newly diagnosed newbie

[Lee]

I'm beginning to believe you should forgo conventional medicine and seek treatment at the Hoxsey Clinc.

Consider it and let us know how it works out for you.

Lee

[LeonW]

. . again, regarding those commentators who keep trying to bully me into conventional treatments, my wife says that they should take care not to give medical advice . .

Gee . . .

Please don't accuse any contributor in the many pages in this threat of bullying. I find it hard to understand that you *again* revert to this accusation after the many pages of honest personal advise and opinion from sufferers and survivors of cancer. We've all been there, seen it all, or are still in the midst of the fight / hoping for success - Your accusation is inappropriate and misplaced.

. . .Information is one thing, but advice is another . .

Like the proverb on advising horses to drink?

I give up.

Still wishing that whatever you path you choose, you'll find what your searching for.
Over and out.
L

[bitchslapped]

I have been trying to learn as much as possible about diagnosis and treatment but there is so much to take in. For example, in one of the posts on this forum, I read that it is a good idea to get tested - before surgery - for genetic mutations or other biological abnormalities that might influence treatment or staging. I won't be seeing my oncologist until May 25th, so I have absolutely no idea 1) if my particular situation calls for such testing and, if so, 2) how to go about advocating for it.

Any ideas?? Thanks in advance!

Quick update. I got a call from the oncologist's nurse who went over my questions with the oncologist. She said that most of my questions would be handled after surgery, but that didn't make much sense to me. She also said that their center does not test CA19-9 and that any of the other tests, if at all necessary, don't need to be done pre-surgery. She offered to facilitate a second opinion at Dana Farber or Dartmouth Hitchcock but neither of those are in our insurance network. I think, however, that she may be able to make the case for having to go out of network so we could get prior authorization (possibly). Thing is, there is just one week before surgery and my schedule is totally packed between now and then. It seems like any second opinions will only be available until post-surgery. I'm totally overwhelmed about what to do at this point. I can't even think straight about this as there has been too much information at an extremely stressful time.

Any thoughts?

And, again, regarding those commentators who keep trying to bully me into conventional treatments, my wife says that they should take care not to give medical advice.

Information is one thing, but advice is another.

It seems to me that there is a fine line between soliciting medical advice, opinions vs. information. Not sure what you expected from posting your entire CT findings on a public forum either. It appears your interpretation of medical advice is somewhat spotty/subjective, depending on whether or not you like the manner in which it is delivered. Suggesting certain testing & labwork is not medical advice, rather information, yet cautioning that a tumor can grow to a blockage is fear mongering. There is no fear mongering going on in this forum. People try to be forthright w/o giving all the gory details. It occurs to me that in fact, you may be the bully here.

There is plenty of bureaucracy w/the FDA, no doubt, & regulations vs $ etc. However drug manufacturers & their families get cancer too. Unlike the vitamin & herb industry basically unregulated for all intents & purposes.
You're correct in that this forum is basically in favor of science-based medicine. There are plenty of charlatans out there more than willing to take your $ for a cancer cure if you drink their koolaid, buying into their testimonials.
Desperate people do desperate things. One needs to weigh both sides using their own judgement. There's a whole lot of grey between black & white.
There is no comparison to diet & exercise as a benefit for heart disease or diabetes, let's say, & getting off of some medications for those conditions, to the ever changing chameleon-like qualities of a cancer cell from tumor to tumor, organ to organ---the Master of Disguise.

So far the only known cure for cancer is surgery...yes, cutting it out, provided no stray pinpoint of cancer in a cell is left.

Seems you've gotten plenty of attention here. Enough of the sniveling already. Nobody knows more about the stress & despair of a cancer dx than those of us here on Colon Talk. Hope you find a treatment plan that makes sense to you once you get a final dx.


Best Wishes
BS

[mpbser]

" Suggesting certain testing & labwork is not medical advice, rather information"

That's not what I was referring to. I was referring to the handful of folks (the minority) who essentially keep telling me to "do chemo", unquestioningly listen to the doctors, or else I will die a fool.

[peanut_8]

No, I am not and I'm not sure what that has to do with anything.

As I have already written, my wife is an attorney. Just as one cannot practice law without a license, and this includes giving legal advice, similar rules apply to medical practice.

Funny how it's OK for you to recommend the medical treatment at the Hoxey place, and then chastise others for encouraging you to seek standardized medical treatment as opposed to alternative methods, going so far as to call them bullies and accuse them of fear mongering.

