Surviving Larynx Cancer - And a Misdiagnosis

by GregP_WN

Editor's Note: Our Guest Blog Post today is from WhatNexter "Patches0" she is a 6-year survivor of Larynx cancer, but almost didn't live through a misdiagnosis of COPD to be able to survive cancer. Her story of perseverance is inspiring.  

Patches

About 2010 I started having a lot of difficulty breathing. Worse than normal that is, as I had always been troubled with asthma. But at this time, the coughing and breathing became so bad I was hospitalized several times. My primary doctor kept trying to get me to go to a pulmonary doctor but I'd refused, saying it was just asthma. Finally about the third time I was hospitalized, several x rays, and MRI and scans and tests, they decided ( the hospitalists at the hospital) it was COPD and from there I was sent to Sunny View a local rehab hospital to learn how to live with COPD. My oxygen at that time ranged from 74 to 50 on the meter, barely breathing normal after weeks of learning how to live with COPD I was able to go home.

During the time I was given Prednisone about 80 to 125 mg' twice a day which caused me hallucinations and horrible problems. My family was unable to leave me home alone because of the hallucinations. I visualized and believed things like NYPD was coming and surrounding my house, helicopters landing on my roof, burglars breaking in and I totally thought our bathroom was out in the trees.

My pulmonary doctor was testing me for a lung transplant. He was not an informative or warm man so during this time I was very scared and really not sure what was happening to me. Or what the outcome would be. If I tried to talk to him he just dismissed me as if he were too important to talk to me. Finally, I broke down and confronted him about his behavior towards me ...it was then he said his plan was to have my lungs transplanted so I have a few more years to live. After research on that, I wasn't feeling too happy with his plans and the risks I would be taken.

Patches2

During the times I was hospitalized at the local hospital I was incubated 3 times and kept on life support for several days and once placed in an induced coma...given all types of tests...probes and treatments. None of which helped "cure" my problems.

That week once again I was rushed to the hospital with breathing problems. My family was beside themselves with me not improving, they called my primary doctor and spoke with him. He had tried contacting the pulmonary doctor a previous time to talk to him about my Prednisone reactions...and was dismissed but the pulmonary doctor. So this time my primary contacted an ENT doctor at the hospital and asked her to intervene and examine me.

The ENT did just that, and the hospital doctor kept objecting...but she proceeded anyway with family giving her permission. She used a scope down my nose and immediately withdrew it....saying "you do not have COPD you have a tumor" She then suggested I go to St. Peters' a larger "city hospital" and asked if I wanted to go. There was a fight to leave the local hospital as the doctors there did not approve of her interference. However I left following her suggestions, and that is when the word "cancer' came into my life.

Patches Family

I was met at the ER entrance by the Pulmonary specialist that would handle the breathing issues while at St Peter's...and taken right away to surgery by the ENT doctor who performed a trach surgery. I was also examined by an Oncologist and Radiologist.... who became my best friends,  I was in very bad shape barely alive at the time we all met!

While hospitalized and learning how to care for the trach, eat with it and talk with it, I was given treatment to become stronger, while the doctors together planned my treatment for larynx cancer. At that time the prognosis was not good, I was stage four and going down for the count with Larynx cancer. My body was so run down from the lack of treatment and they were not sure of the outcome. I had lost 90 pounds of body weight. During the beginning of my cancer experience, not one of these doctors had a negative word to say, even though you could see in their faces, they were unsure the treatment would do any good.

I had 8 weeks of radiation to the throat area daily, which meant an hour and a half drive daily. And I had three months of chemo ( Erbitux) weekly consisting of a 3-hour drip. Everyone during my treatment was so kind and helpful again never a discouraging word was said. There were MRI's and PET scans, all very scary procedures. And dragging oxygen around everywhere and of course, the trach made talking and eating difficult. I was told the oxygen would probably be with me the rest of my life, as well as the trach. I was constantly seen by all three of these doctors, they were encouraging and reassuring that this treatment would work.

Whenever I made improvement each doctor was so happy for me. They told me I am their miracle, but I would have never been where I am today without them or God. My Radiologist said I was cancer free and that if I stayed cancer free for 3 years more then likely it would not return! I don't know who was happier on that anniversary Me or the doctors!

Patches3

My oncologist released me last year, and although I am glad I no longer "need" him it was a sad day realizing I wouldn't be seeing him again. I still see the Radiologist who was the leader of my treatment, but after June we will go to once a year since I am 6 years cancer free. I see the ENT every 4 months because of all the damage to my throat that cancer caused, but it's workable. Oh yes, by the way, I no longer need oxygen, nor do I have a trach, and I can talk! I Eat very well, as I've gained about 40 of those lost pounds back.

I'm sure some events were left out here, but my brush with cancer has been an experience I'd rather not have gone through. But by going through it I have met some of the most wonderful doctors, therapists, techs, and nurses, support people, and pharmacists. And my family, it's brought so many people into my life that made a difference and they tell me that I made a difference in theirs, by giving them hope proving that no one should ever give up so watching me that proved to them "it's not over till it's really over."

There are side effects of the treatment, I try not give into them but truthfully, I'm glad I am alive to have side effects. I have hearing loss at times, and numbness of the feet ...cramps of the legs and sometimes lose my voice, my vision can be blurry, and oh yes, I developed a thyroid problem. Again, they're annoying but I'm still here.

And what happened to the first pulmonary doctor? Well after him misdiagnosing me for 2 years I have never seen him again, nor did he even try to follow up with where I disappeared to, I guess he thought I died? I fooled him!

Today I am 6 years Cancer free and very happy to talk to anyone about cancer to hopefully give some positive support to them. I feel it is so important to have a lot of positive around you while dealing with cancer. Every June I gladly go to St Peters ' celebration for survivors, I now have 6 tee shirts I am always happy to see all my medical people and they seem happy to see me. Before my suffering with cancer I always thought Cancer is a death sentence, well I did become somewhat insecure but I know today, cancer no longer has to be a death sentence, it can be beaten!

Do you have an inspiring story of victory over challenging cancer issues? Join us at WhatNext and let us help you share your story, you could inspire thousands!

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