I have been doing so much research this weekend since my husband was diagnosed by his Internist this last week, something I described in this forum thread. We are waiting for an oncologist appointment next week.
My husband had total knee replacement in February of this year, which is considered a major surgery. He was in the hospital for four days and then seen by a home care nurse for two weeks. He has done extremely well.
Would myeloma have shown up in the blood work before surgery if it was there then?
As I stated, my husband was scheduled for routine throat surgery last month and something showed up strangely in his blood work then. So wouldn't it have shown up in the major surgery blood work?
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Re: Should there have been a diagnosis before knee surgery?
Back in 2011, I had sinusitis surgery done and there was quite a bit of blood lab work done prior to the surgery. In those lab results, there definitely where signs that something was not right, but, as I learned later, only to the trained eye of a hematologist-oncologist would they indicate possible myeloma. Most doctors would not have recognized it.
The results of my labs indicated that everything was good enough to do the surgery and, as I learned, that is all the ENT specialist is looking for when they review the labs for surgery. The surgeon has lots of people on their schedule they are doing surgery for, and it is not unusual for them to have patients that have labs that are not quite normal, for a number of reasons.
A lot of people take medications that affect their blood lab numbers, and the abnormal results may be perfectly normal given the medications they are on. Also, a lot of people have existing medical conditions that result in abnormal lab results. Most specialists are just looking to see if the patient is good enough to do the procedure, check that box yes or no, and move on to the next. They do not have the time to start investigating the complete medical history of the patient to see if slightly abnormal lab results on CBC or WBC are normal for them.
In the years since I have had that surgery, I have talked with a number of specialist doctors I have met and they confirmed to me that this is the usual situation. They fully understood that I and most people would like to believe that, in a situation like this, they would have the time and inclination to investigate further every abnormal lab result they come across, but the reality is they do not. I am sure there are cases where a really sharp specialist knee surgeon may be the first to spot a problem like myeloma, and that is great, but, from what I have learned, that is not to be expected.
In my case, about a month later I was in the office of my GP for an appointment for back and rib pain. All of us with myeloma know what that means. My GP is familiar with my total health picture. That is his role as a GP -- he's not a specialist looking at just one issue or problem. He looked at those same lab results and, knowing my complete health history and what medications I was on, knew that the results were abnormal and that something was wrong with me -- something that had not been identified yet.
He ran a lot more tests to rule out a number of potential problems and then had me sent to a hematologist-oncologist, where I was quickly diagnosed with myeloma. All this took less than two weeks.
So my takeaway from this is that it is important to get the GP informed of what is going on and understand what their role is in medical care. Specialists are specialists in their area of expertise. If I have medical problems outside of their area of expertise, I really should not be talking to them about it, but go see my GP to get started.
I have a friend who is a gynecologist who says she get patients who start talking to her about all their medical problems during office visits. She tries as best she can to politely get the message across that they are talking to the wrong person when they do this. She is a gynecologist, and that is what she studies and keeps current on and has passed her boards in. If you have got problems in other areas, you really should go to a doctor who has experience with that problem. It would be a bit irresponsible for her to start practicing medicine outside of specialty.
It seems that a lot people think that if you are a doctor then you know everything medical and that hardly is the case, as I have learned. There is just too much for any one individual to know.
The second thing I learned is that there are times when I have to be proactive and take the initiative with my own health. I need to be aware of my health status, what medications I am on, and what the side effects of those medications are. I have to learn the basics about common lab testing and what is normal for me and what is not. Things do not always happen automatically in health care, and I may be the one who has to pursue things or push it through the system to the next level.
I looked at the lab results for my sinusitis surgery just out of curiosity and, though at that time I had just a basic understanding of those tests, I could see that there were a number of results that were out of range and, knowing what I knew about my health, that there was no explanation why they should have been that way. I had to take the initiative to bring those results to the attention of my GP during my visit. The system was not going to bring it to his attention automatically. My GP was frustrated by this too.
If we had medical records systems that had artificial intelligence and could look at lab results when they come in, examine all the patients’ medications and history of medical conditions, and have the smarts to identify a new or previously unidentified conditions and raise a red flag, that would be great thing.
I think to some extent we do have medical systems that have a database of information behind them to help doctors with diagnosis, but I do not believe it is anything approaching such artificial intelligence.
The results of my labs indicated that everything was good enough to do the surgery and, as I learned, that is all the ENT specialist is looking for when they review the labs for surgery. The surgeon has lots of people on their schedule they are doing surgery for, and it is not unusual for them to have patients that have labs that are not quite normal, for a number of reasons.
