Lung Cancer Treatment
March 23, 2009 4:10 PM Subscribe
My mother has stage IV, metastatic non-small-cell lung cancer. Any advice on my challenging the terribly poor standard of care?
She is 59, white, has not smoked in 10-15 years (probably smoked 20 pack-years). PS of 1 and N0. She has mets on her skull, left adrenal gland, ribcage, and subcutaneously. I have been doing research in some journals and I don't feel comfortable with what the doctors we have seen so far are recommending. They are recommending a platinum-based drug, such as carbo-/cisplatin, plus taxol/taxotere, and avastin. This is a standard treatment protocol, but the standard treatment protocol has extremely poor success for stage IV lung cancer. I would much rather see a multi-faceted approach, as outlined in Lung Cancer (2005) 47, 85—91, which describes long-term survivors of lung cancer. It claims that surgery as part of initial treatment significantly improves outcome.
I have found additional research that describes the benefits of RF ablation, and stereotactic body radiotherapy (The Lancet Oncology, 9 (7), pp. 621-628, Proc Am Soc Clin Oncol 21: 2002 (abstr 1864)), but those procedures have not been raised by either of the doctors we have seen. Does anyone know where those procedures are performed in the US, if anywhere?
I almost feel like the oncologists we have seen so far have resigned themselves to using treatments that work poorly because they deal with the disease and the patients everyday and don't have the time or resources to pursue the treatments that are most likely to be maximally effective. I will not resign myself to a suboptimal treatment, no matter how bad the odds. What can I do to find the best treatment, or at least find someone who will explain to me why these treatments would not help my mother?
Feel free to email lungcancertreatment@gmail.com for follow ups or private messages. Thanks.
She is 59, white, has not smoked in 10-15 years (probably smoked 20 pack-years). PS of 1 and N0. She has mets on her skull, left adrenal gland, ribcage, and subcutaneously. I have been doing research in some journals and I don't feel comfortable with what the doctors we have seen so far are recommending. They are recommending a platinum-based drug, such as carbo-/cisplatin, plus taxol/taxotere, and avastin. This is a standard treatment protocol, but the standard treatment protocol has extremely poor success for stage IV lung cancer. I would much rather see a multi-faceted approach, as outlined in Lung Cancer (2005) 47, 85—91, which describes long-term survivors of lung cancer. It claims that surgery as part of initial treatment significantly improves outcome.
I have found additional research that describes the benefits of RF ablation, and stereotactic body radiotherapy (The Lancet Oncology, 9 (7), pp. 621-628, Proc Am Soc Clin Oncol 21: 2002 (abstr 1864)), but those procedures have not been raised by either of the doctors we have seen. Does anyone know where those procedures are performed in the US, if anywhere?
I almost feel like the oncologists we have seen so far have resigned themselves to using treatments that work poorly because they deal with the disease and the patients everyday and don't have the time or resources to pursue the treatments that are most likely to be maximally effective. I will not resign myself to a suboptimal treatment, no matter how bad the odds. What can I do to find the best treatment, or at least find someone who will explain to me why these treatments would not help my mother?
Feel free to email lungcancertreatment@gmail.com for follow ups or private messages. Thanks.
anonymous, could you follow-up with one of the moderators and let us know how your mother feels about this? If she, as the patient, is giving the impression that she doesn't want to go through aggressive treatment, the doctors aren't likely to listen to you in the first place.
posted by halogen at 4:43 PM on March 23, 2009
posted by halogen at 4:43 PM on March 23, 2009
Thirding scrump. My experience is that doctors respond well to loved ones taking an interest in the treatment, research- and suggestion-wise. The sad reality is that the doctors treat many many people and so will naturally be inclined toward the treatment that works (or is allowed) by most patients. There's nothing wrong with "would it make a difference if she had [treatment name]?"
posted by rhizome at 4:58 PM on March 23, 2009
posted by rhizome at 4:58 PM on March 23, 2009
Get a second or third opinion if you don't like the first, but please don't insult your oncologists by suggesting that they are letting stage IV cancer patients die because they're not willing to fight for their patients. If there's any group of doctors who fight aggressively for their patients--probably sometimes too hard--it's oncologists.
They're hopefully following the standardized guidelines at the National Comprehensive Cancer Network. You can see the algorithms for treatment, based on evidence and expert opinions at nccn.com.
The official guideline, evidence-based, and endorsed by multiple specialty organizations including thoracic surgeons and oncologists, does not mention surgery.
If your mother wants to pursue all these things that you describe, including all the risks and benefits, you really should probably be seeing an oncologist at your nearest academic center, if you're not already. You could also ask if she could be presented at a multi-disciplinary conference. I can't imagine how hard it is to see a young mother like yours suffering with such a disease, but understand that the prognosis of any stage IV cancer is grim, and that while there are always long-term survival outliers, the vast majority of treatments may prolong survival, but do not offer a cure. This cancer has already spread to multiple parts of the body, and once this has happened, it is often too late, as the cancer has actually spread throughout the entire body, but we can only detect it in the places it has favorably grown.
(I am not your doctor nor an oncologist; this is not medical advice, just a sad opinion on a grim and terrible disease. I would also consider asking early rather than late about hospice care. Many people believe hospice care means giving up, which it doesn't, and all the patients I've seen who enter hospice note that their only wish was that someone would have discussed it with them sooner. Good luck.)
posted by gramcracker at 5:46 PM on March 23, 2009 [8 favorites]
They're hopefully following the standardized guidelines at the National Comprehensive Cancer Network. You can see the algorithms for treatment, based on evidence and expert opinions at nccn.com.
The official guideline, evidence-based, and endorsed by multiple specialty organizations including thoracic surgeons and oncologists, does not mention surgery.
If your mother wants to pursue all these things that you describe, including all the risks and benefits, you really should probably be seeing an oncologist at your nearest academic center, if you're not already. You could also ask if she could be presented at a multi-disciplinary conference. I can't imagine how hard it is to see a young mother like yours suffering with such a disease, but understand that the prognosis of any stage IV cancer is grim, and that while there are always long-term survival outliers, the vast majority of treatments may prolong survival, but do not offer a cure. This cancer has already spread to multiple parts of the body, and once this has happened, it is often too late, as the cancer has actually spread throughout the entire body, but we can only detect it in the places it has favorably grown.
(I am not your doctor nor an oncologist; this is not medical advice, just a sad opinion on a grim and terrible disease. I would also consider asking early rather than late about hospice care. Many people believe hospice care means giving up, which it doesn't, and all the patients I've seen who enter hospice note that their only wish was that someone would have discussed it with them sooner. Good luck.)
posted by gramcracker at 5:46 PM on March 23, 2009 [8 favorites]
You don't say where your mother is. Do you have access to a research hospital? Try searching clinicaltrials.gov to see who is doing a trial that might be helpful (am assuming you're in the US). There are some trials out there that promote an immune response by targeting specific proteins or by suppressing proteins that turn off an immune response. My understanding is that surgery can help but it depends a lot on the original tumor - if it's infiltrating it's going to be much harder to go after surgically. And once you've got multiple mets I have no idea how much good surgery will do. Lung cancer is so tough partly because it's often diagnosed very late. There is nothing unusual about seeking a second opinion.
