I’ve been a member of this site since 2018 but this is my first post. My 11 year history of dealing with PC is in my profile. After having 3 clear Axumin scans since Oct 2019 and steadily increasing PSA but no other symptoms or blood work irregularities, my MO has scheduled me for a PSMA scan at Northwestern here in Chicago on Sept 1st. I’ll post results, Dr Hussain’s recommended next steps and also let you know if I can get Medicare to pay. Wish me luck!
John
Best of luck, and thank you for sharing your story and future experiences.
Best of luck.!! You are in good hands.
I've heard that Medicare will reimburse PSMA PET when CMS approves it - but check with them first. I'm always interested in what Maha Hussain has to say.
What’s CMS?
Center for Medicare Services
For the group’s understanding. There can be “ local” ( regional ) coverage decisions by the various Medicare contractors which administer Medicare in the absence of a National decision. That is why at times we can see inconsistency in Medicare payment, coverage. You can search National and local coverage decisions on the CMS website. cms.gov/Medicare/Coverage/D...
If I read your profile correctly, you have had slowly rising PSA for over 2 years, and one of the more famous MOs has not restarted treatment. Could you please share her reasoning on that?
Yes, I can share our discussion. Dr Hussain told me that there is no real evidence that starting ADT because of rising PSA only with no evidence of metastases extends survival. I’ve had 3 Axumin scans over the past 1 1/2 years and all were negative. My blood work is normal. Just rising PSA. She has told me that if the rising PSA is causing me anxiety, she would be willing to start ADT but that she couldn’t tell me that it would increase survival. I agreed with her that, for now, we should continue to monitor with blood work and scans until a metastasis appears, unless something leads her to recommend otherwise. I have a PSMA scan scheduled for next week which may well change this discussion. I do have complete faith in her knowledge and experience and she is very open to my questions and suggestions.
Your lucky, she was my MO while she was in Ann Arbor.
Thanks. I’ve had a similar but hypothetical conversation like that with my MO. It is counterintuitive to me that you wouldn’t attack the cancer hard as soon as evidence of it reappears, but I can see the other side, namely that two extra years of no ADT has significant benefits
This theory appears in the book Surviving Prostate Cancer by Patrick Walsh as well. In the fact that they know you will benefit from ADT and they also know you will become Castrate Resistance the idea if holding off until proof of metastasis will meet the same end point of overall survival. My wording may be off but hopefully I explained it correctly. I had 2 pints tonight, woohoo.
Good luck John. Just had my first psma. My result was suspicious for a met at C6 but subsequent thin slice mri said it could be degenerative disease. Have to do a repeat mri in two months to look for growth or not. HRT and SBRT decision on hold. Trying to live my life in between all this but I have learned a lot from this site so wanted to mention my result thus far. Again, good luck brother.
ChicagoJ all the best, I have has the PSMA scan as part of a trial. It didn't find anything more than we already knew. I hope yours come back with the same results. Northwestern is a great hospital, I had my radiation at their Warrenville Cancer Center from Dr. Nasser Mohammed, great folks there. All the best!
Everything Hussein has ordered has been covered by Medicare. She is very good about that! She’s the best❤️
WISHING YOU LUCK!!!
Good Luck, Good Health and Good Humor.
j-o-h-n Saturday 08/28/2021 10:32 PM DST
Welcome John. Your treatment has been logical and optimal given what is known. Will be very interested in the PSMA PET scan results. Regards and support. Paul
Hi ChicagoJ,If I had not moved to the twin cities a year ago I might have been able to give myself a ChicagoR. I see there is a ChicagoC as well.
Anyway more seriously and not to pry. How have things gone?
You were coming up on a PSMA PET when you last posted.
Hope all is well.
Hope all went well, ChicagoJ. I have my first DCFPYL PSMA scan day after tomorrow.
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