Hi Multibilly,
It is very, very, very hard to get a PET scan in Ontario (paid for by the province). For every one patient that is PET scanned in Ontario, at least 7 patients are PET scanned in neighbouring Quebec (which has a little more than half the population of Ontario, and ironically about the same amount of PET scanners)
My dad has two haematologists, one that specializes in myeloma, the other a local one who deals in all blood cancers. There was some surprise when the local haemotologist scored my dad a PET.
But, ya, a PET would tell you if there are hot spots (lesions)
RR, I'm not trying to scare you, but I want you to push the issue about the rib a little further. My dad showed nothing out of the ordinary when he had a bone marrow biopsy, but the doctors knew different as that was about a month after he had a 5-hour surgery to remove a large tumour, carry out a vertebroplasty and install titanium rods. Unfortunately, his solitary plasmacytoma has progressed into light-chain myeloma (non- / low secretory)
Forums
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Best bring a cup of tea, this is going to be long
Hello again,
I keep hoping I'll be able to post my regrets that I am no longer in need of this forum, but it hasn't happened yet!
Totally agree, Multibilly, about the PET scan, and after I read your post I did some research. As Little Monkey says, PET scans in Ontario are hard to get. OHIP will only cover the cost if the scan is for cancer or cardiac patients who have one of eight clinical conditions, none of which includes 'what the heck is going on with this woman's ribs'. I could pay (well, I could if I borrowed the money) and/or try to get a PET in Quebec, but I need to be referred, and the oncologist / haematologist flat out says it isn't necessary. I see him again in three months.
I finally convinced the onco/haemo doctor to give me a referral to a surgeon to discuss a rib biopsy. I mean convinced, too - had to leave four messages before his office called me back, and then had to be very insistent with the nurse that I did want a second opinion. I was hoping to talk to a thoracic surgeon (actually I was hoping for a different haematologist, but my current one will not comply), as I figure they're most knowledgeable about the ribs and chest, but my referral is to a general surgeon.
I've had, what, five doctors (emergency, GP, internal medicine, another emergency, haemo / onco) look at my test results and tell me so many different things and now everybody seems quite happy to wait three months for the next appointment. I want to ignore them all and brush this whole thing off as a rib fracture, some weird rib spots, and a whole lot of unnecessary testing, but the original rib fracture site still hurts and it's been four months. If I press it even lightly, it's a sharp pain that lasts for about ten minutes. I don't think that's 'normal' for a rib fracture, but what do I know?
I'm hoping the surgeon (when I see him, don't have the appointment yet and it could be as long as 3 months) will be able to figure out what's going on with the bones. I feel great, apart from that. Oh, and I've pinched a nerve or something in my upper arm or back, and now have a slightly numb thumb. My GP says not to worry and it's unrelated, as did the onco/haemo.
Thanks, as always. I guess now it's just more waiting. Oh. Bone marrow biopsy sites. I have a bump and small scar. That happen to anyone else?
I keep hoping I'll be able to post my regrets that I am no longer in need of this forum, but it hasn't happened yet!
Totally agree, Multibilly, about the PET scan, and after I read your post I did some research. As Little Monkey says, PET scans in Ontario are hard to get. OHIP will only cover the cost if the scan is for cancer or cardiac patients who have one of eight clinical conditions, none of which includes 'what the heck is going on with this woman's ribs'. I could pay (well, I could if I borrowed the money) and/or try to get a PET in Quebec, but I need to be referred, and the oncologist / haematologist flat out says it isn't necessary. I see him again in three months.
I finally convinced the onco/haemo doctor to give me a referral to a surgeon to discuss a rib biopsy. I mean convinced, too - had to leave four messages before his office called me back, and then had to be very insistent with the nurse that I did want a second opinion. I was hoping to talk to a thoracic surgeon (actually I was hoping for a different haematologist, but my current one will not comply), as I figure they're most knowledgeable about the ribs and chest, but my referral is to a general surgeon.
I've had, what, five doctors (emergency, GP, internal medicine, another emergency, haemo / onco) look at my test results and tell me so many different things and now everybody seems quite happy to wait three months for the next appointment. I want to ignore them all and brush this whole thing off as a rib fracture, some weird rib spots, and a whole lot of unnecessary testing, but the original rib fracture site still hurts and it's been four months. If I press it even lightly, it's a sharp pain that lasts for about ten minutes. I don't think that's 'normal' for a rib fracture, but what do I know?
I'm hoping the surgeon (when I see him, don't have the appointment yet and it could be as long as 3 months) will be able to figure out what's going on with the bones. I feel great, apart from that. Oh, and I've pinched a nerve or something in my upper arm or back, and now have a slightly numb thumb. My GP says not to worry and it's unrelated, as did the onco/haemo.
Thanks, as always. I guess now it's just more waiting. Oh. Bone marrow biopsy sites. I have a bump and small scar. That happen to anyone else?
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RobinRosemary - Name: Robin
- Who do you know with myeloma?: Undiagnosed
- When were you/they diagnosed?: 51
Re: Best bring a cup of tea, this is going to be long
Hi RR,
I'm new here, recently diagnosed MGUS, then smoldering myeloma.