When my mother was on a platinum drug she became neutropenic (no white count). This is dire and needs to be carefully monitored. If she goes with that treatment they'll try some other drugs that promote white cell production at the same time. With stage IV lung cancer you're looking for a little time and quality of life. I can't speak to the rf ablation in that regard - my mother didn't live long enough to try it. If I remember correctly it was something being discussed as a possibility. She was treated at Evanston Northwestern Hospital outside Chicago - a very good place. You'll want to talk to hospice at the appropriate time and you may need to push your mother's doctors some about when that time is. It's a very hard conversation to have and one I wish that had happened a little sooner for my mother. One reaches a point where comfort takes primacy because the other options are untenable in terms of likelihood of success and quality of life issues.
I'm sorry you're going through this. It's lousy, especially given how many years it has been since your mother smoked. Definitely see if you can get your mother into a trial and good luck to you both.
posted by leslies at 6:00 PM on March 23, 2009 [1 favorite]
When my mother was on a platinum drug she became neutropenic (no white count). This is dire and needs to be carefully monitored. If she goes with that treatment they'll try some other drugs that promote white cell production at the same time. With stage IV lung cancer you're looking for a little time and quality of life. I can't speak to the rf ablation in that regard - my mother didn't live long enough to try it. If I remember correctly it was something being discussed as a possibility. She was treated at Evanston Northwestern Hospital outside Chicago - a very good place. You'll want to talk to hospice at the appropriate time and you may need to push your mother's doctors some about when that time is. It's a very hard conversation to have and one I wish that had happened a little sooner for my mother. One reaches a point where comfort takes primacy because the other options are untenable in terms of likelihood of success and quality of life issues.
I'm sorry you're going through this. It's lousy, especially given how many years it has been since your mother smoked. Definitely see if you can get your mother into a trial and good luck to you both.
posted by leslies at 6:00 PM on March 23, 2009 [1 favorite]
The Lance Armstrong Foundation is set up to help folks in this exact situation. Best wishes for you and your mother.
posted by LastOfHisKind at 6:30 PM on March 23, 2009
posted by LastOfHisKind at 6:30 PM on March 23, 2009
i'll nth the suggestion to talk to your doctors, reasonably. doctors these days are incredibly busy and burdened with insurance/business issues on top of everything else. they just can't devote the time they really need to sit down and create a truly individualized plan of care. so, don't berate them for it, partner with them. sit down, tell them you've been reading about other options, and you'd like to hear their thoughts about them. it may be that they've considered and rejected those options for reasons/data that are not available to you. or it may be that they just haven't had the free time to sit down and think, "what can i do for this particular patient?" in fact, if these plans of care you've researched are new, the doctors may simply not have had a chance to read the study. in which case they may appreciate your bringing it up. i have family members who are doctors, and it's a real issue. with 24 hours in a day, how do you keep up with ALL the literature, take care of the number of patients you have to take care of, manage the paperwork and insurance issues, and maybe fit in a little time with your family as well. if there is a failure there, it may just be a lack of bandwidth rather than interest in your mom's health.
i wouldn't get accusatory. second opinions are always worthwhile. but these doctors are humans and it is unlikely that they are just being lazy about her care so they can get in another round of golf.
if, however, you find they are difficult to work with, dismissive and uncommunicative, it is TOTALLY worth getting a few other opinions and seeing if someone else is more responsive.
remember though, that the good doctor will take your ideas under consideration, not necessarily do everything you ask them to do. it may be that the things you've researched are not a good fit for her case for some reason, and that's why they were never pursued. but a good doctor will tell you why. good luck.
posted by thinkingwoman at 7:24 PM on March 23, 2009
i wouldn't get accusatory. second opinions are always worthwhile. but these doctors are humans and it is unlikely that they are just being lazy about her care so they can get in another round of golf.
if, however, you find they are difficult to work with, dismissive and uncommunicative, it is TOTALLY worth getting a few other opinions and seeing if someone else is more responsive.
remember though, that the good doctor will take your ideas under consideration, not necessarily do everything you ask them to do. it may be that the things you've researched are not a good fit for her case for some reason, and that's why they were never pursued. but a good doctor will tell you why. good luck.
posted by thinkingwoman at 7:24 PM on March 23, 2009
Exactly what gramcracker said.
Please don't do what I did. My mom died of cancer, after coming out of remission 6 times, over a span of 16 years. She was about 20 years younger than your mom when diagnosed, so she was sick most of my childhood, and fought the battle with the same team of doctors the whole time. When she'd gone through all the available chemos at the time, and there were only test medicines they could offer, it was the end. I was, well, more than distraught. And so, at some point during my mom's last 24 hours, I yelled at the doctor right there in the hallway of the hospital.... it was something like, "Why the fuck aren't you DOING SOMETHING?!" except probably not as polite.
He laid it out for me, quietly but very strongly, as well he should have. He told me what I really knew, but was too upset and angry to see: Her doctors had done everything they could. They tried it all. They tried until the end. They didn't want her to lose the battle, but they'd reached the end of what medicine could do at that time.
When she died, her doctor stood with us in her room. And cried with us.
So I guess I'm sharing this to say, don't be me. I suppose there is a doctor somewhere who just doesn't give a damn. But, most of them care quite a bit, and do every single thing they can, given your mom's personal medical conditions and what we know about fighting cancer to date.
posted by Houstonian at 7:24 PM on March 23, 2009 [1 favorite]
Please don't do what I did. My mom died of cancer, after coming out of remission 6 times, over a span of 16 years. She was about 20 years younger than your mom when diagnosed, so she was sick most of my childhood, and fought the battle with the same team of doctors the whole time. When she'd gone through all the available chemos at the time, and there were only test medicines they could offer, it was the end. I was, well, more than distraught. And so, at some point during my mom's last 24 hours, I yelled at the doctor right there in the hallway of the hospital.... it was something like, "Why the fuck aren't you DOING SOMETHING?!" except probably not as polite.
He laid it out for me, quietly but very strongly, as well he should have. He told me what I really knew, but was too upset and angry to see: Her doctors had done everything they could. They tried it all. They tried until the end. They didn't want her to lose the battle, but they'd reached the end of what medicine could do at that time.
When she died, her doctor stood with us in her room. And cried with us.
