My husband (GL 9, several bone mets-diagnosed 8/19-Casodex, Eligard, Zytiga/prednisone, plus radiation) had a bone scan today, along with routine three month blood work and an Eligard shot. He was scheduled for a CAT scan as well, but the MO postponed it as he was recently vaccinated for Covid, and the vaccine can apparently cause lymph nodes to appear cancerous.
PSA remains < .1 and testosterone < 10. No significant abnormalities in bloodwork (far as I can tell), with the exception of ALP, which has been increasing since husband started Zytiga and has jumped from 111 to 131 since his last test. Fortunately, we got the bone scan results today. They seem to be pretty positive, but I need some help interpreting.
FINDINGS: Images demonstrate no new areas of abnormal increased tracer activity in the skeleton to suggest progressive metastatic disease to bone. [So far, so good.]
No recurrent focal increased tracer uptake in areas of treated disease including the posterior left iliac, posterior right fourth rib. [What does that mean? Have the mets disappeared, or are they still there but stable?]
Stable limited residual activity T7. [What does that mean?]
Activity present in both kidneys and bladder. [Is that good or bad?]
No abnormal soft tissue activity. [Sounds positive.]
My biggest area of concern at this point is the increasing ALP. Why is this happening if there is no visible progression in bone mets (I know that ALP can also reflect liver and bile duct problems)? The MO has refused to order a bone-specific ALP test. Husband does have primary hyperparathyroidism (benign tumor on a parathyroid gland), which can cause increased ALP, but I would think it would be more stable.
Thanks for any insight that you can provide.
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Dett
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Dett...Firstly a bone scan does not and can not tell for sure if the lesions being seen are truly bone mets or healed mets or inflammed area. That is why bone scans are called NON Specific.When the radiologist writes "activity visible" he/she means that there is lesion being seen but whether it is an live mets or not..he/she is unable to discern. Only Ga68 PSMA PET CT can with certainty tell whether the activity seen is a live cancer cells or other things.
Now, you say that ALP has gone up from 111 to 131. after starting Zytiga. This bump in ALP can be due to liver, intestine etc. but lets assume it is coming from bones. It is not uncommon for ALP to flare up (called ALP bounce) when a treatment starts working. Why ? Because the bone repair is accelerating to mend the damaged bone tissue.
So What to do ? Check ALP (better Bone ALP) every month or sooner and watch the trend. If ALP starts falling down ,it means treatment is working and bone lesions are healing fast.
If ALP (Bone ALP) continues to go up for next 2 or 3 months, then it means bone mets are growing. If you are in USA, there are private labs who charge about $60 to do ALP ISOENZYME test which separately tells numbers of Bone ALP, Liver ALP and other tissue ALP. Otherwise total ALP is sufficient to know the upward or downward trend.
BTW..PSA 0.1 and T less than 10 is a very good news.
Thanks for the explanation re bone scans, LearnAll. For better or worse, my husband started Zytiga last August (when ALP was 80), so I don’t think he’s having an ALP bounce.
Let me correct one statement you made. “Only Ga68 PSMA PET CT can with certainty tell whether the activity seen is a live cancer cells or other things”. That is not true. On My first PSMA scan at UCLA I was told they found a spot that was cancer. A week later they took another look and determined it was urine-not cancer. Oops. On my most recent scan there, They found a lesion on my L-5 with low light up and thought it was probably cancer but they were not positive. After after an MRI and two more opinions they were pretty certain it was a met but still not positive. I go to radiate it Monday. Just sayin...it’s not as fool proof as you imply.
Congratulations on the excellent bloodwork and scans. I don't see what you see as a problem with ALP - it's normal.
My main question is why his oncologist didn't go over this with you and address your questions. I think it's important to have a good ongoing relationship with the MO, and if you aren't getting good answers from him, maybe you should find a different MO.
"No recurrent focal uptake..." "No recurrence" is exactly what you wanted to hear.
"stable residual activity at T7" means that he probably has some spinal degeneration that happens to all of us as we age. Remember, bone scans are not specific for cancer.
"...kidney and bladder" that's where the bone scan technetium indicator is excreted.
Thanks, TA. The MO never goes over test results with us at the time of the tests; she always waits 3-7 days until a previously scheduled three month appointment. I don’t like this, but I assumed that it was normal procedure. In fact, we originally learned that my husband was metastatic from looking at his CT and bone scan results online, not from the MO.
I’m honestly not sure how I feel about our MO. I ask a lot of questions at our scheduled meetings (all online now), and I probably drive her crazy. She does her best to answer, but I frequently feel like I’m missing something because of language differences. She has a real reluctance to prescribe additional tests (e.g., BALP) for some reason. The MO is a very nice woman with a good resume, but I always get the vague sense that she feels like we’re marching inexorably towards death. I’d probably prefer a more dynamic, proactive MO. Is there anyone you recommend in the DC metro area, preferably Northern Virginia? BTW, my husband has no interest in exploring the intricacies of PC; he just wants to live his life, which is why I’ve been more aggressive in dealing with these issues.
Regarding ALP, the lab our MO uses has an upper limit of normal of 106. Husband’s ALP has risen steadily from 80 to 130 in the last eight months. I know this must seem trivial to a lot of stage four men, but I’m concerned about the upward trajectory. And I don’t understand why this is happening.
I don't think an MO should release any data to patients unless there is at least a phone call. It obviously creates anxiety. Online meetings are just not the same. We all easily miss the body language cues that we use subconsciously. It is too easy to misread the other person.
Some of the best MOs in the world are at Johns Hopkins. Unfortunately, Antonarakis is leaving, but that still leaves Denmeade, Carducci, Eisenberger, and Pienta.
The rising ALP may be a reaction to Zytiga. Discuss cutting the dose to 750 mg/day to see if it comes down. ALP can be 5 x as high without any real signal of liver damage, so it is not critical.
Thanks again, TA. I really appreciate your feedback. I assumed that you would recommend Johns Hopkins, but the names of specific docs is very helpful. We both dread the 2+ hour drive to Baltimore (traffic is absolutely awful here pretty much all of the time), but we may need to bite the bullet. Re ALP, I’ve become highly sensitized to this value based on the feedback in this forum, so I find it hard to figure out when to panic.
During Covid, we have actually found benefit in seeing the physician’s face online instead of masked in the office ( for consultations. ). Also two of us can listen versus in-office which has been restricted to patient only. ( or via speaker phone )
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