Diagnosed with 5 mm tumor in pyriform sinus
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, thank-you. We all need each other.
In 2020 cancer in my Pyriform Sinus (a large tumor) and in the lymph nodes in my neck were discovered, but first, I had the terrible sore throat and earache that you described. I learned that this is the first sign of throat cancer. The lymph nodes in my neck were hard and about the size of ping-pong balls and then smaller. I told my PCP that I knew I had cancer, but she wanted me to wait (I don't know why, but this was a bad call).
As it turned out, due to COVID, the hospital was not able to see me in March, once my PCP referred me, and I had to wait until June to begin treatment (waiting 6 months after I knew). I then got the feeding tube and began chemo and radiation at the same time. The treatment was very difficult - unable to swallow or speak, as you mentioned, and the feeding tube was no fun. The side effects of these treatments did not dissipate until the following June, 2021, however I still have the sore throat, difficulty with swallowing, have to clear my throat every few seconds if I am talking, and very little saliva in my mouth.
Then, this past July, a PET scan showed that the lymph node cancer came back and had metastasized to both lungs. I am now having Immunotherapy, IV supplement sessions, a supplement called Valasta, and I am seeing someone who had a device called Firefly. It is even more serious now, but I am not willing to again go through the side effects of chemo and radiation, which were debilitating. I want to at least be able to enjoy my life while doing these treatments, and I hope and pray that the treatments put it in remission.
@kecm, wow, you have been through so much, and yet you soldiered on. I am so sorry that your cancer returned, and hope your treatment puts it into remission. You happened to need treatment right when the Covid thing began. That must have been a nightmare for you. You have really been through the mill. Please keep updating how things are going. I will be thinking of you. Hopefully, you are not in a great deal of pain. Please know that I am praying for you @kecm. Please keep me in your prayers if you will be so kind. It means so much. In fact, it means everything. May God be with you.
Thank you for sharing your story with us, you have been through so much! I am so sorry you have to get back into the fight. Just like @thomason I also hope and am praying you will conquer this disease with Immunotherapy/Valasta, because chemo/radiation side effects are devastating. Please, keep us updated!
Thank you. I will keep you in my prayers as well. Throat cancer of any kind is truly a nightmare.
I am a 10 year survivor with metastatic SCC originating from my ear. As a veterinarian I am always researching my cancer and possible new treatments. I firmly believe we should utilize the time tested traditional treatments with supportive scientific studies, but can then supplement our treatment with complementary therapies. I also cannot stress enough the value of a big referral center/teaching hospital to guide your treatment. I drive 10 hours from Ohio to Rochester MN for my care at Mayo Clinic. I firmly believe I would not have survived if I had stuck with local doctors. I also followed my surgery and radiation with Immune Augmentation at a clinic in the Bahamas. A few books that I have valued...... How Not to be My Patient by E. Creagan MD, a palliative care doctor from Mayo, Radical Remission by Kelly Turner, The Rebel's Apothecary by Jenny Sansouci (sp?). I would certainly ask about Proton Beam radiation as that saves damage to surrounding tissues, but it is not widely available....referral canters only. Your mass is small and I would stay positive for a good end result. Good luck to you.
Thank you for the book suggestions, all the helpful pointers and your encouragement and positivity. It is invaluable to receive support from others that have gone through treatment and have researched options thoroughly already. May I ask what symptoms you had initially, how the ear SCC was diagnosed and the size of the mass? I am so sorry that your husband suffers from cancer also. I hope you both are doing well and I wish you all the best!
My symptom was a pain associated with my ear, which became persistent and severe and radiated out from my ear. Prior to that for many months I had an itch in my ear which I ignored. After 3 ENT's and an MRI, I requested a referral to the University of Michigan hospital as it is only an hour away. There they used a videoscope in the ear canal to obtain a biopsy, as a small visible lesion had developed. It was invaded deeply into the mastoid part of the temporal bone of the skull so was an irregular centimeter in size. Finally a CT with contrast at UM delineated the extent of the tumor. Because they could not schedule my surgery for 8 weeks, I consulted with Mayo where I had an appointment in a week and they did the surgery 5 days later. After surgery for 4 different metastases, I am currently tumor free on an Immunotherapy infusion of Cemiplimab every 6 weeks. Mayo Clinic is an amazing healthcare facility. Thank you for the well wishes.
Husband sees Medical Oncologist and Radiation Oncologist tomorrow Aug. 4.
Pyriform Sinus Squamous Cell cancer was found. Metastasis to lymph nodes. ENT who did biopsy and mass debulking says it Stage 4.
Anyone have this? Care to share your experience and treatment?
Welcome, @preyn, you've come to the right place to connect with other members who have experience with pyriform sinus carcinoma and hypopharyngeal cancer, like @thomason @tiatia11 @anonymous217382 and others.
It sounds like tomorrow is a consultation with your cancer care team to discuss treatment options and plan forward. Is that right?
Have you started a list of questions?