Have to wait until Nov 29th to see my ENT. Gastro found the tumor. Seems like the only growths in this area are carcinomas. Has anyone beat pyriform sinus cancer and how?
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@tiatia11, welcome. I'm tagging @thomason who has experience with pyriform sinus cancer to bring her into this discussion.
I can imagine that you are very worried while waiting to see the ENT. It's hard not to leap to thinking it is cancer. But if I understand you correctly, cancer has not yet been confirmed. Right? How was the tumor discovered? What tests or imaging have you had? Have you had a biopsy done?
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Thanks so much for your response. My gastro found it during an upper endoscopy but did not biopsy it. I do have a photo of it, it looks like a SSC. After research I found out that there are virtually no known cases of benign tumors in the pyriform sinus.
@tiatia11, after many false diagnoses (even after a CT scan and many scopes) the third-opinion ENT found the tumor on the Pyriform Sinus. In 2018 I underwent 35 radiation treatments. I opted out of Chemo as the Oncologist admitted it would increase tumor-cancer eradication by about 1%. It took a good year, but finally got my voice back, with the ability to eat and drink again. Before you do the radiation, check out "Red-Light" therapy (RLT). I waved that wand around my throat area every day before the radiation treatments…Did it work? I believe it did. There are many effects from the radiation which RLT helped alleviate. I am curious, did you have a difficult journey getting this diagnosis? You are in my thoughts.
How are you doing? I am hoping you are well! Thank you so much for your reply and your recommendation to use RLT during radiation.
I started to feel a lump in my throat about two months ago. Have a history of severe GERD, esophageal stricture, irregular z line, hiatal hernia so I went to my gastro, who found it via scope. He stressed that my lump sensation has nothing to do with the tumor, that it is so small, he isn't concerned and the ENT appointment for 11/29 does not need to be moved up. I even asked for a CT scan while waiting and he said if indicated the ENT can order it. I think my gastro has no idea what we are dealing with here. Tried to find another ENT, but he was booked until the beginning of February. Do you think it could cause the lump sensation at 5 mm?
May I ask you a few more questions? Are you female? I am currently in Illinois, if you are willing to share, where do you live? What were your symptoms, how long from first symptoms to receiving your actual diagnosis, what was your diagnosis, SCC?, HPV related or non HPV? What was the size of the tumor at that time? Are you on a certain diet? Keto or vegan, etc? Have you made any other lifestyle changes since receiving treatment? Are you in contact with other pyriform sinus cancer patients? I found only one person in a Facebook group that had SSC in this particular location.
I apologize for the many questions, but I am just so thankful to have found a fellow warrior. Thank you so very much for keeping me in your thoughts.
@tiatia11, sounds like you have a great Gastroenterologist. I had a Gastric Endoscopy performed to try and figure out my increasing throat/ear pain. This was in the beginning of many procedures which did not result in the discovery of the tumor. It all began with a very mild left-sided sore throat which slowly got worse. Then the ear on that side (left side) began to ache. Oddly, while at the dentist for a cleaning–a full year before diagnosis–the hygienist said she noticed a sore in my throat. She said that the dentist would look at it when she was finished cleaning. He came in and said he did not see a sore. Looking back, if it had been diagnosed at that early point, a laser may have been able to remove it. Oh well, we cannot go back, can we?! So, as the sore throat got worse, my family doctor said it was allergies, yet the pain was getting so bad it was hard to swallow liquids or food without wincing. After having the non-productive Gastric Endoscopy, the first ENT did a Nasal Endoscopy. She quickly pulled the scope out claiming I had allergies and arthritis! Here I am. a healthy weight and height, never having any arthritis type pains. What the heck? To try and make a long story short, within a one-year period, I went to the emergency room, several different doctors, 3 ENT's, etc. At that point, I could barely swallow. I went back to the first ENT and told her I could barely swallow. She scheduled an operation to remove my tonsils. I have no tonsils as they had atrophied away due to age! The family doctor finally told me to get a CT scan. That came back with results stating I had "Eagles Syndrome." This is where the Styloid Bones (either side of head) are elongated and grow into nerves. That "little" voice most of us have was speaking loudly to my soul. It was saying to me that I needed yet another opinion, for I did not believe the Eagles Syndrome diagnosis, or the "tonsils." The family doctor was getting very frustrated. She told me to make an appointment with a "university doctor." Following her advice, the Indiana University ENT scoped me just like all the other ENTs had, yet right away saw the white patch on my Pyriform Sinus. He immediately scheduled a biopsy. The rest is history. When I saw the illuminated tumor on the screen at the Oncologist appointment, it was blatantly visible. I will never understand how it was missed, even after a CT scan. Prayers do work and listening to that wonderful still voice from our creator is what kept me going for more tests. If I had listened after the CT scan and decided to live with the pain, I would be long dead. It was non-HPV, but I read that HPV is more curable. If you find out after biopsy that it is cancer, it sounds very mild and curable. There are many Pyriform Sinus cancer survivors in any of the cancer support online groups, such as: https://csn.cancer.org/, and: https://www.inspire.com/. Although Pyriform Sinus Cancer is difficult to find, look for "Head and neck Cancer" support groups. Hopefully, it is just a polyp. The attached shows my tumor was about 2cc. If you have any questions, feel free to ask. I am a 63-year-old female, do not drink alcohol or smoke and eat meat sparingly. Please keep everyone updated. Everyone here really does care! P.S. You must click image to observe.
Thank you for you comments. Could you share what type of RLT device you used? Hubby is starting treatment to day of 35 rounds of radiation to the neck for SCC on his right tonsil.
What a story you have…I am so glad and thankful you are here to tell it! Thank you for your encouragement and help. I love how you speak about the wonderful still voice from our Creator, so well said. I will probably be back for more questions, but definitely will keep you posted as I find out more about my situation and my treatment. I am sure I have a long road ahead of me. Thanks again for answering my countless questions so patiently! Wish you the very best and God's rich blessings!
@sandralea58, here is a link to the Neutrogena IP22 Wand: https://www.amazon.com/neutrogena-clearing-therapy-treatment-solution/dp/b0719sv6vb.
The site wants way too much money for the product, but there are many helpful reviews. The Neutrogena Wand is no longer manufactured. The wand below is sold at Walmart so you can hopefully get it, or one like it right away.
Every single day before the radiation session, I waved the wand around the inside of my throat and the outside area of my neck further down. Making time to do this is difficult when you are all stressed out, yet I made sure to find that ten-minute window–even if it had to be brought along in the car. Did it help with after-effects? I honestly do not know…the ability to eat, drink and speak is very humbling. You and your husband are in my thoughts. God is with you.
@tiatia11, we are all in this together, really. Please do not get anxious about having to wait a few weeks to get an appointment. After the biopsy was done, I attempted to "cure" the cancer my way! Haha to that! Yes, I tried the baking soda and molasses "treatment." To this day the thought of drinking that mixture makes my toes curl. It may have made the toes curl, but it did not faze the tumor. After trying a bunch of stupid things, about 3 months passed. The ENT nurse told me that if I was going to do the radiation, to DO IT. Finally, I gave in and began the life-saving treatment. You are in many people's thoughts and prayers. Do not be afraid.
I always prefer the natural non invasive methods, which is why I opted for successful home births, fewer vaccinations, etc. To be honest I have come across the baking soda and various other self healing "experiments". Thank you for the reminder that most of these are just that. Can't thank enough for prayers, support and helpful information!
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