So I guess I'm sharing this to say, don't be me. I suppose there is a doctor somewhere who just doesn't give a damn. But, most of them care quite a bit, and do every single thing they can, given your mom's personal medical conditions and what we know about fighting cancer to date.
posted by Houstonian at 7:24 PM on March 23, 2009 [1 favorite]
OP, I'm very sorry to hear that you and your mother are going through this. I'd like to urge you to consider several things:
Firstly, of course get a second and third and perhaps fourth opinion if you have not received them yet.
But before doing so, I suggest you address what might be a miscommunication between you and your mother's doctors, as well as what may be a fundamental misunderstanding on your part of what her disease is, and what these therapies are aimed to do. Please make a follow-up appointment with the oncologist, specifically to answer additional questions you may have and explain her prognosis in greater detail. If they are unavailable or unwilling to do so, DEFINITELY seek care elsewhere.
I almost feel like the oncologists we have seen so far have resigned themselves to using treatments that work poorly because they deal with the disease and the patients everyday and don't have the time or resources to pursue the treatments that are most likely to be maximally effective. I will not resign myself to a suboptimal treatment, no matter how bad the odds. What can I do to find the best treatment, or at least find someone who will explain to me why these treatments would not help my mother?
This is where my alarm bells go off. Please step back for a moment and consider the possibility that a physician might actually be doing a disservice to a patient with wide-spread metastatic lung cancer by suggesting something like major thoracic surgery, which has a fairly high risk of death on the table and may well make the last few months of someone's life even more miserable. That would be the very definition of "suboptimal" care in my book as the therapies that you are considering may well be "maximally effective" in doing nothing other than pouring salt on a dieing woman's wounds. I'm sensing strong feelings of guilt and a will "not to give up" ("I will not resign myself..") but consider the possibility that your mother's condition is not curable and that therapies (like chemotherapy) in such scenarios are used with palliative intent. If sadly, her condition is terminal, then not giving up may mean playing a more active role in managing her palliative care as opposed to pushing for a potentially harmful intervention (eg. surgery). It may mean assuring that she is comfortable both physically and spiritually, has her affairs in order, has a chance to see the people that she needs to see and do the things she needs to do, and that ultimately she passes away on her own terms. That is no small task by any means.
Also, consider the very important fact that while your mother needs a great advocate like you, the decision to pursue a particular course of medical care is not yours to make -- it is your mother's. If we assume that their is any hope at all of a cure in her case, the odds of it are likely to be quite poor, and it is up to her to decide if going through what may be an extremely daunting therapeutic course is worth it at this stage in her life.
In your zeal to try to grasp the literature on this disease you have glossed over the simple fact that your mother's condition is likely to be glaringly different than that of the patients observed in the studies that you cite. For example, that Lancet Oncology article is a summary description of therapy for patients with very early, stage I disease, while the Proceedings article is similarly limited to subjects with stage I-II NSCLC. These procedures are performed quite frequently all over the US, but they simply may have no role in your mother's particular condition. With respect to the article from Japan, note that of the 17 2-year survivors in their series of 222 subjects, only 3 survived for more than 5 years, and of those, none had metastasis to more than 1 other site, and 2 of 3 had disease entirely restricted to the lungs. Only two of the 17 had metastasis to multiple sites, neither of which survived for more than about 3 years or received anything other than chemo, likely because their condition essentially precluded other interventions. The retrospective design of that study is subject to massive confounding with respect to why certain patients were chosen to undergo surgery in the first place, limiting any conclusion that can be drawn about the therapy itself. The point is, the conclusions of these studies may well not apply to your mother's case at all.
This is a part of the medical literature that I am reasonably well versed in and I can tell you that there is little to no evidence to support the use of surgery (or radioablation/radiotherapy) with curative intent in a patient with stage IV NSCLC and widespread metastatic disease to multiple sites and organs. There is a limited role for these (particularly radiotherapy) in the treatment of symptoms such as metastatic bone pain, but again, the goal is palliation.
If you look hard enough and push hard enough, you may well eventually find someone who is willing to essentially stray from the standard of care and perform all manner of non evidence-based interventions. If this is what you want, then all you need to do is keeping knocking on doors until you hear what you want. But please again, make sure you are both respecting your mother's wishes in pursuing such an avenue and that you both realize that their is substantial risk of further harm being done with such an approach. Consider that while your perusal of the medical literature is quite admirable, it has not necessarily left you with greater insight on the subject than the professionals you are consulting.
posted by drpynchon at 7:47 PM on March 23, 2009 [21 favorites]
Firstly, of course get a second and third and perhaps fourth opinion if you have not received them yet.
But before doing so, I suggest you address what might be a miscommunication between you and your mother's doctors, as well as what may be a fundamental misunderstanding on your part of what her disease is, and what these therapies are aimed to do. Please make a follow-up appointment with the oncologist, specifically to answer additional questions you may have and explain her prognosis in greater detail. If they are unavailable or unwilling to do so, DEFINITELY seek care elsewhere.
I almost feel like the oncologists we have seen so far have resigned themselves to using treatments that work poorly because they deal with the disease and the patients everyday and don't have the time or resources to pursue the treatments that are most likely to be maximally effective. I will not resign myself to a suboptimal treatment, no matter how bad the odds. What can I do to find the best treatment, or at least find someone who will explain to me why these treatments would not help my mother?
This is where my alarm bells go off. Please step back for a moment and consider the possibility that a physician might actually be doing a disservice to a patient with wide-spread metastatic lung cancer by suggesting something like major thoracic surgery, which has a fairly high risk of death on the table and may well make the last few months of someone's life even more miserable. That would be the very definition of "suboptimal" care in my book as the therapies that you are considering may well be "maximally effective" in doing nothing other than pouring salt on a dieing woman's wounds. I'm sensing strong feelings of guilt and a will "not to give up" ("I will not resign myself..") but consider the possibility that your mother's condition is not curable and that therapies (like chemotherapy) in such scenarios are used with palliative intent. If sadly, her condition is terminal, then not giving up may mean playing a more active role in managing her palliative care as opposed to pushing for a potentially harmful intervention (eg. surgery). It may mean assuring that she is comfortable both physically and spiritually, has her affairs in order, has a chance to see the people that she needs to see and do the things she needs to do, and that ultimately she passes away on her own terms. That is no small task by any means.
Also, consider the very important fact that while your mother needs a great advocate like you, the decision to pursue a particular course of medical care is not yours to make -- it is your mother's. If we assume that their is any hope at all of a cure in her case, the odds of it are likely to be quite poor, and it is up to her to decide if going through what may be an extremely daunting therapeutic course is worth it at this stage in her life.
