Meeting with Radiation Oncologist to ... - Advanced Prostate...

Advanced Prostate Cancer

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Meeting with Radiation Oncologist to discuss treatments after persistent cancer after Radical Prostatectomy (RP) with PSA of 0.8 - Gleason 7

Musicman61 profile image
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I had my meeting with my Radiation Oncologist (RO) to discuss my treatment plan now since I had the recurrence cancer after surgery with PSA 0.8. He had me meet him in his examining room, instead of his office so he could sit next to me and my wife. I thought that was unusual because I even asked if he was going to exam me. He said no but he had some important information to tell me. He said we are not going to start radiation treatment right now because he thinks my aggressive cancer is outside the prostate area. I said what made you believe that and he said he reviewed some early CT's that were done before and after my PR surgery and he noticed some changes in my lymph nodes outside my prostate area but directly above in the retro-peritoneal space in the abdominal cavity. That is when he started to mention doing more scans and the one you mentioned, 68 Gallium PSMA PET and a Axumin PET scan - tracer to find the cancer. The bad news is these are not covered by private insurance but covered by Medicaid Insurance if 65 years old or older.....I am 61. So I asked how much these are and he said $6,000. When the surgeon removed my prostate he also removed 22 lymph nodes that surrounded the prostate that looked and felt unusual. The results were: 6/14/18 - Robot assisted laparoscopic radical prostatectomy and bilateral pelvic lymphadenectomy - Gleason 4 + 3 prostate cancer with tertiary 5; acinar type - extracapuslar extension; + lymphovascular invasion; no seminal vesicle invasion; negative surgical margins; 22 negative lymph nodes. Question: What does that + lymphovascular invasion mean??

I am getting another CT on Thursday of my chest, abdomen and pelvis area PO + IV contrast at a Johns Hopkins Imaging Center which I had been at before. They are going to be looking at changes in the suspected area since we will have a 4 month period to review. I also was given another doctors name at Johns Hopkins Oncology dept. that might be able to get me into a clinical trials for this specialized scan and save me a lot of headaches and costs. I meet with them on October 3. I also will be checking my PSA reading again later today or tomorrow for my next readings. The doctor was surprised that I knew about that scan and said you have been doing your homework. He also wasn't afraid or offended that I was getting a second opinion to help me at the Johns Hopkins Oncology dept. He said he has sent patients to them before and that me feel better as well. Can anyone see any major issues that I should be concerned with in the above information?

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Musicman61
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Tall_Allen profile image
Tall_Allen

Ga 68 PSMA is only available in clinical trials. Axumin is covered by Medicare in recurrent men - many insurance cover it too. NIH is running a free trial of DCFPyL

Musicman61 profile image
Musicman61 in reply to Tall_Allen

Hi Tall Allen,

Thanks for that important information. I looked up the NIH trial and I probably could do that one if Johns Hopkins doesn't suggest that one or something similar. I appreciate your help. I meet with Hopkins on Oct 3.

Best regards,

MusicMan61 in Baltimore

MichaelDD profile image
MichaelDD

Musicman ..

Age 62 at diagnosis. Gleason 8 (4+4). PSA 12.

I have persistent PSA also. I was diagnosed in March of 2016. Had DaVinci removal June 2016. My oncologist informed me after that I had a PSA of .024 . I waited 3 months went to radiation. I had 39 sessions. I went into that at .042. After radiation I came out at .080. Since then to current I have a doubling of about every 3.9 months. An aggressive cancer but low-psa. I have had 3 body scans and have found nothing. Both my radiation oncologist and MO feel that there is metastasis but just can't "see" it. As of last July (2018) I was 1.350. My next blood test is next Monday. Expectation is 2 to 3.5

I will be having the GA68 PSMA at UCSF trial on Oct 12. Both Axumin and GA68 are out of pocket for me also. Will take this $3,300 hit hoping it helps locate where issues are. Also feel it will help make future PC needs for this pet scan more available if there are successes with folks who need it. Good luck and keep us posted.

Musicman61 profile image
Musicman61 in reply to MichaelDD

Hi MichaelDD,

Thanks for sharing your journey. I was supposed to get a regular CT Scan today but my new insurance carrier denied the request. I have since updated them with my medical situation and now rescheduled that CT for this Monday morning while they review my case. I still have my Oct 3 meeting with specialists at Johns Hopkins Radiation Oncology dept about my persistant PSA now at 0.9. I hope to get into a trials study with the advanced GA68 PSMA or the Axumin scan. I found out there is also an NIH trial that has the same conditions that we both meet for another high end scan to detect that cancer. I will keep you informed. I have learned so much from this site in just 2 weeks. Thanks to all that have helped me out. My next concern is getting back some erections... which my wife thinks is not important.

MusicMan61

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