Hi,
My mom has had back / hip issues and epidurals for several years. About six weeks ago, another back / hip pain. She returned to pain management doc who gave her another epidural. Immediately she had a radiating pain down the leg after the shot. Pain didn't improve. MRI was ordered and showed fracture lower back and a spot on the liver. Then a CT scan and bone scan. CBC normal except for slight elevated WBC. MRI and CT reports mention suspicious for metastasis (breast cancer 20 years ago, stage 1) or multiple myeloma.
Two weeks ago, biopsy of fracture, negative. Liver negative also.
Referred by breast oncologist to interventional radiologist. IR says no kyphoplasty because of unusual location of fracture in middle of bone. But that he sees a 15 millimeter lytic lesion on sacrum and is suspicious for multiple myeloma. This second site was biopsied yesterday. This lytic lesion was mentioned in reports (I read them all for first time yesterday), but was never mentioned to us until now.
I do not understand why the fracture only (and not the lesion) was only biopsied the first time.
We are being passed around from pain doc, to breast oncologist (this obviously is not her area), she did consult with her team and was puzzled. She referred us to another doc who then referred us to another.
The interventional radiologist said the orthopedic spine pain doc ordered most recent biopsy per the IRs suggestion, so he will get results next week.
In the meantime, I am asking primary (who has been out of loop) why haven't any blood tests (proteins, m-spike) been ordered?
No one is leading the ship and it is causing arguments between my dad and I about mom's care.
Mom is in lots pain (pain doc denies that epidural caused the shooting pain in leg) and dad is exhausted.
Sorry, but if not multiple myeloma, then what would cause lytic lesion? Any suggestions? We are in Philly.
Forums
Re: mom's situation and struggles
Just to be clear, there is just one lytic lesion, which is 15 millimeters. No others have been mentioned.
The IR, who at this point seems more knowledgeable, said it could be a plasmacytoma if only one. Wouldn't CT / bone scan have shown others?
The IR, who at this point seems more knowledgeable, said it could be a plasmacytoma if only one. Wouldn't CT / bone scan have shown others?
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springfield - Name: mymom
- Age at diagnosis: 70
Re: Mom's situation and struggles
Hello Springfield,
We're very sorry to hear of your mother's struggles and the difficulty you and your family have had getting a diagnosis of her problem.
If your mother does, in fact, have multiple myeloma, the University of Pennsylvania in Philadelphia has a number of multiple myeloma specialists who can help decide on an appropriate treatment plan for her.
In fact, if your mother's insurance would cover it, it probably would be worth seeing if she can get an appointment or referral to Penn sometime very soon. An appointment could be scheduled now to take place after some of the blood work that your mother will need has been completed and those results are available.
There are other potential causes of lytic bone lesions besides multiple myeloma. They include other cancers -- like breast cancer -- which could have spread to the bone, as well as benign tumors and cysts, and bone infections.
Blood and/or urine testing to check for signs of multiple myeloma, as well as biopsies of the lesion, are ways to determine what the source of the problem may be.
Hope this helps a bit. Others here in the forum are likely to have additional advice, and please feel free to ask further questions.
We're very sorry to hear of your mother's struggles and the difficulty you and your family have had getting a diagnosis of her problem.
If your mother does, in fact, have multiple myeloma, the University of Pennsylvania in Philadelphia has a number of multiple myeloma specialists who can help decide on an appropriate treatment plan for her.
In fact, if your mother's insurance would cover it, it probably would be worth seeing if she can get an appointment or referral to Penn sometime very soon. An appointment could be scheduled now to take place after some of the blood work that your mother will need has been completed and those results are available.
There are other potential causes of lytic bone lesions besides multiple myeloma. They include other cancers -- like breast cancer -- which could have spread to the bone, as well as benign tumors and cysts, and bone infections.
Blood and/or urine testing to check for signs of multiple myeloma, as well as biopsies of the lesion, are ways to determine what the source of the problem may be.
Hope this helps a bit. Others here in the forum are likely to have additional advice, and please feel free to ask further questions.
Re: Mom's situation and struggles
I think there should be blood and urine analysis too. But no one that I know has ordered that. Only the CBC. Who do I ask to have those done? And that would be able to interpret results?
No one seems to be captaining the ship.
