New hot spots after treatment

[GolferDan]

Got diagnosed mid-April with Gleason 9, PSA 160+ (which was up from 80 just ten days prior and up from 2.6 one year ago)- so it’s aggressive. Original scans showed pelvic lymph node involvement and mets in pelvic area and one rib. They gave me one treatment of digerlax and then Lupron. Went for scans today (3 months later) and they scanned my whole body and then scanned my elbow again...said they saw a hot spot and needed more pictures. Does this mean the cancer spread and treatment isn’t working or did the orginal scans miss it the first time? The scans were done at two different hospitals. I feel fine, no pain anywhere. I meet with the doctor in the afternoon tomorrow but I’m sick with worry. Did anyone else have additional bone mets after treatment was started? Did it mean the treatment wasn’t working?

[Dan59]

What is your psa doing? My thought is it should be compared to the first scan. Also remember they do not know wether it is actually cancer, arthritis looks very similar. I always get my scans done at the same place, that way they have the comparison right there. IMO and from what I have seen the elbow seems like an unlikely place for it to show in the bones. What is your psa doing?

Dan

[GolferDan in reply to Dan59]

I originally had scans at my small town hospital but immediately went to the University of Michigan for treatment. They (UofM) didn’t rescan me at the time because my scans were only five days old, so this is my first set of scans with them. Blood test was also this morning but the results aren’t in my chart just yet. Do you think that is more important than the bone scan? If PSA goes down is that more important than new bone Mets?

Also, I guess it’s possible that it is arthritis (I’m in my late 60’s), but the tech doing the scan seemed to think it was cancer...kept saying he needed more pics and that it is definitely a hot spot.

[Dan59 in reply to GolferDan]

I think with a reduction in psa if there was even bone mets they would likely decrease, Also we do not know definitively if they are bone mets, they only way to tell definitively is with a biopsy. You now have a baseline at U of M. You mean the tech, who is really just the picture taker actually had a comment on your scans, never heard of that.

Take a deep breath, wait for your lab results, and go from there, try not to worry, believe me I know it is hard. I still find it an unlikely place , the elbow. See what the MO says. Myself I never trusted all they thought they saw and thought was cancer on the bone scan, and after all this time I think that may have been right some of the time. The main thing is you have no scan from the same Hospital to compare it with to even know if it is something new.

I wish you the best Dan

[dorke in reply to GolferDan]

Dan,

If I were you, I would push very hard to get a better scan like PET/CT PSMA Ga68.

Only a sensitive scan can remove any doubts.

I'm surprised it isn't yet the standard in the US.

I remember Tall Allen mentioning in one of his posts which clinical centers do PET/CT PSMA.Maybe you should contact him

[Hidden]

Who is your MO at U of M? Try and hook up with Dr. Caram. She worked under and with the best prostate cancer doctors in the country before they left U of M for greener pastures. She keeps up on all the latest procedures and specializes in prostate cancer. Final note, forget what that tech said, he/she is a tech,not a doctor for a reason.

[GolferDan in reply to Hidden]

Thank you, you were right about the tech. I asked the doctor about it and he said that prostate cancer doesn’t go to the elbow.

How long have you been going to UofM? Good experience? I was debating between there and Salone Kettering, but decided I wanted to stay closer to home.

I’ll see if I can get an appointment with Dr. Caram, thanks.

[Hidden in reply to GolferDan]

I have been going to U of M for 3.5 years. Couldn't ask for better treatment. Dr, Caram also works nearby at the Ann Arbor VA which enables me to get my meds at no cost. It's simple to switch to Dr. Caram, just call the cancer center and request a change to have her as your MO. They will accommodate you. Don't let her youthful appearance concern you, she is at the top of her game. Msg me with your current MO at U of M please.

[GolferDan in reply to Hidden]

Dr. Reichert

[Hidden in reply to GolferDan]

No! Zack just finished his fellowship with Dr. Smith. Caram and Smith are the best two Prostate cancer specialists there. Be careful, very careful.

[Lombardi24]

Hot spots within scans can be arthritis. The rad onc always calls the ones in my shoulders...wrists...and ankles hot spots but they are arthritis

[Cynthgob]

Do they do an Alk phos blood test? That’s the test that shows bone activity. My husbands mo always mentions the fact that it is dropping as very important. Or is that only important once chemo has started?

[GolferDan]

Thanks for all of the replies. You were right...elbow ended up not being anything concerning AND PSA is down to 2.8. Doctor is thinking of doing one more shot of Lupron in August and if numbers still look good 3 months after that he is thinking of taking me off treatment for 3 months before starting up again. Apparently this helps the Lupron work better and for a longer period of time without resistance. Anyone else following this protocol?

Wishing everyone a wonderful day. After the wonderful news I got yesterday I’m headed to the golf course today to celebrate.