Well, after almost 4 yrs. of remission from her stem cell transplant, referrals to cardiology, pulmonology, gastroenterology ... every doc but the shrink ... negative blood work and urine, an MRI showing T1 fracture, and negative PET scan, my mom's oncologist has agreed to do a biopsy at T1 despite the the excruciating pain. He continues to state she is in full sustained remission.
However, from day 1, I have questioned to myself and other family members whether this T1 could be another area where multiple myeloma resurfaces. I kept getting told no, but even the other docs from the other specialties questioned this. I know her oncologist is only human and we respect him so much but I feel like her seeing all of these other docs was a complete waste of time (other than knowing every other system of her body is healthy; I must say that's a plus).
She was sent to the other docs because she was having pain on inspiration and SOB and they ALL said it was because of the T1 fracture. Kind of what we all thought from the beginning. Her oncologist is a myeloma specialist, people come from all over to see him, etc. etc. My mom loves him. But I feel he missed the boat with this 2 mos. ago. Now he's agreeing to send her for a biopsy.
This is the same way it all started 5 yrs. ago with the solitary plasmacytoma. I get it then, but this time I feel we/he should've cut to the chase.
UGH!!!
She is 100% healthy, otherwise, thankfully. Biopsy diagnosed it the last time, as well. After perfect labs, etc.
Anybody else ever told they're in complete remission with perfect labs, perfect urine and negative PET scan but then have the dreaded biopsy prove different?
I'm exhausted ... more so for her. Just needed to vent.
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Re: Biopsy it is
How I feel your pain.
My sister has had multiple myeloma since 2004. First time she was misdiagnosed for months, almost lost her life until cousin took her to a specialist. This time she was complaining of shoulder pain and was told it was bursitis. She would call and tell them it wasn't getting better. They would just say bursitis is painful, take Advil.
Well after about 7 months they did an MRI and her myeloma had relapsed. Two massive tumors on each side. One ended up fracturing her right humerus and had to be surgically repaired. This weekend we noticed she is full of lumps.
It's been a tiresome battle that I know could've been prevented. Even sadder is the fact that her last specialist hasn't even had the decency to called her. I'm praying we can get through this. She's only 50.
Lesson learned, don't trust anyone or put your eggs in one basket.
Anyhow I wish the best for your mom and your family.
My sister has had multiple myeloma since 2004. First time she was misdiagnosed for months, almost lost her life until cousin took her to a specialist. This time she was complaining of shoulder pain and was told it was bursitis. She would call and tell them it wasn't getting better. They would just say bursitis is painful, take Advil.
Well after about 7 months they did an MRI and her myeloma had relapsed. Two massive tumors on each side. One ended up fracturing her right humerus and had to be surgically repaired. This weekend we noticed she is full of lumps.
It's been a tiresome battle that I know could've been prevented. Even sadder is the fact that her last specialist hasn't even had the decency to called her. I'm praying we can get through this. She's only 50.
Lesson learned, don't trust anyone or put your eggs in one basket.
Anyhow I wish the best for your mom and your family.
Re: Biopsy it is
I have learned to take the blood tests and PET scans with a big ol' grain of salt.
My husband still had a 0.0 m-spike and no free light chains when he relapsed after his SCT. Luckily his doctor knows he is the last person to complain about pain, so if he says something is wrong, it's wrong. The PET scan only showed one very small active spot, but later biopsy showed that he did, in fact, have many other active spots, plus starting back on chemo eliminated pain in his shoulder/arm (where the PET scan was "clean" by one interpretation and "inconclusive" by another). We are 95% sure he had tumor growth in that area, as that is the area he first had pain when diagnosed.
Listen to your gut - better to do one more test than to regret not checking later on.
My husband still had a 0.0 m-spike and no free light chains when he relapsed after his SCT. Luckily his doctor knows he is the last person to complain about pain, so if he says something is wrong, it's wrong. The PET scan only showed one very small active spot, but later biopsy showed that he did, in fact, have many other active spots, plus starting back on chemo eliminated pain in his shoulder/arm (where the PET scan was "clean" by one interpretation and "inconclusive" by another). We are 95% sure he had tumor growth in that area, as that is the area he first had pain when diagnosed.
Listen to your gut - better to do one more test than to regret not checking later on.
Re: Biopsy it is
My multiple myeloma started to re-emerge about 4 months ago in the form of an elevated M- spike and increased lambda light chains. While it seemed I had plenty of time to begin treatment because my other test were running normal, CBC etc, my clavicle broke 6 weeks ago without any abnormal pressure.
I suspect that if it can get by insurance or Medicare, any indication of relapse probably should require a bone scan in order to avoid fractures while doing everyday chores.