When i mentioned this to my dad (who is clueless and himself a 8 yr non-Hodgkin lymphoma survivor) he said I should stop trying to tell the docs what to do.
UPenn is great, my daughter is a freshman there.
They have recommended Dr. Abraham at Jefferson (Kimmel Cancer Center). For now we have appointment there next Wednesday. Should I ask his office?
How common is it that the one biopsy is fine at fracture site then the lesion site be positive?
I agree with interventional radiologist that it has to be checked. Just a disappointment that this site was not investigated at same time as first.
Please tell me who you recommend at either UPenn or Jefferson (Kimmel Cancer Center). I just went to Kimmel site. Dr. Abraham is not listed under multiple myeloma. He is an ortho onco and though exceptionally skilled, is that who we should see next?
No one seems to be captaining the ship.
When i mentioned this to my dad (who is clueless and himself a 8 yr non-Hodgkin lymphoma survivor) he said I should stop trying to tell the docs what to do.
UPenn is great, my daughter is a freshman there.
They have recommended Dr. Abraham at Jefferson (Kimmel Cancer Center). For now we have appointment there next Wednesday. Should I ask his office?
How common is it that the one biopsy is fine at fracture site then the lesion site be positive?
I agree with interventional radiologist that it has to be checked. Just a disappointment that this site was not investigated at same time as first.
Please tell me who you recommend at either UPenn or Jefferson (Kimmel Cancer Center). I just went to Kimmel site. Dr. Abraham is not listed under multiple myeloma. He is an ortho onco and though exceptionally skilled, is that who we should see next?
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springfield - Name: mymom
- Age at diagnosis: 70
Re: Mom's situation and struggles
You might consider Ed Staudtmaer, MD at Penn.
http://www.penncancer.org/patients/find-a-doctor/617/
I am not one of his patients, but he is well respected in the field.
http://www.penncancer.org/patients/find-a-doctor/617/
I am not one of his patients, but he is well respected in the field.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Mom's situation and struggles
Thank you for suggestion.
My mom's breast surgeon called and repeated some things:
Total protein normal
CBC good
CEA 11
It's an atypical fracture that cannot be treated with kyphoplasty.
Fracture site too unstable to biopsy.
MRI identified fracture:
Area identified in bone scan was biopsied two weeks ago and negative, yesterday's biopsy site was identified in CT scan, awaiting results.
Breast surgeon frustrated with us calling her. She said go to your mom's medical oncologist.
My mom's breast cancer was 20 years ago and she had a lumpectomy and radiation only. I have no clue or relationship with the med oncologist we saw only once 20 years ago - one consult only at that time.
She is having a medical oncologist from her practice be in charge because she said it could be colon, breast, or many other.
She said she hopes it is cancer so it can be treated (who would say such a thing?).
I asked why no blood tests performed specifically for multiple myeloma and she said there are none and wait for biopsy results.
My mom's breast surgeon called and repeated some things:
Total protein normal
CBC good
CEA 11
It's an atypical fracture that cannot be treated with kyphoplasty.
Fracture site too unstable to biopsy.
MRI identified fracture:
Area identified in bone scan was biopsied two weeks ago and negative, yesterday's biopsy site was identified in CT scan, awaiting results.
Breast surgeon frustrated with us calling her. She said go to your mom's medical oncologist.
My mom's breast cancer was 20 years ago and she had a lumpectomy and radiation only. I have no clue or relationship with the med oncologist we saw only once 20 years ago - one consult only at that time.
She is having a medical oncologist from her practice be in charge because she said it could be colon, breast, or many other.
She said she hopes it is cancer so it can be treated (who would say such a thing?).
I asked why no blood tests performed specifically for multiple myeloma and she said there are none and wait for biopsy results.
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springfield - Name: mymom
- Age at diagnosis: 70
Re: Mom's situation and struggles
Hi Springfield,
Has your mother had any recent blood tests done that show her calcium levels, hemoglobin levels, or creatinine levels (or other measures of her kidney function)?
In advance of any myeloma-related blood or urine work, such tests might shed some light on whether myeloma is causing the lytic lesion your mother has and perhaps also the other pain she has been experiencing.
