Profuse Sweating and itching still after 2 years in remission

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Comments

  • Blindsided
    Blindsided Member Posts: 3
    You Been Through A Lot

    it sounds like you have fought an AWSOME fight. Don't ever back off just get more aggressive as you see necessary. Perhaps your Ex should walk in your shoes and then say I didn't sign up for this.  My Hodgkins has only been in remission for 4 months but I have also had to do it on my own. Sounds like you need more medical attention, do whatever it takes. I do have insurance but the hospital did forgive my part of the bill by filling out the paper work for financial aid.

  • Unknown
    edited November 2016 #23
    unknown said:

    Insurance

    when I went to MD Anderson for 4 days of second opinion tests, I was billed $54k+. It was obvious they were piling on tons of tests just to make money. 2 CTs not 1, heart stress tests, bone marrow from both hips, not just one, etc etc etc. When called in for my test results I was told to be there at 7 AM (don't be late!). Finally met with the doctor at 11:00 AM for about 10 minutes during which time she took a phone call. It was obvious she had not looked at the report before our meeting. Plus, in prep for the visit I was told to bring all my CDs from past scans, and all my records which I dutifully collected with great effort. When I checked in I gave them to the "social worker" but my report said "no reference scans available". About 10 CDs. Somebody lost them or I suspect threw them away. I have to wonder if the reason for two scans was confusion or maybe the first scan was lost. This kind of confusion and greed really drives up medical costs and I understand why insurance companies balk. Many facilities ask for the moon hoping to get just some of it. My insurance paid $51k and I paid almost $4k. Add the expenses of airfare, hotel bills, meals, car rental, parking etc it was a very expensive exercise. I felt cheated and would never go back there. I know people who love the place but not me. In future I will stick with individual specialists in my area - people I can sit and have a quiet converstaion with and not be herded around like cattle. After 4 years I still have a very bad taste in my mouth. This is only part of why medical care is so high - as WC Fields said " never give a sucker an even break".

    Another funny experience

    i was in hospital for 8 days for extraction of a retroperitoneal (sp?) biopsy. Awful experience. The pretty young assistants were constantly asking if I would like some ice cream or this or that. i was flattered by their attention. When I reviewed the bill I saw that those creamsicles cost me $12.50 each. My daily multivitamin was $32. Tylenol were $8 per pill. Just another way of running up your bill. The medical system is fraught with such money making gimmicks.

  • Insight

    Linda,

    When I first got diagnosed with the prostate cancer I went to a radiation oncologist to discuss whether surgical removal or radiation would be best.  He was a guy I had met years before when I first got lymphoma, and we talked fees for a little bit, and I mentioned the astronomical price the cancer center told me my lymphoma treatment had cost.  He balked and said, "That's what they submitted. Then the insurance company told them to come back to reality, and what they settled to pay was probably half what we asked for."   He said such was standard back-and-forth between providers and insurers.  The same with auto accident claims: The lawyer demands $100,000, the company offers $10,000, and they later meet somewhere toward the middle.

    max

    Insurance

    when I went to MD Anderson for 4 days of second opinion tests, I was billed $54k+. It was obvious they were piling on tons of tests just to make money. 2 CTs not 1, heart stress tests, bone marrow from both hips, not just one, etc etc etc. When called in for my test results I was told to be there at 7 AM (don't be late!). Finally met with the doctor at 11:00 AM for about 10 minutes during which time she took a phone call. It was obvious she had not looked at the report before our meeting. Plus, in prep for the visit I was told to bring all my CDs from past scans, and all my records which I dutifully collected with great effort. When I checked in I gave them to the "social worker" but my report said "no reference scans available". About 10 CDs. Somebody lost them or I suspect threw them away. I have to wonder if the reason for two scans was confusion or maybe the first scan was lost. This kind of confusion and greed really drives up medical costs and I understand why insurance companies balk. Many facilities ask for the moon hoping to get just some of it. My insurance paid $51k and I paid almost $4k. Add the expenses of airfare, hotel bills, meals, car rental, parking etc it was a very expensive exercise. I felt cheated and would never go back there. I know people who love the place but not me. In future I will stick with individual specialists in my area - people I can sit and have a quiet converstaion with and not be herded around like cattle. After 4 years I still have a very bad taste in my mouth. This is only part of why medical care is so high - as WC Fields said " never give a sucker an even break".

