I've been lurking around this forum for about a month, hoping I'd never need to register, but now I'm beginning to think it's time.
About two months ago, I was shoveling snow and pulled some intercostal muscles, or at least I thought that's what I'd done. I toughed it out for another three weeks, but the pain wasn't getting better, so I ended up going for an x-ray, which was inconclusive. I was told to go for a CT scan the next day at a bigger hospital, one town over. I showed up for my scan, and the doctor on duty told me that on the x-ray my fracture looked abnormal (first I'd heard there was a fracture), and that he was ordering blood tests and changing my CT order from a CT of my chest, to a CT with contrast of my chest and abdomen.
While they were injecting the contrast medium, the IV union 'blew up' and no contrast went in; I asked them to repeat the test and they said no, it'd be conclusive. I waited about four hours and finally a doctor came over, told me I had multiple rib fractures, and that I needed a bone scan. He handed me a requisition form and walked away. As I was leaving the hospital, I read on the form '51 yr old female, pathologic rib fractures, diagnosis: metastatic enchondroma', which doesn't exist, as far as I can tell. All that diagnosis did was make me Google far, far too many things that can metastasize.
So I showed up for the bone scan appointment on the date shown on the form. Long story short, the form hadn't been signed or even submitted, so I didn't get the bone scan that day. I ended up being sent to an internal medicine doctor who had no idea why I was there. I filled him in, he looked at the x-ray and scan, gave me a perfunctory exam, and said he needed to order some more tests. He ordered more blood testing, an ultrasound of my thyroid (mother had thyroid cancer), mammogram, and the bone scan. He said healthy bones don't just break, and that there could be many explanations, and that we needed to rule out a metastasized cancer.
I had the tests done and waited some time for the results. Blood test stated 'discrete underlying band of IgG type kappa detected'. Thyroid bulky, with small nodule. Bone scan - he said there were spots that lit up on both sides of my rib cage. By now of course I'd done some reading, and I asked if it could be myeloma. He said it didn't look like it. He said if he had to be blunt, it looked like metastatic cancer.
He ordered another CT, this time with IV and oral contrast, of my abdomen and pelvis. This was about two weeks ago, and the results of that CT were clear/normal, too. I had my second appointment to see this doctor (had seen him once for about 15 minutes, and spoken to him once on the phone), and he said that we could still be missing the primary cancer and I should talk to my gynecologist. I did, he ordered a CA-125 test (which was normal), and has scheduled a transvaginal ultrasound, which will be in another couple of weeks.
The doctor also said he'd spoken with a radiologist and an oncologist, and they were as stumped as he was. He said I had no raised calcium in my blood, which you'd expect to see with a metastasized cancer. He said my general health was great (and it is, I'm a beast, for the most part). I asked where the fractures were, and he said 6th rib right side, 7th rib left side, and 8th rib left side. I asked if context was the only thing that made these fractures unusual, and he said no; he said they looked like they had tiny holes around the sites. He said it isn't lymphoma or leukemia, because my blood tests would have shown that.
He said the next step was a skeletal survey to see if there were more lesions that we hadn't yet seen, and that he would schedule an appointment for me with an oncologist, who would review my tests to date and perform a bone marrow biopsy (BMB). He said that the BMB would be conclusive as to whether or not I had myeloma; and that if I did NOT, the next step was a biopsy of the fractured rib itself. I asked why we didn't do the biopsy of the rib first, and he said it was a difficult procedure due to the underlying structures and that if I didn't need it they didn't want to attempt it.
Personally I really hope we get that far, because of course, it will mean I don't have myeloma.
However, four days ago I got more blood test results, and they are what made me think it was time to speak up on this forum.
My C Reactive Protein is flagged as high, at 8 mg/L.
My Beta 2 Microglobulin falls within normal range at 115.0 nmol/L.
My Free Kappa is 11.4 mg/L and my Free Lambda is 6.7 mg/L.
My Kappa / Lambda ratio is flagged as high at 1.70.
My creatinine is flagged as low at 42 umol/L, and my eGFR is 114.