You're not a medical doctor
You recommend alternative medical treatment

I would recommend the Hoxsey treatment as well. My grandfather and mother have both been on the Hoxsey Tonic and followed the Hoxsey diet. The first time my mother went was back in the 1970's for cervical cancer. She went again a few months ago for skin cancer. My grandfather was diagnosed with bladder cancer, went to the BioMedical Clinic, and 6 months later was cancer free.


You chastise folks for encouraging you to seek standardized treatment, using your wife as a source, claim folks who aren't doctors shouldn't give medical advice.

And, again, regarding those commentators who keep trying to bully me into conventional treatments, my wife says that they should take care not to give medical advice.
and
As I have already written, my wife is an attorney. Just as one cannot practice law without a license, and this includes giving legal advice, similar rules apply to medical practice.


Do you see why this seems incongruent.

And for the record, I couldn't care less what you decide to do regarding your treatment.

Butt for the rest of the cancer population, please be advised that he is using anecdotal evidence to support his claims that alternative treatment is effective, there is no reputable science behind it.

All the best,
peanut

[mpbser]

No, peanut, you don't seem to get it.

Telling someone [me in particular] that he/she [I] must do [chemo, whatever, insert treatment name here] or else my disease will "inevitably" progress is offering medical advice.

Pasting anecdotes from forums and links to articles regarding natural cancer treatments is giving information and providing education. It was also a response to a request for evidence that natural alternatives may be effective. This is not the same as instructing someone to do something (i.e. give advice).

As I said, there is a difference.

[rp1954]

At this point in time, the chemo debate is a distraction that can play out after surgery. It's wasting precious time, energy and headspace before surgery. Because I had many questions and did much research, we didn't get chemo on line until 6 weeks after surgery but did have the cimetidine and various potent levels of chemistry at work immediately before and after surgery, initially ramped up in big jumps.

In retrospect I would have preferred chemo to start sooner (ca two weeks if possible then) because we got the various (potent levels of) supplements and metronomic chemo restarted during the 24 hours following a second surgery with outstanding results (this had many weeks of research and preparation). I tend to view the various alternatives - supplements, Hoxsey etc as likely additive if they are not incompatible or duplicative with another item.

What you need to worry about is what you get done before your surgery. The test data are not recoverable and the pre-/perisurgical cimetidine-vitamin D etc are a special situational opportunity, where each day on before surgery is valuable. When the doctors won't or can't do something, we have to consider it ourselves - we listen carefully but make tough decisions for ourselves and get things done, carefully. Effective action is the crucial step that sinks many plans, hopes and theories, especially with complementary or alternative medicine. With CAM, there is likely less support especially in the hospital, and even opposition (divided medical opinions). Finding an experienced, knowledgeable integrative doctor for support is very important.

[mpbser]

rp1954, thank you so much for your input. You've been extremely informative and helpful throughout this thread.

[mpbser]

rp1954, I totally agree but the problem is that I simply do not have the time either for the second opinion referrals from my oncologist or to go a different route. I didn't have insurance until just about ten days ago and had not seem a primary care doctor except once (self pay) after discharge from the hospital April 1st. She would likely be the one to arrange the testing my oncologist refuses to do. As I said in another comment, between narrowing down the specific pre-surgery tests (I think it was Thursday?) there is just one week before surgery. I work today, am in the hospital doing a nuclear stress test tomorrow then have to go back to work right away, back to hospital and work Wednesday, and then work and surgery prep Thursday. It's very frustrating having these tests go undone plus not having a team in which I have a ton of confidence.

I do think my surgeon has been great so far... but there have been a couple of red flags. 1) He prescribed Celebrex 2x/day on the day before surgery. This is the last of the selective COX-2 inhibitors on the market. There is a class action (actually more than one class action) lawsuit(s) against it similar to the Vioxx case. My wife questioned its use at our meeting with the surgeon's nurse (along with other things she has been involved in as an attorney including a class action lawsuit against Bair Hugger, a post-surgery wrap that contributes to sepsis). 2) When talking about my CT scan on Friday, he dismissed the lesions and cysts on my right kidney by referencing their size as nothing to worry about. Ironically I had just read a journal article that stated size of kidney lesions and cysts is irrelevant to malignancy. While, yes, more commonly CC would metasticize (sp?) first to the liver, there have been cases of left hemi CC metasticizing to the right kidney without liver involvement. Strange, but true.

I would really appreciate it if people would stop it with the obnoxious comments, e.g. "Seems you've gotten plenty of attention here. Enough of the sniveling already..." and "...fool." Being called a fool yesterday during all this was incredibly rude, I couldn't believe it. But the wonderfully helpful comments from others will keep me around for now (sorry, peanut).