A lot of people take medications that affect their blood lab numbers, and the abnormal results may be perfectly normal given the medications they are on. Also, a lot of people have existing medical conditions that result in abnormal lab results. Most specialists are just looking to see if the patient is good enough to do the procedure, check that box yes or no, and move on to the next. They do not have the time to start investigating the complete medical history of the patient to see if slightly abnormal lab results on CBC or WBC are normal for them.
In the years since I have had that surgery, I have talked with a number of specialist doctors I have met and they confirmed to me that this is the usual situation. They fully understood that I and most people would like to believe that, in a situation like this, they would have the time and inclination to investigate further every abnormal lab result they come across, but the reality is they do not. I am sure there are cases where a really sharp specialist knee surgeon may be the first to spot a problem like myeloma, and that is great, but, from what I have learned, that is not to be expected.
In my case, about a month later I was in the office of my GP for an appointment for back and rib pain. All of us with myeloma know what that means. My GP is familiar with my total health picture. That is his role as a GP -- he's not a specialist looking at just one issue or problem. He looked at those same lab results and, knowing my complete health history and what medications I was on, knew that the results were abnormal and that something was wrong with me -- something that had not been identified yet.
He ran a lot more tests to rule out a number of potential problems and then had me sent to a hematologist-oncologist, where I was quickly diagnosed with myeloma. All this took less than two weeks.
So my takeaway from this is that it is important to get the GP informed of what is going on and understand what their role is in medical care. Specialists are specialists in their area of expertise. If I have medical problems outside of their area of expertise, I really should not be talking to them about it, but go see my GP to get started.
I have a friend who is a gynecologist who says she get patients who start talking to her about all their medical problems during office visits. She tries as best she can to politely get the message across that they are talking to the wrong person when they do this. She is a gynecologist, and that is what she studies and keeps current on and has passed her boards in. If you have got problems in other areas, you really should go to a doctor who has experience with that problem. It would be a bit irresponsible for her to start practicing medicine outside of specialty.
It seems that a lot people think that if you are a doctor then you know everything medical and that hardly is the case, as I have learned. There is just too much for any one individual to know.
The second thing I learned is that there are times when I have to be proactive and take the initiative with my own health. I need to be aware of my health status, what medications I am on, and what the side effects of those medications are. I have to learn the basics about common lab testing and what is normal for me and what is not. Things do not always happen automatically in health care, and I may be the one who has to pursue things or push it through the system to the next level.
I looked at the lab results for my sinusitis surgery just out of curiosity and, though at that time I had just a basic understanding of those tests, I could see that there were a number of results that were out of range and, knowing what I knew about my health, that there was no explanation why they should have been that way. I had to take the initiative to bring those results to the attention of my GP during my visit. The system was not going to bring it to his attention automatically. My GP was frustrated by this too.
If we had medical records systems that had artificial intelligence and could look at lab results when they come in, examine all the patients’ medications and history of medical conditions, and have the smarts to identify a new or previously unidentified conditions and raise a red flag, that would be great thing.
I think to some extent we do have medical systems that have a database of information behind them to help doctors with diagnosis, but I do not believe it is anything approaching such artificial intelligence.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Should there have been a diagnosis before knee surgery?
Thank you so very much for your reply. May I ask what type of procedure you had? I do not know if that is a proper question to ask, but I am so scared. My husband is 68 years old and has always been in perfect health. No aches as described in symptoms, no infections as described in symptoms, he has always had kidney problems from a childhood disease, so that we do not believe is from the myeloma.
Any information you can share with me would be greatly appreciated. Have you had a stem cell transplant? A friend, rather acquaintance, of mine, her husband just went through a transplant at MD Anderson and he is doing well. But he had so many more symptoms than my husband.
When our internist gave us the news he said that he thought that it could be put into remission, and the big thought of his that we are so holding on to is "Do I think you will die from this? No."
Just so scared and confused.
Any information you can share with me would be greatly appreciated. Have you had a stem cell transplant? A friend, rather acquaintance, of mine, her husband just went through a transplant at MD Anderson and he is doing well. But he had so many more symptoms than my husband.
When our internist gave us the news he said that he thought that it could be put into remission, and the big thought of his that we are so holding on to is "Do I think you will die from this? No."
Just so scared and confused.
Re: Should there have been a diagnosis before knee surgery?
My dad had knee replacement surgery in January 2008.
In October 2008, he was picking up a door he was refinishing and his arm broke out of no where. When they did the x-ray on the arm, the doctor came back with "I think this is cancer." It turned out to be multiple myeloma.
We were in shock. All the testing from the knee replacement, and no one mentioned anything was off. My dad was not sick, felt fine. Why didn't anyone see this?
