just in the region. He had a combination of Cyberknife and traditional radiation, with androgen deprivation therapy and has had no signs of recurrence for several years. This is just one example. Don't hesitate, no matter what the PSMA results, to get a second opinion so that you hear different options. Wishing you the best and please feel free to keep us posted on how things go and to ask additional questions. Best, Richard ( Team)

      2. I just read Richard Faust's reply. It was thoughtful and complete. The PSMA has only been easily available for the last two years but it is a great place to start. If it is clear the general approach still applies with hormones and surgery and possibly radiation. But if there are sites of spread they can often be targeted. I had a solitary bone metastasis two years ago; it was irradiated followed by 6 months of ADT (androgen depravation therapy). My most recent PSMA shows no advancing "spots" including the previous bone lesion! The key issue is being comfortable that you have explored all your options (even second opinions) and that you fully embrace your treatment and your intention to outlive this disease!

    2. Yes I have been there. PSA same level ast age 55, Tc3 satge. Now 70, been stable fot years with no treatment. Psa .352 right now been rising very slowly lasgt five years. Went surgery, taxotere, lupron and casodex. Lost ability to get an erection after surgery-so theres that. But had many issues same time, heart. bladder ccancer, PAD, AFIB,a-Flutter. But still here. Hang in -- it does get better when you regroup, dust off and hit life again. Feel free to DM me if you need more help. Best of luck-stay positive.


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