New scan results question metastatic staging

[henukit]

Went to MD Anderson for a second opinion and was sent to do more tests. If you read previous posts, my local team didn't come to any strong recommendation for the next option after completing chemotherapy. Clinical panel concluded that RP is not a good option for me and RT does not have enough evidence for my staging to strongly recommend it.

Then I met separately with onc surgeon and he suggested surgery is my best option with RT a second one. Next meeting was with the RO and he suggested that best option would be SBRT saying that he could radiate all those areas where RP would not reach.

So I went to MD Anderson and the doctor there said:

1) we don't have enough data to make any conclusions now

2) I'm clearly an outlier and median results from clinical trials should not be applied to my case. We need to figure out an individualized approach based on specific data.

So she ordered a lot more blood tests (lipid, CEA, CTC, CRP), genetic mutations and scans, specifically bone scan and CT body scan.

So I have scan results in and they suggest that there's not much metastatic activity:

CT Bone Scan:

Impression: No convincing evidence of osseous metastatic disease.

Findings: Subtle scattered foci of increased radiotracer uptake in the lumbar spine is likely secondary to degenerative changes. There are no convincing abnormalities of suspicion for osseous metastases. Physiologic activity is seen in the kidneys and bladder.

CT chest, abdomen, pelvis summary:

No evidence of lymphadenopathy in either abdomen or pelvis. The nodal disease involving the left common iliac chains and internal iliac chain have decreased in sizes significantly. The residual lymph nodes are barely appreciable, measuring approximately 4 mm at most (image #1:30, 127, series #4). No new lymph node or lymphadenopathy.

The metastatic disease at L4 is barely appreciable, probably treated or in the process of a healing. Additional healing metastasis is noted at L5 primarily involving the lateral process. No definite new metastasis to the bones.

Also CellSearch CTC came back with zero, which is encouraging but I still don't know the value of this test, some studies show correlation with prognosis. Overall it looks like things are going quite well and I'm looking forward to debriefing of the results with the new doc.

[Tall_Allen]

Sounds like a great response to me.

[Litlerny]

Thanks for sharing your story. It sounds like you got a very good report card from MD Anderson. It shows the importance of getting a second opinion, particularly one from a world leader in prostate cancer research in treatment. Good health to you!

[henukit in reply to Litlerny]

Yeah, I was looking for somewhat unorthodox opinion, getting outside of the box of standard of care. I think I found one. We will see, I have a consultation today.

[Litlerny in reply to henukit]

Please keep us all posted as you go. Thanks again.

[teamkv in reply to henukit]

How was the consult?

[henukit in reply to teamkv]

Interesting. Apparently, very good response places me definitely in the oligometastatic category with very well controlled low volume disease.

[Bako]

We’re trying to get more definitive information on level of known metastasis ...had surgery, chemo, and Lupron. PSA started to rise after being non detectable for a year or more... now on Zytiga/Prednisone.

We can’t seem to get support for testing like you had at MD Anderson.

How did you get in and WHO was the doctor that did your tests?

[henukit in reply to Bako]

I scheduled an appointment through their web site and then followed up by a phone call. Doctor name is Eleni Efstathiou.

[Bako in reply to henukit]

Thanks so much... this is very helpful!!

Best to you ❤️

[j-o-h-n in reply to Bako]

BTW Tall_Allen highly recommends Dr. Eleni Efstathiou.

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 12/11/2018 8:35 PM EST