Patient Comments: Larynx Cancer - Describe Your Experience

Question:Please describe your experience with larynx cancer.

Comment from: silentangel, 65-74 Female (Patient) Published: February 16

I had for over a year been trying to get a Dr. to tell me why I got so short of breath when I carried grocery bags in from the car. I couldn't walk across a parking lot because I would start wheezing. My primary care physician found nothing, she did a chest X-ray which was clear. I had an episode of tachycardia that sent me to the ER, the cardiologist ran a gamit of tests, with pictures and stress test(by medication because I have arthritis in my knees and can't do the treadmill)and just gave me meds to slow my heart rate and lower my blood pressure. I had used a CPAP machine for 10 years for sleep apnea and on morning I woke up and removed the CPAP mask and began coughing and could not stop. Shortly became hard to get a breath so was taken by family to the ER. There I was treated for asthma, which I have never had, and it didn't help. They sent me for a CT scan of my neck and immediately called in the ENT on call. He scoped my throat and told me I had cancer of the larynx and sent me straight to the OR to have tracheotomy as my airway was only about 3mm. He referred me to the Head and Neck Cancer Center in another city and two weeks later I had my laryngectomy. Other than the breathing difficulty I had no other symptoms, but am very disillusioned with the medical profession, that I could see several different specialists in a year's time and no-one ever checked my throat. The type of cancer I had was very slow growing so had been there for at least that years' time. Fortunately I did not require chemo or radiation and now am speaking with a TEP. I only smoked for about 2 yrs, more than 35 years ago, but lived with a heavy smoker for 16 years before that. Was told that the type of cancer I had was probably not caused by smoking, but they don't know what did cause it.

Comment from: GARY, 55-64 Male (Patient) Published: October 07

I am a 42 year old male who had cancer of the larynx diagnosed in February of 1995. I had my entire vocal chords removed and 6 weeks of radiation. I had a stoma from which I breath from. It is now September, 2009 and I am still here. I was a very heavy smoker and drinker.

Comment from: Patti, 45-54 Male (Caregiver) Published: August 24

Two months ago, my boyfriend was diagnosed with squamous cell carcinoma (cancer in his voice box). He has never smoked, doesn't drink other than a beer, and doesn't have HPV. It is a mystery to the physicians. He was misdiagnosed by his ENT with stage 1, and when he went to his oncologist to start treatment, he was told it was stage 3. He has a full four days of chemo through a port every month for three months. He also has radiation therapy five times a week for 15 minutes. From the stories I read, this sounds like an alarming amount. He is ready to go nuts from the side effects, although he is diligent with his oral cleaning and rest.

Comment from: 45-54 Female (Caregiver) Published: May 11

4 years ago I sent my boyfriend to and allergist because his voice was getting very rough and he had a "itch" cough that wouldn't go away. I couldn't stand him suffering if it wasn't necessary. They told us he had cancer of the larynx, it took my breath away. CANCER! We didn't know what to do. The doctors referred him to a cancer doctor, and another and another. It seemed hopeless, but we finally found one that worked. They told him that we caught it early so it looked good. He went in for radiation for 6 weeks. They said it should be gone, it wasn't. So they had him do chemo then 7 more weeks of radiation. It got rid of it alright. He finally got so fried that he coughed up his vocal cords little by little. It was the most painful thing for him and for me. I couldn't do anything to help. He can't even eat now, there's nothing to digest the food. They didn't take us seriously, until he was in the hospital with pneumonia because food and drinks went in his lungs so bad he almost died. He is now on a feeding tube, he can't drink pop, enjoy food or try his son's fresh baked cookies. He pumps in ensure 2 times a day for the rest of his life. He can't even take medicine with out grinding it up and then putting it in his "food", or swallow his own spit! So if you know someone who has been diagnosed with this please tell them how important it is to not smoke, drink, and try to take it slow. Research you doctors and please be involved in they're treatment, patients get lost and tossed to the side so easily. I was there every visit for the first 6 months then he wouldn't let me. I know he felt smothered, but it all went down hill after that.

Comment from: 43femalewithCANCER, 35-44 Female (Patient) Published: October 27

I was diagnosed with cancer of the larynx on Sept. 18, 2008 after seeing my family doctor in June, July, and August. My family doctor ran a throat culture and determined that I had a bacterial infection on the throat, and after several rounds of antibiotics, he told me that it was just a bacterial infection, and it would go away on its own. He said I wouldn't have any more problems with it. On the last visit to my family doctor, with severe pain in my throat, he advised me that he couldn't find anything and recommended me to an ENT (ear, nose, throat doctor). On Sept. 11, 2008, I had an appointment with my ENT and he sent me in to get an immediate biopsy of my throat. After the biopsy, he informed my fiancé, and my mother that I do indeed have cancer of the larynx. I am in stage 4 of the cancer, and I have started with the radiation and chemotherapy. I have radiation five days a week now and chemo one day a week. I have also developed thrush in my mouth, tonsils, and tongue and cheeks ... and I am in severe pain. I am uncertain as to how long I have had cancer as I was diagnosed with "just" a bacterial infection after seeing my family doctor for months. I am on my third week of radiation and chemotherapy ... and I am not sure how much longer I will be undergoing both. It terrifies me to know that if I would have been diagnosed sooner, I would more than likely be getting better sooner. Also, I am a 43-year-old female with no children, and at times I feel like a walking pharmacy with all the medicines that I am on.



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