All this stuff is new to me, but I'm reading everything I can find that will help me understand. If it weren't for the broken ribs, I'd think I might have MGUS, but from what I've read, the fractures would indicate symptomatic myeloma.
My question is: Am I doing enough? Should I be seeing a myeloma specialist now, or should I wait for a concrete diagnosis? I trust the internal medicine guy, but he's a cardiologist who just happened to be on duty when I came in. Will the (reputable, but not myeloma specialist) oncologist who I see be adequate for where I currently am, diagnosis-wise?
This new info about the free light chains is really freaking me out, not that I haven't been consistently freaking out for the past two months. Do I need to be moving more quickly on this?
And I'm sorry, in advance. Sorry for the length of this post, and also sorry it's in Canadian values. I am a math idiot so didn't convert anything as I was afraid I'd mess it up.
Thank you so much, whoever can offer me any advice. Our health care system up here is broken, to put it bluntly, and I am not only going to have to be my own best advocate, I'm going to be my ONLY advocate.
Forums
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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 RobinRosemary,
Thanks for your post, and I am sipping on hot chocolate as I read it (even though it is 20 C / 68 F here in Calgary!). It would be really unnerving to wonder if you had either metastasized cancer or multiple myeloma!
I think that from the skeletal survey and the bone marrow biopsy your doctors could tell whether or not you had myeloma. My only suggestion is that, if that were to be the case, you could ask for a referral to a hematological oncologist, who specializes in myeloma, if there is such a specialist in your area. There are other Canadians who read the Beacon too, so if you share as to where you are, you could get suggestions about that. Myeloma is a disease of the blood plasma cells.
Hope that helps!
Thanks for your post, and I am sipping on hot chocolate as I read it (even though it is 20 C / 68 F here in Calgary!). It would be really unnerving to wonder if you had either metastasized cancer or multiple myeloma!
I think that from the skeletal survey and the bone marrow biopsy your doctors could tell whether or not you had myeloma. My only suggestion is that, if that were to be the case, you could ask for a referral to a hematological oncologist, who specializes in myeloma, if there is such a specialist in your area. There are other Canadians who read the Beacon too, so if you share as to where you are, you could get suggestions about that. Myeloma is a disease of the blood plasma cells.
Hope that helps!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Best bring a cup of tea, this is going to be long
Thanks for your reply, Nancy. It IS unnerving - I've never been this afraid in my life.
I have the skeletal survey tomorrow but no date for the bone marrow biopsy yet; hopefully that will happen soon so I can start making some informed decisions.
I'm about two hours from Toronto so if I do have myeloma, I'll try to get referred to Princess Margaret Hospital - they have a myeloma clinic. I can't imagine what else it COULD be, though. I was kind of hoping that after I made my initial post here, someone would come along and give me a verbal slap and say, "No, you fool, it's a benign blah blah!" or something equally comforting.
Mostly I'm just scared that while the doctors try to figure this out, and while I wait for referrals and appointments, I'm getting sick. I still feel great, but I have some lower back pain and shoulder pain that I didn't have before.
Thanks again - R
I have the skeletal survey tomorrow but no date for the bone marrow biopsy yet; hopefully that will happen soon so I can start making some informed decisions.
I'm about two hours from Toronto so if I do have myeloma, I'll try to get referred to Princess Margaret Hospital - they have a myeloma clinic. I can't imagine what else it COULD be, though. I was kind of hoping that after I made my initial post here, someone would come along and give me a verbal slap and say, "No, you fool, it's a benign blah blah!" or something equally comforting.
Mostly I'm just scared that while the doctors try to figure this out, and while I wait for referrals and appointments, I'm getting sick. I still feel great, but I have some lower back pain and shoulder pain that I didn't have before.
Thanks again - R
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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
You are welcome, Rosemary, and I remember being absolutely terrified about getting a cancer diagnosis! Fortunately, though, I have received really good care, and even though I went thru some difficult times, am doing well in a 'new normal' now. I hope it is the same for you, if you are diagnosed with any sort of cancer! The Princess Margaret, by the way, is absolutely a top rated hospital for myeloma.
