Friday, January 23, 2015

Progress in America: (9) A Non-Cancer Diary? Part III

Those Second Opinions

    Of course, we were elated.  Took a few days off to celebrate our anniversary and then came back to see the 2 docs.  First I got hold of all the scans and radiology reports.  And that was an eye opener.  On the reports at the very top of the page line one was patient’s name, date of birth.  Line 2 was patient’s history.  On the early scans this was blank.  In the case of the recent scans, it said “Patient History: Prostate Cancer.”  And this seemed to make all the difference:

    Prescription 2 for the system: FRAMING is a real problem.  Diagnosticians must be trained to overcome this.  Just because you have a flag of a condition does not imply that what was earlier not problematic is now seen as a leading indicator.

    October 28th was a busy day.  We planed to see the first doctor (the rheumatologist) in the morning.  Then we’d go to Dr.  Jim for the bone doc’s take on it all.  Finally, I was to do a TV show on justice and Rawls.  The day started fabulously: one of my heros, Amartya Sen, got the US medal of arts and humanities from Obama.  That augered well.
   The rheumatologist, Dr. Jane, refused to look at the scans, only the reports.  Jane said she wasn’t well trained to look at scans.  After a thorough examination of my vital signs, and an interview she announced that maybe this scare was overblown by the radiologists.  Perhaps no biopsies were needed.  But to make sure, she wanted to look for blood markers of multiple myeloma, Padgett’s disease and a few other things.  But she felt none of these problems were likely.  But, since she didn't look at the scans, she felt that Dr.  Jim (who she knew) might have an experienced eye to evaluate the case.
    Afternoon.  It was Doctor Jim’s turn.  After a quick greeting, he immediately asked to see the scans. Slipping it into the computer, he mentioned that he had lost both his wife, and his brother to cancer. The scans came up, and he took one look at the bone scan, and said clearly, “This is going to   kill  you.  This is clear sign of metastized cancer.”  He then examined the MRI and said there were spots of importance in the left hip.  His message was clear and succinct:  The fact that the CT scans didn’t change over those years doesn’t change the need for a biopsy.  I have to find out what is going on. Quite possibly this is metastisized from the prostate but he wouldn’t rule out other forms of cancer. He thought Dr.  Jane’s choice of additional tests were spot on.  He said hold off sending the scans to J Hopkins till after the tissue was retrieved and analyzed.  He recommended a great person for the biopsy would be Dr.  Richard.  He was the same as Dr.  Lisa had recommended at Suburban.  Finally, he wished me luck and said he would like to continue being involved in this case. 

    Lesson 2 for the Doc and Prescription 3 for the system:  Honesty and full disclosure are not the same as lack of sensitivity in communication.  Learning how to express oneself should be part of the medical curriculum.

    I was a bit shaky at the TV show, but better than I might have expected.  (Check it out if you want.)    But back to the story: the next day, Wednesday, I called my doctor and made an appointment to see Dr.  Richard on Nov.  5.  I also called my urologist, Benny, to see him.  That appointment was for the 4th of November.

    Two days later, on Friday, Dr.  Jane called.  Tests ruled out multiple mylenoma and most other things (but not metastasized prostate cancer).  A few days passed and I saw Benny.  He was monitoring my prostate cancer.  Hearing all that transpired, he quickly concluded, that he was ‘certain’ this wasn’t metastasized prostate cancer to the bone.  He ruled that out on the basis of the Gleason scores, the general biopsies, the PSA tests.  He thought it would be unheard of for this to be metastasized prostate cancer.  He also was quite sure it wasn’t any form of bone cancer.  If I had metastasized bone cancer I’d be in a lot of pain, and would have lost a lot of weight.  To him, reading the reports of the CT and MRI scans, they seemed uninteresting.  But the bone scan looked very troubling.  He felt I should get a biopsy.  Best would be by Dr.  Richard.  He thought Richard had lots of experience, liked puzzles, was very good, might have some ideas.

