Survivors who have used only alternative treatments
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Doctors and other health professionals have a duty under their profession not to give general advice. But the untrained public are free to exchange ideas and some may be bolder and sound more authoritative than others. There is no law against it unless someone is pretending to be a doctor and giving out drugs etc. When I go to the local health food shop they happily tell me which supplements are good for a particular purpose. Also I notice Nanay often says in her posts, "don't believe anything you read on the internet or forums".
I guess we'll all have to have a disclaimer in our signature just to be sure.
I am not a health professional so take everything I say as opinion and not fact. Consult your health professional for medical advice.
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WOM,
its fine, gotten used to it. being thick skinned probably helps.
Sheila,
thanks for the advice. I will start including a disclaimer on my signature
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Nanay, I wasn't being serious, just trying to emphasize how ludicrous things were getting. But I remember on another alt health forum I read years ago, many had a disclaimer in their signature.
I see plenty of advice on the other sections of this forum about everything under the sun. A lot of advice and "facts" are rubbish but when someone knowledgeable tries to dispute them they are shouted down. The media also frequently make everything out to be sensational while ignoring boring reality. So it's up to all to be wary of everything and not believe things just because others do. Just my opinion.
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I think the disclaimer makes sense, and I would encourage all well meaning posters to do the same (regardless if conv/alt).
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back to WOM's question.
here is a research paper/clinical study about Liver Function Test (LFT) without clinically apparent liver disease, which seems to be applicable for your case.
good reading while in transition--
excerpt:
The results of this study will be widely disseminated to primary care, as well as G.I hospital specialists through publications and presentations at local and national meetings and the project website. This will facilitate optimal decision-making both for the benefit of the patient and the National Health Service.
This was published in 2007-- so I believe our conventional doctors should have this data at hand already..please take note Liver Function Test (PT/INR,aPTT,albumin, billirubin) is not the same as Liver biomarkers such as AST/ALT,SGOT/SGPT). Liver Function tests, measures proteins and enzymes, refer here
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Background: Liver Function tests (LFTs are routinely performed in primary care and are often the gateway to further inavsive and/or expensive investigations
Further invasive and/or expensive investigations include
- liver biopsy
- endoscopic retrogade cholangiopancreatography
Conclusions: All LFTs were predictive markers for liver disease as well as general ill health although sensitivity was poor. Most patients with abnormal LFTs had no later formal diagnosis of liver disease within the study period. The time take to develope liver disease in these aptients provides opportunity to intervene
WOM,
if there are no clear symptoms of liver disease from your CT/PET scan-- please do not be complacent.. if LFTs will show some abnormalities-- all is not lost.. you can still intervene and reverse the abnormalities..
this is my understanding-- what do you think? please print and read this study and present to your doctor.. explain to him that you respect his knowledge about liver diseases, but it may do him good to read these studies as well to help you and him make an informed decision for "interventions" - wether conventional or alternative..
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Shelia...what I like about you ... you bring balance. You are a very wise woman!
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Thanks Eve. Maybe not so calm though. I've been sitting on my hands through many uncalled for insults and distortions of what others have said.
Next time anyone suggests Nanay or any other support person stop posting I'll challenge them to go over to one of Timothy's very informative posts and tell him he can't give advice and he doesn't belong here because he doesn't have BC. It would put things in context. LOL
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sheila,
thanks for being my "Gabriela". In the Philippines, we have this very well known female hero, her name is "Gabriella".
WOM,
the liver research continues..sorry for the flurry of posts, I will be on leave from 25 May to 6 June and has been scheduling all my mother's diagnostic tests and some treatments during that period..
I have found this site Asia Health Parners they offer --- Fibroscan (brand name for elastography) -- I am scheduling an appointment for my mother's Fibroscan, Liver Function tests and ultrasound of the liver.. it seems they have a specialist for liver diseases..
I hope you can find something like this in your area
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Nanay.. I visited your blog for quite a while last nite. It's very interesting and beautiful.I play the organ for a Vietnamese (and Italian) neighborhood church in Kansas City and attend all their delicious food festivals. You know.. the Catholic Church is making all these changes to the interpretation of the liturgy to more fully accomodate the new church presence, mostly in the Phillipines, well - all of Southeast Asia and Africa... a more literal translation of the Latin for consistency.
