Quality of Life
I wrote this opinion for purrandsimple, after we both read study results about the reduced QoL (Quality of Life) experienced by acromegalics. As a newly diagnosed patient, she was concerned about the bleak prognosis portrayed. She encouraged me to share my thoughts here.
Please note, you may not agree with what I had to say. If your medical situtation involved a lot of major associated conditions, you will probably feel your QoL was less than what I have written. The same is true if you have had to undergo numerous treatments- medicine, radiation, or multiple surgeries. Certainly our bodies have all suffered multiple assaults. My point was simply that the medical profession needs to take their awareness of the wide array of things that reduce our QoL and become proactive about identifying and treating them, too!
I had read the study a couple of years ago, but reread it today with a different reference point. I am going to mention some points of opinion- not in a particular order, so I hope they make sense.
I think it is important to note the distinctions between patients "cured" with surgery alone, vs. those treated with medication, and those treated with radiation. There seems to be 3 different worlds there. Each has its own sets of problems. Long term effects of radiation and considerable side-effects of meds are certainly not positive. For now, we will take the optimistic approach and just talk about surgery-only ones. I used to have copy of one of their scales, but can't find it.
It seems to me that many of the criteria are so closely linked that they ought to be considered as one thing- if you can't sleep well, you are naturally going to be low-energy, put out less physical activity- resulting in weight gain-, have less interest in social relationships, and be more emotionally sensitive. In many respects, if you can get adequate rest, many of the descriptors might naturally be relieved. Of course, the next obvious point is that of getting adequate rest. It may be that our overall need for rest is increased. Also, some of the emotional issues may cause insomnia which makes it worse. I noticed they commented that "age was a significant indicator of physical functional, limitations on role involvement", etc. Well, DUH! Is it not true of everyone our age and older that we begin to complain of those limitations? It's called AGING! We just have a good excuse for ours:)
Of course, as you are becoming aware, acro does a lot of lousy damage to our bodies that does not go way after "cure". That is why I included the last several pages in my journal, even though they weren't obviously acro-related, since they came after my "cure". Some things improve drastically over time, as you can tell by my photos. Other damage we will recognize over time and deal with, like my osteoarthritis and torn menisci. One quote in the article was that they couldn't separate how much of the perceived effects on quality of life were from direct mechanical damage and which were from "the psychological effects of dealing with the disease." Its effects will always be with us (sometimes more overtly than others), and the spectre of it hiding behind our back waiting to recur will always be there. My dr. said they continue to watch closely for 10 years- but will monitor for the rest of our life. Even cancer victims only have to sweat the first 5 years the most! That is a very legitimate reason to feel "victimized" or as someone said to "be angry because our bodies have betrayed us."
Personal relationships and social function are interesting factors. I think there are a lot of logical connections here. Before surgery many acros have become quite self-conscious of the changes in how they look. (My comment was "I got old. I got fat. I got ugly.") I have an acquaintance who also has acro. His deformity is far more obvious than mine. He could have been in the textbooks. I know it has affected his social life and how self-confident he is. In addition, we fatigue more easily, have more emotional sensitivity, and may be in more pain- and that is not even considering the serious effects like heart conditions. None of these things make us want to be around strangers or put effort into relationships. This can even include our families. After "cure" we have a lot of repair to do in those areas. However, the emotional roller coaster may never go away entirely.
One thing I didn't learn for a long time, and wasn't prepared for, was the constellation of related problems that I would have to deal with. I just figured successful surgery and normal IGF-1 would mean I was back to the same health prognosis as everyone else my age. There was an increased psychological factor that for years I (and my doctors) had blown off a lot of medical issues, which SHOULD have set off an alarm. So now, when a health issue comes up, I struggle about being too unconcerned vs. being a hypochondriac. Fortunately, I have a marvelous GP, who understands that a part of being "interesting" is that we never just assume anything with me. The odds physicians use to direct their decision making just don't apply to me. It sometimes means unnecessary tests, etc., but it gives him and me more peace of mind, and so far the insurance company hasn't balked about anything we've done. That's why you need a doctor that understands acro and understands your needs. One person in the support group described us as having symptoms of post-traumatic stress syndrome, especially right after diagnosis. There were times when that was exactly how I felt- obsessive thoughts, insomnia, emotional, etc.