In your zeal to try to grasp the literature on this disease you have glossed over the simple fact that your mother's condition is likely to be glaringly different than that of the patients observed in the studies that you cite. For example, that Lancet Oncology article is a summary description of therapy for patients with very early, stage I disease, while the Proceedings article is similarly limited to subjects with stage I-II NSCLC. These procedures are performed quite frequently all over the US, but they simply may have no role in your mother's particular condition. With respect to the article from Japan, note that of the 17 2-year survivors in their series of 222 subjects, only 3 survived for more than 5 years, and of those, none had metastasis to more than 1 other site, and 2 of 3 had disease entirely restricted to the lungs. Only two of the 17 had metastasis to multiple sites, neither of which survived for more than about 3 years or received anything other than chemo, likely because their condition essentially precluded other interventions. The retrospective design of that study is subject to massive confounding with respect to why certain patients were chosen to undergo surgery in the first place, limiting any conclusion that can be drawn about the therapy itself. The point is, the conclusions of these studies may well not apply to your mother's case at all.
This is a part of the medical literature that I am reasonably well versed in and I can tell you that there is little to no evidence to support the use of surgery (or radioablation/radiotherapy) with curative intent in a patient with stage IV NSCLC and widespread metastatic disease to multiple sites and organs. There is a limited role for these (particularly radiotherapy) in the treatment of symptoms such as metastatic bone pain, but again, the goal is palliation.
If you look hard enough and push hard enough, you may well eventually find someone who is willing to essentially stray from the standard of care and perform all manner of non evidence-based interventions. If this is what you want, then all you need to do is keeping knocking on doors until you hear what you want. But please again, make sure you are both respecting your mother's wishes in pursuing such an avenue and that you both realize that their is substantial risk of further harm being done with such an approach. Consider that while your perusal of the medical literature is quite admirable, it has not necessarily left you with greater insight on the subject than the professionals you are consulting.
posted by drpynchon at 7:47 PM on March 23, 2009 [21 favorites]
Extraordinarily well said in every aspect, drpynchon, particularly in the discussion of the literature and the standard of care.
posted by bbranden1 at 7:56 PM on March 23, 2009
posted by bbranden1 at 7:56 PM on March 23, 2009
Very well said, drpynchon.
To the OP: my father was diagnosed last year with metastatic colon cancer and congestive heart failure. His cancer has only metastasized to one location, the liver. His doctors initially suggested chemotherapy to address the tumors while strongly discouraging surgery and radiation therapy. I initially resisted for similar reasons to yours, and as his health care proxy was inquiring into surgical and even experimental drug options while he was too sick to make decisions.
What I learned is essentially what drpynchon said, that though there are several studies and new treatments, they are usually indicated and tested on people with earlier stage cancer than my father's and that treating his condition aggressively (i.e., surgery) would likely result in either hastening his death or increasing his pain. His heart condition essentially prevents him from undergoing liver resection, and having surgery on the primary tumor is not going to address the metastases. In addition, and most importantly, he does not want to undergo surgery. So when he was feeling well enough to make the decision, we discussed it with his oncologist, got a second and third opinion, and decided to go with chemotherapy.
Though chemo is generally used as a palliative treatment in Stage 4 IV cancers, it can definitely prolong life, for months or sometimes years. I'll put it this way - in September, my father was sent home with hospice care and given a month to live. At the month mark, he felt well enough to start chemo. He is not only still alive six months later, but feels great and his liver lesions are slightly smaller. He is currently delighting in proving his doctors wrong about his prognosis.
There is a lot to be said for addressing quality of life in this decision. Be sure that you also understand exactly what it is that your mother wants. It is admirable of you to learn so much about her condition and it is fantastic that you are such a strong patient advocate for your mother. It certainly will help with her care. But you need to make sure that, no matter how you feel or what you want, this is your mother's decision. By all means encourage her to ask questions and get second and third opinions, but make sure that you carry out her wishes.
posted by bedhead at 8:29 PM on March 23, 2009
To the OP: my father was diagnosed last year with metastatic colon cancer and congestive heart failure. His cancer has only metastasized to one location, the liver. His doctors initially suggested chemotherapy to address the tumors while strongly discouraging surgery and radiation therapy. I initially resisted for similar reasons to yours, and as his health care proxy was inquiring into surgical and even experimental drug options while he was too sick to make decisions.
What I learned is essentially what drpynchon said, that though there are several studies and new treatments, they are usually indicated and tested on people with earlier stage cancer than my father's and that treating his condition aggressively (i.e., surgery) would likely result in either hastening his death or increasing his pain. His heart condition essentially prevents him from undergoing liver resection, and having surgery on the primary tumor is not going to address the metastases. In addition, and most importantly, he does not want to undergo surgery. So when he was feeling well enough to make the decision, we discussed it with his oncologist, got a second and third opinion, and decided to go with chemotherapy.
Though chemo is generally used as a palliative treatment in Stage 4 IV cancers, it can definitely prolong life, for months or sometimes years. I'll put it this way - in September, my father was sent home with hospice care and given a month to live. At the month mark, he felt well enough to start chemo. He is not only still alive six months later, but feels great and his liver lesions are slightly smaller. He is currently delighting in proving his doctors wrong about his prognosis.
There is a lot to be said for addressing quality of life in this decision. Be sure that you also understand exactly what it is that your mother wants. It is admirable of you to learn so much about her condition and it is fantastic that you are such a strong patient advocate for your mother. It certainly will help with her care. But you need to make sure that, no matter how you feel or what you want, this is your mother's decision. By all means encourage her to ask questions and get second and third opinions, but make sure that you carry out her wishes.
posted by bedhead at 8:29 PM on March 23, 2009
Mod note: This is a follow-up from anonymous.
First of all, I would just like to say that I love metafilter, and I appreciate so much the people on it, askme in particular. There are so many no-bullshit, reasonable, emotionally intelligent, effectively-communicating people on here--I wish there were such a high density in the real world, too ;).
I'd like to respond to drpynchon, whose answer I appreciate greatly. Thank you, first of all.
I certainly know that the decisions are my mother's to make here, to address something that you and many other posters raise. I also know that I am a layperson discussing issues with people who have many more years education and experience than I do.
I think we agree that our discussions, and the treatment, should be evidence-based, as you mention. We also agree that the current standard of care, which is based on the most certain evidence, is quite poor. So poor, in fact, to have been labeled 'palliative,' or without 'curative intent.' In other words, with respect to the treatment of stage IV lung cancer with the intent to eliminate it, the evidence allows us to conclude only that the standard of care advocated by, say, NCCN, is barely better than doing nothing. We can argue about the definition of 'barely better,' so let me be clear, as it may also help your concerns over my 'guilt,' etc.: most people diagnosed with stage IV lung cancer will die soon after of complications related to the cancer. Some significant but non-entire fraction of the population will have their lives extended meagerly (beyond what you would expect without the standard of care) by the treatment (a matter of a couple months, perhaps less); some tiny, tiny fraction will have their lives extended more significantly (a year or two, maybe). Some small but measurable fraction probably live less time than they would have without the standard of care.