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I'm not sure what you are talking about with reversing abnormalities if there is no disease in the liver. If there's no disease in the liver, there's nothing to treat. Liver function tests can register in teh abnormal range for all sorts of reasons, not having to do with the liver.
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hmm MOC, before tumours, lessions in the liver become big enough to be seen by CT/PET Scan, there would be some levels of abnormalities first..which can still be reversible.
same applies with breast cancer, before your cells become cancerous, some form of abnormalities either in your gene, your cell, your hormones would happen first.
put it this way-- let us say the LFT showed that you have fatty liver disease -- you can reverse that just by simply changing your diet.
please read through the studies from pubmed, including the abnormalities that LFT can detect even before cancer/cirosis/fibrosis sets in...
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apple, thanks for visiting my site.. I use it to park all my thoughts and research.
am not a very staunch Catholic, but I love music-- preferably reverential music (hate drums and Christian rock music)
my daughter and me is attending a mother-daughter piano course... so I have just started learning solfrege, G Clef and F clef and which keys in the board represents DO RE MI FA SO hehehhe
oh we can play Twinkle Twinkle Little Star now..one of my mother's frustrations when I was growing up is not having enough money to study .music/piano. Now she goes with me and my daughter to piano school, patiently waiting for us outside the room-- once and while peeking to find out what we are doing..
then when we get home, she would ask, what song have you learned to play today?
my daughter would proudly play Twinkle Twinkle Star.. aaaah the joys of simple pleasures!
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Testing for cancer before it is metastatic/registers as real tumors: questionable. My hospital does no testing--scans, blood, etc as they do not believe there is any accurate way to test. In the Stage 3 environment, they might have more of a hunch something could be registered on a scan. But for those of us with no metastatic disease, tumor markers, etc. are not used by all hospitals.
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LtotheK,
Liver Function Tests are not Tumour Markers. It measures different parameters. Please read through the clinical studies about
- Liver Function Tests
- Fibrosure
- Fibrotest
- Fibroscan - comparable to liver biopsy
- Breast Ultrasound Elastography -- comparable to breaset lump biopsy
all these non-invasive diagnostic tests has been accepted based on the Clinical studies. It takes a while for hospitals to learn about these new advancements, understandably because they are busy fixing the urgent..
try to print the clinical studies and bring it along with you for your next appointment..
In Singapore and Philippines, Breast Elastography with ultrasound and Fibroscan are available only in the upscale hospitals.
You might be surprise the Hepathology and Breast Clinics at MD anderson and Sloan are probably offering this as well. The only thing is you have to ask for it yourself and then request that the doctor make the order for you.
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Medical City Philippines -- offers breast elastography and Fibroscan and LFT
Chicago (just an article)
Singapore General Hospital - offers breast elastography and LFT
Miller Clinic in California
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Nanay, again, you are spouting information without a filter that is just wrong. there are no abnormal hormone tests before breast cancer shows up and liver function tests do not reveal subclinical tumors. No. In fact liver tumors have to actually cause damage in the liver before the function tests will pick them up. But liver function tests can be thrown off for reasons having nothing to do with the liver. Mine were elevated the day after a 12 mile run. There was nothing wrong with my liver, the tests were just thrown off by the muscle damage caused by a hard workout.
You have it backwords. The liver function tests may or may not indicate liver damage, they raise the suspicion. Scans make the next call (and ultimately a biopsy is definitive). If the scans are clear, there is no tumor in the liver. What all these references are to ultrasounds and breast imaging techniques, I don't know. WOM is having a liver scan. This will be the test she needs for now.
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Also, what is this business about tumors being reversible before they show up on scans. That doesn't make any sense.
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MOC,
did I every say tumours are reversible? I said cells become abnormal first then become cancer cells then becomes tumours...
and if the tumour is not there yet-- how can you see them on scans???
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if you are serious about piano, Nanay, visit Lypur's piano page on you tube.. (i hate rock and drums too for Mass music (I'm an organist tho)).
http://www.youtube.com/watch?v=vphWgqbF-AM
he has many free lessons.
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alright if WOM needs a liver scan now-- then I am telling her Fibroscan is an option.
if later on she needs a breast scan then elastography is an option..
take it easy...
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apple,
you bring me joy!!
anyways! I am OFF now! its almost 10pm here..
MOC,
just read my signature..