    Lesson 3 for the Doc and Prescription 4 for the system: Don’t let test results drive your diagnostics if you have other mitigating information.  So, for example, the lack of pain, illness in my case should have caused doubt re the test results.

November 5 I saw Dr.  Richard.  The biopsy doc looked at all the scans with us for 45 minutes.  His conclusion: He eliminated hot spot after hot spot as coming from broken bones (blame biking in DC traffic) and arthritis (blame living this long and my mother’s family).  But two of the “hot spots” remained unexplained.  Looking at the CT’s carefully, he showed that these‘hot spots’ were associated with bone deformities and that they have not changed at all in 7 years.  Why these deformities would show up as absorbing more of the radio active material in the bone scan was not clear.  But it was more of a puzzle than a medical problem.  It was very unlikely metastasized anything. 

    Hint 2 for the Patient: Make sure all the information details of your case are being properly processed.

    We could still do a biopsy.  It would close the book as to cancer.  It would probably show no malignancy and then we could call it quits.  If it did show malignancy it certainly would be very slow moving.  So a week later, I got the biopsy.

Progress in America: (9) A Non-Cancer Diary? Part IV

Biopsy but not quite done

    The biopsy was not bad; my bones proved so healthy (strong), they bent the biopsy needle/drill.  But it was all done, all I had to do was to wait a week for the results.  The week came and went.  I called the hospital.  My results were sent to the wrong doctor. 

    Prescription 5 for the system: Make sure your files are accurate.

That day, Thursday, November 20, 2014, I had an early dinner of chicken and (organic mix) salad.  I went to my writers group at 6:30.  I had a decaf cappuccino.  Then it was off to sleep.

    But I woke up, with pain.  A very sudden cramping on the right middle / lower side of the abdomen.  Right where I had indicated an occasional light pain to begin with.  But certainly it was never so strong as to wake me up!  It was about midnight.  I tried to go back to sleep.  But it got much worse (maybe an 8 on a scale of 10 for pain).  By 2 a.m. the pain was sufficiently severe that I vomited.  The cramping continued.  I sat up and used a heating pad.  That helped a bit and I slept intermittently, shaking with chills. 

    The next morning was the Friday before Thanksgiving.  I stayed in bed with heating pad.   Had nothing but one piece of white toast with honey, water and decaf tea with honey.  The pain seemed to increase an hour or so after taking something to drink.  I had mild cramping in the morning, and my wife went to a meeting.  But by 2pm it quickly peaked into such pain as to induce vomiting.  No bowel movement.  Again I called my doctor.  She said it was probably food poisoning.  I should be better by the morning.  If not, I’d have to go to the ER and get a sonogram.  Oh, and by the way, the biopsy was negative: no cancer!

    The pain subsided but Saturday morning, I was still in bed with a heating pad.  At about 8.30 I had nothing but decaf tea with honey.  This was followed by mild and steady cramping and pain in lower abdomen.  Again, the pain increased after taking something to drink.  Went to hospital ER.  After a four hour wait at Suburban Hospital I got a preliminary examination.   Another 75 minutes and I saw a Doc.  He said it seemed like a kidney stone.  Needed to hydrate via an IV.  I said my doctor asked for a sonogram.  He ordered a CT scan.  I pointed out that I had 3 CT scans in the last 4 months.  He insisted on the CT scan.

    Prescription 6 for the system: Listen to the patient. 

    Prescription 7 for the system: Don’t go for the more expensive test just because it helps your cash flow.

    Hint 3 for the patient: Make sure you are listened to. 

    The CT Showed a large kidney stone – the size of a sugar cube.  (This would have been found with a sonogram.)  Clearly it was too big to pass.  Small shifts in its position could explain the pain.  But the CT also showed malformities in the upper kidney.  Soon I was experiencing excruciating pain in kidney again.  I needed IV pain killers and the doctors recommended I stay the night to monitor pain and get a 2nd opinion. 

