How often are people here with bone m... - Advanced Prostate...

Advanced Prostate Cancer
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How often are people here with bone metastases getting bone scans and/or CT scans?

gregg57
gregg57
39 Replies

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.

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Glsn10

Hi,

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.

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j-o-h-n
j-o-h-n
in reply to Glsn10

As I've mentioned before, I get so many scans that I'm starting to speak Scandinavian.

Good Luck and Good Health.

j-o-h-n Friday 11/10/2017 6:06 PM EST

God Bless our Veterans this Veterans day and on all days that end in Y.

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YostConner

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.

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George79
George79
in reply to YostConner

Don’t expect thescan to show immediate results. Xofigo works over time according to my oncologist.

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Hidden
Hidden

I get scanned every 6 months, switching between a private hospital and the VA.

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JamesAtlanta

I have PSA checked monthly and bone scan, CT scan and MRI every 6-months.

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erjlg3

Lg use to have some type of scan every 6 months but lately he's moved to once a year unless pain or symptoms occur.

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Dan59

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.

Dan

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ontheroad589

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.

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AlanMeyer

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?

Alan

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Ian2017
Ian2017
in reply to AlanMeyer

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.

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gregg57
gregg57
in reply to Ian2017

I'm curious, what was your ALP when you had a PSA of .579?

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Ian2017
Ian2017
in reply to gregg57

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.

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gregg57
gregg57
in reply to Ian2017

ALP does come down slower than PSA so it's more of a "lagging indicator" so to say.

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Don1157

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.

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Holly5301

Yearly or upon new related symptoms

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Lee70

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

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gourd_dancer

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.

Gourd Dancer

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garythomas

Gregg

I have not had a scan since Nov 2014. When I asked my medical oncologist about another scan, she said I would have lots later.

My PSA is low and stable and I have no pain, but am concerned about PSA negative cancer cells, as I was metastatic at a PSA of only 6.9.

Gary

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Steve_McL

I must be an exception--my oncologist orders bone scan, CT chest, and CT abdomen/pelvis every 3 months. I have mets in bone and lung.

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Charlean
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gregg57
gregg57
in reply to Charlean

Thanks Charlean. Here's an often overlooked issue.

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Hidden
Hidden
in reply to Charlean

Hi Charlean,

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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gregg57
gregg57
in reply to Hidden

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.

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Hidden
Hidden
in reply to gregg57

Cool, bro.

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Charlean
Charlean
in reply to Hidden

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.

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erjlg3
erjlg3
in reply to Charlean

:'(

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Charlean

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.

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gregg57
gregg57
in reply to Charlean

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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Hidden
Hidden
in reply to gregg57

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.

J

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eggraj8

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.

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leswell

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

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leswell

P.S.

Great question. How many more scans just limit our quality of life and perhaps shorten our days?

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Apollo123

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.

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gregg57
gregg57
in reply to Apollo123

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.

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Mormon1
Mormon1
in reply to gregg57

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.

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Darcym1

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...

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gregg57
gregg57
in reply to Darcym1

My doctor is saying the same thing. I think it's a sensible approach.

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Mormon1

Every six months even if I need to exaggerate something to get scan approval

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