Probably the waiting on getting a diagnosis is wearing on your nerves, but good luck, and remember that others are supportive too!
Probably the waiting on getting a diagnosis is wearing on your nerves, but good luck, and remember that others are supportive too!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Best bring a cup of tea, this is going to be long
Hi RR,
If you have any type of cancer, you actual chemotherapy or radiation treatment will be at your local cancer centre in St. Catherine's. If you do have myeloma, you may be referred to either Princess Margaret in Toronto or Jurivinski Cancer Centre in Hamilton for an expert opinion to guide your local hematologist.
We have one member of the forum (Canadian) who was diagnosed with myeloma 18 years ago and is still around the forum today. While the Canadian health care system has it's challenges, especially if you read the papers about us sending people to the US for allo stem cell transplants, it is not without its good points.
If you have any type of cancer, you actual chemotherapy or radiation treatment will be at your local cancer centre in St. Catherine's. If you do have myeloma, you may be referred to either Princess Margaret in Toronto or Jurivinski Cancer Centre in Hamilton for an expert opinion to guide your local hematologist.
We have one member of the forum (Canadian) who was diagnosed with myeloma 18 years ago and is still around the forum today. While the Canadian health care system has it's challenges, especially if you read the papers about us sending people to the US for allo stem cell transplants, it is not without its good points.
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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 there, Little Monkey, thanks for your response.
I just got a call with my appointment to see an oncologist/hematologist; I'll be seeing a Dr. Brian Findlay from the Niagara Health System next week. My referring doctor (an internal medicine doctor who happened to be on duty when I was at the hospital for my initial CT scan) told me I'd be getting a bone marrow biopsy when I saw the oncologist but when I asked just now, I was told no, this is just an initial consult.
I agree wholeheartedly that there are good and bad things about the respective health care systems - so far, I'm only out of pocket $150, for some blood tests that aren't covered by OHIP or insurance. But within the general Canadian health care systems are the smaller systems, and the Niagara Health Care System is not highly rated. If I have myeloma, it's Princess Margaret, and if it's something else, I'm going to ask for a referral to the Juravinski.
Thanks again - the waiting is just brutal, and it's very helpful to read about others' experiences.
I just got a call with my appointment to see an oncologist/hematologist; I'll be seeing a Dr. Brian Findlay from the Niagara Health System next week. My referring doctor (an internal medicine doctor who happened to be on duty when I was at the hospital for my initial CT scan) told me I'd be getting a bone marrow biopsy when I saw the oncologist but when I asked just now, I was told no, this is just an initial consult.
I agree wholeheartedly that there are good and bad things about the respective health care systems - so far, I'm only out of pocket $150, for some blood tests that aren't covered by OHIP or insurance. But within the general Canadian health care systems are the smaller systems, and the Niagara Health Care System is not highly rated. If I have myeloma, it's Princess Margaret, and if it's something else, I'm going to ask for a referral to the Juravinski.
Thanks again - the waiting is just brutal, and it's very helpful to read about others' experiences.
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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
I have heard that Niagara Region lacks many medical specialties that a county of 400,000 people should have; keep in mind that cancer centres in Ontario are semi-independent from the hospital they are located in, they each also have an official from the provincial government who reports back to the province on how the cancer centre is performing.
My father was referred to Princess Margaret Hospital myeloma clinic to give guidance to my dad's haemotologist whether or not his solitary plasmacytoma had become myeloma (unfortunately it did); my dad's radiation and chemo are still done at the local cancer centre.
Generally speaking, myeloma treatment is guided by the Ministry of Health, so there will be little difference where in Ontario a myeloma patient received their chemo; the first treatment used is CyBorD, which is made up of cyclophosphamide (pills), Velcade (bortezomib) by injection at the hospital paid for by OHIP and dexamethasone (pills).
A patient who does not have private pharmaceutical insurance needs to apply for the Trillium Benefit, who will cover all medication after the patient has spent more than 4% of the household income on medication; including cyclophosphamide, dexamethasone, pain killers etc.
