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Thank you for recognizing me as a strong advocate for my wife. To know this helps ease the pain of losing her. It was time well spent.

Every time that my wife Etsuko got down on herself for causing this catastrophic mess I was quick to remind her that the seemingly endless collateral damage created by the behavior of various medical and non-medical participants ( incl. family, neighbors, friends, etc. ~ yes Peggy, no ham sandwich here either ) was the bigger problem, out of her control, and that these issues can't and shouldn't be laid on her shoulders. For the last two years of my wife's life I spent entirely too much time having to educate, debate and battle healthcare providers ( HCPs ) and insurance issues. There are a few exceptions, but for the most part my wife was treated by a ( fragmented ) group of HCPs and institutions that knew little more than the bare basics about lung cancer and cancer generally. I had countless debates with doctors and a few nurses over drugs and related tx that they had little or no knowledge of beyond what they could extract from the manufacturer's professional literature ( LOL ! ). Far too often these practitioners would be quick to blame the cancer for most any health or tx issue that would arrise. For instance, my wife passed away with a lingering question about a right lung " mass ". Initially assumed to be a cancerous mass, and handed off to others as such, but not so according to a P/M biopsy. Peggy and I, and as I recall Sue, posted on this subject a couple of months ago so I won't go over it again. IMO, it's counter-productive and it's indicative of poor quality care for treating physicians to use the cancer as an all-purpose scapegoat to explain away issues instead of digging deeper for the real root cause. I dealt with only one doctor ( rad onc ) that spared me the smoke blowing and wasn't afraid to answer my question(s) with a simple " I DON'T KNOW " if he didn't know. In my wife's case there was alot of guessing, speculating and smoke blowing mainly, IMO, in an attempt to protect those fragile egos. Much to their dismay, I would call them on it and it made me a very unpopular caregiver / advocate. Mainly because my quest for answers, and not accepting smoke, forced many HCPs into revealing just how little they actually know about lung cancer. My questions were asked in an honest effort to help with my wife's battle with cancer. Not designed to reveal these individuals as know-nothing idiots. But, most of the time the HCP ended up looking more like just that. Lastly, medical staff ( including insurance ) attitude about late stage cancer patients and tx needs to change. This is esp. important for lung cancer patients as a majority aren't dx'd till late stage. Too much attention and commentary directed at warehousing and questioning tx and care decisions. Basically, a throw-away $ mentality about late stage cancer patients. I had a very revealing and candid conversation with a nursing home rep. who was attempting to secure approval for an extention to Etsuko's last nursing home stay. The conversation quickly turned to money and, despite Etsuko's very poor condition, no further extention was approved. When I explained that this decision made no sense financially as Etsuko would promptly end up hospitalized at much greater expense the rep. agreed, smiled and said this is typical bureaucratic thinking. And, this outcome is precisely what happened.




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Thank you Bill. More and more I can see that most HCP is nothing more than big business that doesn't necessarily care about the patient's health or pain, just how much $ they can rake-in treating others' misfortune.

It sounds like you did everything you could to advocate for your wife Bill. She was lucky to have such a devoted husband.


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Dear Bill,

Thank you for this very important message!

This happens in other situations as well. My son has continued to have pancreatitis issues and recently it has become quite severe. His last few visits to ER for this very severe pain were a problem because his blood tests now show that the indicator for pancreatisis (high lipase) wasn't there. His lipase levels were actually below normal. I knew he did indeed have pancreatitis because every single symptom was there, including frequent burping, which is a dead giveaway.

These results scared me because I have researched this disease and when the lipase and amalyse no longer show elevations, it usually means the patient has moved from acute pancreatitis to chronic pancreatitis, which can be quite serious. In each instance at ER, they immediately stopped pain medication when the blood results came back below normal. Each time I also mentioned that my understanding is that this can mean his pancreas isn't fuctioning at all at this point. The last ER doctor he saw said, "Well, I think other blood results would stil point to that if there was a problem with his pancreas." He diagnosed it as an ulcer, even though the CT scan did not show an ulcer - and he told us so. His comment was, "Well, even though we can't see it, I believe that's what his problem is." He even treated him and prescribed medication for an ulcer. I looked up the medication, and one of the side affects (infrequent) of the medication was that the medication could cause pancreatitis. :roll: Can you believe that?

I told my son to not take it and managed to get him an appointment this morning with one of the top pancreatitis specialists in the country. He, of course, knew without a doubt with a few questions and brief examination that he indeed has pancreatitis and it has moved into the chronic phase. When I told him what the ER doctors say, he just politely said, well, they just don't know. We just need to get him well and keep him out of the Emergency Rooms. He is writing to my son's family doctor with his findings and instructions for care.