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,752 Member
    unknown said:

    Another funny experience

    i was in hospital for 8 days for extraction of a retroperitoneal (sp?) biopsy. Awful experience. The pretty young assistants were constantly asking if I would like some ice cream or this or that. i was flattered by their attention. When I reviewed the bill I saw that those creamsicles cost me $12.50 each. My daily multivitamin was $32. Tylenol were $8 per pill. Just another way of running up your bill. The medical system is fraught with such money making gimmicks.

    Billing

    I think the following response to GKH's post remains relevant enough to Lisa's questions to include here.

    I regard travelling to any of the elite cancer centers a waste of time and money in probably 90% of cases. There may be exceptions regarding extremely rare cancers.  But, by definition, most cancers most people have are not rare or unusually problematic.  Lots of the guys at the Prostate Board have travelled internationally for care -- care that they could have got at home.  They discuss going to differing countries to get tests that most of the other writers have never heard of, and which are very likely of no real benefit.  I have only know personally three people who went to MD Anderson or Sloan Kettering CC as their local care was failing.  They spent a few days, were told that MD would do exactly what their local doctors were doing, and returned home.  And died.  I also knew years ago one guy who travelled to Emory, and one to Duke.  No benefit.  Of all of these individuals, one had prostate, one breast, two leukemia, and one a rare bladder cancer.  The premiere centers would have no doubt done as well as their local centers, just seemingly not better.

    The personalization GK mentions renders local or regional care better, in my opinion.  It is very much like the university system, in which I worked and learned academia's mythologies.  Ivy schools pretend to teack better; they do not.  Often, they teach more poorly.  A given school might have the best professor in the world in this or that subject.  Except that no undergraduate will ever take a course from that person, and well may never see him or her.  Even graduate students may not interface with a 'world authority.'   Usually, these people don't even teach anyway; they are scholars-in-residence, doing research.  A good state university, in most cases, provides a better education.  A cousin sent one daughter to Boston College on a scholarship, the other daughter to Emory.  The daughter who attended Emory is weathy now, the daughter from B.C. is hungary.  The mom went to Kansas State, and is wealther than both daughters put together.

    When I was in ICU decades ago, whenever a nurse would change a bandage, or a cath tube, or really anything, they would peel off stickers and place them on their shirts. By the end of a shift, they were half covered in these things.  I later learned that these were barcodes or something similiar, for billing.  It's like a hotel room, where bath towels and soap are extra.  My inpatient bill tooks months to compile, and when it went to my insurance carrier, they called me and said they could not pay it until it was reviewed by an independent auditordue to the amount. About a month later I heard that the audit was over and that the insurance carrier paid. I asked for a copy of the bill which they mailed me (this was befor e-mail): 60 pages, single spaced.

    I looked at the first item at the top of Page 1 of 60. It was for "impatient care, ICU."  Same for the second line.  Except that the dates were for two days before I ever had the accident and was admitted.  TWO AUDITS had missed this, as had the Hospital Billing Department.  I called my insturance company and pointed it out to them. The adjuster said "forget about it."   Wow.  What was in the other 60 pages ?

    When I was researching how to treat my prostate cancer, I mentined in passing to my N.P. that I wished I knew my medical oncologist's who had treated me for Hodgkin's view of my case (he was in no way involved in my prostate care). To my shock, he called the next day, to discuss my plans, and shared his thoughts.  I was amazed at his interest.  A few weeks later a consultation bill arrived in the mail, for our $150 phone chat.  I still appreciate their efficiency in getting my comment to him, and him calling me. He probably had no choice in the billing. I still regard him as a prince and a genius.  I can't imagine that much attention at the prestigious centers.  My breast cancer friend said the complex at MDA-Houston was a sprawling maze, and that the experience was unpleasant; sort of like a college freshman searching for his classrooms the first day of a semester. May she rest in peace.

    Marriott or Trump Tower:  Both will have a clean bed and good cable, etc.  But the bills will be dissimiliar.

    .

  • Billing

    I think the following response to GKH's post remains relevant enough to Lisa's questions to include here.

    I regard travelling to any of the elite cancer centers a waste of time and money in probably 90% of cases. There may be exceptions regarding extremely rare cancers.  But, by definition, most cancers most people have are not rare or unusually problematic.  Lots of the guys at the Prostate Board have travelled internationally for care -- care that they could have got at home.  They discuss going to differing countries to get tests that most of the other writers have never heard of, and which are very likely of no real benefit.  I have only know personally three people who went to MD Anderson or Sloan Kettering CC as their local care was failing.  They spent a few days, were told that MD would do exactly what their local doctors were doing, and returned home.  And died.  I also knew years ago one guy who travelled to Emory, and one to Duke.  No benefit.  Of all of these individuals, one had prostate, one breast, two leukemia, and one a rare bladder cancer.  The premiere centers would have no doubt done as well as their local centers, just seemingly not better.