My father was referred to Princess Margaret Hospital myeloma clinic to give guidance to my dad's haemotologist whether or not his solitary plasmacytoma had become myeloma (unfortunately it did); my dad's radiation and chemo are still done at the local cancer centre.
Generally speaking, myeloma treatment is guided by the Ministry of Health, so there will be little difference where in Ontario a myeloma patient received their chemo; the first treatment used is CyBorD, which is made up of cyclophosphamide (pills), Velcade (bortezomib) by injection at the hospital paid for by OHIP and dexamethasone (pills).
A patient who does not have private pharmaceutical insurance needs to apply for the Trillium Benefit, who will cover all medication after the patient has spent more than 4% of the household income on medication; including cyclophosphamide, dexamethasone, pain killers etc.
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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
Hi RobinRosemary,
I’m so sorry to hear of all you have been through as you await a definitive diagnosis. It’s a very stressful and worrisome time, and waiting for tests results can sometimes seem unbearable.
My myeloma diagnosis came last November as a result of a spontaneously fractured rib. I was lucky in that the time from my rib fracture diagnosis to definitive myeloma diagnosis was quite quick – 3 weeks. As I'd previously had breast cancer, I was referred immediately to Juravinski for a bone scan and then an MRI. The MRI indicated that my femur was on the verge of fracturing. One day later I was undergoing prophylactic surgery to repair my femur. During that surgery a biopsy was taken from my femur. A week later, I had my myeloma diagnosis. Unfortunately, many people arrive at a final myeloma diagnosis via a very circuitous route.
After 4 cycles of CyBorD induction therapy, I underwent an autologous stem cell transplant last month at Juravinski. My experience with their stem cell transplant team was very positive.
Wishing you all the best,
Karen
I’m so sorry to hear of all you have been through as you await a definitive diagnosis. It’s a very stressful and worrisome time, and waiting for tests results can sometimes seem unbearable.
My myeloma diagnosis came last November as a result of a spontaneously fractured rib. I was lucky in that the time from my rib fracture diagnosis to definitive myeloma diagnosis was quite quick – 3 weeks. As I'd previously had breast cancer, I was referred immediately to Juravinski for a bone scan and then an MRI. The MRI indicated that my femur was on the verge of fracturing. One day later I was undergoing prophylactic surgery to repair my femur. During that surgery a biopsy was taken from my femur. A week later, I had my myeloma diagnosis. Unfortunately, many people arrive at a final myeloma diagnosis via a very circuitous route.
After 4 cycles of CyBorD induction therapy, I underwent an autologous stem cell transplant last month at Juravinski. My experience with their stem cell transplant team was very positive.
Wishing you all the best,
Karen
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KarenaD - Name: Karen
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 4, 2015
- Age at diagnosis: 54
Re: Best bring a cup of tea, this is going to be long
I want to compliment all of our Canadian members who have responded to RobinRosemary's call for help. It's good to know that you can offer such good and detailed information to her about how the Canadian system works for people with cancer, especially those with myeloma. I'm sure that you have been a big help to her and have relieved a little of her anxiety.
RobinRosemary - This is one of the most difficult period in having myeloma, waiting to get to the doctor who will run the appropriate tests that are needed to diagnose myeloma and then waiting for the results. Continue to reach out to people on this forum with your questions. As you have already seen, you will get good information, especially concerning the Canadian system.
All the best to you,
Nancy in Phila
RobinRosemary - This is one of the most difficult period in having myeloma, waiting to get to the doctor who will run the appropriate tests that are needed to diagnose myeloma and then waiting for the results. Continue to reach out to people on this forum with your questions. As you have already seen, you will get good information, especially concerning the Canadian system.
All the best to you,
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Best bring a cup of tea, this is going to be long
Hi and welcome to the forum. Sorry you need to be here, but I'm glad you found us. I think most people would agree that the waiting-for-definitive-diagnosis is one of the most difficult time periods. The waiting is so brutal. Believe it or not there are generally better times ahead, even with an ultimate diagnosis of myeloma.
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
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