Hello,
This is my first time posting here and I apologize if this is the wrong place to do so, but I am hoping someone with a bit more knowledge wouldn't mind sharing if possible.
I've recently been diagnosed with MGUS and was told that I should have a bone marrow biopsy and bone survey to complete the evaluation.
The thing is that I am scared to death of the biopsy. When I first learned of Mgus two months ago I kind of went into an emotional spin and was really frightened. Now after visiting a top specialist this week for a second opinion I am feeling better, but he wants the biopsy whereas my local hematologist said I didn't need it.
So, I asked if I could be sedated and was told no. I know I have a low tolerance for pain and I am thinking I may just refuse the biopsy. Does anyone know of a center in NYC or NJ that offers sedation for the biopsy?
Also, does anyone know what bence-jones is? My local hematologist told me I had protein in my urine which after looking online I assumed was bence-jones. Then the specialist told me it is not Bence-jones. So I actually felt relieved by his words, but I thought I read online that any monoclonal protein in urine is bence-jones. I am just trying to understand this.
I know how silly I must sound, but I am just feeling a little overwhelmed by this right now. This was discovered when I went in for a fertility evaluation and now instead of going for fertility treatment I am going to myeloma specialists.
Thank you for reading this and healthful prayers to all.
Forums
Re: First bone marrow biopsy - scared to death
Nikkitalcal,
EJ gets a little jumpy when they do biopsies so his doc gives him a muscle relaxer/sedative before the procedure, and uses a local anesthesia. He says it helps.
Good luck!
Lyn
EJ gets a little jumpy when they do biopsies so his doc gives him a muscle relaxer/sedative before the procedure, and uses a local anesthesia. He says it helps.
Good luck!
Lyn
-
Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: First bone marrow biopsy - scared to death
I just had one Monday. The thing that made me jump the most was the lidocaine shots, kind of like the shots the dentist gives you, some pain to avoid more. The aspiration itself is "painful", but not the worst by a long shot. It is also short lived, the doc counted to 7 for my benefit. There was no pain I taking the bone sample, but I was aware that it was being taken.
Don't be that scared, while it's not something to do voluntarily, it isn't excruciating by any stretch of the imagination. For me it isn't as bad as most of my visits to the dentist.
Don't be that scared, while it's not something to do voluntarily, it isn't excruciating by any stretch of the imagination. For me it isn't as bad as most of my visits to the dentist.
-
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: First bone marrow biopsy - scared to death
Hi Nikkitalcal,
I have low levels of protein in my 24 hour urine tests (never in the spot check samples) but it is not monoclonal (bence jones) proteins. My reports usually reflect 100% Albumin which I understand is not uncommon and as long as it stays within the "normal range" is not a concern to my multiple myeloma specialist.
The multiple myeloma specialists do things a bit differently from the general onc/hems. They want to make certain they do the necessary testing to definitively rule in your MGUS, so even though the BMB is not the most pleasant experience, it is quick and over with, but provides them with valuable information.
Even if you don't find someone/where to do under sedation, perhaps they can prescribe something to keep you calm. I have had 2 with just local lidocaine shots and both were really over with quickly. Will probably be having a 3rd on in my near future, and I will most likely use the local again.
The more information you have about your MGUS, the more at ease you will feel as you will know you have been thoroughly investigated in the right way. All the very best to you.
Dana
I have low levels of protein in my 24 hour urine tests (never in the spot check samples) but it is not monoclonal (bence jones) proteins. My reports usually reflect 100% Albumin which I understand is not uncommon and as long as it stays within the "normal range" is not a concern to my multiple myeloma specialist.
The multiple myeloma specialists do things a bit differently from the general onc/hems. They want to make certain they do the necessary testing to definitively rule in your MGUS, so even though the BMB is not the most pleasant experience, it is quick and over with, but provides them with valuable information.
Even if you don't find someone/where to do under sedation, perhaps they can prescribe something to keep you calm. I have had 2 with just local lidocaine shots and both were really over with quickly. Will probably be having a 3rd on in my near future, and I will most likely use the local again.
The more information you have about your MGUS, the more at ease you will feel as you will know you have been thoroughly investigated in the right way. All the very best to you.
Dana
-
DanaH - Who do you know with myeloma?: Myself, SMM as of 1/2012
- When were you/they diagnosed?: 1/2012
- Age at diagnosis: 54
Re: First bone marrow biopsy - scared to death
The first thing I'd ask the doctor is what will they find in the bone marrow biopsy that they will not find in a blood test.
I've talked my doctor out of several bone marrow biopsies with this question.
I'm sure for initial diagnosis, it's valuable. And for some types of myeloma it's valuable. But for me, I honestly don't think it has much value. (If I'm wrong, somebody please correct me).
I've talked my doctor out of several bone marrow biopsies with this question.
I'm sure for initial diagnosis, it's valuable. And for some types of myeloma it's valuable. But for me, I honestly don't think it has much value. (If I'm wrong, somebody please correct me).
