Wanna chat?
Hello - I recently had surgery removing oral cancer from my upper jaw. I still have a hard time understanding “why” as I’ve never smoked or used tobacco. I had a hard time for a while coming to understand this. I just finished radiation a few weeks ago. 30 sessions on my mouth and neck. The other side the surgeon removed my lymph nodes. I am on my second obturator so far - just wondering if anyone is on here willing/wanting to chat about life afterwards - thanks
Comments
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Hello, Eric1969, and welcome to the CSN H&N discussion forum.
Well, Eric, sometimes there is no specific reason someone gets H&N cancer or any other cancer for that matter.
In years past there were many on here who never smoked or drank but still got H&N cancer no one knows the reason. I think cancer can just start with a bad cell division in the body, here is a video that explains it…
Cancer, How Cancer Starts, How Cancer Spreads, Where and Why, Animation.In recent years very few people smoke anymore but there is a large uptick in H&N cancer due to the HPV virus. There is a plus and a minus diagnosis in H&N cancer. Did any of your doctors mention your case being HPV Plus or minus?
Here is a Johns Hopkins site explaining it…
HPV and Head & Neck Cancer FAQsYou went through some heavy-duty treatment like the rest of us but the main thing is you made it through. I have not had to deal with an obturator but there were several people in our local cancer support group at the campus and folks on this forum that had them. I am aware it is something else to maintain and I believe you need a good-fitting obturator that is comfortable and does what it should.
Here is a search of this discussion board of past and present discussions of obturators, you can possibly find some good information there by looking through the discussion threads.
Please note there are 10 threads on the page and at the bottom you can click on more and there are many more.
I would also recommend you check out the Superthread at the top of the page there is loads of information in there with links and you will find it helpful.
I hope this helped in some way and we can chat more if you want and feel free to make yourself at home here.
Our Motto Here Is…NEGU (Never Ever Give Up)
Wishing You The Best
Take Care, God Bless
Russ
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Hello Eric. Glad you got through the tough surgery and treatments. I hope you're doing well. In 2022 I was diagnosed with H&N cancer in my right tonsil and some lymph nodes and it turned out to be HPV that caused it. I was fortunate to have several options for treatment, including a trial that cut radiation and chemo treatments in half. It was still rough though. The cisplatin put me in the hospital with very low sodium for 10 days. Now, so far so good, but I do have to have another node neat my collar bone biopsied next week. Hopefully if there's something there they can just remove it and it's not anywhere else. This has been the hardest part for me, all the following up and worrying about things that might be suspicious. I hope you don't have too much of that. Wishing you all the best and good health!
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hello and thanks for emailing me. I hope everything works out for you next week. That’s something that’s always dwelling on my mind…my next scans and the whole “what if”… thank you for the kind words too. We just never know what we can accomplish until we go through it. One thing I’m kind of dealing with now is my appearance has changed due to my weight loss, loss of facial hair and mouth obturator. Friends don’t recognize me at first which is hard. I’ve had a friend walk by me not even realizing it was me
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EBV (Epstein-Barr virus) is another cancer culprit! I have a very uneducated theory that COVID will be linked to an increase in HNC…I ran my entire theory by my radiation oncologist (my dr is a freakin genius! Lol), and he said he couldn’t disagree. It’ll be some time before the research & studies confirm or deny. I believe wholeheartedly that Covid will attack and cause the immune system to become focused on fighting covid that other cancer causing viruses reactivate.
Let’s talk about life. What would you like to talk about? What’s on your mind?
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JK you may be right on the increase of cancer from the covid situation but not from covid itself, it is related to the vaccines.
Look up Dr. Jessica Rose, Dr. Peter McCullough, Dr. David Martin, Steve Kirsch, Dr. John Campbell, Dr. Robert Malone, Senator Ron Johnson, and Dr. Tess Lawrie just to name a few.
Here we are post cancer folks on the same forum in the same boat so whatever you would like to discuss feel free to start. I have been busy keeping the household going with minor repairs when needed and the general things we do around the house and helping neighbors or anyone who needs a hand and spreading the good news of the Gospel when I get the chance. I am old so it seems there are more Doctors, dentist, and health appointments but I am like an old car you get one thing fixed and something else breaks.
Wishing You The Very Best
Take Care, God Bless,
(NEGU) Never Ever Give Up
Russ
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Hi. I too recently had surgery on my upper right mouth area for cancer. 7 of my teeth were removed, my entire gum bed cut out, the top of my mouth was partially removed and I had lymph nodes taken out on that side. I had 35 weeks of radiation and am on my second Obturator too. That is something that is definitively taking some time to get used to. I sound different, talk different so I understand your struggles with it. I’m still in speech therapy for swallowing. I lost my ability to swallow during radiation. Have you had any problems with that? Non smoker non drinker too. I wonder to why me? I just don’t think there is any rhyme or reason to the evils of cancer. It’s just horrific.
I’m always happy to talk to someone experiencing this awful battle. It’s not something I think anyone can grasp unless you’ve gone through it.
Please let me know how you are and if I can help in any way.
Take care,
Garland
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Oh I know how you feel. Same with me. I have marks on my right side of face and neck and my Obturator doesn’t allow my lip to completely cover my lip on right side. Plus I talk so funny now I think. My voice is still not back to normal I’m very hoarse sounding. I feel when I’m talking to friends or anyone all they are thinking is what happened to her?? But we have to let that go and still get up and get out and live. Easier said than done, I know. But you’re not alone 🥰
Garland
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I didn’t get the vaccines and I’m glad! I’ve heard so many horror stories. My own sister got her 2nd shot and was in the hospital within 3 days with organs failing. Now she is on dialysis and needs a kidney transplant. Just scary how fast that happened! The vaccine came out so fast we just don’t yet know what all the long term side effects will be. That was why I decided to not get them. You can still get Covid and spread it so really what is the point? I did get Covid and it wasn’t worse than a cold other than loss of smell and taste for 6 weeks. But Covid was by far easier than this cancer journey. It really tries to knock the life out of you!! Never give up as the dear Angel Russ always says.
Take care,
Garland
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Agreed, the vaccines are poison, do a search of Dr. Peter McCullough, Dr. Jessica Rose. , Dr. Tess Laurie, Dr.John Campbell, Steve Kirsch, Dr. Pierre Kory, Dr. David Martin, Senator Ron Johnson, Dr. Boz, Dr. Ryan Cole and of course the Maddie DeGaray story.
They can't all be wrong.
Take Care, God Bless
Russ
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hello 😃 it sure sounds like we went through similar procedures. The doctors removed all but 3 of my teeth on top so it’s been a challenge with my obturator. I’m on my 3rd one now. It is the best one so far. I did not need speech therapy but it is difficult to understand me when my obturator is out. I’m now in the process of meeting with a surgeon who is suggesting surgically implanting for lack of better words a hook in my upper jaw to help with the obturator. The call it a KLS PSI personalized implant. The other option I’m being told might be a southern cranofacial zygoma locators. Honestly, at this point after all I’ve been through so far, I’m not sure if I want to do it. In a couple weeks I have my first cat scan since surgery/radiation. Kind of nervous about it. I honestly don’t know if I could go through all this again. Just gotta hope for the best1
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