I'm curious to know how often people are getting imaging done for their bone mets. Are people getting them even if they do not suspect progression, have no pain or do not have rising PSAs? Let me know what you are doing and also if there is any published guidelines regarding this.
I'm coming up on one year from diagnosis and wondering if I should have another bone scan and CT done even though right now my PSA is low and stable. It doesn't seem like it's necessary to me, but would like to know what others think.
Just saw MO Monday and had whole body bone scan along with ct scan to check for disease progression.
I get them when I have new symptoms (pain) or as a check on current treatment.
Just decided to take a “break” from mitoxantrone chemo after 9 treatments but also had scans prior to starting treatments.
I wouldn’t see the purpose of them if my psa was stable and I didn’t have any new symptoms but in the 4 years since my diagnosis I haven’t had much luck with lasting (working) treatments other than xtandi.
Until recently, I got them only when the result might change my therapy. Now that I’m on Xofigo, I expect to have one immediately after the sixth shot to check progression/success.
With advancing disease , I usually get both ct and Bone scan every 6 months. In your case at one year it may be a good idea to get a baseline on those scans now . They are most likely to be reduced with your reduction in psa. And decide future scans from there.
Monthly PSA along with full CBC, Alk Phos, and blood chem , Full CT of neck, torso, abdomen, and pelvis every six months. Full body Nuclear medicine scan for skeleton. Annual Bone density.
I had a bone scan before entering a clinical trial, but not since.
I would think that the PSA test, which is quick, easy, and non-invasive, will generally reveal any disease progression (though there are possible exceptions.)
I'm curious about whether anyone has gotten a first warning of anything from a bone scan. What I mean by that is, have your PSA's been fine but the bone (or CT, MRI, or PET) scan revealed a nasty surprise? What happened?
I received a surprise. PSA was .579 but bone scan revealed metastasized PC. I've had two full abdomen CT scans since diagnosis in July 2017 and expect these to be at least once every 6 months (or probably 3 times a year). A second opinion Oncologist stated recently that the Alkaline Phosphatase test is usually a good indicator/ proxy for scans. Basically he implied that the outcome of that test can indicate if a (much more expensive) CT scan is needed.
I will get back to you once I get a copy of that particular analysis (it was done five months ago). However, I seem to recall it was around 4000. My most recent analysis (2 weeks ago) had Alkaline Phosphatase at 455 (3 weeks earlier it was 1115). PSA in the same test was 0.69.
I am in the land on Lincoln to get a C-11 Choline Pet Scan tomorrow. Had a Bone scan last year where they found the rib met and a CT earlier this year. Kind of nervous about tomorrow as it has a good chance in changing the treatment plan. Liver enzymes up , so concerned about that as well. We shall see. Took a vacation from Lupron and PSA went back up to 1.99, the reason for the bone scan to see how many mets I am dealing with. Radiation went well just after diagnosis, so may see that again.
12/14 Husband Bob had back pain for 1 week, PSA began to rise, Dr. ordered CT scan & BMD Scan, result 5 Mets to Spine. Started 28 days Cosudex & 9 months on Lucrin. 7/15 PSMA Scan & CT scan, showed 1 small activity in Spine and none elsewhere. Went off Lucrin, then 1/17 PSA started to rise, PSMA Scan revealed lymph node Mets & 1 lesion in Sternum. 2/17 started Dr. Snuffy Myers protocol, Cosudex 50 mg & Avodart 500mg Daily & Lucrin injection 3 Monthly (all indefinitely). Will not have another scan unless PSA starts to rise.
Best wishes on your journey,
Lee
Gregg, I have had 21 nuclear bone scans abs soft tissue CT scans since 2003. The last was a year ago.
One by Urologist as a base line maker on diagnosis; one before seeds, one before IRMT; one six months later when PSA exploded; one at start of chemo trial for base line marker. One six months later at conclusion of chemo. Then 15 during the next five years. And finally last year to confirm that I no longer had any sign of cancer.
The frequency helped the research Medical Oncologist determine my status on disease progression as he tracks the results of my trial.
I just breezed through the article you attached. And, I ask, what can we do? As a cancer patient, I want to know the extent of my disease, as soon as possible. But, there's other things more important than radiation poisoning. It's the poisons we eat. I don't want to go off on a tangent here, but, we as people have to do something to stop Monsanto and Syngenta from feeding us good looking garbage. My son grows our veggies, and soon to go longer in the year with mobile greenhouses.
And, what of the bees? I find more important things to think about than my dreaded disease, and I find no comfort in what I discover.
