confused: I was diagnosed with pc in... - Advanced Prostate...

Advanced Prostate Cancer

21,056 members26,262 posts

confused

Izzysdad profile image
10 Replies

I was diagnosed with pc in 2020. Psa was 4.5 and Gleason 9 disease. MRI said no worrisome bone signalling whatever that means. Had surgery but psa persisted at 1.7. Path. Report showed regional spread but 3 lymph nones removed were clear. Eligard shot, Casodex for a month and 33 EBRT treatments. Psa dropped to undetectable with the addition ( immediately after radiation ) of Erleada. Remains the same to this day. Still on both meds. My question is about the scans. Couldn’t get a straight answer from my MO. The bone scans talk about stable sclerotic focus, differential diagnoses, bone island, echondroma but never come out with the words bone Mets. The last contrast enhanced CT said “no evidence of metastatic disease or regional recurrence”. The bone scan, same day, continued with the same vague language. My RO had said it was probably cancer and then changed that to 50%. Did the radiation anyway. I thought these scans made diagnosing bone Mets pretty easy. Can’t get anything better in my province. Doesn’t appear anything has shrunk/ changed after 3 years of treatment. I expected some shrinkage. Blood tests have always been in normal range. Are these scans useless?

Written by
Izzysdad profile image
Izzysdad
To view profiles and participate in discussions please or .
Read more about...
10 Replies
Tall_Allen profile image
Tall_Allen

Bone scans don't show metastases, they show spots of bone overgrowth. Bone overgrowth (sclerosis) can occur for any number of reasons - arthritis, broken bones as a child, bone injuries of any kind.

in reply to Tall_Allen

If bone scans don't detect mets, then how did they determine I had widespread bony metastasis? But after 3 years of ADT, last bone scan March 2022 showed nothing

Tall_Allen profile image
Tall_Allen in reply to

One needs more than only uptake on a bone scan. One needs an MRI or CT correlate. Metastases that disappear from a b one scan after taking ADT is a good way of diagnosing metastases.

Izzysdad profile image
Izzysdad in reply to Tall_Allen

Mine areas haven’t changed in 3 years. Maybe something else?

Tall_Allen profile image
Tall_Allen in reply to Izzysdad

Appearance of metastases follows an exponential curve - very slow at first, accelerating later.

Slow early growth of metastases
Izzysdad profile image
Izzysdad in reply to Tall_Allen

Guess my next scans will be interesting. Thanks for the info.

Izzysdad profile image
Izzysdad in reply to Tall_Allen

Thanks for getting back to me. My MO keeps talking like my fate is sealed. So far my urologist has said I’d live to be an old man. Pretty safe statement because I was 69 at the time, My RO said 5-10 years. He said he hit the suspicious spot so hard,he didn’t think any cancer could survive. The MO said 3-5 but then added probably more than 5. Seems to be some question if radiation can kill bone Mets at all. They all are looking at the same reports but can’t seem to agree. Been quite a roller coast ride so far. I don’t know if the radiation did anything because they put me on ADT right away. I feel like a walking medical experiment.

Tall_Allen profile image
Tall_Allen in reply to Izzysdad

Radiation can certainly control the metastases you can see. But for every met you can see, there are thousands more you can't see.

TryGuyCP profile image
TryGuyCP

Regular MRI, PET/CT, bone scans may now show mets or be vague just like you descrive Ask for PSMA scan.

I had similar experience:

My yearly PSA check went from 3.11 in Feb. 2020 to 5.79 in Feb.2021, MRI pointed at prostate. Biopsy came up with Gleason 4+5=9 diagnosis of aggressive PC.

3/08/2021 NM Bone Scan suspect T2: Focal uptake at the posterior aspect of the upper thoracic spine approximately T2. On the prior CT there is a 6 mm sclerotic focus in minimal degenerative change. This lesion is indeterminate on bone scan as both bone islands and sclerotic metastases can demonstrate radiotracer uptake. The CT features where it is smoothly bordered are suggestive of a bone island. Recommend attention on follow-up imaging.

5/11/21 my urologist performed robotic radical prostatectomy and pathology report showed edges clean so we hoped that was the end of it and I'm "cured".

8/20/21 Follow-up 3mo PSA came up still high at 4.2 so I went to Stanford uro-oncology where they arranged couple PSMA scans (at the time Oct.2021 it was still as clinical trials) and only those more sensitive scans finally conclusively pointed at little spot in T2.

12/3/21 PSA. is 7.9 I had gone through CyberKnife procedure at Stanford and that stopped progression in T2

01/18/2022 PSA dropped to 4.2

02/22/2022 PSA dropped to 2.6

02/23/2022 PET/CT PSMA finds Focal PyL uptake within the known treated T2 vertebral body sclerotic lesion and multiple bilateral rib lesions compatible with metastatic disease. Now that I have multiple mets in ribs its time for systemic therapy and my MO recommends we start ADT

03/07/2022 Injection of Degarelix 250mg. this quickly brings PSA down to < 0.04

04/04/2022 Move on to Lupron 6mo injections

follow up PET/CT PSMA and MRI scans in August 2022 show improvement (less visible) of old spots and no new ones

After 18 months on ADT (only lupron) PSA stays < 0.04 so my MO lets me go on vacation from ADT.

My last 6mo Lupron shot was in March of 23 and next one would have been in Sep. but will be skipped. the plan is to stay of any treatment till PSA starts to rise. then do another PSMA and go from there.

j-o-h-n profile image
j-o-h-n

Donations needed!!!

This is a receipt for a donation to Malecare.

Malecare is a USA based 501c3 nonprofit corporation. Our US Tax ID number is 13-4058-7382 .

No goods or services were exchanged for your donation.

Please feel encouraged to contact me directly with any questions, comments or suggestions.

Darryl Mitteldorf

darrylm@malecare.org

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 08/31/2023 4:59 PM DST

You may also like...

Confused!

doing well My dad was diagnosed September time, Gleason 9 (4+5) with solitary bone metastasis. He...

Confusing news from oncologist

with a PSA of 126. After 2 rounds of chemo, his PSA rose to 153, we saw some increase in his bone...

PSA Recurrence - confused on next steps?

PET/CT scan and MRI (after next PSA test) in the next month to try and find source of rising PSA....

VISION trial confusion.

infusion PSA dropped from 375 to 105. Very excited about these results but then my CT scan and bone...

Still confused on next step

12/15/2018, PSA 60, GS 3+4, ADT eligard, firmagon, casodex, 6 month PSA=0.1, 8 month=.9, off...