I wouldn't take a PET scan lightly, however, because it should reveal any lesions, even some too small to see on X-ray. We all know that multiple myeloma doesn't show up everywhere and once it has been diagnosed every sign needs to be investigated and the reason diagnosed.
I suspect that if it can get by insurance or Medicare, any indication of relapse probably should require a bone scan in order to avoid fractures while doing everyday chores.
I wouldn't take a PET scan lightly, however, because it should reveal any lesions, even some too small to see on X-ray. We all know that multiple myeloma doesn't show up everywhere and once it has been diagnosed every sign needs to be investigated and the reason diagnosed.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Biopsy it is
Thanks for all of your responses as they are greatly appreciated.
Well, to catch you up, my mom had a tissue biopsy at T1 that was inconclusive. Labs drawn again last week were perfect, urine perfect, oncologist (again myeloma specialist) called neurosurgeon from his office re: kyphoplasty and neurosurgeon didn't hesitate in saying "absolutely not."
I wasn't with her at this appointment, unfortunately, but she said the oncologist told her the neurosurgeon said it's too risky of a surgery at T1. I'm wondering if he didn't see the MRI and said surgery is too risky because I don't like what I'm seeing.
Oncologist then referred her to a radiology oncologist for "a treatment to help with the pain and then in a few weeks we'll do a bone marrow biopsy." I thought this was strange ... why not just do the bone marrow biopsy now so we know what we're dealing with.
Oncologist (again myeloma specialist -- people come from all over to see him) maintains she's in full sustained complete remission. So, today, she goes to radiologist who, without hesitation, states that she needs bone marrow biopsy ASAP before he does any treatment as it appears to him the MRI is showing a plasmacytoma, and then he shows her the PET and says there is low metabolic activity at T1 and he doesn't know if it's just a plasmacytoma we're dealing with or multiple myeloma?
I'm baffled. How could her oncologist not see what he's seeing. He was very concerned and tried to reach her oncologist but he's out of the country for a few weeks. Her oncologist has maintained the entire time that he doesn't think this pain at T1 has anything to do with the multiple myeloma.
Now, my gut has told me since day 1 that this was multiple myeloma related. I'm no oncologist, but I am a nurse practitioner, and I do have a good understanding of this -- enough to know what to report, what to ask for, etc. Heck, my family (most with no medical background) has been saying the same thing.
I'm confused, angry, stressed, scared ...ugh. My poor mom has been through every test known to man. How is her oncologist missing this? He's the specialist, and I'm the one begging him for more tests, answers, etc., because her pain is so bad and he keeps saying it's not related to her multiple myeloma.
Frustrated ...
Well, to catch you up, my mom had a tissue biopsy at T1 that was inconclusive. Labs drawn again last week were perfect, urine perfect, oncologist (again myeloma specialist) called neurosurgeon from his office re: kyphoplasty and neurosurgeon didn't hesitate in saying "absolutely not."
I wasn't with her at this appointment, unfortunately, but she said the oncologist told her the neurosurgeon said it's too risky of a surgery at T1. I'm wondering if he didn't see the MRI and said surgery is too risky because I don't like what I'm seeing.
Oncologist then referred her to a radiology oncologist for "a treatment to help with the pain and then in a few weeks we'll do a bone marrow biopsy." I thought this was strange ... why not just do the bone marrow biopsy now so we know what we're dealing with.
Oncologist (again myeloma specialist -- people come from all over to see him) maintains she's in full sustained complete remission. So, today, she goes to radiologist who, without hesitation, states that she needs bone marrow biopsy ASAP before he does any treatment as it appears to him the MRI is showing a plasmacytoma, and then he shows her the PET and says there is low metabolic activity at T1 and he doesn't know if it's just a plasmacytoma we're dealing with or multiple myeloma?
I'm baffled. How could her oncologist not see what he's seeing. He was very concerned and tried to reach her oncologist but he's out of the country for a few weeks. Her oncologist has maintained the entire time that he doesn't think this pain at T1 has anything to do with the multiple myeloma.
Now, my gut has told me since day 1 that this was multiple myeloma related. I'm no oncologist, but I am a nurse practitioner, and I do have a good understanding of this -- enough to know what to report, what to ask for, etc. Heck, my family (most with no medical background) has been saying the same thing.
I'm confused, angry, stressed, scared ...ugh. My poor mom has been through every test known to man. How is her oncologist missing this? He's the specialist, and I'm the one begging him for more tests, answers, etc., because her pain is so bad and he keeps saying it's not related to her multiple myeloma.
Frustrated ...
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risper6
Re: Biopsy it is
Wow, I can certainly understand your concerns and if it were me I would feel the same way.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
6 posts
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