But, please don't despair. My dad is doing really well. He had an auto transplant, he stayed in remission for 2 1/2 years with no drugs, and he is now on Revlimid and stable.
My only suggestion for you would be to see a myeloma specialist.
Best of luck to you.
In October 2008, he was picking up a door he was refinishing and his arm broke out of no where. When they did the x-ray on the arm, the doctor came back with "I think this is cancer." It turned out to be multiple myeloma.
We were in shock. All the testing from the knee replacement, and no one mentioned anything was off. My dad was not sick, felt fine. Why didn't anyone see this?
But, please don't despair. My dad is doing really well. He had an auto transplant, he stayed in remission for 2 1/2 years with no drugs, and he is now on Revlimid and stable.
My only suggestion for you would be to see a myeloma specialist.
Best of luck to you.
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mydad
Re: Should there have been a diagnosis before knee surgery?
I had sinusitis for over a year and did not realize it. This was back in my pre-myeloma diagnosis days when, like a lot of people, I did not go the doctor unless I was really sick.
Eventually those around me made it evident to me that it was not normal to always have a running nose. After starting with my GP and ending up in a ENTs office, I learned that I had a deviated septum that was restricting the sinus passages, making them prone to infection. Unknown at the time, I also had myeloma that was compromising my immune system, also making me prone to infections.
So I had surgery to correct the deviated septum and that is when those labs where run. The surgery went really well and it fixed the problem. I had problems with my sinuses for as long as I can remember, going back to when I was a teenager. I wish I had acted sooner, I can tell a big difference now. I did not know what normal sinuses were.
The ENT was really good and I still see him for problems I have with what is apparently hearing loss in my right hear from Velcade nerve damage. Not really proven, and it is hard to be sure that is it, but it seems to be the leading potential candidate after a lot of testing. This is not common and there is not a lot of experience out there with it.
At first I was a little upset that my myeloma was not diagnosed right away from those labs. I have no hard feelings about it now and realize it is not realistic to expect that from what I have learned how the medical system works, and my ENT is not incompetent or any worse an ENT than any other ENT out there.
I have read that on average it takes 3 visits to the GP and 6 months for the average person with myeloma to get a diagnosis when seeing the GP for myeloma-specific problems. Why would I expect an ENT specialist to make a myeloma diagnosis from reviewing a CBC lab result for surgery that is a little abnormal, but not life threatening?
I do not mean to be a downer, but I am a little concerned that an “internist” (not sure what that means in your case) is answering your questions about your husband’s prognosis. I feel that is a conversation that really needs to be had with your primary hematologist-oncologist. I would not ask or trust the opinion of a general doctor or specialist in another area.
Asking if you are going to die from this or not is a very natural and valid question to ask. There are statistics for the general population of myeloma patients that can give you an idea of what you might expect. But, in my experience and hearing from others, it is very difficult or not possible to give percentages and how long you have to live for an individual case.
I think it is reasonable for a hematologist-oncologist familiar with myeloma to say, in the near term, if death is an immediate concern or not. In my experience, the mid and long term answer to that question is not really known, especially until it is know how somebody is responding to treatment, which during the early treatment stages just after diagnosis is not known yet.
I have found that living with myeloma is learning to leave with uncertainty about what lies ahead. I only know how I am doing at the moment in time of my last lab tests and of my last office visit with my oncologist, and I am somewhat comforted by knowing generally things do not start to deteriorate too quickly for most. I should have some warning when they start to.
Eventually those around me made it evident to me that it was not normal to always have a running nose. After starting with my GP and ending up in a ENTs office, I learned that I had a deviated septum that was restricting the sinus passages, making them prone to infection. Unknown at the time, I also had myeloma that was compromising my immune system, also making me prone to infections.
So I had surgery to correct the deviated septum and that is when those labs where run. The surgery went really well and it fixed the problem. I had problems with my sinuses for as long as I can remember, going back to when I was a teenager. I wish I had acted sooner, I can tell a big difference now. I did not know what normal sinuses were.
The ENT was really good and I still see him for problems I have with what is apparently hearing loss in my right hear from Velcade nerve damage. Not really proven, and it is hard to be sure that is it, but it seems to be the leading potential candidate after a lot of testing. This is not common and there is not a lot of experience out there with it.
At first I was a little upset that my myeloma was not diagnosed right away from those labs. I have no hard feelings about it now and realize it is not realistic to expect that from what I have learned how the medical system works, and my ENT is not incompetent or any worse an ENT than any other ENT out there.
