My first met to the bone- now what? - Advanced Prostate...

Advanced Prostate Cancer

21,178 members26,439 posts

My first met to the bone- now what?

KJMinPhx profile image
9 Replies

Diagnosed almost 2 years ago with Gleason 8s and 9s on 12 of 15 samples, and been on Lupron and Zytiga +pred ever since. Scans showed extensive lymph node involvement but nowhere else. Since treatment, always had negligible PSA including 3 weeks ago. Yet recent PSMA scan from UCLA showed a met to lumber spine. Now what? How could I grow a met when I remain hormone sensitive with no PSA? Does this mean Neuroendocrine? I have never had any type of chemo- does this mean it is time to start? I don’t want to do chemo yet because I work full time and have to keep working at least until June - risks of delay? I see my Mayo MO next week- what should I ask him?

Written by
KJMinPhx profile image
KJMinPhx
To view profiles and participate in discussions please or .
Read more about...
9 Replies
LearnAll profile image
LearnAll

If this is just a solitary met on a lumbar vertibra..may be they can ZAP it with radiation.

GP24 profile image
GP24

Single bone mets on a PSMA PET/CT are often false positives. Just observe until the next PSMA PET/CT, it may be gone then.

GP24 profile image
GP24 in reply to GP24

This study reports: "However, solitary PSMA-avid lesions in the ribs should be interpreted cautiously as they may represent false-positive findings."

ncbi.nlm.nih.gov/pmc/articl...

Tall_Allen profile image
Tall_Allen

I know several men who have continued to work throughout chemo treatments.

I don't know why so many people on this forum seem to think that neuroendocrine PCa is the only type of PCa that doesn't express PSA. In fact, most of the subtypes that don't express PSA are not neuroendocrine. If big enough and accessible, IHC of a a biopsy of your lumbar metastasis can tell you for sure.

You may have a type that doesn't express either PSA or an AR. This is known as "double negative." There are a couple of clinical trials you might consider:

clinicaltrials.gov/ct2/show...

clinicaltrials.gov/ct2/show...

How? Can be explained by researching and asking your medical oncologist about micro-metastases.

GD

PS.... I did chemotherapy every week for six weeks with three cycles over 180 days. I worked except on infusion days. This was in 2004. The way chemo is given today, you should have no problems every 21 days, except for the infusion day. Good luck. You can do it.

dhccpa profile image
dhccpa in reply to

How are you doing since chemo? Long time now.

in reply to dhccpa

I have been most fortunate. Search my profile and you can see the trial regime I had. Short story: last Lupron injection was in a February 2010. A year later started low dose (4mg rubbed on twice a week) testosterone replacement. No other medicine nor supplements (never have taken supplements) since 2010. Last PSA two weeks ago, <0.1, T @ 550 or so.

The point is systemic treatment for the mets and micro-metastatic unseen cells traveling in the vascular and lymphatic system. There are several new drugs out which I really don’t know much about. Most are hormonal and do not kill the unseen bastards. Don’t fear chemotherapy with hormone therapy. You should still be able to work. However, this is a further discussion point with your medical oncologist.

Best of luck,

GD

abmicro profile image
abmicro

One false positive is a rib fracture due to over-use of bone building bisphosphonates. Dont always assume cancer caused it. Take a biopsy.

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

At this point take baby steps not giant steps........

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 11/23/2020 10:04 PM EST

You may also like...

Bone met biopsy - what to expect?

an MRI scan to check eligibility for phase 1 trials. My husband was told that if the scan shows an...

Chemo not working for bone mets

reviewing the CT scan showed that the chemo was not effective, spinal bone mets still exist and...

What do most recommend for bone Mets treatment

had a pet scan done yesterday and it looks like he has multiple multiple areas of bone Mets it’s...

Bone Mets and rising PSA

mannubrium and thoracic and lumbar spine besides the pelvic area. His PSA rose from 373 the end of...

New Bone Mets Throughout Skeleton

I had a bone scan done and the results show new bone mets throughout my skeleton. My PSA has been...