    The personalization GK mentions renders local or regional care better, in my opinion.  It is very much like the university system, in which I worked and learned academia's mythologies.  Ivy schools pretend to teack better; they do not.  Often, they teach more poorly.  A given school might have the best professor in the world in this or that subject.  Except that no undergraduate will ever take a course from that person, and well may never see him or her.  Even graduate students may not interface with a 'world authority.'   Usually, these people don't even teach anyway; they are scholars-in-residence, doing research.  A good state university, in most cases, provides a better education.  A cousin sent one daughter to Boston College on a scholarship, the other daughter to Emory.  The daughter who attended Emory is weathy now, the daughter from B.C. is hungary.  The mom went to Kansas State, and is wealther than both daughters put together.

    When I was in ICU decades ago, whenever a nurse would change a bandage, or a cath tube, or really anything, they would peel off stickers and place them on their shirts. By the end of a shift, they were half covered in these things.  I later learned that these were barcodes or something similiar, for billing.  It's like a hotel room, where bath towels and soap are extra.  My inpatient bill tooks months to compile, and when it went to my insurance carrier, they called me and said they could not pay it until it was reviewed by an independent auditordue to the amount. About a month later I heard that the audit was over and that the insurance carrier paid. I asked for a copy of the bill which they mailed me (this was befor e-mail): 60 pages, single spaced.

    I looked at the first item at the top of Page 1 of 60. It was for "impatient care, ICU."  Same for the second line.  Except that the dates were for two days before I ever had the accident and was admitted.  TWO AUDITS had missed this, as had the Hospital Billing Department.  I called my insturance company and pointed it out to them. The adjuster said "forget about it."   Wow.  What was in the other 60 pages ?

    When I was researching how to treat my prostate cancer, I mentined in passing to my N.P. that I wished I knew my medical oncologist's who had treated me for Hodgkin's view of my case (he was in no way involved in my prostate care). To my shock, he called the next day, to discuss my plans, and shared his thoughts.  I was amazed at his interest.  A few weeks later a consultation bill arrived in the mail, for our $150 phone chat.  I still appreciate their efficiency in getting my comment to him, and him calling me. He probably had no choice in the billing. I still regard him as a prince and a genius.  I can't imagine that much attention at the prestigious centers.  My breast cancer friend said the complex at MDA-Houston was a sprawling maze, and that the experience was unpleasant; sort of like a college freshman searching for his classrooms the first day of a semester. May she rest in peace.

    Marriott or Trump Tower:  Both will have a clean bed and good cable, etc.  But the bills will be dissimiliar.

    .

    Mostly agree Max

    Max, I was asked to fill out a post visit survey by MDA. I mentioned my issues and was never really responded to in any meaningful way. I later found out that the group had a round table each morning where they discussed cases. A letter was drawn up which concluded I was in remission. The Dr I met with was a cardiologist, not an oncologist. I have never had heart issues. It was her last day there and she was arranging her move to another state and was assigned to inform me of the letter contents, as my assigned oncologist was busy. Of course the analysis recommended more expensive tests and bi-annual return visits. Also once you are on their mailing list you are constantly bombarded with requests for donations. My experience is that these fancy clinics do not have magic wands and in a place like MDA its very easy to get lost in the fray and allowed to wither. Also I had a peripheral issue with communications. I have hearing difficulty. That combined with the crowding, confusion and the fact that many, maybe most, of the staff were not native english speakers (chinese, hindi, spanish and vatious other accents) made it very very difficult for me. I earned my livlihood internationally and have travelled and interracted in almost 70 different countries. I lived overseas 12 years. So that is not an issue culturally for me, its more a practical issue. My life was on the line and I was less than happy with my situational awareness. Also I was alone. What I would describe as " noisy" and "crowded" grand central station atmospere in parts of the facility combined with the stress of cancer and difficulty hearing/understanding made it a most unpleasant experience. I actually felt more at ease at the Sook in Cairo. I would go back for very specialized well defined in advance treatments or studies/trials but could not recommend it for treatments available in a patient's local area. As I say, they do not, except in some very specific situations, have magic wands.