    The next morning, Sunday, I felt fine.  No pain.  But now the new doc was suspicious of the malformities in the kidney.  He said they didn’t look like they had liquid in it - rather they appeared solid, like a tumor, not a cyst.  This could mean it was possibly malignant.  I needed a biopsy.

    This time I really I insisted – wasn’t there some other way to see if it was a cyst?  He said yes - a sonogram would give that information.  So I elected the sonogram.   It showed the problem to be cysts in my kidney.  I went home.  –

    Still to do?  Deal with a large kidney stone.  Not cancer.

Progress in America: (9) A Non-Cancer Diary? Part II

Trouble Brewing

        October 7, Doc Lisa learns that the radiologist checking my MRI diagnosed me with probable metastasized cancer.  Less than a blink later I got a phone call:  “You need a bone scan of your pelvic area.  We need to clear up this bone island thing.  Get it – as soon as you can.” 

    Still no mention to me, the patient, of cancer.  Just a slow escalation of tests since July. 

    I googled MRI, CT-scan, and bone scan.  Googling ‘bone scan,’ had a ‘chilling effect.’  The search results puts ‘cancer’ all over my screen.  Nary a discussion of bone scan didn’t start with cancer.  Alarmed and depressed, I scheduled the bone scan for the first available date:  October 13.

    Now I had to let the kids know; we had long standing agreements to share serious medical news.  I began with a call to my daughter.  She didn’t pick up.  That wasn’t unusual and when that happens I often have to call her wife, whom I shall call Helen.  Helen told me my daughter was unreachable – on her way to Ohio.  So I told Helen, a doctor at a major University, that I was ordered to have a bone scan.  She said that such scans are ordered when there is strong evidence of cancer. 

    Now it was out in the open.  I shared it with the other kids.  On the 13th, I went for the pelvic bone scan.  Surprisingly, the doctor had ordered more: a whole body bone scan.  I got concerned.  The next day, my good Doc Lisa called to say I needed a biopsy.  On the 15th I went to see her.  She said the tests indicated metastasized cancer in the spine, the ribs and the hips.  She wanted one more CT scan of the chest area, to be sure the lungs were clear: they were.  She recommended that I get the biopsy with one of two doctors, at one of two hospitals.  I made my choice.  The biopsy was schedule for the middle of the next week. 

    By the end of the week my wife was reeling from the news.  On Monday she felt ill and went to the family Doc.  They had a long, emotional meeting, not all about her own symptoms.  That night the doctor looked at my entire medical history.  She discovered a record of a CT scan done in 2007.  Then we had a different doctor; the scan had been done at a different lab.  The report indicated there might have been a bone island at that time.  

    In the morning, Doc Lisa called the radiologist and insisted that he reevaluate the current CT-scan and MRI’s by comparing them with the 2007 scan.  By Tuesday afternoon the radiologist reported that there appeared to be no change between the scans.  Doc Lisa called me.

    “Put off that biopsy.  Take some time off, and then go to your bone doctor, and to a rheumatologist.  Let’s get some 2nd opinions.”

    Prescription 1 for the system: All test results must be readily available for viewing by all my docs ‘in the system,’ with the summary reports.  Records must be kept in a manner that facilitates searches (i.e. electronically).

    Case closed?  No way!

(to be continued)

Progress in America: (9) A Non-Cancer Diary? Part I

    These next 4 entries constitute a diary of errors.  Doctor errors.  Patient errors.  System errors.  A fantastical tale of medical slippages.  And here’s the spoiler alert - it comes with a happy ending.  I apologize but this twisted tale requires multiple entries to the blog.  (To not embarrass any of the doctors central to this story, I refer to them by a fictitious first name only.) 

Hint of a Problem

    Last year, I spent a wild last weekend in June with 3 young grandchildren.  Roughhousing.  As I dared them with a most threatening growl, they jumped on me.  Lack of judgement?  Not advisable for an old man?  A man quite out of shape.  After arriving home, I found that I could not sit up in bed.  I had, what was most surely, a pulled abdominal muscle.

