35. Difficulty swallowing food and sometimes, liquid. Joint/bone pain. Occasional itching in chest.

Dear “Silent Sufferer”

Personally, I haven’t been getting the run-around, but I know many that have.  A close friend went to the VA Hospital back in January 2018.  Ultimately he was diagnosed with Pancreatic Cancer, but it took a month for that to be determined.  Seems the VA hospital here in Virginia conducted a biopsy and still couldn’t confirm that it was cancer after a week.  So it was sent off to Houston, TX.  It was another 3 weeks before Houston confirmed that indeed my friend had Pancreatic Cancer.  Even then, an aggressive chemo treatment was NOT given.    Meanwhile, a month was wasted.  People in pain shouldn’t wait a month for the results of a biopsy.  And to make matters worse, my friend “liked his VA doctor” and waited, and waited and waited for the doctor to tell him what to do.  My husband and I urged, begged, & pleaded with him to go to Johns-Hopkins and get a “real” SECOND OPINION, but he said, “Maybe later!”  Well, let me say, “sooner is always better than later” to have a SECOND OPINION.  I don’t know what kind of insurance you have, but when “someone” finally gives you a “diagnosis”, you would be wise to get a SECOND OPINION. 

Moreover, many here on the EC link have been “written off” by their GPs when symptoms of cancer were suspected.  Even your difficulty swallowing and cough should not be ignored.  Finally, often when an upper endoscopy has been performed presence of Esophageal cancer is found.  Now please understand that I am not suggesting that your symptoms “fit the EC” category, but one never knows until they have been thoroughly tested as to the real problem.

So for anyone reading this letter, and your doctor has not referred you to a Gastroenterologist for a basic endoscopy, you should demand one!  Often omeprazole is prescribed when one complains of acid reflux and heartburn.   In fact, NEXIUM is often prescribed.  It can actually “mask” the symptoms of EC.  Sadly, many have presented here with Stage IV Esophageal Cancer from the onset.  We fellow cancer patients are saddened and incensed every time we read of someone that is in effect having to “convince” the doctor that “something is wrong”.  You are the one with the pain, and having to quit your job is just awful.

So while I haven’t personally been given the “silent treatment”, sad to say your story is all too familiar.  The most I can do is search the web and look up some of the symptoms you describe.  Maybe they may be helpful and maybe I’m going down the wrong “rabbit trail.” 

So it seems that your scheduled nerve conduction study and consult with a pain management specialist will finally start to put you on a pathway to actually determining exactly what is causing your pain.  So the most I can do is say “keep up the persistent demands” that you be given adequate testing so that a diagnosis can be reached.  Then from that point, ideally you need to have a second opinion.  Then that raises another question.  I’m not prying and you don’t need to answer, but I sure hope you have some good insurance even though you say you’ve had to quit your job. 

You say you’re “going to get scoped in July.”  Will this be an endoscopy with a Gastroenterologist to try to determine the “swallowing difficulty & cough problem? I would certainly “cover that base.”  If I’m reading your letter correctly, your February trip to the doctors resulted in discovering that you had a “Cervical herniation at c-4-5 with nerve root impingement.”  So for the time being, I just “went down that road.”   

I know you only wanted to know if others on this link have had similar “delay tactics” by their doctors, and have not been taken seriously.  I have read many stories here where doctors have done just that.  So I don’t know who else may relate to your problem.  I just hope that you will continue to be persistent.  I’m sorry to hear of your plight, but sorry to say also I don’t think you are all alone. 

Hang in there—don’t suffer “in silence”.  Someone must be “made to listen” and to address your concerns.

Sincerely,

Loretta

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1.   https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-researchers-demonstrate-value-of-second-opinions/

• ____By Elizabeth Zimmermann

Mayo Clinic researchers demonstrate value of second opinions

April 4, 2017

ROCHESTER, Minn. — Many patients come to Mayo Clinic for a second opinion or diagnosis confirmation before treatment for a complex condition. In a new study, Mayo Clinic reports that as many as 88 percent of those patients go home with a new or refined diagnosis – changing their care plan and potentially their lives.  Conversely, only 12 percent receive confirmation that the original diagnosis was complete and correct.

These findings were published online today in the Journal of Evaluation in Clinical Practice. The research team was led by James Naessens, Sc.D., a health care policy researcher at Mayo Clinic.

Why get a second opinion

When people are sick, they look to their doctor to find solutions. However, physicians don’t always have the answers. Often, because of the unusual nature of the symptoms or complexity of the condition, the physician will recommend a second opinion. Other times, the patient will ask for one.