I want to just clear up something that I rushed off yesterday re: "Telling someone [me in particular] that he/she [I] must do [chemo, whatever, insert treatment name here] or else my disease will 'inevitably' progress is offering medical advice."

There isn't as much of a fine line as one might think. Here is my non-attorney interpretation of what my wife explained to me:

In the legal field, a lawyer fields questions from potential clients all the time. If the lawyer wants to mitigate risks of the PC thinking there is an attorney-client relationship and then acting in reliance on whatever the lawyer says at that stage, the lawyer must take care to be clear that whatever she says does not create such a relationship or the impression that such a relationship exists. Why? The PC could potentially act (do something that disposes of a legal issue and affects the legal rights of the PC) upon the "advice" and, if the results are adverse, complain to the Bar that the lawyer violated ethical rules ("Rules of Professional Conduct" in her state) protecting clients.

My wife constantly receives calls from PCs wanting [free] advice. Because of the above, she never gives it until an attorney-client relationship is formed. If anything, she will provide a general opinion and suggestions about where to get further information, etc.

Similar principles guide the rules of unauthorized practice of law. (without getting into the tricky issues of multi- and cross-jurisdictional issues of licensed attorneys, a related subject) A non-lawyer cannot engage in the practice of law (unless expressly allowed by statute, which is very rare [wife is actually an expert on this]) anywhere in the US. What constitutes the practice of law? In her state, it's defined as:

[D]irecting and managing the enforcement of legal claims and the establishment of the legal rights of others, where it is necessary to form and to act upon opinions as to what those rights are and as to the legal methods which must be adopted to enforce them, the practice of giving or furnishing legal advice as to such rights and methods and the practice, as an occupation, of drafting documents by which such rights are created, modified, surrendered or secured...

Ok, so what on earth does this have to do with unauthorized practice of medicine? It is highly likely that if the legal terms used above are swapped with medical terms, then the results will match state law and regulations regarding medical practice. Here is a cut and paste of the above, substituting medical terminology for the legal terminology:

In the medical field, a doctor fields questions from potential patients all the time. If the doctor wants to mitigate risks of the PP thinking there is a doctor-patient relationship and then acting in reliance on whatever the doctor says at that stage, the doctor must take care to be clear that whatever she says does not create such a relationship or the impression that such a relationship exists. Why? The PP could potentially act (do something that treats and affects the health of the PP) upon the "advice" and, if the results are adverse, complain to the [State regulatory board] that the doctor violated ethical rules protecting patients.

My doctor constantly receives calls from PPs wanting [free] advice. Because of the above, she never gives it until a doctor-patient relationship is formed. If anything, she will provide a general opinion and suggestions about testing, education, information, etc.

Similar principles guide the rules of unauthorized practice of medicine. (without getting into the tricky issues of multi- and cross-jurisdictional issues of licensed doctors, a related subject) A non-doctor cannot engage in the practice of medicine (unless expressly allowed by statute, which is very rare [wife is actually an expert on this]) anywhere in the US. What constitutes the practice of medicine? ...it's defined as:

[D]irecting and managing the medical diagnosis, treatment, and prognosis and the establishment of the health of others, where it is necessary to form and to act upon opinions as to what appropriate diagnosis, treatment, and prognosis are and as to the medical methods which must be adopted to affect them, the practice of giving or furnishing medical advice as to such diagnosis, treatment, and prognosis and the practice, as an occupation, of treating the health of patients by which such health affects are created, modified, surrendered or secured...

So, in sum (excuse the repetition) -- Pasting anecdotes from forums and links to articles regarding natural cancer treatments, i.e. giving information and providing education, is not offering diagnosis, treatment, and prognosis or advising someone to do something that will affect one's health. (The parallel would actually be to "legal advocacy," education that is not considered practice of law.) Nor is informing someone of this or that test or diagnostic technique especially in the context of explaining "this is what I did." Nothing I have written, or most everyone else for that matter (as I said there has only been a handful but it's probably more like a few), constitutes the provision of medical advice.

[cbsmith]

So you post asking for help and opinions from people, say you don't have time to research yourself, get opinions and don't agree with them. Then you say we may be breaking the law or could be sued by the information we gave?

[mpbser]

cbsmith,

Please read my OP and other questions throughout the threat and see what I wrote, because your question is a straw man argument.

For example, from my OP: " have been trying to learn as much as possible about diagnosis and treatment but there is so much to take in. For example, in one of the posts on this forum, I read that it is a good idea to get tested - before surgery - for genetic mutations or other biological abnormalities that might influence treatment or staging. I won't be seeing my oncologist until May 25th, so I have absolutely no idea 1) if my particular situation calls for such testing and, if so, 2) how to go about advocating for it.
Any ideas??"