As an aside, I would challenge the use of terms like 'palliative' and 'curative' with respect to the chemotherapy at all. We both know that chemotherapy can be used to 'cure' cancers. We also know that the standard of care is based on evidence measuring length and frequency of survival in populations. Beyond encapsulating the expectation that a treatment will not provide a 'cure,' the term 'palliative,' then, doesn't really make any sense. Any life-extending treatment is equivalent to a cure until the disease that the treatment targeted kills or otherwise hurts the patient: if the treatment is life-extending, presumably the patient would have died without it--in which case, until they do, you have 'cured' them. All 'cured' patients will go on to die of something--indeed something else, by definition of the word 'cured,' which is exactly what I've just said.
Next, and more substantively, I did not gloss over the details of the studies that I cited. The conclusion of the study from Lung Cancer is that a few factors significantly affect the likelihood that an early N-status stage IV lung cancer patient be a long-term survivor: a single metastatic site, a good performance status, and initial treatment including surgery. If our discussion is evidence-based, that evidence does not allow you to say, "we're dealing with a case of multiple metastases, therefore the conclusions of this study do not apply." The study explicitly addresses your concern: there were patients with multiple metastases included, and among a population including them, treatment including initial surgery significantly increased the likelihood of being a long-term survivor.
As to the other studies, what they constitute is evidence that in early-stage populations, RF ablation and SBR have great benefits, with relatively little risk. While you may scoff at the notion of thoracic surgery, I scoff at the notion of doing what's in an NCCN powerpoint with the good knowledge that the cancer will kill my mother anyway. You say that you feel there is little to no evidence to support the use of ablation and/or SBR with 'curative intent' in patients with stage IV NSCLC. I don't disagree. I disagree with you, I believe, as to why that is, and as to what it means I should advocate for.
If ablation and SBR do not carry high risks, given that the alternative is almost certain death in a matter of months, and they show sign of promise in treating tumors in early stage patients, why not use them in late stage patients? I believe most doctors would say, "Well, with many metastases, we surely can't get them all with such therapies." That is not an evidence-based statement. It's like saying, "With chemotherapy, we surely won't completely eliminate all the tumors permanently, so we might as well not do it." The real limiting factor in the standard of care in this case is not, I believe, some piece of evidence showing that these therapies are ineffective or harmful in late stage patients, but rather a sort of resigned feeling (and reality) that exceptional measures cannot be carried out on every patient's behalf. If it were your wife, or your mother, or your daughter, would you be content with the NCCN powerpoint that shows they will gain one month of life from 18 weeks of chemotherapy, or would you advocate for exceptional measures? You can say, "I wouldn't advocate for a treatment that is non-evidence-based," and I can retort that the treatment best supported by the evidence simply doesn't work, and there *is* indeed evidence to support attempts at alternatives--so why not try them? What, exactly, is the risk, other than the loss of your supposed allegiance to evidence-based therapies?
We are going to seek more opinions, but want to get started with treatment soon. My mother wants to do whatever will give her the most time here with the best quality of life--she is willing to be aggressive. We are in the Maryland area with access to UMD, Hopkins, NIH, Georgetown, etc.
Thanks again. I may post more follow-ups later.
posted by cortex (staff) at 10:29 PM on March 23, 2009
First of all, I would just like to say that I love metafilter, and I appreciate so much the people on it, askme in particular. There are so many no-bullshit, reasonable, emotionally intelligent, effectively-communicating people on here--I wish there were such a high density in the real world, too ;).
I'd like to respond to drpynchon, whose answer I appreciate greatly. Thank you, first of all.
I certainly know that the decisions are my mother's to make here, to address something that you and many other posters raise. I also know that I am a layperson discussing issues with people who have many more years education and experience than I do.
I think we agree that our discussions, and the treatment, should be evidence-based, as you mention. We also agree that the current standard of care, which is based on the most certain evidence, is quite poor. So poor, in fact, to have been labeled 'palliative,' or without 'curative intent.' In other words, with respect to the treatment of stage IV lung cancer with the intent to eliminate it, the evidence allows us to conclude only that the standard of care advocated by, say, NCCN, is barely better than doing nothing. We can argue about the definition of 'barely better,' so let me be clear, as it may also help your concerns over my 'guilt,' etc.: most people diagnosed with stage IV lung cancer will die soon after of complications related to the cancer. Some significant but non-entire fraction of the population will have their lives extended meagerly (beyond what you would expect without the standard of care) by the treatment (a matter of a couple months, perhaps less); some tiny, tiny fraction will have their lives extended more significantly (a year or two, maybe). Some small but measurable fraction probably live less time than they would have without the standard of care.
As an aside, I would challenge the use of terms like 'palliative' and 'curative' with respect to the chemotherapy at all. We both know that chemotherapy can be used to 'cure' cancers. We also know that the standard of care is based on evidence measuring length and frequency of survival in populations. Beyond encapsulating the expectation that a treatment will not provide a 'cure,' the term 'palliative,' then, doesn't really make any sense. Any life-extending treatment is equivalent to a cure until the disease that the treatment targeted kills or otherwise hurts the patient: if the treatment is life-extending, presumably the patient would have died without it--in which case, until they do, you have 'cured' them. All 'cured' patients will go on to die of something--indeed something else, by definition of the word 'cured,' which is exactly what I've just said.
Next, and more substantively, I did not gloss over the details of the studies that I cited. The conclusion of the study from Lung Cancer is that a few factors significantly affect the likelihood that an early N-status stage IV lung cancer patient be a long-term survivor: a single metastatic site, a good performance status, and initial treatment including surgery. If our discussion is evidence-based, that evidence does not allow you to say, "we're dealing with a case of multiple metastases, therefore the conclusions of this study do not apply." The study explicitly addresses your concern: there were patients with multiple metastases included, and among a population including them, treatment including initial surgery significantly increased the likelihood of being a long-term survivor.
As to the other studies, what they constitute is evidence that in early-stage populations, RF ablation and SBR have great benefits, with relatively little risk. While you may scoff at the notion of thoracic surgery, I scoff at the notion of doing what's in an NCCN powerpoint with the good knowledge that the cancer will kill my mother anyway. You say that you feel there is little to no evidence to support the use of ablation and/or SBR with 'curative intent' in patients with stage IV NSCLC. I don't disagree. I disagree with you, I believe, as to why that is, and as to what it means I should advocate for.
If ablation and SBR do not carry high risks, given that the alternative is almost certain death in a matter of months, and they show sign of promise in treating tumors in early stage patients, why not use them in late stage patients? I believe most doctors would say, "Well, with many metastases, we surely can't get them all with such therapies." That is not an evidence-based statement. It's like saying, "With chemotherapy, we surely won't completely eliminate all the tumors permanently, so we might as well not do it." The real limiting factor in the standard of care in this case is not, I believe, some piece of evidence showing that these therapies are ineffective or harmful in late stage patients, but rather a sort of resigned feeling (and reality) that exceptional measures cannot be carried out on every patient's behalf. If it were your wife, or your mother, or your daughter, would you be content with the NCCN powerpoint that shows they will gain one month of life from 18 weeks of chemotherapy, or would you advocate for exceptional measures? You can say, "I wouldn't advocate for a treatment that is non-evidence-based," and I can retort that the treatment best supported by the evidence simply doesn't work, and there *is* indeed evidence to support attempts at alternatives--so why not try them? What, exactly, is the risk, other than the loss of your supposed allegiance to evidence-based therapies?