My bone marrow biopsy left a tiny red mark, no bump, and the mark was gone in a few days. But I suppose everyone is different. If it doesn't reduce in size, or gets bigger, I think you should have it checked out.
Regards
I'm new here, recently diagnosed MGUS, then smoldering myeloma.
My bone marrow biopsy left a tiny red mark, no bump, and the mark was gone in a few days. But I suppose everyone is different. If it doesn't reduce in size, or gets bigger, I think you should have it checked out.
Regards
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Colm - Name: Colm
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: smoldering April 2016
- Age at diagnosis: 56
Re: Best bring a cup of tea, this is going to be long
Hi again RR,
Just went back and read your bone marrow biopsy post. You poor thing, it was quite horrific. I was on my side in a fetal position. It would have been good to have had something solid to hold when the pain got a bit rough - all I had were the bedsheets. I felt like a child with a teddy blanket
Thankfully I didn't watch the aspirate / biopsy on YouTube until after
I used to be absolutely terrified of needles, but started giving blood (when I was able to donate) and eventually got over it; I've no problem watching the needle enter. When I went for the bone marrow biopsy,I had every intention of watching whatever they were going to do. Thank the Lord I wasn't in a position to be able to! Anyhow, I didn't have an incision, at least I believe I didn't, because there was no scar, just a needle spot. And I went back to work (stone mason) immediately after with no sensation of anything at all!
I did jump like a little girl when the anaesthetic needle entered, and jumped a bit more when the other two bigger needles entered, but in my defence, I told her to keep going. There was a burly male nurse standing in front of me, for obvious reasons But he was a real character, kept the conversation going to distract me.
I'll have to go through it again I'm sure, it's not the nicest procedure, but it doesn't (or shouldn't) last too long. I don't use Novocaine with fillings (long story, not health related) and just keep telling myself that OK, the pain is bad, but it doesn't last long.
We have entered a different world with this disease, and I've read so many posts here that reinforce what I already know, that adversity makes us stronger, and I'd go as far as saying, better people.
Keep well
Just went back and read your bone marrow biopsy post. You poor thing, it was quite horrific. I was on my side in a fetal position. It would have been good to have had something solid to hold when the pain got a bit rough - all I had were the bedsheets. I felt like a child with a teddy blanket
Thankfully I didn't watch the aspirate / biopsy on YouTube until after
I used to be absolutely terrified of needles, but started giving blood (when I was able to donate) and eventually got over it; I've no problem watching the needle enter. When I went for the bone marrow biopsy,I had every intention of watching whatever they were going to do. Thank the Lord I wasn't in a position to be able to! Anyhow, I didn't have an incision, at least I believe I didn't, because there was no scar, just a needle spot. And I went back to work (stone mason) immediately after with no sensation of anything at all! I did jump like a little girl when the anaesthetic needle entered, and jumped a bit more when the other two bigger needles entered, but in my defence, I told her to keep going. There was a burly male nurse standing in front of me, for obvious reasons
But he was a real character, kept the conversation going to distract me. I'll have to go through it again I'm sure, it's not the nicest procedure, but it doesn't (or shouldn't) last too long. I don't use Novocaine with fillings (long story, not health related) and just keep telling myself that OK, the pain is bad, but it doesn't last long.
We have entered a different world with this disease, and I've read so many posts here that reinforce what I already know, that adversity makes us stronger, and I'd go as far as saying, better people.
Keep well
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Colm - Name: Colm
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: smoldering April 2016
- Age at diagnosis: 56
Re: Best bring a cup of tea, this is going to be long
I've had two bone marrow biopsies and can highly recommend Entenox ("Gas and air" – nitrous oxide and oxygen). Same stuff that women use during early stage labour. The second bone marrow biopsy (with Entonox) was far more tolerable than the first (without).
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Davidg - Name: David
- When were you/they diagnosed?: Feb 2015 - AL Amyloidosis
- Age at diagnosis: 53
Re: Best bring a cup of tea, this is going to be long
RobinRosemary wrote:
I was under the impression that haematologists do bone marrow biopsies in Ontario?
I finally convinced the onco/haemo doctor to give me a referral to a surgeon to discuss a rib biopsy.
I was under the impression that haematologists do bone marrow biopsies in Ontario?
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Best bring a cup of tea, this is going to be long
Yes, as far as I know you're correct, LittleMonkey. At least that's who did my bone marrow biopsy, a haematologist / oncologist. I'm referring to a biopsy of the fracture/lesion site on my rib bone itself; from what an earlier internal medicine doctor told me, it's difficult to access the specific biopsy site due to the complicated structures around the ribs. Apparently it's an image-guided needle biopsy. I guess that's why the procedure isn't done by haematologists, although I'm really not sure of that.
I'd really like to avoid this, which is why I'd prefer to get a PET scan to rule out a plasmacytoma.