In the end, it is really your mother who needs to call the shots when it comes to her medical care. You can provide advice and explain the rationale for the advice. However, please think about your long-term relationship with your parents because it will be negatively affected if you start telling them what they should do, and start going around them to tell their doctors what to do. I'm sure that you, as a grown adult, would not like being told what to do in this sort of situation. If you were a doctor, you also probably would not like being told what to do about a patient under your care.
Best of luck to you and your mother. I hope the diagnosis turns out to be something other than myeloma, but please update us on what you find out as the process continues.
Has your mother had any recent blood tests done that show her calcium levels, hemoglobin levels, or creatinine levels (or other measures of her kidney function)?
In advance of any myeloma-related blood or urine work, such tests might shed some light on whether myeloma is causing the lytic lesion your mother has and perhaps also the other pain she has been experiencing.
In the end, it is really your mother who needs to call the shots when it comes to her medical care. You can provide advice and explain the rationale for the advice. However, please think about your long-term relationship with your parents because it will be negatively affected if you start telling them what they should do, and start going around them to tell their doctors what to do. I'm sure that you, as a grown adult, would not like being told what to do in this sort of situation. If you were a doctor, you also probably would not like being told what to do about a patient under your care.
Best of luck to you and your mother. I hope the diagnosis turns out to be something other than myeloma, but please update us on what you find out as the process continues.
Re: Mom's situation and struggles
Springfield,
It's a bit concerning that a doctor would say that there are no specific tests for multiple myeloma.
If there is a suspicion of multiple myeloma, there are indeed some specific tests that one would run, including an SPEP, IFE and a UPEP. These are cheap and easy tests to do. Taken together, they can provide a pretty likely indication as to whether multiple myeloma is involved. To get a better understanding of all the tests that one might run at some point to test for multiple myeloma, see:
http://myeloma.org/pdfs/IMF-U-TestResults-2011_f1web.pdf
However, the biopsy from of the lytic lesion is also going to provide a significant clue.
I also echo what Cheryl says.
It's a bit concerning that a doctor would say that there are no specific tests for multiple myeloma.
If there is a suspicion of multiple myeloma, there are indeed some specific tests that one would run, including an SPEP, IFE and a UPEP. These are cheap and easy tests to do. Taken together, they can provide a pretty likely indication as to whether multiple myeloma is involved. To get a better understanding of all the tests that one might run at some point to test for multiple myeloma, see:
http://myeloma.org/pdfs/IMF-U-TestResults-2011_f1web.pdf
However, the biopsy from of the lytic lesion is also going to provide a significant clue.
I also echo what Cheryl says.
Last edited by Multibilly on Thu Aug 21, 2014 5:19 pm, edited 1 time in total.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Mom's situation and struggles
Calcium, creatinine, hemglobin all in range.
The tests Multibilly mentioned have not been performed to my knowledge
Thank you for your kind words to step back a little!
It would be easier if she had some pain control. She is housebound and refuses narcotics because they make her feel bad. So all she does is sit and cry.
The tests Multibilly mentioned have not been performed to my knowledge
Thank you for your kind words to step back a little!
It would be easier if she had some pain control. She is housebound and refuses narcotics because they make her feel bad. So all she does is sit and cry.
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springfield - Name: mymom
- Age at diagnosis: 70
Re: Mom's situation and struggles
Hi Springfield,
I see Dr. Stadtmauer at UPenn. He is a well-known myeloma expert and a nice guy with a great bedside manner.
UPenn also has a quite large myeloma department, which includes Dr. Cohen, formerly of Fox Chase, who is a Myeloma Beacon Medical Advisor, Dr. Weiss, Dr. Vogel and I believe Dr. Porter, who made headlines recently in a successful leukemia treatment. UPenn is also at the forefront of engineered T cell therapy in blood cancers under Dr. Carl June. It is definitely worth an evaluation at UPenn.
Good luck.
I see Dr. Stadtmauer at UPenn. He is a well-known myeloma expert and a nice guy with a great bedside manner.
UPenn also has a quite large myeloma department, which includes Dr. Cohen, formerly of Fox Chase, who is a Myeloma Beacon Medical Advisor, Dr. Weiss, Dr. Vogel and I believe Dr. Porter, who made headlines recently in a successful leukemia treatment. UPenn is also at the forefront of engineered T cell therapy in blood cancers under Dr. Carl June. It is definitely worth an evaluation at UPenn.
Good luck.
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
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