I've never asked for general advice. I've been asking very specific questions.

[weisssoccermom]

As a moderator, I'm going to step in and you'll likely not like what I have to say. As a cancer survivor myself (going on 11 years), I can give you MY opinion and you may or may not like it...nor will you probably like the opinions of most people on this board. That doesn't, however, give you the right to be snarky or nasty when someone tells you what they have been privy to. For those of us who have been around a long time and for those who are just beginning their journey, we all have to decide whether or not we want to/don't want to listen to our doctor. It seems to me that you've been given information, treatment plans, etc. by a doctor that you have consulted and you don't necessarily agree with those recommendations. That's fine.....heck I didn't either....at least not all of their recommendations. Then, it appears, you come to the board, want to hear opinions/stories/recommendations from others who have been through the treatments, plans, etc. and you still don't like what you are hearing. Fair enough BUT....don't come onto the board and start dissing our members. Look, if you want to do alternative treatments....feel free to but don't be surprised that most, if not all of the members on this board won't embrace that line of thinking. Just a side note, although I didn't follow the 'standard of care' recommendation for surgery, I DID follow the recommendations of the surgeon/oncologist regarding chemo, radiation and all super meticulous follow ups.....although I did do the chemo in a different order than is usual. Let's be honest...NO ONE 'wants' to do chemo....we all know that it is basically poison that is being put in our bodies BUT....those that do opt for chemo realize and recognize that killing cancer cells is the primary objective....no the ONLY objective....and we all believe that a multi-prong approach is the appropriate approach...at least for us. We give you our opinions, and you don't like it....ok, fine but PLEASE don't necessarily expect us to agree with/embrace your approach.

You've given us one or two people that you have heard of that have 'conquered' cancer by juicing, exercise, taking vitamins, etc. Heck, if it worked for them....more power to them. Most people aren't willing to take that chance and you have to understand that. IF the statistics for people 'kicking' cancer were so great using SOLELY these alternative treatments, honestly, people would be all over it! As for giving medical information....sorry, we are not doing that and btw, as a moderator, we are VERY cognizant of the fact that, on occasion, we have had members doing that and have SHUT IT DOWN immediately. Simply relaying to you the tests that are most common and when we get them is NOT giving medical advice.....it is merely telling you how OUR doctors have proceeded following standard procedures.

My advice to you (NOT medical advice) is what I tell everyone. You have to TRUST and have FAITH in your medical team. They will be the doctors following you for the next five+ years of your journey. If you don't trust or have faith in them, if you don't believe that they have YOUR best interests, then please find another doctor that you CAN trust, believe and have faith in. I wish you the best in your journey and I ask that you respect the members on this forum and understand that when you ask for advice/opinions, you are likely going to get information that you don't want to hear.

[mpbser]

In case you don't understand the answer I just provided, as it relates to the unauthorized practice of medicine by way of providing medical advice, perhaps I need to break it down more.

The term "advice," as explained in my long comment comparing legal practice and medical practice, doesn't include education and provision of information (e.g. an answer to a question such as "what kind of testing is used to get tested - before surgery - for genetic mutations or other biological abnormalities that might influence treatment or staging? What particular situations calls for such testing? How does one go about advocating for it?") that does not "dispose" (that the legal term my wife uses for distinguishing actionable information that can affect the rights [in medicine, health] of the person who acts upon an issue in the manner advised. Again, such questions and answers do not contain diagnosis, prognosis, or treatment advice. Testing, on the other hand, does nothing to change the health or condition; therefore, suggestions of testing does not fall into the "unauthorized provision of medical advice" category.

It can be quite complicated as there seems to be a lot of overlap and nuance, particularly to people not versed in the law. It has taken me a few years of learning from my wife what it means in her field, and even then it's not always clear.

[mpbser]

"That doesn't, however, give you the right to be snarky or nasty when someone tells you what they have been privy to."

This is an inaccurate characterization. I'm really getting very sick and tired of this ganging up. Yes, bullying at a colon support forum. Unbelievable.

I have never been snarky or nasty to anyone who has shared their experience(s) and I have actually welcomed and thanked people for that.

What I have taken offense to is being told that my cancer will inevitably progress without fail if I don't do chemo (diagnosis, prognosis, and treatment advice), that I am a fool to not listen to the doctors and follow conventional treatment, and that I should "stop sniveling already."

I think I will try private messaging the few decent people who have participated in this thread because bullying is the last thing people should be doing in a place like this. Sick and disappointing. Thanks a lot.

[sailbd]

This thread screams for Gaelen! Miss her and her in-put.