Hello there, Colm, thank you for your empathy - and I didn't even have the worst part of the bone marrow biopsy done as the doctor was unable to aspirate any marrow. I think that's the part that hurts the most, although the drilling bit wasn't exactly a delight. I wanted my husband with me and the doctor said no. I was confused because the room was basically full of people anyway (nurse, lab tech, doctor, and other tech whose purpose I never did discover), but now I know it's because it's probably harder for them to watch than for us to experience!
Davidg - Were I given a choice, I'd have opted for some kind of 'twilight sleep' (wow, does that sound Victorian or what), but I was not given a choice. I requested a sedative and was told it was not necessary.
Thanks to all, as always.
I'd really like to avoid this, which is why I'd prefer to get a PET scan to rule out a plasmacytoma.
Hello there, Colm, thank you for your empathy - and I didn't even have the worst part of the bone marrow biopsy done as the doctor was unable to aspirate any marrow. I think that's the part that hurts the most, although the drilling bit wasn't exactly a delight. I wanted my husband with me and the doctor said no. I was confused because the room was basically full of people anyway (nurse, lab tech, doctor, and other tech whose purpose I never did discover), but now I know it's because it's probably harder for them to watch than for us to experience!
Davidg - Were I given a choice, I'd have opted for some kind of 'twilight sleep' (wow, does that sound Victorian or what), but I was not given a choice. I requested a sedative and was told it was not necessary.
Thanks to all, as always.
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RobinRosemary - Name: Robin
- Who do you know with myeloma?: Undiagnosed
- When were you/they diagnosed?: 51
Re: Best bring a cup of tea, this is going to be long
Robin,
I would push for a PET scan if you want it. You might be able to convince a doctor to write to the Ministry of Health for permission to have one at their cost. My dad ended up getting one approved and it was done in Hamilton.
I would push for a PET scan if you want it. You might be able to convince a doctor to write to the Ministry of Health for permission to have one at their cost. My dad ended up getting one approved and it was done in Hamilton.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Best bring a cup of tea, this is going to be long
I will do so, LittleMonkey; I know the chances of a plasmacytoma or some other bone or marrow malignancy are low, but 'low' is not 'nil'.
I have already asked my family doctor for advice and to help me get a second opinion and he is not willing to do that, at this time. He says 'if there is something wrong' that my next appointment, in August, with the oncologist / haematologist is soon enough. The oncologist / haematologist said it wasn't necessary for me to see another oncologist / haematologist because 'there's nothing for them to look at' (meaning my test results are for the most part normal). I'm waiting for a phone call that will set up an appointment with a surgeon, and I guess he's the one I'll lean on.
It seems strange to me that nobody has actually felt, like physically examined, my ribs. I guess all the imaging is superior to a mere physical exam, but I can pinpoint exactly where the pain is, and as I have NOT seen any of the x-rays or other test results apart from blood work, I don't know if the pain is at the fracture site or is something else entirely. I mean, I do a lot of physical stuff, I could have pulled a muscle or strained something very close to the fracture site, for all I know.
Hamilton would be great, it's so close (I'm in south Niagara). Thanks for the info, LM, I will ask the surgeon to do exactly that - write to the MoH on my behalf.
I have already asked my family doctor for advice and to help me get a second opinion and he is not willing to do that, at this time. He says 'if there is something wrong' that my next appointment, in August, with the oncologist / haematologist is soon enough. The oncologist / haematologist said it wasn't necessary for me to see another oncologist / haematologist because 'there's nothing for them to look at' (meaning my test results are for the most part normal). I'm waiting for a phone call that will set up an appointment with a surgeon, and I guess he's the one I'll lean on.
It seems strange to me that nobody has actually felt, like physically examined, my ribs. I guess all the imaging is superior to a mere physical exam, but I can pinpoint exactly where the pain is, and as I have NOT seen any of the x-rays or other test results apart from blood work, I don't know if the pain is at the fracture site or is something else entirely. I mean, I do a lot of physical stuff, I could have pulled a muscle or strained something very close to the fracture site, for all I know.
Hamilton would be great, it's so close (I'm in south Niagara). Thanks for the info, LM, I will ask the surgeon to do exactly that - write to the MoH on my behalf.
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RobinRosemary - Name: Robin
- Who do you know with myeloma?: Undiagnosed
- When were you/they diagnosed?: 51
Re: Best bring a cup of tea, this is going to be long
Hi,
I can't remember, but did you have a CT scan with contrast? Imaging is weird. I had a liver lesion that was visible on other imaging I had for my heart (coincidental finding), so then I had a CT scan that showed rib and spine lesions when I was told after my MRI I had none!
I am in Ontario and have never had a PET scan. I would like one, to know the extent of my disease. I don't know why they won't fund for multiple myeloma but for lymphoma they have them routinely.
I can't remember, but did you have a CT scan with contrast? Imaging is weird. I had a liver lesion that was visible on other imaging I had for my heart (coincidental finding), so then I had a CT scan that showed rib and spine lesions when I was told after my MRI I had none!
I am in Ontario and have never had a PET scan. I would like one, to know the extent of my disease. I don't know why they won't fund for multiple myeloma but for lymphoma they have them routinely.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
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