Prostate Cancer? Lupus? Myeloma? Amyloidosis? Please read and help.

[HouseKnowsBest]

63 yrs  male. Symptoms enlarged prostate 35mm. Low semen volume sometimes none. High blood free  light kappa. Tea color urine over a year protein and casts and crystals I  urine. Sono of pelvis clean scrotal sono clean. Cat scan no masses seen. Psa blood 0.4. I have type 2 diabetes and Lupus ha1g normal. Cystoscope of bladder clean no tors. I have numbness in bladder and low bone density Not A Uti other blood markers for myeloma positiv as well as for amyloid. Two urologists both refused me a prostate biopsy I. Out of urologists. Nyc

[auntiejessi]

So your markers for multiple myeloma are positive with  Amyloidosis?

I don't see a need for a prostate biopsy, but what are your kidney numbers? You said you had high kappa numbers?

Are they referring you to a hematologist-oncologist? A nephrologist (kidney doctor)?

One of my family members has multiple myeloma, and is doing well. They have newer treatments now.

If you do have multiple myeloma, you can ask about it in our Cancer forum - https://www.medhelp.org/forums/Cancer/show/59

[auntiejessi]

Also, if they don't think prostate cancer, have they said what is causing the low semen?

Your prostate doesn't seem that enlarged, but it depends on what the 35 is measuring.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3739117/

[HouseKnowsBest]

35 is the size is all it says "enlarged" prostate of "medium" size I do not have urgency or ne ed to urinate a lot

I am seeing a hematogist this week on the phone they said I don't have the 4 main red flags for myeloma  I saw a renal doctor last week he said creatinine is normal as well as kidney function edge. No 24 hour urine done
though. I asked he said I don't need it.

Here are blood markers off ldh high 289. Kappa serum high 28.  Free kappa light chains high 182.   Bnp strangely low 102. Igm high 337. Anti dna ds abqn very high 209 (range is 0-9!). Cpk high 233. Myoglobins high present in blood iron high 197 transferrin iron high 58 creatinine random urine very high 462

No one gave me an explanation on low semen.i do use testosterone gel for low T. But a 90% decrease in semen without a lower T score does not add up.  Scrotal sonogram normal no torsion seen. Also always have protein in urine.  



  

[auntiejessi]

My family members had kappa numbers in the thousands when they were first diagnosed with multiple myeloma.

There are different kinds of myeloma - different stages, I guess.

https://www.cancer.net/cancer-types/multiple-myeloma/stages

Elevated kappa levels can mean a few things -

https://medlineplus.gov/lab-tests/free-light-chains/

https://www.aacc.org/advocacy-and-outreach/optimal-testing-guide-to-lab-test-utilization/g-s/serum-free-light-chains

It's possible that you have more than one thing going on - maybe BPH AND something else, and that's why your prostate is enlarged.

Never hesitate to ask your doctors for explanations if they aren't taking the time for it. If you have questions, ask them all.

The hematologist should help. Ask all the questions. Make a list if you need to.

Keep us posted, and good luck.

[HouseKnowsBest]

A Small update. I saw the hematologist-oncologist but he failed to order me a PET scan or Bone Scan or run further blood tests. He told me my immunofixation is postitve for a Polyglomic vs monoclonic pattern (or vise verse) He didnt give me a straight answer except to say  He is SURE I have LUPUS and I'm not getting the proper medication for it., Go back to Rheumatology. As to AMYLODOSIS -he said "that is very possible" but he refused to do a lung or bone marrow biopsy because he said he handles CANCER or Amyloid Cancer AS. He feels I dont have Myeloma or Amylopid AS I may have Amyloiud AL or worse type AA . He didnt refer me to the proper doctor to conduct t Amyloidosis testing so I still need to find a hematologist willing to do a Pet scan/ bone scan (if needed) and whatever test proves Amyloidosis AL or AA ? He left me mroe confused tghen before I wentr there. His officve notes also say "ATTR is NOT to be ruled out": and in the Notes he suggested an  echiocardiogram with Amyloid component. My cardiologist agreed to that test just for cardiac Amyloid but not for Typoe AL or AA  I  have severe shortness of breath that is NOT COPD (Ive been tested _) my lungs are depressed and I have trouble breathing. even with an Oxygen level of 96  So Im worried I have amyloid AA which is dengenerative and incurable... AS to the ORIGINAL Pos tabout low semen and possible prostate cancer  based on a PSA level of 0.005 the urologist insists I get the :LUPUS treated and my liver and kidneys scanned for either Lupus or Amyloid vs needing a prostate biopsy. I cant have ALL of these things (myeloma. prostate cancer etc) M<y opinion is I have undiagnosed Amyloid in the lungs cxausing shortness of breath...  LUPUS doesnt normally cause severe SOB ..at least that is what I have been reading. The other cause of SOB is I have a damafged diaphragm (SLOW) in the lungs. They cant do a diaphphragm replacement unless I will die without it. I was told nmy pulmonary the LUPUS is causing the left side of my rib cage tro pull up and push against my lungs -they actually want to do rsurgery to push my stomach weall and organs "further down: to MAYBE help my breathing. iM NOT having thoracid surgery till they are SURE I dont have AMYLOID as the main cause of SOB..so I still have NO doctor to run Amyloid testing. The hematology oncologist was way too narrow in his approiach of a diagnosis so I need to find another one. Maybe NOT an  oncology hematologist jus ta regular hematologist to run AMyloid testing.

[auntiejessi]

Wow, I'm so sorry that this is all happening, and that you're left more confused.

I'm going to get your post moved to a different forum now that we know it's not prostate cancer. I want to make sure you get different eyes on it, and hope someone else can help. :)