We are going to seek more opinions, but want to get started with treatment soon. My mother wants to do whatever will give her the most time here with the best quality of life--she is willing to be aggressive. We are in the Maryland area with access to UMD, Hopkins, NIH, Georgetown, etc.
Thanks again. I may post more follow-ups later.
posted by cortex (staff) at 10:29 PM on March 23, 2009
Cortex, you have my deepest sympathy.
My mother was diagnosed with stage IV malignant melanoma, and she was very unhappy with her initial oncologist. A suggestion I received from my doctor was to consider a diagnosis and possible treatment at the Dana Farber Cancer Institute in Boston.
That suggestion was the best thing to happen in an otherwise terrible situation. Look for the best research institutions in Maryland and consider Dana Farber and the related Boston hospitals if you can. It made all the difference in the world to my mom. It might help your mom.
posted by Napoleonic Terrier at 12:39 AM on March 24, 2009
My mother was diagnosed with stage IV malignant melanoma, and she was very unhappy with her initial oncologist. A suggestion I received from my doctor was to consider a diagnosis and possible treatment at the Dana Farber Cancer Institute in Boston.
That suggestion was the best thing to happen in an otherwise terrible situation. Look for the best research institutions in Maryland and consider Dana Farber and the related Boston hospitals if you can. It made all the difference in the world to my mom. It might help your mom.
posted by Napoleonic Terrier at 12:39 AM on March 24, 2009
Wonderful response OP. To address your issues further:
1) As an aside, I would challenge the use of terms like 'palliative' and 'curative' with respect to the chemotherapy at all. We both know that chemotherapy can be used to 'cure' cancers. We also know that the standard of care is based on evidence measuring length and frequency of survival in populations. Beyond encapsulating the expectation that a treatment will not provide a 'cure,' the term 'palliative,' then, doesn't really make any sense. Any life-extending treatment is equivalent to a cure until the disease that the treatment targeted kills or otherwise hurts the patient: if the treatment is life-extending, presumably the patient would have died without it--in which case, until they do, you have 'cured' them. All 'cured' patients will go on to die of something--indeed something else, by definition of the word 'cured,' which is exactly what I've just said.
You will rarely see the word "cure" used in the medical literature relating to metastatic cancer, because the best that is achieved in many cases is modest improvement in median survival / hazard ratio. Improving median survival by several months is not a cure at least by my definition and that of most laypeople. It is improving median survival by several months. The term 'palliative' suggests that quality of life may also be improved even in the face a very modest or no benefit in survival at all. While the literature varies, there's actually a surprising amount of data to suggest that despite the pains of chemotherapy, it may actually improve overall quality of life measures in otherwise terminal patients.
2) The conclusion of the study from Lung Cancer is that a few factors significantly affect the likelihood that an early N-status stage IV lung cancer patient be a long-term survivor: a single metastatic site, a good performance status, and initial treatment including surgery. If our discussion is evidence-based, that evidence does not allow you to say, "we're dealing with a case of multiple metastases, therefore the conclusions of this study do not apply." The study explicitly addresses your concern: there were patients with multiple metastases included, and among a population including them, treatment including initial surgery significantly increased the likelihood of being a long-term survivor.
With due respect, you're missing the point of what I, as an academic physician trained in biostatistics, am saying. The population included patients both with and without multiple metastases. NONE of the patients with multiple metastases survived for more than about 3 years, and only 2 survived for more than two years (out of 87 total if I recall). Of those 2, neither received the therapies you are talking about (surgery, radiotherapy, etc.). To infer from the results of a study in which no patients in a particular subgroup survived, that a certain intervention may be helpful in that same group is highly flawed. What their results actually demonstrate is that probably none of the patients with multiple sites of metastases actually underwent surgery at all -- the likely reason being that at the time, the physicians taking care of those patients likely didn't feel it an appropriate intervention. These patients didn't do as well, of course. Not because they didn't have surgery but because the patients that had surgery had more limited disease, and as such, had a better prognosis to begin with, and had disease that was amenable to surgery in the first place.
Think of it like this: Let's say you do a retrospective review of a 1000 patients with NSCLC stage 4. Let's say 500 have multi-site disease while the other 500 have single metastasis. Now you read their charts and find that 250 had surgery on top of chemo. You find that in comparison to those that didn't get surgery, those that did had marginally improved survival. Your fancy multiple logistic regression tells you that surgery reduced the odds ratio for mortality with statistical significance. You conclude that surgery improves outcomes in NSCLC. Now what if I tell you that all 250 that underwent surgery had single-site metastasis. Does simply having those 500 patients with multi-site disease included in your cohort and model mean that your conclusion applies to them? The short answer is no. I'm happy to expound on the statistical fallacy of this in more technical terms if you like. Briefly, there are serious issues of multicollinearity, residual confounding, and interaction terms not accounted for in the model.
A retrospective observational design is generally inappropriate for assessing the value of a particular therapy or intervention, and cannot establish causality in such a circumstance. This is not the way to test therapeutic modalities statistically, and it's one reason why randomized controlled-trials exist. It may seem surprising but crummy science gets published all the time.
3) While you may scoff at the notion of thoracic surgery, I scoff at the notion of doing what's in an NCCN powerpoint with the good knowledge that the cancer will kill my mother anyway. You say that you feel there is little to no evidence to support the use of ablation and/or SBR with 'curative intent' in patients with stage IV NSCLC. I don't disagree. I disagree with you, I believe, as to why that is, and as to what it means I should advocate for.
I scoff at neither surgery nor chemotherapy. They are both serious business. And I did not intend to imply that chemotherapy is "the right answer" in this case. If I did I apologize. I’m in no position to give any specific advice, and am only trying to provide what is hopefully helpful information.
4) If ablation and SBR do not carry high risks, given that the alternative is almost certain death in a matter of months, and they show sign of promise in treating tumors in early stage patients, why not use them in late stage patients? I believe most doctors would say, "Well, with many metastases, we surely can't get them all with such therapies." That is not an evidence-based statement.
This is where you are wrong in a paradigmatic way. Firstly, evidence based medicine relies on treatments with demonstrable benefit, not on treatments that have failed to be proven ineffective or treatments that may be reasonably safe but without proven benefit (phase I). The only treatment with demonstrable though admittedly quite marginal benefit in such scenarios based on reasonably large controlled trials is chemotherapy at this point. Chemotherapy is designed to kill actively dividing cells all over the body (and in some cancers, truly can be curative in the popular sense), while the local therapies (RFA/SBRT/surgery) only target large clumps of these aberrant cells without addressing all the other microscopic foci that exist with increasing likelihood based on the extent of the disease. They do not address the burden of micrometastasis in widespread disease, and it is as yet unclear if these factors actually improve mortality or morbidity in patients with more advanced cancer in addition to or apart from chemotherapy alone.
