Elgie had his bone scan and CT scan a few weeks ago. Dr. Myers says cancer in right clavical and pelvic area and he was waiting for Guardant 360 results. Catching you up... Results are back over a week ago. We haven't spoken to Dr. Myers yet but Elgie's local oncologist says he thinks it's arthritis since it doesn't hurt. Local doc says Guardant 360 results didnt help any. We're back here again with trying to figure out if it's cancer or arthritis. Besides a biopsy.... are there any scans that tell you if it's cancer and no guessing? Elgie's psa doesn't elevate. We were able to keep the Xgeva but went from every 3 months to every 6 months.
I'm still working on finding a replacement for Dr. Myers. Left messages for appoitments.....still waiting for return calls.
I hope everyone's doing okay with little to no pain.
Always good wishes ;))
Jackie
Written by
erjlg3
To view profiles and participate in discussions please or .
Jackie, it must be annoying to be in this situation where you don't know what is going on. I would have thought that a doctor can clearly tell the difference between cancer mets and arthritis. I hope you hear back from other doctors soon. Hug to you, Mel.
Most of the doctors including mine don't know how to sort out this ambiguity. I quote below what Dr.Myers has said in his book " Beating Prostate Cancer : Hormonal Therapy & Diet"Page 35 : "The bone scan has long been the standard means for detecting bone metastases. However, any trauma to bone will also cause a positive bone scan. The MRI is very useful in differentiating trauma from bone involvement with cancer and should be used if the bone scan is at all ambiguous. When prostate cancer invades bones, it can cause new bone formation. This happens because prostate cancer activates the osteoblast, the key cell involved in bone formation. The osteoblast releases a protein, called bone-specific alkaline phosphatase, and the serum level of this protein increases as prostate cancer invades bone."
Whilst my PSA remains undetectable I continue to have pains in my shoulders. My MO could only suspect arthritis and had no definite answer. I showed him the above information and with his agreement did a MRI and a blood test for bone specific alkaline phosphatase ( Bone Profile ) just a month ago. MRI confirmed no metastatic uptakes in the shoulders and pains could be due to arthritis and my alkaline phosphatase was well within the normal range.
It's very helpful Sisira It helps me to not worry. All of his labs are great! Thank you graciously.
That is all so very interesting sisira. How great that your doctor worked with you and didn't MRI How awesome that nothing shared up Your alkaline phosphatase was in normal ranges. That is definitely cause for the happy dance
I will definitely keep the MRI in my thoughts should we have any further concerns . I Don't think an MRI has any radiation either and that would be a good thing.
I will have to ask the next doctor we go to about those scans. Elgie has had an F18 scan a year ago And he had the bone scan and the CT scan a month ago.
I think that the new Axumin PET scan can detect bone mets., but I am not sure. What my team stated is that they look for differences between my first scan and my last. Even then, they could not tell if it is cancer or fast growing arthritis. From what I have read the best way unfortunately is a biopsy.
I hope that you can find a doctor that you both like.
I think we will just wait and see what the next scan in 6 months brings unless there is any changes in lab work I feel more comfortable after reading everyone's post I so much hope we find a good doctor also Take good care of YOU Walt!
Big hugs,
Jackie
I wish LG the best. I really can't comment on his current situation with the information provided. The best way without biopsy to determine mets as I understand it and in my own case was PSA velocity and nuclear bone scans and soft tissue CT scans.
For example when first diagnosed with Prostate cancer my Urologist did the scans to determine spread, but more important as a baseline. Two months later my Radiation Oncologist also took images as a baseline prior to implanting seeds. Three months later my other Radiation Oncologist also took scans prior to the 25 week IMRT. Then ten months later a another scan was taken when OSA exploded from 6.8 to 32. Comparison and blood work confirmed metastatic cancer.
Two months later I enetered a chemo trial which again required scans as a new baseline. Over the course of the next six years I had 16 more sets of scans as required in the trial. And finslly I had my last set of scans last November as a check of results.
Sound like a lot of scans? Maybe but taking away the trial requirements, six scans in 14 years with five in the first two years of diagnosis. All taken to establish baseline and historical reference of a Prostate cancer spread or arthritis.
All that I picked up from your posts is that there was a set of scans in 2011 and recently. Dr Meyers says probable metastatic and a local Oncologist says arthritis. How many scans dies this doctor gave available to him to review and over what period. Granted bone and muscle pain can come from a variety of sources not associated with cancer; so what is the historical record of PSA and CEA markers over the same period. With this information someone who sees a lot if metastatic prostrate cancer can make a valued decision on whether metastasis exists. Suppression of PSA values visavie other drugs or supplements. That information is vital to the Medical Oncologist in their diagnosis.
