Bone Scan

[Granica4818]

No question today just coming on here to feel some comfort. My husband is having a Bone scan today after three months of rising PSA, doubling each month , but still relatively still low at 0.31. We are nervous. CT scan next week. We will go from there. No Dr appointment until Dec 5 and I guess we will go from there. The waiting until it is posted is the worst.

[Mrtroxely]

Hope you both ok.Sounds like you've done some research which.

Its probly lots fear and worry for you both.

I been with my partner nearly 5 years.

It's crap for me, it's crap for her.

Some how we can find ways to enjoy what's on offer when it's on offer.

🤞🤞🤞

[tango65]

It is unreliable to calculate PSADT with very low values of PSA. I believe PSADT should calculate with PSA values of 0.2 and higher.

[Granica4818 in reply to tango65]

his is 0.3

[tango65 in reply to Granica4818]

He is 0.3 now, so you could see what happens with the PSADT going forward.

I wish you the best of luck with the treatment.

[Tall_Allen]

waiting is hard. Let us know.

[Kaliber]

wishing you the best returns on your tests … that waiting anxiety is the worse ( just had mine a week and half ago ) . Hopefully things will be great or even at least pretty good for the holidays. Keep us posted.

❤️❤️❤️

[babychi]

Can you try living in the now? I understand it is not easy but we only have the present moment🌺

[Jacie356]

Waiting is the worse! We are 4 1/2 years into this journey and waiting is the worse. Good thoughts to you!

[Fightinghard]

enjoy today and live it. Try not to worry about the future. A ton of worry will not make an oz of difference, but can ruin your chance for a great day today.

[Granica4818 in reply to Fightinghard]

Thank you

[TJGuy]

So RP followed by ADT followed by/ with Salvage radiation. Now off ADT and rising PSA. 0.3

Bone Scan and CT scan awaiting results.

So good news will be that both scans are negitive. Then you'll be able to get a PSMA scan as many Insurance companies are requiring those two scans before a PSMA scan.

In reality PSMA is much better and should be replacing those scans but they cost less so insurance companies look for any way to save money and drag things out as well.

You should be able to get a PSMA scan by the time the PSA reaches 1.0

Most PC can be found by a PSMA scan by the time PSA reaches 2.0

Most PC patients express PSMA a percentage maybe around 10% don't and the PSMA scans are not effective for them, they then use Axumin or Choline scans.

So you need to wait for the PSA to rise.

Once you have a definitive scan you'll be looking for treatable oligometastatic PC. Just a few indications of cancer usually defined as 5 or less, but up to 5 is not a firm rule.

You then want that reviewed by hospitals that have multiple options to attempt to treat.

These may be speciality cancer hospitals like Dr Kwon at MAYO clinic in Rochester MN, or other well regarded cancer hospitals.

Scheduling at some of these hospitals might be performed three months out from when you request it so if you are at a small hospital or rural hospital you might want to make contact with a cancer hospital who has many options and experience with those for potential treatment well ahead of time.

If your in the US it's open enrollment time for health insurance you should make sure you have the type of insurance coverage where you can go to any hospital in any state in the US (a PPO plan), not a HMO plan.

BCBS has "BlueCard" and it's called exactly that. So a PPO plan with BCBS will file through their states BCBS plan and if they do you should be covered.

Check this plan out through a reputable independent insurance broker that your hospital can provide contact info for. You can be on your own plan or your spouse plan if necessary to get a good plan that works for you if possible.

There are lots of tricks you'll never know about on health insurance plans like ACA plans that only your agent knows about to get your coverage at better costs, check with a broker.

ACA plans are totally county specific so what's avaiable to you depends on the county you live in. You might have to go off ACA to get a PPO as I have needed to do when the plans available changed for my county.

Good luck.

[No_stone_unturned in reply to TJGuy]

wonderful reply TJ. I’m going through the same thing right now, 3 mo of psa rising, still sent me for a bone scan and cat instead of psma. It’s been a week and still no report from the pathology. In the words of Tom Petty: “the waiting is the hardest part” 🎤

[TJGuy in reply to No_stone_unturned]

Yes all the insurance companies have rushed to hire a company like AIM which reviews all the pet scans prescribed by your doctor.AIM and companies like it do a lot of denying of scans, they override your doctor and have a list of must have/for before they approve your scan.

Only your doctor can contact them, patients can't. They usually put these bone and CT requirements on before you can get a scan. They do that because a pet scan in the US can run into the twenty plus thousand range. CT and bone scans are cheap.

They are trying to slow the number of scans and push them out and off.