This second opinion could lead to quicker access to lifesaving treatment or stopping unnecessary treatments. And a second opinion may reduce stress in a patient’s extended family, when they learn the new diagnosis does not carry dire genetic implications. These scenarios can result from diagnostic error.

Odds are good the diagnosis will be adjusted

To determine the extent of diagnostic error, the researchers examined the records of 286 patients  referred from primary care providers to Mayo Clinic’s General Internal Medicine Division in Rochester over a two-year period (Jan. 1, 2009, to Dec. 31, 2010). This group of referrals was previously studied for a related topic. It consisted of all patients referred by nurse practitioners and physician assistants, along with an equal number of randomly selected physician referrals.

The team compared the referring diagnosis to the final diagnosis to determine the level of consistency between the two and, thus, the level of diagnostic error. In only 12 percent of the cases was the diagnosis confirmed.

In 21 percent of the cases, the diagnosis was completely changed; and 66 percent of patients received a refined or redefined diagnosis. There were no significant differences between provider types.

“Effective and efficient treatment depends on the right diagnosis,” says Dr. Naessens. “Knowing that more than 1 out of every 5 referral patients may be completely [and] incorrectly diagnosed is troubling ─ not only because of the safety risks for these patients prior to correct diagnosis, but also because of the patients we assume are not being referred at all.”

Risks of cost containment

To manage costs in a health care environment with ever-increasing costs, health insurers often limit access to care outside their network, effectively limiting referrals. Further, primary care providers may be more confident in their diagnostic expertise than warranted in a particular case, or patients may lack the knowledge or assertiveness to request a referral.

“This may prevent identification of diagnostic error, and could lead treatment delays, complications leading to more costly treatments, or even patient harm or death,” says Dr. Naessens. “We want to encourage second opinions when the provider is not certain.”

The National Academy of Medicine cites diagnostic error as an important component in determining the quality of health care in its new publication, Improving Diagnosis in Health Care:

Despite the pervasiveness of diagnostic errors and the risk for serious patient harm, diagnostic errors have been largely unappreciated within the quality and patient safety movements in health care. Without a dedicated focus on improving diagnosis, these errors will likely worsen as the delivery of health care and the diagnostic process continue to increase in complexity.

“Referrals to advanced specialty care for undifferentiated problems are an essential component of patient care,” Dr. Naessens says. “Without adequate resources to handle undifferentiated diagnoses, a potential unintended consequence is misdiagnosis, resulting in treatment delays and complications, and leading to more costly treatments.”

The researchers identified costs associated with second opinions, and Dr. Naessens notes, “Total diagnostic costs for cases resulting in a different final diagnosis were significantly higher than those for confirmed or refined diagnoses, but the alternative could be deadly.”

He says that he and his team are pleased by the National Academy of Medicine’s call for dedicated federal funding for improved diagnostic processes and error reduction. They also plan further research on diagnostic errors and hope to identify ways to improve the process.

Dr. Naessens leads quality and safety research initiatives within the Office of Health Care Practice and Policy in the Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery. He is also the scientific director for the Florida team within the center…”

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2.     https://www.spine-health.com/video/cervical-herniated-disc-video

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3.     https://www.spine-health.com/conditions/spine-anatomy/cervical-pain-joint-degeneration

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4.     https://www.spine-health.com/conditions/herniated-disc/diagnostic-tests-a-cervical-herniated-disc

HERNIATED DISC TOPICS

• Herniated Disc

o    What is a Herniated Disc?

o    Lumbar Herniated Disc

o    Cervical Herniated Disc

o    Thoracic Herniated Disc

o    Herniated Disc Treatment

o    En Español

o    Herniated Disc Dr. Advice

o    Herniated Disc Images

o    Herniated Disc Videos

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5.     https://www.spine-health.com/conditions/herniated-disc/diagnostic-tests-a-cervical-herniated-disc

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6.     https://www.spine-health.com/conditions/spinal-tumor

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7.     http://news.cancerconnect.com/types-of-cancer/esophageal-cancer/esophageal-cancer-overview/

 (Loretta’s note:  Since you wrote to the Esophageal Cancer forum here, just wanted to include a reference to Esophageal Cancer, not that your symptoms point strongly to that diagnosis.  However, when you say difficulty swallowing and a cough, those are also symptomatic of EC although usually it is acid reflux and heartburn that are culprits.  So far be it from me to suggest that you have Esophageal Cancer, just thought I would include this link.  I really have no idea as to what your problem is, quite naturally.  But I hope you find out “sooner rather than later.”)

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