Cancer treatment centers versus traditional outpatient care?
June 7, 2009 2:21 PM Subscribe
Does anyone have experience with Cancer Treatment Centers of America (their TV commercials are on all over) versus traditional outpatient care with a team of doctors? Plus, additional questions regarding being a caretaker from a distance. Specific details inside.
My mother (64 years old, 1+ pack per day smoker) was diagnosed with non-small cell lung cancer (stage IIIa) in December, 2008. One tumor plus two lymph nodes all confined to one side of her chest. A treatment plan of radiation/chemo was prescribed with a possibility of surgery to follow.
Mid-way through treatment, she was told she wasn't a surgical candidate (not completely sure why since I wasn't at that appointment) and was told she would be given a "revised" plan where they would follow up her initial treatment with a "stronger" combo of radiation/chemo for three additional weeks.
She finished all of that, and was scheduled for a CT scan after six weeks to check on everything. No MRIs, CTs or other scans took place during any of her treatment. She got the CT scan about 10 days ago and it showed that the tumor had reduced 50% and one of the two lymph nodes appeared to be "ok" now (for lack of a better way to describe).
The PET scan was just this past Friday where it was discovered that she is cancer free in the areas treated (original tumor and lymph nodes) but that the cancer has metastized to her femur (in the bone) and near her collar bone and esophagus areas, new cancerous lymph nodes have been found. Obviously, this is devastating. Getting past my questions about why it's spread when chemo supposedly goes throughout the body, we need a plan B.
I'm looking into cancer centers for a more "whole body" approach versus what my mom did last time, which was work during 80% of the treatment. Also, since I'm a caregiver from a distance (read: 3 hour plane ride) I'm trying to find the best way to help with other issues like a work leave without pay, applying for disability, medicare, etc. My mom lives alone, has used up all of her FMLA time and all of her sick time and has no money.
So my questions are:
#1 - Does anyone have any experiences with CTCA or other cancer centers?
#2 - What would be the best bet for trying to help with the insurance, disability, leaves, etc. I have POA over her, but quite frankly, don't even know where to start.
I know this is a dump of a lot of information, but I wanted to include some of the back story to help paint the picture of what we've experienced.
Any and all information, suggestions, advice is welcome. Please note that I realize that none of you are my doctors or her doctors and you're not giving medical and/or legal advice. Thanks in advance for all experiences shared.
My mother (64 years old, 1+ pack per day smoker) was diagnosed with non-small cell lung cancer (stage IIIa) in December, 2008. One tumor plus two lymph nodes all confined to one side of her chest. A treatment plan of radiation/chemo was prescribed with a possibility of surgery to follow.
Mid-way through treatment, she was told she wasn't a surgical candidate (not completely sure why since I wasn't at that appointment) and was told she would be given a "revised" plan where they would follow up her initial treatment with a "stronger" combo of radiation/chemo for three additional weeks.
She finished all of that, and was scheduled for a CT scan after six weeks to check on everything. No MRIs, CTs or other scans took place during any of her treatment. She got the CT scan about 10 days ago and it showed that the tumor had reduced 50% and one of the two lymph nodes appeared to be "ok" now (for lack of a better way to describe).
The PET scan was just this past Friday where it was discovered that she is cancer free in the areas treated (original tumor and lymph nodes) but that the cancer has metastized to her femur (in the bone) and near her collar bone and esophagus areas, new cancerous lymph nodes have been found. Obviously, this is devastating. Getting past my questions about why it's spread when chemo supposedly goes throughout the body, we need a plan B.
I'm looking into cancer centers for a more "whole body" approach versus what my mom did last time, which was work during 80% of the treatment. Also, since I'm a caregiver from a distance (read: 3 hour plane ride) I'm trying to find the best way to help with other issues like a work leave without pay, applying for disability, medicare, etc. My mom lives alone, has used up all of her FMLA time and all of her sick time and has no money.
So my questions are:
#1 - Does anyone have any experiences with CTCA or other cancer centers?
#2 - What would be the best bet for trying to help with the insurance, disability, leaves, etc. I have POA over her, but quite frankly, don't even know where to start.
I know this is a dump of a lot of information, but I wanted to include some of the back story to help paint the picture of what we've experienced.
Any and all information, suggestions, advice is welcome. Please note that I realize that none of you are my doctors or her doctors and you're not giving medical and/or legal advice. Thanks in advance for all experiences shared.
Also, you may want to look into Social Security/Disability. I am only twenty-four, but because of my type of cancer, I was unable to work, so I was given access to it right away. It feels kind of morbid on the outset, but was an invaluable resource.
posted by litterateur at 2:51 PM on June 7, 2009
posted by litterateur at 2:51 PM on June 7, 2009
Best answer: By cancer centers, do you include MD Anderson, Sloan-Kettering, or the Mayo Clinic?