I know your point is made in regard to lc, but I just wanted to point out that we should be good advocates in other diseases as well. You have to be especially alert if you are caring for an older patient. Many of them are from the school of "You don't question the doctor. He knows what he's doing". My dad was one of them.

Thanks, Bill, and my prayers continue for you and Rob.



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I hate reading this. I hate that healthcare treats this disease this way.

I have been a nurse for almost 20 yrs now. I do not know how I would of gotten thru this if I had not been. I was able to ask the questions that had to be asked. I knew what to ask, and what to ask for. (sometime I knew too much)

Example-When I first found out it was sclc-I had had a bronchoscopy and it gave us the first results. They then schedualed me for a few other biopsies, I had to be put under for it. I TOLD them while I was out to put in a port for the chemo. I have had so many people ask-- why didn't they ask me so I already would have it in???

Everybody should have an advocate or a friend in medicine to help get thru this-

So glad you were there for her!


I have no idea why

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You did a great job talking about this issue, Bill. I couldn't agree more. I think the advocacy part has been the roughest on this journey as a caregiver (also the most time consuming part of the journey process), but it is sooooo, sooooo critical in this day and age for every dx, not just lung cancer. It's as if everyone is running around in some sort of assumption-based fog and can't see what's in front of them most of the time.

Plus, 10-15 minute appointments with professionals don't even scratch the surface of what the docs. need to know and observe for themselves in order to really serve their patients well. Add a little patient confusion, withdrawal, or anxiety about discussing issues they are having and the advocacy need becomes huge if the best interest of the patient is really going to be served in the process.

And, you're right, get a dx and they all assume that anything else is due to that so they excuse it away or medicate inappropriately for it.

What hurt the most was having to fight so hard to be heard as an advocate, and believed -- I found (over and over again) that the medical community would prefer to brush off the comments and concerns of the family advocate rather than listen. In this day and age with information so readily available to folks on the internet, the medical community needs to wake up and recognize that we do have a brain in our head to be able to intelligently discuss these things (especially considering that among everyone on "the support team", including the doctors, advocates are the ones that spend the most time with the patient and can observe and report much better exactly what is going on).


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I should add that the caregiver and / or patient must be a well-informed strong advocate. Unfortunately, being well informed about your own disease has become essential to good care and safety. AND, IMO, if you know your stuff you can command some degree of respect from the medical staff AND there is less tendency for these people to passify you with a smokescreen. I can still remember hearing a woman yell at her husband to settle down as he was scaring the doctors with his comments that suggested litigation was on his mind. His response to her was, ' Exactly my intent. How better to get and keep their attention '. I see many posts on the LCSC board that clearly demonstrate that some people have thoroughly investigated all aspects of their disease and probably know more about it than the med onc or practitioner. I've had that happen to me. It's frustrating and very unsettling for me when this occurs. I don't want to discover that I know more about a given topic than the physician who's got my wife's life in his hands. Then the delicate matter of clarifying or correcting the error w/o angering the doc and shattering his ego. One of my wife's treating physicians routinely misspoke or errored and I had to point out these mistakes to him on a regular basis. He handled it this way. The incident in question simply vanished from the discussion and we resumed the discussion on the corrected path as if the snafu never occurred. This included prescription errors. Very strange to go thru this silly routine with a straight face but it worked for him so my wife and I played along. And, once somebody screws up it's hard not to watch over their shoulder from then on. Quality of care, continuity of care, etc. may be better in a more clinical cancer-oriented / research setting. I can only speak about experience, both professionally and personally, with private practice physicians and general hospitals and nursing homes with no particular emphasis in oncology.


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That is why this LC Board is so important. We research and learn from other's experience and treatments. This is one of the reasons why we are here or at least why I am here. Also this is our extended family. If we didn't educate ourselves, we would only be at the mercy of the PRACTICING Physicians. I have many thoughts and opinions about how cancer patients and seriously ill people are treated. It is rather frightening if you just think about the treatmant we receive. If you die oh well, bring in a new one.

On 20/20 last night, one of their stories was about syenthetic blood. If you didn't have a wrist band on from the mfg. saying you didn't want to be transfused with it, they administered synthetic instead of the real blood. Even if you were awake and said no, they gave it to you any way if you needed blood. FDA has approved, it can cause heart attacks, strokes and even death. It is what they call (Protocal) LOL. YIKES!!!! This is just one example, how many more do we not know about. :roll:

Bill, you are so right about the doctor's, CYA...Agree with one another instead of being honest. OK this is long enough. I'll get off of my soap box...GRRRRRRR

Prayers for safe and the right treatment,


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