-
stann
Re: First bone marrow biopsy - scared to death
Nikkitalcal,
It is not unusual to get a difference of opinion between doctors with myeloma or MGUS. I second what Dana has to say about the importance of the information the bone marrow biopsy can provide especially to a specialist in myeloma, which is maybe why he wants it done where the other does not. Not everyone has access to a myeloma specialist.
It is my understanding the majority that have MGUS never see it develop into myeloma. What is far more frightening than a bone marrow biopsy is myeloma and the pain that it can bring. So if it where me I would want to get the biopsy so I can have some peace of mind about just where I stand, especially if I planned to be a parent.
I would say it is comparable to tough dentistry but I cannot imagine that it is anywhere near as painful as having a baby will be if the fertility treatment is successful.
It is not unusual to get a difference of opinion between doctors with myeloma or MGUS. I second what Dana has to say about the importance of the information the bone marrow biopsy can provide especially to a specialist in myeloma, which is maybe why he wants it done where the other does not. Not everyone has access to a myeloma specialist.
It is my understanding the majority that have MGUS never see it develop into myeloma. What is far more frightening than a bone marrow biopsy is myeloma and the pain that it can bring. So if it where me I would want to get the biopsy so I can have some peace of mind about just where I stand, especially if I planned to be a parent.
I would say it is comparable to tough dentistry but I cannot imagine that it is anywhere near as painful as having a baby will be if the fertility treatment is successful.
-
Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: First bone marrow biopsy - scared to death
I just want to thank each of you for your very thoughtful responses. You each have given me some real food for thought. I am frightened for sure but I am trying to psych myself into being courageous. Thank you so much.
Nikki
Nikki
Re: First bone marrow biopsy - scared to death
I have had a couple of biopsy's this past year at Roswell Park Cancer Institute. Each time they gave me a lollipop for the pain. Amazing! I didn't feel anything. The third biopsy ... actually my first one was in my local hospital .... nothing for pain. I will never forget that experience. 
I believe the lollipops had fentanyl in them. 
I believe the lollipops had fentanyl in them. -
bbarnes413 - Name: Bruce Barnes
- Who do you know with myeloma?: I have myeloma
- When were you/they diagnosed?: March 20, 2013
- Age at diagnosis: 61
Re: First bone marrow biopsy - scared to death
I did a biopsy and scan a couple of months ago. My scan was like an MRI, so it was painless other than the discomfort I was feeling from my back and ribs. The biopsy was a bit uncomfortable, but not painful. The area for the probe was deadened with a few shots, and the biopsy itself felt odd but did not hurt. The person doing it was very communicative about what he was doing and how it should feel, so there were few surprises and it was completed in less than 30-minutes.
The only problem _I_ had was bleeding after I got home and was perhaps a bit too active, even in sitting, given that I was on blood-thinner. Just keep an eye on the bandage (you might not can see it well -- have someone else monitor it) so that you don't do as I did and get up from watching TV to find myself sitting in a pool of blood! ;^)
The only problem _I_ had was bleeding after I got home and was perhaps a bit too active, even in sitting, given that I was on blood-thinner. Just keep an eye on the bandage (you might not can see it well -- have someone else monitor it) so that you don't do as I did and get up from watching TV to find myself sitting in a pool of blood! ;^)
-
LarryJ
Re: First bone marrow biopsy - scared to death
The biopsy is important in doing a complete diagnostic workup of myeloma. Very likely the material taken in the biopsy will be sent for genetic testing which is used in deciding whether you are a low risk, or high risk, patient. Treatment decisions are made with the results of the biopsy in mind. A local oncologist who is not a myeloma specialist doesn't have the sophistication of testing biopsy material that a specialist usually has access to.
I didn't enjoy the one biopsy that I've had, but I did understand the importance. Thankfully my specialist doesn't feel that doing biopsies beyond the diagnosis, at this point, is necessary. He keeps track of my progress, or lack of progress, through blood tests and bone scans. He also listens to what I have to say and acts on my comments when needed.
Having a thorough workup is probably really important if you continue to pursue fertility treatments. There are some recent posts that you can find in the archive about a couple of women in their 30's who have gone, are going, through this route who also are MGUS. Look them up and post to them if you want more on their experiences.
Good luck with the biopsy and the possible pregnancy in the future,
Nancy in Phila
I didn't enjoy the one biopsy that I've had, but I did understand the importance. Thankfully my specialist doesn't feel that doing biopsies beyond the diagnosis, at this point, is necessary. He keeps track of my progress, or lack of progress, through blood tests and bone scans. He also listens to what I have to say and acts on my comments when needed.
Having a thorough workup is probably really important if you continue to pursue fertility treatments. There are some recent posts that you can find in the archive about a couple of women in their 30's who have gone, are going, through this route who also are MGUS. Look them up and post to them if you want more on their experiences.
Good luck with the biopsy and the possible pregnancy in the future,
Nancy in Phila
-
NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
18 posts
• Page 1 of 2 • 1, 2