J
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You asked "what can we do?" I think the answer to that is that we weigh the cost against the benefit in all cases. As indicated in the article, there is a cost to getting radiated. It may not be significant for many people, but that has to be evaluated on a case by case basis. In any case we should not ignore it. Secondary cancers caused from radiation take time and many of us will not have that much time so it could be insignificant. For many people, the cost might be small, but the benefit might be nonexistent. I can't see taking any additional risk for something that has no benefit. The bottom line is if you need the scans by all means get them. But if you don't need them, don't expose yourself to unnecessary radiation. Personally, if I'm exposing myself to radiation just to give myself reassurance and not to make a treatment decision, I'd rather find a less destructive way to reassure myself.
This doesn't have anything to do with a healthy diet. I agree that we should also avoid eating foods that have chemicals, hormones, GMOs and other unnatural things.
I totally agree. We raise much of our own food and meat, organically fed. My granddaughter loves bees and does done lots of studying on the way neonicotinoid residues resulting from their previous widespread use has negatively impacted wild bees in agricultural landscapes. All of the pesticides we have banned are used somewhere else, so that they don't lose money. The world is in a bad way and until more people start realizing how dangerous GMOs, etc are, and demand that this stuff be discontinued, companies will continue to create this crazy stuff can continue to call it food.
Yep. Our Dr at UCSF, who did the brachytherapy said too many people ask for these tests just for reassurance..but that they cause their own problems/cancers.
Thanks for pointing this out. I don't think reassurance is a good enough reason for me to do a test. If I already know what my treatments are going to be, I don't see the point in any test.
I appreciate everyone who has contributed to this post. I see in the responses that there have been a lot of scans taken, but what's lacking is specifically how the information in those scans informed the treatment decision in one direction or another. There are lots of other indicators such as PSA, ALP, symptoms such as bone pain, etc. that also tell us what's happening.
There's definitely a place for imaging, but probably quite a bit of it could be avoided and still make good treatment decisions with good outcomes.
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Hi Gregg,
I would like to pass along a story about imaging, and how it should help us along our journey, but sometimes fails.
In the late winter, early spring last year, I was on a study drug. I had imaging done monthly. As is routine, I was to have an empty bladder. But, all the pictures showed my bladder full. Do you think someone would pick up on it and say something about it, right?
I didn't know that I was dealing with a urethra blockage, caused by my prostate choking it off. Prior to that, I was increasingly in pain, and my Uro knew it. He said it was the cancer. For three years this went on. This is what caused me to quit working, it had nothing to do with the cancer. Although I did have a recurrence about the same time frame. I'm just sick over it. But i can pee with the best of them.
I have CT scans and bone scans every 3 months as the cancer mets are in my bones liver and lungs. Not sure if the mets were only in bones what the protocol would be.
Hi gregg57. Les had imaging before and following chemotherapy and ADT. Huge improvements in bone mets after that. No scans since. We are a year and a half since diagnosis and aren’t interested in more scans which don’t seem necessary to us either. Last PSA was 21, but he is being faithful to a new combo of drugs and supplements. Jan
I had a bone scan, MRI and PET scan upon initial diagnosis which revealed extensive lymph mets in chest these weren't picked up on original MRI. I am on ZYtiga and Zoladex as a result of stampede trial. My oncologist hasn't mentioned anymore scans but I'm presuming a change in PSA or new symptoms will initiate my next one. It's a question on my list for my appointment next week.
I'm in a similar situation. Had all the scans for diagnosis. Started Lupron right away and a month later started early chemo based on STAMPEDE and CHAARTED trials. My oncoligist has said it doesn't make sense to do more scans unless we suspect progression. I will be meeting with him early next month and one of my questions is "How do you determine when there is progression?" So far, I agree that it's not necessary to do more scans unless it will inform my treatment plan. I am coming up on one year since diagnosis in March.
Exaggerate symptoms. Get the scans. You will have great piece of mind. Doctor will not recommend you if you dont complain as he knows insurance will not pay and he does not want to waste his time on paperwork if he knows it will not be approved.
I had 3 bone scans and 2 cat scans the first year after diagnosis, before and after chemo. However, when I was diagnosed with PCa, it was already metastisized to bone. Now, a couple of years later I haven’t had any scans since. The doc says no need so long as symptoms stay the same and PSA remains low...
I am about a year into this saga also. I had a bone scan to confirm the advanced prostate cancer diagnosis, which we already knew. The scan showed several metastases. I think that was what the VA urologist was really looking. After the scan she brought in a high-powered oncologist from the Levine Cancer Institute who initiated my, so far very successful, therapy.
Another bone scan might be indicated if there is a sudden change in the wrong direction, etc.
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Adavanced Prostate Cancer with widespread bone Metastases with pain.
Is Denusomab given just for bone strength or also to prevent spread of Bone metastases 
No SOC treatment. Metastatic lymph nodes by PSMA-PET. Rising PSA. Bone/CT scans neg. Waiting to die. 
For those with bone metastasis: what are (were) your ALP numbers or bone-ALP?
RADIATION EXPOSURE DANGER from radiation treatments, PSMA scans, CT, bone scans