Logically speaking one to determine why there is pain, needs historical data consisting of a blood work, scans, and previous treatment drugs. Without, one is entering a rabbit hole aka Alice in Wonderland.
Wow Gourd! Lot of scans but great to have them side by side. 1st off....I love your happy and funny posts and salutation!!! I always LAUGH out loud.
All of Elgie's labs are Great! Which means I'm not going to worry. Thanks to all of you. There is no pain in these areas. He's had quite a few scans also in the last few years. I'm Going to consider him still in remission YOU keep kicking the bastard too Gourd :))
Thank you so much.
Jackie
Sorry to hear about the confusion over the bone scan results. The problem with bone scans is they have high sensitivity, but much lower specificity. That's why a biopsy is needed as a followup.
But also keep in mind that there are 3 things you are looking at in general: scans, PSA and how you feel. You have 2 out of 3 good so that's really positive.
Having information from tests can be useful, but it always has to get back to your treatment plan. Where does this additional information fit into your treatment plan and how will knowing more change/effect your plan? I'm not saying it won't, just that tests need to be put into that context.
Good luck with everything and hope Elgie continues to feel good. Thanks for the update.
That Sounds great PSA is always undetectable, Scans could be so much worse, and he feels fairly good besides fatigue and a little nausea To which we are truly thankful That that is all the symptoms he is having. He just had a cataract removed and now he can see again
Always great wishes for you also Gregg. Always interesting post to read of yours.
Great on the undetectable PSA! That's always a good thing. My scans were fairly bad at diagnosis and I've decided not to have them done right now because it will not alter my course of treatment. My PSA is currently .2, down from 463 at diagnosis. If my PSA goes up and we suspect progression, then we'll look at scans. But for now, my doc says he doesn't want to give me unnecessary radiation.
Glad Elgie's feeling good. One thing I have learned from this ordeal is to listen to what my body is telling me. Before my diagnosis, my body was telling me there was something wrong and I ignored it. Won't make that mistake again.
As for tests, another indicator of bone "met" progression is Alkaline Phosphatase. My numbers have been steadily improving, in sync with the PSA. Was wondering, have you had any recent testing on that?
I had recently read your post about backing off of the scans because of radiation If there weren't any other issues and I thought that was a great idea. I am going to have to check into his lab work to see if they are testing for that. Wow your PSA had a ferocious drop! I'm glad you are now listening to your body. It is amazing how the body heals with proper tools sometimes. I'm so glad your numbers are getting better and you are doing well and feeling well. Keep posting your interesting posts
Take good care and thank you and I will look for those lab test.
Jackie, this may sound like I am in denial, but I have always preferred to believe that the mets they thought they saw were actually just arthritis, It may be a coping mechanism , or wishful thinking, but for me it works,and gets me through the day. I really do not know how the treatment is going to change even if one did do a painful biopsy and found out it really is bone mets. What is the reason from going to 3 monthly xgeva to every 6 months, I was of the understanding that xgeva is reccomended every month for men with bone mets, I am doing it every 6 weeks to coincide with 3 week chemo. I also believe doing zometa early for many years is what stablized my suspected extensive bone mets in 2006, zometa is basically been replaced by zgeva now , which has shown to be just as effective.
How are you feeling today? How is the chemo going? I hope you're still not having any pain because it is controlled. Elgie has been on Xgeva for longer than 4 or 5 years and there is no data after 3 years. So for the 1st 2 or 3 years he was on every month injection and then he went to every 3 month injections and this last doctor appointment with consulting with his local doctor local oncologist we all decided that we would go for every 6 months and see how that goes. I hope it was a good decision. I guess we won't know for now but he can always go back on it every 3 months or every month If needed. Whatver the reason for your optimism it's a whole lot healthier for one's brain to not worry so much. I'm going with you and going to consider that it is arthritis also because everything else is good Elgie is too. I think that it is good that you were on the Zometa and now the Xgeva. Elgies local cancer institute is now switching every one that was on Xgeva.... now they are switching them to the Zometa because it is cheaper but they gave Elgie The Choice.... only because we ask....they are allowing him to stay on the Xgeva because he is already on it. Always good wishes Dan and love your input. Take good care of you and keep in touch.