Okay, time to sum up this rambling. Yes, we got a lousy deal with this disease- even those of us who appear to have been cured comparatively easily. The truth is, there are a lot of lousy diseases out there. In my opinion, the keys are:
1) dealing as completely as possible with the immediate tumor and its effects, whether by surgery, meds, radiation, or whatever.
2) becoming aware of our bodies and what we need to pay attention to
3) finding well-equipped physicians who actually understand our physical and emotional needs. Some of them are very willing to learn, if given the opportunity. My GP tells me to make end-of-day appointments, because he likes to talk to me and always learns something from me. He'd never had an acro patient before, but reads any studies I bring him.
4) learning what preventive steps we need to take to counteract some of the negative possibilities- exercise, colonoscopies, etc. One thing that did was help me regain a sense of control over my body, and not feel so much like a victim.
5) coming to terms with how we look and how we feel about that- with counseling if necessary- to address the self-image issues that reportedly have a big impact on social functioning
6) seeking treatment for the lasting effects, including depression, joint pain, insomnia, fatigue, etc.
The summary of the article said that it was possible that the "long-term withdrawl effect, (when the GH level drops) resulted in irreversible alterations in the perceived quality of life." I strongly agree that the effects are there, but I don't see "irreversible" to mean "cannot be changed", but to mean "it is a natural, common occurrence." Where I really find the problem, therefore, is that it appears that nobody has been addressing all the above issues and helping acromegalics get past them. This report was supposedly the first to look at cured acromegalic patients and their perceived QOL. The next obvious question is, "Now that we've established a need/effect, what are they going to do about it?" These problems don't just have to be accepted. They can be addressed and give acromegalics a BETTER quality of life! If the doctors don't know to do it, acromegalics have to be our own advocates and initiate those cures, too.
Jeri
Please note, you may not agree with what I had to say. If your medical situtation involved a lot of major associated conditions, you will probably feel your QoL was less than what I have written. The same is true if you have had to undergo numerous treatments- medicine, radiation, or multiple surgeries. Certainly our bodies have all suffered multiple assaults. My point was simply that the medical profession needs to take their awareness of the wide array of things that reduce our QoL and become proactive about identifying and treating them, too!
I had read the study a couple of years ago, but reread it today with a different reference point. I am going to mention some points of opinion- not in a particular order, so I hope they make sense.
I think it is important to note the distinctions between patients "cured" with surgery alone, vs. those treated with medication, and those treated with radiation. There seems to be 3 different worlds there. Each has its own sets of problems. Long term effects of radiation and considerable side-effects of meds are certainly not positive. For now, we will take the optimistic approach and just talk about surgery-only ones. I used to have copy of one of their scales, but can't find it.
It seems to me that many of the criteria are so closely linked that they ought to be considered as one thing- if you can't sleep well, you are naturally going to be low-energy, put out less physical activity- resulting in weight gain-, have less interest in social relationships, and be more emotionally sensitive. In many respects, if you can get adequate rest, many of the descriptors might naturally be relieved. Of course, the next obvious point is that of getting adequate rest. It may be that our overall need for rest is increased. Also, some of the emotional issues may cause insomnia which makes it worse. I noticed they commented that "age was a significant indicator of physical functional, limitations on role involvement", etc. Well, DUH! Is it not true of everyone our age and older that we begin to complain of those limitations? It's called AGING! We just have a good excuse for ours:)
Of course, as you are becoming aware, acro does a lot of lousy damage to our bodies that does not go way after "cure". That is why I included the last several pages in my journal, even though they weren't obviously acro-related, since they came after my "cure". Some things improve drastically over time, as you can tell by my photos. Other damage we will recognize over time and deal with, like my osteoarthritis and torn menisci. One quote in the article was that they couldn't separate how much of the perceived effects on quality of life were from direct mechanical damage and which were from "the psychological effects of dealing with the disease." Its effects will always be with us (sometimes more overtly than others), and the spectre of it hiding behind our back waiting to recur will always be there. My dr. said they continue to watch closely for 10 years- but will monitor for the rest of our life. Even cancer victims only have to sweat the first 5 years the most! That is a very legitimate reason to feel "victimized" or as someone said to "be angry because our bodies have betrayed us."
