• WhatNextEmails' Avatar

    Head & neck/throat cancer, how did you survive?

    Asked by WhatNextEmails on Monday, March 11, 2013

    Head & neck/throat cancer, how did you survive?

    We need your help. This month we are putting together a collection of articles for those newly diagnosed on what actions survivors took to beat their specific type of cancer. Please take a few minutes to share your experiences and advice for those newly diagnosed, and your posts might just get included in our articles. Feel free to share whatever comes to mind. Here are some more specific questions to help get the juices going: What kind of support did you have? Were there things you did that really made a difference? How do you go about finding your medical care team? Who made up your team? What resources did you find that were most helpful to you?

    4 Answers from the Community

    4 answers
    • krbrowndog's Avatar

      I had squamous cell cancer of the floor of mouth. I was referred to University of Michigan for second opinion and subsequent treatment. the treatment consisted of surgery only, They cut out 72 lympnodes from my neck, cut my tongue in half, removed all of my bottom teeth. I also had a feeding tube installed through my nose which terminated in my stomach and a trache' which allowed me to breath for 4 weeks while the swelling went down. This whole process of surgery and healing was traumatic to say the least. I had in home health care and a valiant wife to take care of me while I recoverd. with out my wife and the "care nurse" I don't think I could have done it by myself. Just the maintenance on the compressor and fluid pump that I had to rent to keep my trache' functioning at a high level was overwhelming while I was recovering
      Later in my recovery (appx. a year) I had implants (dental posts) put in place where my teeth use to be. When they healed I was ready to have impressions taken for snap on dentures and I was very happy with what I expected, which would be me eating a hamburger soon. Alas this was not to be, as the cancer came back. Again the hospital surgery center was saying I had to go under the knife again and this time it would be worse. I was sent to the radiation dept for their opinion and was surprized to hear them say that they could cure the cancer with radiation. so I given the choice of surgery or radiation, I chose radiation as I felt that could not go through another surgery that was worse than the first one I had. I had the radiaion for 33 sessions over 33 days. I ended up with a very sore mouth and tongue. That was a year ago and the cancer has not come back, however I am now dealing with chronic nerve pain from the radiation so I'm a patient at a pain clinic, and they say that it could take a year for the nerves to heal. all of this is better than having the cancer. I deal with the pain by using strong drugs and am happy with it for now. I can't eat regular meals, but I don't need a feeding tube, I can breath through my nose and mouse and I don't look to bd either. I hope this journey gives someone an idea of what it may take to get treatment for this hideous ailment.

      over 3 years ago
    • planogirl60's Avatar

      My cancer was located in the tonsil and spread to the lymph nodes. Both tonsils were removed but the lymph nodes were left. I was required to have a feeding tube put in BEFORE I started treatment. EXCELLENT decision by my rad Doctor. They chose not to put a port in and I wish they had. Twice I had to have a central line put in, special, because the nurses couldn't get a needle in my crappy veins. I had two rounds of chemo and 41 or 42 rad treatments. I had a great support team with my husband, Mom and a few select friends that got me to my rad treatments when my Mom couldn't. My Mom would come help with me during the day, usually with a friend, while my husband was at work. Then hubby would be there in the evening. My faith was a huge support as well, as I spent many a sleepless night sitting up on the couch because I could not lay down with all of the junk that was forming in the back of my throat from the rad treatments. It was at these times I spent a lot of time in prayer. It did bring me comfort in those long nights. It was a very tough road but 8 1/2 years later I am still cancer free. I am deligent in seeing both my ENT and Oncology doctors once a year, and have spaced those 2 appointments 6 months a part, so this way I am seeing a Doctor every 6 months. Up until last year I had a yearly PET scan. My ENT Doctor always checks my throat with a scope. This all gives me a great deal of peace of mind.

      One more thing I'd like to comment on. Right after my diagnosis of Stage IV Tonsil cancer I sat down and wrote letters to each of my kids and husband. I wrote down my wishes of what songs and poems and bible verses I wanted at my funeral. I wrote it all down, told my husband where he could find it, if it came to that and then left it behind for the most part. I had my ducks all in a row and didn't have to think about it through my treatment and could just think about getting well and not dying because I had taken care of the details. If that makes sense.

      over 3 years ago
    • JoeTEMT's Avatar

      I had squamous cell in my mouth nose and Sirius! Went to Sloan Kettering Cancer Hospital in New York City! They are unbelievably wonderful! I had wonderful surgeons! My cancer was gone first shotI pathology report came back clean! Had rad 30x as extra precaution! Months later had a PET AND CT SCAN. They were also cancer free! Had surgery j
      July 13th 2012, - Friday! But it was lucky for me! the doctors and their team of fellows visited me Everyday! Everybody at Sloan Kettering was so so nice! They must train their people after they hire them! The nurses were more like doctors they really know their stuff! Very very skilled! They made the experience not bad and I was a mess with a fourteen hour surgery, plastic surgery with free flap from my calf to my face and a piece of my tibia bone to put in my upper jaw they also took a skin graft from my thigh to cover my calf where they took the flap from! to Sloan got me through it!

      I had five weeks in a wonderful rehab that was also great in Wall NJ BY MERIDIAN they couldn't have been nicer either! Left there and just walked into my home with no help or aids of any type! No walker, wheelchair, special toilet seats etc... I had a feeding tube in Still because I had a trach and eating would be difficult be because of the surgery! Trach was out before I left the hospital and is now healed! Feeding tube is gone as of 4/25/2012. Lost all upper teeth except one molar and have my bottom front teeth! Because of the flap they don't t think they can put in false teeth! But I manage and eat enough to maintain my weight! See Sloans dental dept 4/30/2012 to take a look and see what they will do with the opening on the left side of my nose! They deal with all the prosthetics! Plastic surgery is out for the nose because they needs a lining from my mouth and they don't want to hurt my flap which took wonderfully with the microsurgery! My flap is still puffy so the plastic surgeon will do liposuction to balance it with my right cheek! Contact me f you want more info glad to talk about it! JoeTEMT,

      over 3 years ago
    • birmahp's Avatar

      Hello just wondering anyone have cancer of the saliva gland?

      about 3 years ago

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