When you appeal they will take every last day available to them. They actually waited to the last hour to deny a PET of mine. I had cancelled my trip and appointment in advance, but they waited until just minutes before my scheduled scan time to deny it.

Only in America.

[No_stone_unturned in reply to TJGuy]

My first job out of college was working the front lines of an hmo, I know it well. The very nature of insurance is to deny whatever they can get away with. I was in charge of meeting with the walk ins, mostly terminal patients who reached their lifetime benefit. It was the most horrible job I ever did.

[Wife32]

Scanxiety is a real thing. Honestly it is our most challenging time! We try to keep busy but it just hangs over us.

We have found small things that do help like hanging out with family/friends, or doing something to tire us out physically like a hike, swimming, or biking. But mostly we just wait.

A good friend told me to try to “stay where your feet are” and not look ahead or back. Hoping and praying that you can enjoy some time together as you wait on the results!

[SteveTheJ]

Everything is a point in time, all those blood tests and all those scans. Worrying about them won't help.

[Ian996]

PSMA PET scan is where you should go next

[maggiedrum]

I'm having a little bit of scan anxiety, both for a PET scan and a bone scan. My doc put it in on an "urgent" basis but that still means a six week wait for an opening. He told me two weeks ago that my PSA is doubling 15.7 and doubling rate was 5.2 months. My PSA was 15.7. I am not on any therapy since I am intolerant of ADT and not eligible for any other therapy since I was hormone sensitive. I am therefore not classified as castration resistant.

I had multiple lymph nodes with PSMA activity from moderate to mild - 4 in the ilia area, "multiple" in the periaortical area, and one at the supraclavicular area. My doc will not order another PSMA. He says it will not really be helpful (which I am not sure is true) and that my insurance is most likely to deny it. The PET scan will only show soft tissue tumors and the bone scan is to see if it is in my bones obviously.

At my previous "routine" consultation 6 weeks ago, which he moved up from every three months. I am on a "wait and see" plan right now. There will presumably more to see with the scans. My consultation with him two weeks ago was less than half the time as usual since they sent in a MD Fellow on rotation (going in to lymphoma cancer, not urinary) who asked me the usual questions about incontinence, sleeping, eating, etc. I am asymptomatic at the moment. Then after more than half the regular consultation time allowed she brings in my doc who basically just tells me my new PSA and that I should have new scans on an urgent basis. He did not tell me my doubling time nor any other reason. I guess I was just assumed to figure that out from my rising PSA's.

The last consultation he told me that despite the rising PSA's and my lymph node metastasis that I shouldn't worry too much. He even said that the lymph nodes might have been positive before I even got my radical prostatectomy almost two years ago. I don't have any reason to believe that is correct. I have not heard of that being proven in any research or other evidence. I do see how that might be possible since I was Gleason 4+3, out of capsule extension, seminal vesicle involvement, and noted aggressive type of adenomas in the prostate sector pathology report (all quadrants).

As I have posted several times on here, I did one course of Lupron Depot (three month rated). I had severe unmitigated depression for 11 months after that and did not have a second course. My depression has always been treatment resistant. Lower testosterone put my depression on hyperdrive.

I understand the OP's anxiety for his upcoming bone scan. I can't back this up with any solid knowledge but I suspect your very low PSA and doubling will not mean you will see any affected bones. I wish you luck on that of course, and with any future scans and PSA's.

[TJGuy in reply to maggiedrum]

PSMA scans will show PC in lymph nodes, soft tissue, and bones. It is more sensitive than a bone scan. You should find PSMA sensitive PC at lower PSAs than you would on a bone scan. So that might mean sooner and while smaller.

[maggiedrum]

The only tissues where the PSMA showed hot spots was in my lymph nodes as I stated. The CT scan confirmed what tissues were affected. No bones and no other soft tissues. My PSA at that time was 9.53 in June. My PSA a couple of weeks ago was 15.7. I had other rising PSA's in between. Six weeks ago it was 13.3.

When it was 13.3 my oncologist said not to worry yet as the rise up until then was not concerning enough to need additional scans. I won't get another PSMA scan from here on out. He doesn't think it would be worth the fight with my Medicare Plan D insurer and wouldn't really be all that useful to be that sensitive since radiation wouldn't be done since the mets are scattered all over the place.

The concern would be it spreading to bones and possibly to other soft tissues (as tumors). The only treatment I would be eligible for would be systemic chemo. Not a great situation.

So while the PSMA scan is much more sensitive it would be of limited value from what I can see and obviously what my MO thinks. I am waiting to see if one of the PSMA radiation trials were to open up for my situation. Right now none of them do per their stated exclusion criteria. I would be excluded for the number of mets I have in different areas and other criteria.