Personal relationships and social function are interesting factors. I think there are a lot of logical connections here. Before surgery many acros have become quite self-conscious of the changes in how they look. (My comment was "I got old. I got fat. I got ugly.") I have an acquaintance who also has acro. His deformity is far more obvious than mine. He could have been in the textbooks. I know it has affected his social life and how self-confident he is. In addition, we fatigue more easily, have more emotional sensitivity, and may be in more pain- and that is not even considering the serious effects like heart conditions. None of these things make us want to be around strangers or put effort into relationships. This can even include our families. After "cure" we have a lot of repair to do in those areas. However, the emotional roller coaster may never go away entirely.
One thing I didn't learn for a long time, and wasn't prepared for, was the constellation of related problems that I would have to deal with. I just figured successful surgery and normal IGF-1 would mean I was back to the same health prognosis as everyone else my age. There was an increased psychological factor that for years I (and my doctors) had blown off a lot of medical issues, which SHOULD have set off an alarm. So now, when a health issue comes up, I struggle about being too unconcerned vs. being a hypochondriac. Fortunately, I have a marvelous GP, who understands that a part of being "interesting" is that we never just assume anything with me. The odds physicians use to direct their decision making just don't apply to me. It sometimes means unnecessary tests, etc., but it gives him and me more peace of mind, and so far the insurance company hasn't balked about anything we've done. That's why you need a doctor that understands acro and understands your needs. One person in the support group described us as having symptoms of post-traumatic stress syndrome, especially right after diagnosis. There were times when that was exactly how I felt- obsessive thoughts, insomnia, emotional, etc.
Okay, time to sum up this rambling. Yes, we got a lousy deal with this disease- even those of us who appear to have been cured comparatively easily. The truth is, there are a lot of lousy diseases out there. In my opinion, the keys are:
1) dealing as completely as possible with the immediate tumor and its effects, whether by surgery, meds, radiation, or whatever.
2) becoming aware of our bodies and what we need to pay attention to
3) finding well-equipped physicians who actually understand our physical and emotional needs. Some of them are very willing to learn, if given the opportunity. My GP tells me to make end-of-day appointments, because he likes to talk to me and always learns something from me. He'd never had an acro patient before, but reads any studies I bring him.
4) learning what preventive steps we need to take to counteract some of the negative possibilities- exercise, colonoscopies, etc. One thing that did was help me regain a sense of control over my body, and not feel so much like a victim.
5) coming to terms with how we look and how we feel about that- with counseling if necessary- to address the self-image issues that reportedly have a big impact on social functioning
6) seeking treatment for the lasting effects, including depression, joint pain, insomnia, fatigue, etc.
The summary of the article said that it was possible that the "long-term withdrawl effect, (when the GH level drops) resulted in irreversible alterations in the perceived quality of life." I strongly agree that the effects are there, but I don't see "irreversible" to mean "cannot be changed", but to mean "it is a natural, common occurrence." Where I really find the problem, therefore, is that it appears that nobody has been addressing all the above issues and helping acromegalics get past them. This report was supposedly the first to look at cured acromegalic patients and their perceived QOL. The next obvious question is, "Now that we've established a need/effect, what are they going to do about it?" These problems don't just have to be accepted. They can be addressed and give acromegalics a BETTER quality of life! If the doctors don't know to do it, acromegalics have to be our own advocates and initiate those cures, too.
Jeri
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