    Wife said, “Get thee to a doctor.  Check it out.” 

    Dutifully, I made an appointment at my bone doc, Jim.  I always see him for my self inflicted wounds.  But Jim was on vacation till after the fourth, and my wife was insistent.  I went to my good family doctor, Lisa. 

    There I complained of a pulled muscle.  I explained that my wife didn’t want me to wait till Monday to see a doctor.  So she checked my abdomen.  Immediately, she found the bad muscle.   But not finished she continued.  Feeling, pushing, prodding around my middle, she asked over and over “Does this hurt?”

     “No, nothing.”  “No.”  “Nope.” 

   But eventually she hit a spot.

   “Yes,” I responded.  She was pressing somewhere above my right hip. 

   “How much on a scale of 0-10 would you say this hurts?” asked the good Doctor Lisa.

   “Almost not at all.  I mean, maybe = .5.”

   “Have you felt it before?”

   “Yeah, but only when I either have to pee or crap and usually only at night.  That’s not why I came in.” 

    “You know, I think we need a CT scan.  Just to find out what this is.”

    This sounded absurd.  Had my good doctor Lisa joined the great medical-industrial complex?  I said something like ‘overkill’ and ‘can’t I just go to my orthopedic guy’ - but she insisted. 

    “Here’s an order for a CT scan.  Go to the lab downstairs.  Then come back up.  Let’s see what the scan says.”

    Down, scanned.  Back upstairs.  I knew I would be told nothing was wrong.

    After a wait, I got back into the doctor. 

    “Well, Joe, they found a fuzzy unclear patch in your lower right pelvic area.  They want an MRI to clarify what it is.”

    “But I just have a pulled muscle.”

    “I know, but you know these radiologists, they always ask for more tests.”

    “We have vacation plans.  We’re off to Iceland and Denmark in a few days.  I don’t want to start a series of tests now.”

    She seemed to give in, “OK - take the results to your orthopedic guy and ask him what he thinks and get back to me.  When is your appointment?” 

    Monday, the 7th, I went to see Dr.  Jim.  He felt around.  “Pulled muscle for sure.  What the hell did you do, Joe?”

    “The kids ...”

    “You have to let this heal.  Then start doing crunches.”   I got back to Dr. Lisa.

    “Did you show him the CT scan.”

    “No, he didn’t need to see it: he could tell it was a pulled muscle.”  Lisa said we’d talk about it after vacation when I had to come in for a full checkup.  That seemed weird: I didn’t think I needed a checkup till January or so.

    And with this, it was over.  Right?  Went on vacation.  Came back.  Settled into life.  Almost nothing to do.  Everything on track until the end of August.  Two phone calls interrupted my paradise. 

    First, out of the blue, I received a message from my urologist, Benny.  I needed to make an appointment for my occasional check up for my very non-aggressive prostate cancer.  First do a PSA test.  Then Doctor Lisa interrupted my pleasant trip to nowhere, “Need an appointment for my check up.”  (I still thought this should be in January.  Nope, the Doc wants to see you now!) 

    September 23rd I’m there but I do not really get a check up at all.  Rather, “Here’s a chit for an MRI, I want to check on that fuzzy spot.  It’s probably nothing but a bone island but it’s blurry.  We need to know what it is.”

    Not really understanding why, I scheduled the MRI for 10/6.  I would soon find out.  Of course, the MRI showed a similar bone island.  Doctor Lisa told me so.  What she didn’t say was that unknown to me, the radiologist who read the CT scan in July reported a possibility of metastasized material.  Also unknown to me, this was more shrilly seconded by the Doc who read the MRI.  She called it likely metastasized. 

    Thus things took off – rather quickly.  Already some problems were showing:  What should Dr.  Lisa have done?  What should I have done? 

    Lesson 1 for the doc: Keep the patient fully informed as to what is going on. 

    Hint 1 for the patient: Always ask for full information as to what is going on.  Make sure you get the full reports for the tests you have had, such as CT and MRI scans.
(to be continued)