If yes, I can say that MD Anderson kept my mother alive for 16 years, with a very aggressive type of breast cancer. If I had cancer, that's where I would go, or to one of the other 2 I mentioned above, because they research cancer (and so, patients can double-up their regular chemo with experimental chemo). In fact, that's one of the miracles that happened with my mom -- the third time she came out of remission, she took taxol (now called tamoxifen). It was an experimental drug at that time, that she would not have gotten if she'd not been at a research hospital.
If you don't include those hospitals, please disregard. I'm not sure what the "whole body" approach is, exactly.
I'm sure you've seen this, about CTCA settling with the FTC over charges. But that was in 1996.
posted by Houstonian at 2:53 PM on June 7, 2009
If yes, I can say that MD Anderson kept my mother alive for 16 years, with a very aggressive type of breast cancer. If I had cancer, that's where I would go, or to one of the other 2 I mentioned above, because they research cancer (and so, patients can double-up their regular chemo with experimental chemo). In fact, that's one of the miracles that happened with my mom -- the third time she came out of remission, she took taxol (now called tamoxifen). It was an experimental drug at that time, that she would not have gotten if she'd not been at a research hospital.
If you don't include those hospitals, please disregard. I'm not sure what the "whole body" approach is, exactly.
I'm sure you've seen this, about CTCA settling with the FTC over charges. But that was in 1996.
posted by Houstonian at 2:53 PM on June 7, 2009
Actually, please look at this. The CTCA does not look promising.
posted by Houstonian at 2:55 PM on June 7, 2009
posted by Houstonian at 2:55 PM on June 7, 2009
Best answer: Go ahead and get her Social Security Disability application in. Get as many of her medical records as you can to support it.
You may be eligible for FMLA through your employer, as well - probably no pay but you get the time off you need to help out with this. Good luck.
posted by dilettante at 3:00 PM on June 7, 2009
You may be eligible for FMLA through your employer, as well - probably no pay but you get the time off you need to help out with this. Good luck.
posted by dilettante at 3:00 PM on June 7, 2009
This page on the American Cancer Society website gives legal and financial information.
posted by Houstonian at 3:10 PM on June 7, 2009
posted by Houstonian at 3:10 PM on June 7, 2009
Best answer: CTCA appears to be a scam specializing in pseudoscience--what you want is a major research hospital that specializes in cancer care.
Here is the National Cancer Institute's list of 40 comprehensive cancer centers across the country. It looks like the NCI centers are located pretty much all over the country, so hopefully one is near your mom.
posted by hydropsyche at 3:52 AM on June 8, 2009
Here is the National Cancer Institute's list of 40 comprehensive cancer centers across the country. It looks like the NCI centers are located pretty much all over the country, so hopefully one is near your mom.
posted by hydropsyche at 3:52 AM on June 8, 2009
Response by poster: Thank you to everyone who took the time to reply! The links are especially helpful to get me started, so I appreciate that.
posted by cyniczny at 6:21 AM on June 8, 2009
posted by cyniczny at 6:21 AM on June 8, 2009
For your #2 question, the American Cancer Society has a very comprehensive page of resources for caregivers, with many of the "practical" concerns covered here:
http://www.cancer.org/docroot/home/cgv/CGV_2_how_to_provide_care.asp
posted by vytae at 6:32 AM on June 8, 2009
http://www.cancer.org/docroot/home/cgv/CGV_2_how_to_provide_care.asp
posted by vytae at 6:32 AM on June 8, 2009
I am really sorry to hear about your mom's diagnosis.
As others have suggested, you may want to check out a research institution (like a hospital or university) to see if there are any studies for which she is eligible. Places like this often have social workers or financial advisors that can help you figure out how to navigate the really complicated issues of how to get care/pay for it.
(disclosure: I work for an NCI-designated comprehensive cancer center.)
posted by oh really at 9:56 AM on June 8, 2009
As others have suggested, you may want to check out a research institution (like a hospital or university) to see if there are any studies for which she is eligible. Places like this often have social workers or financial advisors that can help you figure out how to navigate the really complicated issues of how to get care/pay for it.
(disclosure: I work for an NCI-designated comprehensive cancer center.)
posted by oh really at 9:56 AM on June 8, 2009
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I suppose the key thing is to always get second (and third, and fourth) opinions if you are in any way concerned.
Also, are you her primary caregiver? I had an amazing support system of family and friends, but even so, I sometimes found it very necessary to find people to commiserate with, as did my parents (who were my caregivers).
Additionally, I found that a lot of people constantly wanted updates on my condition. Logistically, this was impossible to e-mail absolutely everyone who wanted to know, so I set up a Caring Bridge site and gave my folks access to it as well. That way, I could journal about what was going on, and they could fill in on the days I didn't feel up to it.
Good luck to you and your mom. You are in my thoughts and prayers.
posted by litterateur at 2:48 PM on June 7, 2009