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[DanHo]

Glad I found this site. Have been battling in the dark for last three years.

Was diagnosed in August 2018. Gleason 9. Biopsy 12/12 cores positive with PSA 35. No spread to bones with ct/ bone scan.

Treatment consisted of external beam radiation/brachytherapy/ 2 years lupron with PSA undectable during the 2 year period..

Now one year after last lupron injection, my PSA has jumped to 3.

I recently had a PSMA-PET scan with positive lymph node involvement.

Also had prostate biopsy which all cores were benign.

My urology oncologist started me back on lupron and added casodex and referred me to medical oncologist.

I met with the MO yesterday and she doesn’t want to add any further treatments, just test PSA every 6 months.

As I have an aggressive type of cancer, I want to hit it with everything available while I am strong. Is this unreasonable..

I really don’t know what is best for my condition

Any advice is welcome.

Thanks for your help.

Dan

[Schwah]

You’ll get some great ideas here. Where do you live do we can find you a new MO who should be more aggressive

Schwah

[DanHo in reply to Schwah]

I live in Little Rock, Arkansas.I have been going to Rockefeller Cancer Institute at University Arkansas for Medical Sciences.

My original Urology Oncologist has retired and the Medical Oncologist seems to be very conservative in her treatment plan.

Thanks for any advice.

[Tall_Allen]

If your original radiation did not include the pelvic lymph node area, you may still be able to go back and have that area eradicated. This would be done with 2 years of Lupron and possibly Zytiga. You'd have to talk to a good radiation oncologist - if you can go to Dallas for treatment, I think Neil Desai at UTSW is very good.

[DanHo in reply to Tall_Allen]

Thanks Tall_AllenI'm thinking of changing physicians.

I dont agree with the waiting approach till my condition worsens.

I want to be hit with everything in the arsenal, chemo, radiation, additional ADT.

As I am diabetic, I read somewhere that Zytiga can worsen the condition. Is there an alternative?

[Tall_Allen in reply to DanHo]

Unfortunately, diabetes makes healing from all therapies slower. Ask your oncologist about hormone therapy alternatives (there are several, but idk if they play well with diabetes).

[DanHo in reply to Tall_Allen]

Thanks Tall_Allen

[Stoneartist]

If you are diabetic 2 you might want to look into diet as a helping hand - low carb keto diet. Best of luck

[Jollyjill]

Writing on behalf of my husband who’s achieved excellent control on Casodex but because of lymph node involvement was referred to a facility where he underwent Proton Beam Radiation which was extremely effective. He suggests that you discuss this therapy with your doctor to gain concurrence. As for me - I have my husband back! Need I say more?

[DanHo]

Jollyjill,

I’m sure your husband is glad he has you.

I will plan on an appointment with radiologist..

All the best,

Thanks,

Dan