We received a message from Dr. Myers yesterday that said this........The MRI confirmed cancer in the head of the humerus involving the bone marrow. With your PSA undetectable, we should biopsy this to make sure it is prostate cancer, not something else. Are you ok with us proceeding in this direction? .......We are proceeding. We have to go to a hospital that will do the biopsy and send it for genetic testing....I think to find out how best to treat it. Any knowledge or info or input on this whole message is appreciated. I have Google but not sure exactly what to Google. I've Google all of it but it takes me to too many things. I think bone marrow involvement is not too good but not sure. Would like to know more. Waiting on a call from the hospital. Thanks so much everyone. I was hoping it was not coming back since it stayed gone for 2 years. May be a different type all together.
Jackie
~me~
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I'm so sorry to hear about this setback---Elgie's been doing so well. I just hope that it's caught early and can be knocked out, like his PCa was. I don't know anything about that kind of involvement, I have something similar in my left femur trochanter, but they don't seem to want to do anything at this point.
Thank you Eric. We hope and pray that your stays put and does not make any changes and does not cause any problems. I so much hope the doctors are keeping an eye on it. I didn't get anywhere today with scheduling the biopsy. Everything seem to not work out. I am hopeful possibly tomorrow. Take care of you Eric. Always Good thoughts and prayers.
I have been wondering about metastatic spread without a rise in PSA. My husband's Gleason was 8, PSA at diagnosis was 57. Surgery revealed T3bN1M0. No rise in the PSA once in hormone therapy. He has had radiation too. He went off hormone therapy in January but has significant pain when walking or standing. Sometimes he can't walk a foot. I know have to push him in a wheelchair when we travel. They have diagnosed piraformis syndrome but I'm wondering about the prostate cancer causing his ortho pain but the doctors are saying it is not the pca because no rise in PSA. Here is the only Google search I could find: ncbi.nlm.nih.gov/pmc/articl...
Has your husband had any scans, mri's etc. Elgie gets an F18 Pet Scan every 6 months because he has a non psa producing cancer. The scans help to see if the cancer is growing or moving.
I'll keep posted. So sorry about your husbands mobility. Please check on getting a scan.
Wow so good to know this. He has become more and more debilitated. He had three bone scans in the beginning because they wanted an initial one, another before they would agree to surgery and another before radiation was allowed. All negative but the last one was 2 years ago. MRI of his low back. THANK YOU!
oh my goodness Ruth I hope you will be able to schedule something as soon as possible. Please keep us posted. All good thoughts and good wishes but nothing shows up so bad. Maybe some arthritis hopefully. Most sincere, Jackie
Metastatic spread without a rise in PSA occurs when the cancer mutates into either poorly differentiated PCa or small cell PCa that do not produce PSA. This is a rare occurrence (2%) and is very hard to identify.
I think I'd try to speak with Dr. Meyers before jumping into action. First, to confirm what you think you heard in the phone message. And, second, to ask what the biopsy might show and what the treatment options might be for each option. I would guess a biopsy of a bone is not a pleasant "test". Hope it all works out well.
thank you so much herb. I will do just that. We will not make any decisions without dr. Myers Direction and input. My best to you also.
Hi Jackie,
I've been following along, and was going to wait til I saw my guy next week, but that's not happening.
I would agree to the biopsy. I don't believe this is a common area for PCa mets. But, I'm usually wrong in these instances.
I also recently had a F18 Pet. It shows mets in my hip, 2 in my neck, 2 in my spine, and possibly in the perineum. A year ago I had no mets, per a bone scan. IDK what's going on! My PSA did fluctuate quite a bit, but remained below 5. Now I'm at 8.85. But does that correlate to the mets?
Joe, perhaps you have a non Cancer producing PSA also.... what is the doctor going to do about it? Perhaps changing medications adding medications?? I am so shocked and sorry to hear that all of those meds arrived within a short period of time. please keep up on it keep up on your doctor's as to what you should do next. I'm glad to hear a little bit of an opinion as to prostate cancer possibly not going there in the shoulder area. all of it is so frightening as I'm sure it is for you also. we are trying to regroup and our heads a little bit the last 2 days. I've been on the phone getting the run-around until right before closing time. dr. Myers assistant or secretary also was getting the runaround and she was so helpful with getting all the information and helping us to get a consultation in order to get the biopsy. please keep us all posted on What treatments you will try and I will keep everyone posted also. my best wishes for whatever you choose. Jackie
Please do wait for word from Dr. Myers before you "jump into action". I've had several
bone and/or bone marrow biopsies under his direction. With a competent interventional radiologist they are not difficult or painful. Then, the sample(s) will be
sent off to Caris Dx in Phoenix. In 3-4 weeks Dr. Myers will call to tell what Caris learned and what treatment is appropriate. I, too, have cancer that doesn't express much PSA but it has always been enough to know we had a continuing problem. I'm glad your husband's bone met was caught in spite of the low PSA. Good Luck!
Thank you so very much take charge! Every bit of knowledge is helpful. Maxine at dr. Myers office mentioned something about Kerris but I did not know what she was talking about. Wow that is a long time to wait and not do anything for treatment but I am so thankful that you let me know that it may take that long I would have been frantic thinking it should have been back within a week. That is absolutely terrifying knowing you have to wait that long for treatment. dr. Myers office spoke with who is going to do it and they are also sending me the paperwork via portal so that I can take it with me and make sure that they get it right well at least try to make sure that they get it right. Thank you so much for letting us know that it is not painful. LG will be glad to know that. forgive all of the spelling and grammar errors as I am text talking and it makes it too hard to fix the errors on this site on my phone. Again thanks so much and my best wishes to you. Having a non for cancer producing PSA I don't know it's a good thing or a bad thing on one hand you get the scans to see where it's at on the other hand you have to look at those Rising numbers
Jackie, Hi. I'm new to this community but I just wanted to say that I'm really happy the docs are going to perform genetic testing on the biopsy. I'm in the camp that doesn't really care what the primary disease is and am more interested in what fuels the metastatic disease. Genetically they can be completely different, and a lot of the mutations that occur in the metastatic disease can be actionable. I'd ask the doctors what genetic test they're going to do (i.e. specific assay, panel test or WES - whole exome sequencing) and push for WES since that will give you the richest amount of data. It's what I did. Standard of care wasn't working for me, I got genetic testing and it showed a completely different path that my cancer was growing - and that enabled me to get on a trial testing a drug that inhibited that pathway. Best of luck in finding out what fuels his disease.
Wow Bryce, that is a lot of helpful information and I so much very much appreciate you taking the time to write especially with you being new to the group. I will be sure to copy this I'm going to copy all of these messages and take them with us too the consultation on Wednesday. I am so glad you found this option for yourself and to share it with others in order to help others. thank you very much, Jackie
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MRI Results
MRI result after constant pains 
Is another MRI needed? 
