Dexa Results

Lots of info and experience here with Osteoporosis and meds. Check under the heading Osteoporosis and choose a thread to read.
What is your physician s rationale for starting you on prolia. My experience on this bone journey that is so important to do your own research. Arm yourself with lots of questions when you whichever provider you have chosen. Make sure you not only ask about a plan for medications and sequencing of the drugs is very important. It seems that the current thinking on sequencing drugs is to start with an anabolic such as tymlos, forteo or evenity. Of course we are all individuals and I am not a provider.

Hi ga , I'm still on ADT after 15 months ,heading to 2 years,. My hematologist wanted a Dexascan after a year. My results were worse than yours .They want me to have a Reclast infusion the same day as my next 3 month ADT shot. I'm stressed over the side effects...good luck to you.

ga73ds,
loss of testosterone with ADT is a notable cause of osteoporosis, comparable to the loss of estrogen in women. Some men take medication to prevent loss as soon as they start androgen deprivation therapy.
At-2.2 you are getting close, -2.5 being the cutoff to osteoporosis.
You can rebuild that bone there are some amazing medications, and the resumption of testosterone maintains it well. My short list in order of preference:
Forteo and Tymlos are anabolic medication that remodel bone. They remove damaged bone and replace it with bone that is integrated in the bone. I think it is the best bone, built the way our bodies renew bone throughout our lives.
All the bisphosphonates: Reclast, Zometa, Fosamax, Boniva Alendronate. The don't repair bone, but prevent older bone from being carried away. They increase your T score by collecting older bone. They have been the mainstay of fracture prevention until 2003 with the approval of Forteo.
The newest drugs are monoclonal antibodies. Evenity and Prolia. They add bone quickly. It isn't remodeled bone. They don't remove older or fissured bone, but provide quick bulk to your bones. Which can be extremely helpful if you are about to fracture, which, (by the way) you are not.
If your cancer leaves you at risk for bone cancern metastasis , consider Zometa or Prolia. If you've had somatic testing of the tumor, you'll have a better idea of your risk. If you haven't had Decipher or one of the other somatic tests, your biopsy material is still available for testing. You only have to request it though your doctor.
The doctor suggests Prolia because it is the best for preventing cancer metastasis initiation and advancement.
It is a medication I like least because of the possible side effects ( some people have no side effects) and because it can be devastating if you have to quit the medication. It is also the easiest medication to take--an injection every six months.
I like that your doctor is proactive and understand perfectly your reluctance to take Prolia.
I have a few scattered thoughts.
Sometimes testosterone resumes rapidly. If yours does, you will see the earliest effect in the spine where you need it the most.
You were on orgovyx--the best ADT for fastest recover of testosterone.
If you had radiation, some of your low number may be that there is some fat infiltration in the marrow which lowers scores. That can resolve on its own.
If you have lost height. I'd want an MRI of the spine, especially thoracic. Dexa doesn't measure thoracic because of the ribs. But the thoracic is almost always lower T score than the lumbar, and there may be changes there that could influence your decision.
If you have any questions, I'm happy to respond from my laypersons perspective.
Oh, but you are going to start feeling good again with the weight of cancer out of the way and the ADT out of your system. Congratulations.

I'm not at all sure I'm going to "feel good" about my cancer.

My cancer was/is 4a, Gleason 9, Decipher .99 I had prostatectomy then radiation and ADT. My PSA has ben < 0.01 for over 2 years. But now that I'm off ADT, it's got me worried.

I'd say my cancer does leave me at high risk for metastasis.

I've got labs and MO appointment next month. I've got a lot of questions. Increasing T levels and possible increase in PSA, and bad side effects if I start some kind of bone treatment are all worrisome.

Increase in testosterone will normally increase your PSA.
If you are at risk for metastasis, you might best consider Zometa or
Prolia--both effective, and protective. Side effects are a worry.
They may have wanted you off ADT in order to get a clear PSMA(pylarify)/PET
scan.
https://jnm.snmjournals.org/content/64/11/1730#:~:text=Androgen%20deprivation%20therapy%20(ADT)%20is,and%20affecting%20PSMA%20radioligand%20therapy
.
It's good you are gathering your question. Wishing you the best.

As long as my PSA is < 0.01 and not increasing ( as has been the case for 2 years), why would they be wanting a PET in the first place?

ga73ds,
If they order a PSMA/PET it could be simple diligence, good patient care.
If there were any reason to suspect metastasis it would be best tested by a PSMA while you were not taking ADT.
They may just want you off ADT because of side effects, one being the bone density. You may not need ADT.

While it is great that you are pursuing these questions, it seems a little unfair that you don't know why you were taken off Orgovyx. Your doctor knows. You might call his office and ask his nurse to relay that information to you. There are doctors notes that should be available to you.

I'm the original poster here.

A follow-up question-- why would my Dexa results be so different between sites? -2.2 in the lumbar spine vs only -1.0 and -1.3 in the femur/hip.

That's not unusual. I was worse than -3.0 in my spine, but my hips were never worse than -1.7.

I think hips tend to get more "action" in our daily lives than the spine, so maybe that helps with bone density?

I have the same question. I just had a new Dexa and my Lumbar Spine was -1.9 (two years ago it was -2.6). My femoral neck was -3.4. I'm wondering what the difference is; could it be error? I keep rejecting my doctor's advice for Prolia, but am worried about the femoral neck t score.