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Oh by the way, at Medical City in the Philippines-- there is a service called Multi Disciplinary Team (MDT) conference for patients and family to meet the whole cancer team (Surgeon, Radiogoly Onc and medical oncology)-- perhaps they can also add in specialists for breast, liver, lung, brain -- in just a single meeting..
I hope that WOM can find such service in California as well..
okay am off now! really!
apple,
I will view the youtube tutorial later...
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Yes, Nanay, you said that before tumors appear on the liver scan there are abnormalities that can be reversed. This is not true. First of all, bc mets to the liver originate in the breast, not in unhealthy liver tissue. There is some kind of dynamic between the liver and the cancer cells that make the liver receptive and then the breast cancer cells grow. This is not a transformation of the liver cells themselves but rather an invasion from outside. So really I have no idea what you are talking about with liver function tests. There are no adequate tests for circulating cancer cells. there is a test that is being studied and there are tumor marker tests, which are highly imperfect but may indicate metastatic disease -- not circulating cancer cells.
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I don't live in California and I'm happy with my cancer team, but thanks.
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MOC,
just one last post, I think WOM's queries and concern about liver disease is not only because of the possibility of mets.. but because she has mentioned several times that she has been exposed to toxins from a refinery as child--and that BC pills and all other she has taken-- she believes is a burden to her system..
she is probably considering Chemo and Herceptin and the possibility that her liver cannot take any more toxins..all the more reason she have to test if her liver is functioning well ("liver function test")
about the test you performed after exercise? which parameter was tested at a high level? SGPT/SGOPT or AST/ALT-- if yes, that is liver transaminases!! its a completely different parameter. If you do strenous exercise its understandable your AST/ALT will be high!
Liver Function Tests are testing levels of alubumin and bilirubin amongst others...not AST/ALT it is not a tumour marker..
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Albumin levels decrease in liver disease such as chirosis..
I guess if she, in the end will take chemo + Herceptin she will have a good baseline report.. to say that look my liver was OK prior to chemo+ Herceptin...
or if it turns out that her liver is not in good condition, then all the more reason to say no to Chemo..
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if you really do not know anything about Liver Function Tests-- its about time you should start knowing now-- don't you think?
we all learn from each other.
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Increased total bilirubin causes jaundice.. jaundice is a common complication of chemo..dont' you think you should know your bilirubin levels too?
Liver tumour markers will not test levels of bilirubin-- only Liver Function Tests can do that.
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Nanay, I think we may be having something of a language and/or cultural misunderstanding here. Since this thread was started by WOM, maybe we should try to stick to her questions here. Anyone can start a new thread, so if you want to discuss other things, it helps to create a new thread. Otherwise the thread can get so off track and convoluted that it becomes useless.
As far as I can see, WOM's latest specific questions were regarding 1)Herceptin and 2)liver issues.
WOM said, "I was given a CT scan but everyone seems to get a PET. Is one better than the other? Should I be pushing for the PET. I have liver issues the ND recognizes and I have seen symptoms but my onc won't address due to the clean CT. "
Instead of randomly Googling liver disease and indiscriminately posting links to everything you find, it may be more helpful to stick to the question she's asking.
Dear WOM - you ask if PET or CT is better than the other. In general, PET scans look for metabolic issues and CT scans look for structural/anatomic issues. They're often combined into a PET/CT scan for more information, so you may want to confirm that yours was a CT alone and then ask your doctor why he didn't or won't order a PET scan. He likely has a reason for your specific case. It seems that your questions is related to "liver issues," and not necessarily cancer - is that true? If your oncologist has ruled out liver metastasis, but your ND "recognizes your liver issues," then it may be a good idea to ask your ND for liver treatment recommendations or consult with a hepatologist. Since you don't indicate what sort of liver issues you're having, it's impossible for us to guess or even provide suggestions. As Member_of_the_Club said, if it's abnormal liver function test results you're concerned about, it could be caused from lots of benign reasons (or it could be a serious issue). If it's other liver issues (?), then what does the diagnosing doctor (ND) recommend?
I guess it's not clear what you're asking here. Maybe you can rephrase your question to be more clear and specific. We can provide general suggestions here, but honestly, if you're having liver issues, you should find a medical professional who takes your concerns seriously and can answer questions framed in the context of your individual circumstances.
Best of luck!
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