At this time, SBRT does remain a promising modality that may ultimately yield comparable or perhaps better mortality benefit than or in combination with chemo for a number of cancers, but it remains experimental. In other words, the evidence is not strong enough (perhaps yet) to support routinely recommending its use. Quite honestly, I don’t know the specifics of what’s out there on this particular subject well enough to speak about it in anything other than those generalities. There are a handful of articles that have come out in the last few months on SBRT that I have yet to read. For further info, I would recommend contacting the best academic radiation oncologist you can get your hands for a balanced interpretation of the data out there. A lot of the buzz on this subject has been generated by studies by Robert Timmerman’s group and you might even try contacting his office for additional information and possible enrollment in active clinical trials if they are available. I can’t quite tell if he’s at Indiana or he’s moved to UT Southwestern.
But here’s my final point… when it comes to a condition this serious, I actually agree with you, and if I’m coming off as adversarial I don’t mean to be. If after considering the potential risks and benefits of a therapy they know to be experimental (or even non-“evidence-based”), a patient with an otherwise terminal disease wants to take that chance, then I am the last person to begrudge them that wish. My goal is not to dissuade you in that plan per se but to make sure you appreciate the fact that you might be over/misinterpreting the strength of what evidence is out there, that these therapies may well have associated harm (even in the face a terminal diagnosis), and to make sure your mother’s goals of care are truly what are driving your decisions. I urge you not to conflate experimental therapy with “optimal” care, or for that matter what may be the standard-of-care with “suboptimal” care. As they say, the path to hell is paved with good intentions.
All of that said, I truly commend you for taking this monster head on. I have seen enough people having to face this kind of diagnosis alone to know how much good an advocate like you can do (regardless of what you and she ultimately decide on). Being forced to make these complex decisions is unfair, painful, and just plain shitty and my heart goes out to you and your mother. If there are any other general issues or concerns that you think I can help with, it’s probably best just to MeMail me directly instead of communicating in forum.
posted by drpynchon at 2:00 AM on March 24, 2009 [3 favorites]
1) As an aside, I would challenge the use of terms like 'palliative' and 'curative' with respect to the chemotherapy at all. We both know that chemotherapy can be used to 'cure' cancers. We also know that the standard of care is based on evidence measuring length and frequency of survival in populations. Beyond encapsulating the expectation that a treatment will not provide a 'cure,' the term 'palliative,' then, doesn't really make any sense. Any life-extending treatment is equivalent to a cure until the disease that the treatment targeted kills or otherwise hurts the patient: if the treatment is life-extending, presumably the patient would have died without it--in which case, until they do, you have 'cured' them. All 'cured' patients will go on to die of something--indeed something else, by definition of the word 'cured,' which is exactly what I've just said.
You will rarely see the word "cure" used in the medical literature relating to metastatic cancer, because the best that is achieved in many cases is modest improvement in median survival / hazard ratio. Improving median survival by several months is not a cure at least by my definition and that of most laypeople. It is improving median survival by several months. The term 'palliative' suggests that quality of life may also be improved even in the face a very modest or no benefit in survival at all. While the literature varies, there's actually a surprising amount of data to suggest that despite the pains of chemotherapy, it may actually improve overall quality of life measures in otherwise terminal patients.
2) The conclusion of the study from Lung Cancer is that a few factors significantly affect the likelihood that an early N-status stage IV lung cancer patient be a long-term survivor: a single metastatic site, a good performance status, and initial treatment including surgery. If our discussion is evidence-based, that evidence does not allow you to say, "we're dealing with a case of multiple metastases, therefore the conclusions of this study do not apply." The study explicitly addresses your concern: there were patients with multiple metastases included, and among a population including them, treatment including initial surgery significantly increased the likelihood of being a long-term survivor.
With due respect, you're missing the point of what I, as an academic physician trained in biostatistics, am saying. The population included patients both with and without multiple metastases. NONE of the patients with multiple metastases survived for more than about 3 years, and only 2 survived for more than two years (out of 87 total if I recall). Of those 2, neither received the therapies you are talking about (surgery, radiotherapy, etc.). To infer from the results of a study in which no patients in a particular subgroup survived, that a certain intervention may be helpful in that same group is highly flawed. What their results actually demonstrate is that probably none of the patients with multiple sites of metastases actually underwent surgery at all -- the likely reason being that at the time, the physicians taking care of those patients likely didn't feel it an appropriate intervention. These patients didn't do as well, of course. Not because they didn't have surgery but because the patients that had surgery had more limited disease, and as such, had a better prognosis to begin with, and had disease that was amenable to surgery in the first place.
Think of it like this: Let's say you do a retrospective review of a 1000 patients with NSCLC stage 4. Let's say 500 have multi-site disease while the other 500 have single metastasis. Now you read their charts and find that 250 had surgery on top of chemo. You find that in comparison to those that didn't get surgery, those that did had marginally improved survival. Your fancy multiple logistic regression tells you that surgery reduced the odds ratio for mortality with statistical significance. You conclude that surgery improves outcomes in NSCLC. Now what if I tell you that all 250 that underwent surgery had single-site metastasis. Does simply having those 500 patients with multi-site disease included in your cohort and model mean that your conclusion applies to them? The short answer is no. I'm happy to expound on the statistical fallacy of this in more technical terms if you like. Briefly, there are serious issues of multicollinearity, residual confounding, and interaction terms not accounted for in the model.
A retrospective observational design is generally inappropriate for assessing the value of a particular therapy or intervention, and cannot establish causality in such a circumstance. This is not the way to test therapeutic modalities statistically, and it's one reason why randomized controlled-trials exist. It may seem surprising but crummy science gets published all the time.
3) While you may scoff at the notion of thoracic surgery, I scoff at the notion of doing what's in an NCCN powerpoint with the good knowledge that the cancer will kill my mother anyway. You say that you feel there is little to no evidence to support the use of ablation and/or SBR with 'curative intent' in patients with stage IV NSCLC. I don't disagree. I disagree with you, I believe, as to why that is, and as to what it means I should advocate for.
I scoff at neither surgery nor chemotherapy. They are both serious business. And I did not intend to imply that chemotherapy is "the right answer" in this case. If I did I apologize. I’m in no position to give any specific advice, and am only trying to provide what is hopefully helpful information.
4) If ablation and SBR do not carry high risks, given that the alternative is almost certain death in a matter of months, and they show sign of promise in treating tumors in early stage patients, why not use them in late stage patients? I believe most doctors would say, "Well, with many metastases, we surely can't get them all with such therapies." That is not an evidence-based statement.
