Nervous about Axumin MRI results - Advanced Prostate...

Advanced Prostate Cancer

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Nervous about Axumin MRI results

Lyubov profile image

RALP 4/14; ADT & IMRT 2-3/2016

Low PSA but doubling every 6 months: 0.5; 0.8; 0.18

Plus severe lower back & cervical pain.

Only after I pressed him, did the urologist order the test, which is tomorrow.

Uro also dismissed my saying it is time to get a medical oncologist!

Wonder what would be next steps if spread is found.

12 Replies

I would have a consultation with a medical oncologist and a radiology oncologist asap.

Lyubov profile image
Lyubov in reply to Nameless999

Thank you. Seems more than reasonable to me. I also am wondering if we should check in with primary care doc? At this point (we moved 1-1/2 ago & had to get new docs), all he has is the PCP & the Uro. Before the move, he had uro, rad onc, & wonderful PCP who stayed on top of things, like a coordinator.

BarronS profile image
BarronS in reply to Lyubov

You need to be as proactive as possible, which you are. Hundreds of thousands slip through the cracks every year because the doctors don't take it seriously. We are not at the point of individualized medicine yet.

It's good you are ringing the alarm bell to get everyone on your case. Just make sure you have a backup to help with any advocacy.

Lyubov profile image
Lyubov in reply to BarronS

Thank you, BarronS. I'm not sure who would be a "back-up." The PCP? Our son (only child) lives 400+ miles away, plus with Covid-19 restrictions it would be unrealistic to enlist him. He'll provide input & support, obviously.

Lyubov wrote >>> " ...Uro also dismissed my saying it is time to get a medical oncologist!... "

I would DISMISS the urologist.

This one is a big improvement over the other. Based on posts here & our experience, I think urologists are rather strange in general.

Nameless999 profile image
Nameless999 in reply to Lyubov

I would inform your PCP of any and all conditions. I will repeat, obtain the services of a medical oncologist soon. Your new MO can and will direct you to a radiology oncologist that he/she coordinates with. Get a complete team for care. I have a PCP, a MO, RO and a spinal neurosurgeon.

Lyubov profile image
Lyubov in reply to Nameless999

I am very grateful and believe you are right -- you have established an effective team. I myself believe in the team approach in dealing with most serious issues -- particularly health, and especially cancer. So, I have my work cut out for me! Thanks and best wishes for your health!

Hey Lyubov, my urologist isn’t very supportive as well but thankfully my medical oncologist is great. Don’t hesitate to get a referral through your doctor. My urologist basically had me digging a hole and didn’t feel that radiation would be used and that my life would be filled on pain killers. Wrong - radiation was done and I’m pain free. It sounded like he was about to drop the phone when he saw How low my current PSA number is. Keep fighting and asking questions.

If you have only a few metastases, the next step is radiation, normally with short-course ADT recommended. Good luck to you.

Oncologist ASAP....... Did anyone mention Keytruda for your lung nodules?

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 09/04/2020 5:42 PM DST

Lyubov profile image
Lyubov in reply to j-o-h-n

No on the Keytruda question. My oncology surgeon's recommendation is a CT in December. I'm o.k. with that. Thanks for asking.

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