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Bone lesions and high activity in Pet scan. But biopsies coming back n
My mother in law (age 76) had back pain that started in August. She went to the hospital early September and they found lesions that looked metastatic on her spine l2 and L4. They also found compression fracture in her L2. Biopsy for L2 and bone marrow came back as no abnormalities. Her Pet scan showed hyper metabolic foci with the L2 and mixed lesions in L4, left sacrum along with SUV 21 in her abdomen lymph nodes. Her blood tests are coming back normal except low lymphocytes.
We are waiting on results for her L4 biopsy but Kaiser has been so frustratingly slow. It has been 3 months and they still say it appears cancer but she is not diagnosed with cancer. Meanwhile she has gone from 115 to 98lbs and we are scared that cancer could be spreading.
She lives in CA and is Kaiser and Medicare. would Mayo Clinic be able give a second opinion and maybe a faster diagnosis. Her Dr asked her to be referred to an oncologist but since didn’t have a cancer diagnosis they wouldn’t see her.
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Geez this horrible! This is what we went through 16 years ago when my husband had a collapse vertebra and osteolytic lesions.
You can request an appointment with Mayo using the link on this page, but for us it was easier to get our doctor to send the referral.
I am not a doctor but I have some experience with this type of thing, serum protein electrophoresis blood test, or light chain essay, are tests that have helped us get bone marrow cancers diagnosed.
Are you comfortable asking for tests or referrals from your doctor?
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4 Reactions@auntieoakley they did both the serum protein electrophoresis and serum free kappa and lambda light chains tests . Kappa light chain was 20.49 which is slightly above the range of 19.4 but doesn’t seem significantly elevated. The rest were in normal range.
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1 ReactionI also asked them to look into test for lymphoma and they did a red blood cell morphology which came back normal.
@aubrierose are you comfortable asking your doctor for a referral to Mayo?
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1 Reaction@auntieoakley I am but my mother in law hasn’t agreed to it yet. She lives in Ca where there are no Mayo Clinic’s. I am working on convincing her. Talked to her Dr today that said it could be waldenstroms or aggressive large B cell lymphoma
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1 Reactionaubrierose,
https://healthy.kaiserpermanente.org/support/submit-a-complaint
I'm glad you are on this. Five months is too long.
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1 Reaction@aubrierose Are you near another major hospital with a nationally recognized cancer diagnostic and treatment center? If so, then I would try that one first. A doctor's referral is always helpful, but not always necessary.
@aubrierose If your mother in law is in northern CA, there is a North Bay Medical Center near San Francisco that is aligned with Mayo Clinic, thought the Mayo Clinic Network https://www.northbay.org/
If she is in southern CA, look into City of Hope in Duarte, or perhaps UCLA or USC.
Ginger
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3 Reactions@kenc she is near Stanford so I am talking with her about getting a referral to Stanford. Luckily Kaiser has finally scheduled her with an oncologist. They are saying it’s cancer - possibly waldenstrom , aggressive large cell lymphoma or multiple myloma. She has two more biopsies
@gingerw thank you I will talk to her about North bay