9 Gleason Score: My name is Tim and am... - Prostate Cancer N...

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9 Gleason Score

Haberdasher
Haberdasher

My name is Tim and am currently 63. When I had my PSA checked in January of 2019 it was 19. I made the decision to go to Mayo in Rochester for my diagnosis and treatment. Was told I had a Gleason score of 9 and aggressive cancer. Had surgery in June of 2019 for radical prostatectomy and removal of 19 lymph nodes. Two lymph nodes were found to be cancerous.

One week following surgery I was given a Lupron shot which I will be on for a total of 2 years for sure. My PSA was approximately 0.10 and has continued at that since.

In January and February I had 38 weeks of radiation. My greatest challenge is not having the strength I would like to have and a little extra belly fat.

I don't really have questions but find it helpful to know what others have experienced.

I am trusting God for my future as my times are in His hands.

23 Replies
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Sound like you are doing well. Newly diagnosed patients have a lot decisions and question. We are here for you.

Pray for Gods direction for sure...Trusting in him will clear the right path for you...it is different journey for all of us...I had no surgery with a few mets and lymph involvement been on lupron and zytiga for 18 months PSA has gone from 350 down to 15....working towards Nadir...feeling good...today is a great day enjoy each new day!!!

Haberdasher
Haberdasher in reply to SPEEDYX

Thanks for your reply. Let me know how things progress for you.

One side effect I didn't mention must be my mind. I had 38 days of radiation, not 38 weeks!

SPEEDYX
SPEEDYX in reply to Haberdasher

Figured that otherwise I would able to see you from New York😄...I post occasionally on my progress..Thanks

Sounds like they threw the kitchen sink at it? I am 57, belly fat I can relate with despite not being overweight. Strength has not been a issue but I have been avid cyclist for many years and I lost weight when diagnosed so I am actually faster and stronger than before my dx. I am concerned about how long my gym will stay closed as I would like to get back to weights for upper body which has thinned out considerably between loss of muscle mass and weight. I have avoided fatique, hot flashes, brain fog (at least I think I have avoided this but you would have to ask my wife) so far and been on ADT for 9 months. I have some of the other side effects but they are not of much of a concern. Blood work WBC, RBC could be better but for now they have just been #'s. My Dr attributes my tolerating (despite the bloodwork) of Lupron, Zytiga and Pred to staying very active. I also eat a very diverse diet close to what most would call the Mediterranean Diet. I wish you the best and I hope I answered your question.

P.S. I have no idea how this changed to italics.

Greetings. This site has been amazing. Like you, my husband had an RP in May of 2019, but got bad pathology. Positive margins and ECE. He is now undergoing 35 sessions of radiation at MD Anderson. He is tired a lot, and will sometimes fall asleep sometimes after his session. He is looking forward to finishing this leg of the journey.

Wondering what your overall dose of radiation was at Mayo? You said 38 sessions but what was your per session dose? Did you have your nodes radiated too? I'm always interested in what other large hospitals are doing.

How is your energy now?

Feel free to post any questions here. I have learned so much.

I’m sorry I don’t know what the dosage was. I was tired but also had diarrhea which I found to be a greater problem.

My energy is not great but I’m back to work and often travel 1000 miles in three days. However handling heavy weights on a daily basis would be a problem for me.

Welcome. Surgery last year but no RT or Luprin so can't offer any thoughts on that. But it sounds like you are doing well so far. Sharing your story and reading others makes us all smarter.

My story is similar. Diagnosis March 2019 PSA 30 & Gleason 9/10. Prostatectomy May 2019 pathology report confirmed Gleason score. Lupron June 2019. Radiation Sept-November, 40 rounds total (72 gy). By December 2019 PSA was down to 0.045. I thought for sure I was on the path of healing. BUT, May 2020 PSA rose to .999, two weeks later, 1.27, and by July 8 it was 2.12. Now starting on Casodex. Also adding some supplements, Berberine, Artemisinin, Black Currant Seed Oil and lots (5 g) of vitamin C daily.

I am also waiting on high medical grade olive oil (high in oleocanthal) and will start 2 tablespoons a day when it arrives.

I pray for your good health to return and longevity!

Haberdasher
Haberdasher in reply to PJDellas

How long were you on Lipton?

I’m sorry. How long were you on Lupron?

PJDellas
PJDellas in reply to Haberdasher

Still on it. Just added Casodex.

Similar journey. Suggest you discuss genetic testing with your Oncologist.

I’m wondering what the value is after the fact?

Tim - it sounds like you are on the right track, that Mayo is a wonderful resource. My treatment was somewhat similar, though lower treatment level for hormone treatment. I got through it all with little or no distress. The key I think was that I remained active; in fact I hardly altered my 4 days a week of tennis and alternated days of weight room (low levels here) activity. I think that helped combat any weight gain - I had none; and it helped keep my energy level up. I continued to work a regular week. I will admit, I tried to squeeze in a nap whenever possible, when work schedule allowed. It's a daily or every other day deal but you can stay on top of it...sometimes seems a slow process but I think you can do it. All the best

I still have almost a year of Lupron. Seams like a long time but I continue to push.

What is your prognosis?

Keep in close contact with your doc; any support groups in your area so you can converse with others?; stay active. You'll make it.

Thank you everyone for sharing your journey. It helps me know that if I ever have to move from Active Surveillance to a treatment plan that there is hope.

I'm 72 & was diagnosed July '19;Gleason 9, PSA : 7.63. I had 44 sessions of radiation. I've been on Lupron since Oct. Side effects not too bad; fatigue and occaisional hot flashes. Exercise & meditation have helped a lot. My last PSA: 0.02. I recently had a stress test which revealed some cardiac blockage so I have to greatly reduce exercise. I will have an angioplasty, but that won't happen until Sept. at the earliest. Corona virus has resulted in a waiting list. I don't know if cancer treatment has caused my heart problem.

'it's always sumthin'

Sidney

Hidden
Hidden in reply to SaraCat1

Firmagon has fewer cardiovascular incidents compared to Lupron. Check it.

SaraCat1
SaraCat1 in reply to Hidden

Thanks, I'll check it out.

Your experiences as you describe are pretty typical and you are receiving careful and appropriate care for a G9 tumor. You found a good oncologist.

Thanks for your encouragement!

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