I have read that on average it takes 3 visits to the GP and 6 months for the average person with myeloma to get a diagnosis when seeing the GP for myeloma-specific problems. Why would I expect an ENT specialist to make a myeloma diagnosis from reviewing a CBC lab result for surgery that is a little abnormal, but not life threatening?
I do not mean to be a downer, but I am a little concerned that an “internist” (not sure what that means in your case) is answering your questions about your husband’s prognosis. I feel that is a conversation that really needs to be had with your primary hematologist-oncologist. I would not ask or trust the opinion of a general doctor or specialist in another area.
Asking if you are going to die from this or not is a very natural and valid question to ask. There are statistics for the general population of myeloma patients that can give you an idea of what you might expect. But, in my experience and hearing from others, it is very difficult or not possible to give percentages and how long you have to live for an individual case.
I think it is reasonable for a hematologist-oncologist familiar with myeloma to say, in the near term, if death is an immediate concern or not. In my experience, the mid and long term answer to that question is not really known, especially until it is know how somebody is responding to treatment, which during the early treatment stages just after diagnosis is not known yet.
I have found that living with myeloma is learning to leave with uncertainty about what lies ahead. I only know how I am doing at the moment in time of my last lab tests and of my last office visit with my oncologist, and I am somewhat comforted by knowing generally things do not start to deteriorate too quickly for most. I should have some warning when they start to.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Should there have been a diagnosis before knee surgery?
Smiles, thank you for being so kind to me. I am just a worry "wart" wife who is trying so hard to find an answer and to make some sense of what is happening to our life.
We are seeing an oncologist this Wednesday (September 24) and, if not satisfied with his answer, we are planning to go to MD Anderson in Houston Texas. A member of our community who I am aware of because of his community civic activities has just completed his stem cell replacement at MD Anderson and is doing extremely well.
I am sure everyone feels this way when told that they have cancer -- a huge kick in the stomach with the thought "wake up, this is a nightmare." I can say that my husband and I have never said "why us?" I mean, why not us? We are blessed in so many way beyond words and we plan on seeing this through to the very end of treatments and whatever it takes to make him well again. As I told my husband, "I have kissed way too many frogs in my lifetime and I do not plan on letting you go anytime soon." Anything other then remission is unacceptable!
So I will march myself into this doctor's office, who we know because he treated my step son with testicular cancer five years ago, with a notebook full of questions because, as far as I am concerned, this doctor is perhaps going to be treating the most loved man in my world. And every bit of energy my body can muster is going into that effort.
Thank you again for all your kindness and, if it is okay with you, I will put you in my prayers.
We are seeing an oncologist this Wednesday (September 24) and, if not satisfied with his answer, we are planning to go to MD Anderson in Houston Texas. A member of our community who I am aware of because of his community civic activities has just completed his stem cell replacement at MD Anderson and is doing extremely well.
I am sure everyone feels this way when told that they have cancer -- a huge kick in the stomach with the thought "wake up, this is a nightmare." I can say that my husband and I have never said "why us?" I mean, why not us? We are blessed in so many way beyond words and we plan on seeing this through to the very end of treatments and whatever it takes to make him well again. As I told my husband, "I have kissed way too many frogs in my lifetime and I do not plan on letting you go anytime soon." Anything other then remission is unacceptable!
So I will march myself into this doctor's office, who we know because he treated my step son with testicular cancer five years ago, with a notebook full of questions because, as far as I am concerned, this doctor is perhaps going to be treating the most loved man in my world. And every bit of energy my body can muster is going into that effort.
Thank you again for all your kindness and, if it is okay with you, I will put you in my prayers.
Re: Should there have been a diagnosis before knee surgery?
Even if you are satisfied with the opinion of your oncologist, if you have the time and resources to go to MD Anderson for a second opinion, I feel that can be worth doing. MD Anderson has myeloma specialists with good reputations. If MD Anderson affirms the treatment plan of your oncologist, that will just give your more peace of mind. If not, then you have some decisions to make.
If your oncologist recommends starting treatment immediately, I would go ahead and do that and not wait for a second opinion from MD Anderson or another center. Sometimes, it is important to get treatment started immediately, even if you are seemingly feeling fine. These days, with the treatment options available, I feel whatever you oncologist starts you with will likely be a good one. If the question comes up later if it is the best or not based on a valid second opinion, adjustments can be made later.
If your oncologist recommends starting treatment immediately, I would go ahead and do that and not wait for a second opinion from MD Anderson or another center. Sometimes, it is important to get treatment started immediately, even if you are seemingly feeling fine. These days, with the treatment options available, I feel whatever you oncologist starts you with will likely be a good one. If the question comes up later if it is the best or not based on a valid second opinion, adjustments can be made later.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
7 posts
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