I'm really glad you've had so many useful replies. Of course you deserve them.
After reading your original post & the discussion since, I think there is every reason to be optimistic. I haven't had an undetectable PSA for many years.
I've been on Zometa for several years; Kaiser doesn't offer Xgeva. Same issue: no data after 3 years. I'm still getting it every 3 months.
Glad to hear about the PSA & hope there's no bone issue except arthritis!
Thank you so much Neal! I sure hope you're feeling well and doing some fun things. Elgie doesn't have a Geiger for the psa but it's all good. We are going with the arthritis thingamajig I so much wish that you didn't have to do the fusions and I hope they are not so long. I Hope you are enjoying the end of summer
Thank you so much Jackie. I've got some aches & pains & fatigue, but I am doing some fun things. Must admit I don't know what Geiger means here. I'm not the person who was facing fusions. Beautiful weather here!--hope yours is too.
In my brain lol Geiger was a way to possibly mean a way to monitor LG's PSA . Times I can't find the right word for it what I mean I'm so glad you are having some fun and yes the weather has been beautiful here yesterday only lol hopefully today also. it has been like a rain forest before that.
Hi Jackie, I am doing good, I have to say the 10th cycle was the easiest for me, I never did get sick, just tired for a few days, so i slept in. I have been pain free lately. I am so glad to hear Elgies PSA is undetectable, that puts things in a whole different light. I think your program with xgeva is good, I read somewhere, that long term use makesit hard for the cancer to grow in bone, so he has that with the 5 years. Zometa must have gone off patent if it is cheaper. xgeva is easier just being a shot as opposed to an infusion of zometa. Thank You for your always kind words, Take ggo care of you!
I'm always so glad to hear how you are doing Dan. I cannot imagine having to go through chemo and all of the side effects. I'm so glad it wasn't horrible. I sure hope the Xgeva plan works well. Elgie's psa undetectable is not so good. He has no marker...his cancer barely produces psa. That's why scans were so important. I need to look up that name in Is labs soon kindness makes the world so much nicer and easier and You and everyone are always so kind to me also.
Why do they think Elgies psa does not make much psa? Is it nueroendicrine, or is simply because of a high Gleason, My Gleason is 10, and my current psa is 67. I have seen MOs, even at MSKCC tell patients that their cancer does not produce psa, then in the end thier psa went into the 500 range, On the other hand I have known of Men who never had a psa of higher than 3 and had the most aggressive Prostate Cancer I have ever heard of. I am hoping Elgie has just normal PC and that the undetectable is a good thing
Hi Jackie, having a very low PSA is always good. After 6 cycles of chemo, I am still experiencing minor bone pains. It's been 5 weeks since my last and final chemo and I am very mobile. I can play tennis again and jog a little bit. My Onc said the existing minor bone pains maybe arthritis. I don't worry about it. I take xgeva every 6 weeks and I take calcium pills twice a day. My Onc said to continue doing it. We are still planning to relocate to Naples, Fl but I haven't found a doctor who specializes in PCa. There is Moffit Cancer Center but it is in Tampa a little over 2 hour drive from Naples.i wish you and Elgie good health always. God blesd you both.
it is so nice to hear that you are back to doing some fun activities that you love Even After chemo .So glad it is helping you to feel well enough to do that . I so much Hope eventually the pain will lessen so that you will be able to do more without pain .
I Think Florida is the place to be to help pain Well at least to help my pain lol the cold weather does my body no good . I sure hope you find a doctor closer but sometimes it's hard to get a good one within 2 hours of you so 2 hours is probably pretty good Xgeva does more than we thought and I am 2nd guessing Elgies transfer to every 6 month injections
My best wishes for you and what lies ahead and for your continued fun
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Results are back over a week ago. We haven't spoken to Dr. Myers yet but Elgie's local oncologist says he thinks it's arthritis since it doesn't hurt. Local doc says Guardant 360 results didnt help any. We're back here again with trying to figure out if it's cancer or arthritis. Besides a biopsy.... are there any scans that tell you if it's cancer and no guessing? Elgie's psa doesn't elevate. We were able to keep the Xgeva but went from every 3 months to every 6 months. 
It helps me to not worry. All of his labs are great! Thank you graciously. 
Timing of DEXA scans and CT scans
Too early after HIFU for PSMA PET/CT Scan?
Whats the difference between the Axumin PET/CT and a regular bone scan and CT scan of pelvis and abdomen
Need help understanding bone density scan.