This is where you are wrong in a paradigmatic way. Firstly, evidence based medicine relies on treatments with demonstrable benefit, not on treatments that have failed to be proven ineffective or treatments that may be reasonably safe but without proven benefit (phase I). The only treatment with demonstrable though admittedly quite marginal benefit in such scenarios based on reasonably large controlled trials is chemotherapy at this point. Chemotherapy is designed to kill actively dividing cells all over the body (and in some cancers, truly can be curative in the popular sense), while the local therapies (RFA/SBRT/surgery) only target large clumps of these aberrant cells without addressing all the other microscopic foci that exist with increasing likelihood based on the extent of the disease. They do not address the burden of micrometastasis in widespread disease, and it is as yet unclear if these factors actually improve mortality or morbidity in patients with more advanced cancer in addition to or apart from chemotherapy alone.
At this time, SBRT does remain a promising modality that may ultimately yield comparable or perhaps better mortality benefit than or in combination with chemo for a number of cancers, but it remains experimental. In other words, the evidence is not strong enough (perhaps yet) to support routinely recommending its use. Quite honestly, I don’t know the specifics of what’s out there on this particular subject well enough to speak about it in anything other than those generalities. There are a handful of articles that have come out in the last few months on SBRT that I have yet to read. For further info, I would recommend contacting the best academic radiation oncologist you can get your hands for a balanced interpretation of the data out there. A lot of the buzz on this subject has been generated by studies by Robert Timmerman’s group and you might even try contacting his office for additional information and possible enrollment in active clinical trials if they are available. I can’t quite tell if he’s at Indiana or he’s moved to UT Southwestern.
But here’s my final point… when it comes to a condition this serious, I actually agree with you, and if I’m coming off as adversarial I don’t mean to be. If after considering the potential risks and benefits of a therapy they know to be experimental (or even non-“evidence-based”), a patient with an otherwise terminal disease wants to take that chance, then I am the last person to begrudge them that wish. My goal is not to dissuade you in that plan per se but to make sure you appreciate the fact that you might be over/misinterpreting the strength of what evidence is out there, that these therapies may well have associated harm (even in the face a terminal diagnosis), and to make sure your mother’s goals of care are truly what are driving your decisions. I urge you not to conflate experimental therapy with “optimal” care, or for that matter what may be the standard-of-care with “suboptimal” care. As they say, the path to hell is paved with good intentions.
All of that said, I truly commend you for taking this monster head on. I have seen enough people having to face this kind of diagnosis alone to know how much good an advocate like you can do (regardless of what you and she ultimately decide on). Being forced to make these complex decisions is unfair, painful, and just plain shitty and my heart goes out to you and your mother. If there are any other general issues or concerns that you think I can help with, it’s probably best just to MeMail me directly instead of communicating in forum.
posted by drpynchon at 2:00 AM on March 24, 2009 [3 favorites]
Anon, I have a parent with stage IV metastatic cancer as well. Also like you, I have no medical training, and yet have done extensive research into treatment modalities. I have found throughout the process that the best way to broach the questions is simply as questions: "I saw a study that seemed to imply that interval survival for those with brain metastases was increased by x months by y treatment-- what do you think?"
And the doctor will generally reply with a detailed summary of why or why not that is the best front-line approach, and why he or she suggests something else.
IF the doctor responds and dismisses your question out of hand (and some do) then you should talk to your mom about getting a new doctor. Some patients prefer dictatorial docs, some don't and work better in a more collaborative environment. You and your mom should probably have a conversation about that.
However if I may, I would suggest rethinking your characterization of the current treatment as a "poor standard of care." I'm not sure if that is either accurate or helpful. It may be right-- but looking at what you have presented here it's hard to say. More importantly, it doesn't matter. Stage IV treatment is generally a matter of balancing quality of life with life extension. Many oncologists have an expectation or understanding of where patients prefer to fall on that continuum. But you must make that conversation explicit in order to figure out where your mom wants to be, and how to ensure that the treatment fits into that expectation.
Additionally, I second the suggestion of visiting a cancer center. There, you may find a doctor who is doing research in the specific areas your mom needs help with. In many cases, that doctor can work with a local doctor to help manage the treatment.
I know how much this sucks, and how upset you must be. Please send me mail if you would like to talk more. My parent has been Stage IV for almost 4 years now, much longer than I ever thought was possible, and I have been through the ups and downs of doctors, treatment, emotional stress, caretaking, etc. I wish you and your mom the best through this very difficult process.
posted by miss tea at 4:38 AM on March 24, 2009
And the doctor will generally reply with a detailed summary of why or why not that is the best front-line approach, and why he or she suggests something else.
IF the doctor responds and dismisses your question out of hand (and some do) then you should talk to your mom about getting a new doctor. Some patients prefer dictatorial docs, some don't and work better in a more collaborative environment. You and your mom should probably have a conversation about that.
However if I may, I would suggest rethinking your characterization of the current treatment as a "poor standard of care." I'm not sure if that is either accurate or helpful. It may be right-- but looking at what you have presented here it's hard to say. More importantly, it doesn't matter. Stage IV treatment is generally a matter of balancing quality of life with life extension. Many oncologists have an expectation or understanding of where patients prefer to fall on that continuum. But you must make that conversation explicit in order to figure out where your mom wants to be, and how to ensure that the treatment fits into that expectation.
Additionally, I second the suggestion of visiting a cancer center. There, you may find a doctor who is doing research in the specific areas your mom needs help with. In many cases, that doctor can work with a local doctor to help manage the treatment.
I know how much this sucks, and how upset you must be. Please send me mail if you would like to talk more. My parent has been Stage IV for almost 4 years now, much longer than I ever thought was possible, and I have been through the ups and downs of doctors, treatment, emotional stress, caretaking, etc. I wish you and your mom the best through this very difficult process.
posted by miss tea at 4:38 AM on March 24, 2009
Napoleonic Terrier: Note that cortex is just reposting Anon's response. cortex is not Anon.
posted by misterbrandt at 11:21 AM on March 24, 2009
posted by misterbrandt at 11:21 AM on March 24, 2009
This thread is closed to new comments.
Due diligence, though: give them a chance, at least, before you start looking for new doctors, which will almost certainly be a bit more complicated than using the ones you have. Bring up your concerns, not as "WHY HAVE YOU NOT CONSIDERED THIS YOU QUACKS" but as "I've done some research, and here are some other pathways that I've read about that seem to have had success: can you tell me why we don't seem to be considering them?".
Their reaction to your concerns will tell you a lot about whether they're worth keeping or not: if they blow you off, then you're well shut of them. If they don't, though, and thoughtfully engage with your concerns, maybe you can work together to make sure your mother gets the right treatment.
posted by scrump at 4:29 PM on March 23, 2009 [3 favorites]