Prepared by Library Advisor:
Tammy L Wigginton, M.S.,CCC/SLP
You have to advocate for yourself to get scans done. Having said that, that doesn’t mean you should be running to your doctor demanding to have scans.
I started my journey with laryngeal cancer in 1994. Doctors follow protocols, which have changed over the years. These protocols are decided on after years of observation and studies as to how best to treat a person with a certain type of disease.
After being active in various support groups, I observed that treatments
change and follow-up after treatment has changed. A lot depends on where you are treated and by whom. If you are treated at a large teaching hospital or research center, you may be getting more testing done than someone who is treated in a small rural hospital. That doesn’t mean that you aren’t getting the best treatment. But, if you are in an area where the doctor doesn’t see head and neck cancers often, you may have to advocate and ask more questions.
Again, it doesn’t mean that the treatment is wrong. Asking questions is
always right….there are no stupid questions!
Going back to the support groups….one of the big things that has been
discussed often was “what now”? You see a good thing that has come out of
all the protocols changing is that there are more long term survivors! Now
what? How are the professionals supposed to take care of us? They don’t know what to look for after a long time has passed. How could they? There weren’t many of us around years ago!
So, as time goes on things change. Protocols will change again. First it was
surgery and/or radiation,then surgery and definitely radiation, now many
have chemo and radiation, others have some surgery (biopsies) and/or neck
dissection then chemo and radiation. Today people are treated with any of
these combinations. Each person’s cancer is different which makes treatments different, too. So, the doctors follow the protocols as best they can for each individual. That is why it is so important to ask questions and….just because one person had one treatment and you had another doesn’t mean one is right or wrong. The important thing is that whichever treatment and after care you get is the best for you!
Be your own advocate and ask questions. Remember that protocols
change. After care is an ongoing process and the doctors are learning what
and what not to do.in a way, we are teaching our doctors by being long time
survivors. We are all individuals and what is good for one may not be good
I’ll end this by saying that you should advocate, ask questions and….be
thankful to be a (in my case, long term) survivor!
Rita in NJ
Treated in NYC/NJ
Fine Needle Aspiration (FNA)
A procedure used to obtain cells or fluid from tissue using a needle with an empty syringe to be examined by a pathologist.
Diagnostic Laparoscopy (DL)
A procedure which allows the physician to examine and biopsy suspicious areas in the upper airway and secondary structures. This procedure requires general anesthesia and can usually be done on an outpatient basis.
A procedure usually performed by a gastroenterologist (GI or intestinal doctor), which involves passing an endoscope, a long, flexible black tube with a light and video camera on one end, through the mouth to examine the esophagus, stomach and the first part of the small intestine called the duodenum
Fiber optic Laparoscopy
The use of a flexible scope with a camera attached to examine the nasal, oral, pharyngeal and laryngeal passages and structures
a state-of-the-art technique that provides a magnified, view of the vocal cords in action. It enables physicians to make an accurate diagnosis of conditions and diseases of the vocal cords.
Computerized Axial Tomography uses special x-ray equipment to generate three dimensional images of the body which results in greater clarity than ordinary x-rays.
Magnetic Resonance imaging uses radio waves and a strong magnetic field rather than x-ray to provide detailed images of internal organs and tissue. It is important to remove metal objects prior to the procedure and to inform the technicians if you have tattoos or metal implants in your body.
How Magnetic Resonance Imaging works explained simply.
Positron Emission Tomography Scan is a diagnostic examination that involves obtaining images based on detection of radiation from the emission of positrons.
Note: Many new devices combine multiple units into one machine. For example you may find a CT/PET scanner as a single system.
The chest x-ray is the most commonly performed diagnostic x-ray examination. An x-ray is a painless test that helps your diagnose and treat a number of medical conditions. A chest x-ray makes images of the heart, lungs, airway, blood vessels and the bones of the spine and chest. www.radiologyinfo.org
An x-ray procedure used to examine the esophagus and the upper portion of the stomach. The patient is asked to swallow barium which is a chalky tasting material that is visible to x-rays. As the patient swallows the barium suspension, it coats the esphagus with a thin layer of the barium. This enables the hollow structure to be imaged. The patient is asked to swallow the Barium a number of times while standing in a variety of different positions. This test is particularly good at detecting narrowing in the esophagus, fistulas, hiatal hernias and reflux. www.emedicinehealth.com/barium_swallow/article_em.htm
Fiberoptic Endoscopic Evaluation of Swallowing and Sensory Testing (FEEST):
FEEST is a test in which a flexible scope is passed through the nose into the larynx to assess swallowing ability and laryngeal sensation.
Videofluoroscopic Swallow Study (VFSS)
A video fluoroscopic swallow study (VFSS) is procedure performed by a radiologist and a speech pathologist to assess swallowing function. During the procedure the patient swallows a variety of liquids and foods mixed with barium, as a radiologist takes video X-rays of the mouth and throat. These images show how food passes from the mouth through the throat and into the esophagus. During the test, a speech pathologist may ask patients to alter their head position, such as tucking the chin, or to try various other techniques to improve swallowing.
PULMONARY FUNCTION TESTING
I’ve had a few of these tests done in at least three different medical centers in their pulmonary labs. Each time I’ve had to “coach” the technician to use an infant size CPR mask over my stoma for a good seal. Truly, they had never done this test on a laryngectomee before. Each one had no clue how it was possible when I explained we could not plug the stoma to do the test. Too funny! I just expect this as a normal “test” situation now.
Jack wrote this fairly accurate description: <You do a series of deep breathes and exhalations that vary in some ways (breath normal, inhale deep, blow all the air out, etc). Then they may repeat the same breathing exercises after you have been given various inhalers.> They have an electronic meter that measures and records the whole experience. Too bad they left out the permanent stoma patient info.
Class of 10/78
Had a Pulmonary Function test this week. After reading about some of your
issues with masks etc., I was a bit concerned as I went to a hospital in a
mid sized city in Northern Ontario. I contacted them about a week before
my appointment to make sure they knew about my condition and they told me ‘No Issues’. When I got there the technician had a mask called a Seal
Easy mask, https://www.elifeguard.com/seal-easy-mask . It shows a price of
about $7.00. For those worried about Emergency Responders being able to
administer oxygen, this may be a good investment to have on hand.
All in all, quite a positive experience. My faith in our local health care
Dave Aitchison – April, 2012
Possible equipment help for testing refer to the Possible Problems Section.
There are many videos on YouTube that describe Pulmonary Function testing. The following link is a beginning that will get you to the videos.