the feeding tube was the worst part of my husband's treatment process. they finally replaced it half way through and then after it was removed, they had to do surgery to suture the hole as it would not heal. He put up with the issues way too long.
I didn't gel with my Head & Neck specialist, or much of her team. When I got my diagnosis from a dental team they made me feel as if I was in safe hands, but the next day I met with the team at the hospital which I was going to be treated at and I found their bedside manner very blunt. I understand my cancer is life changing, I understand that my treatment is going to be tough, but I felt like the wrote me off.
They recommended I went for a 2nd opinion at a different hospital, who said almost the same thing to me but they said it in such a way that I felt the fight in me want to get going. Team 2 were far more positive and pro-me! Team 2 also introduce me to a 3rd team (crazy right!) who said I fit the criteria for an immunotherapy trial (689). It would run with my treatment. They said that I would have 2 doses of immunotherapy before surgery to try to reduce my tumour (my tumour covers the left latteral side and is 1.5cm over the halfway point into the right. They will reduce 2/3 to 3/4 of my tongue. The base is looking good though). I will then have a partial glossectomy, neck dissection on both left and right, followed by reconstruction.
I'm going to have 30 sessions of radiotherapy and chemo thrown in with the immunotherapy on top.
I met Team 3 last week and their encoragement and positivity blew me away. They were honest and gave me worst case vs best case, which is far more than Team 1 did.
So for anyone out there who is at the beginning of this awful journey, always get a 2nd opinion and if you don't get on with your team then do find yourself someone who makes you want to live and fight to live.
Thank you for posting this. I'm going to have 6 weeks of radiotherapy with chemo thrown in at the same time. This will be after my surgery. I was wondering how the 6 weeks will work as all I know is that rad will be 30 sessions, 5 per week. I couldn't see where the chemo was going. (I've got my meeting tomorrow)
Anyway, thank you for posting something positive in such a dark time. I look forward to finding my happy day in the week
I’m 35, female. I’m guilty of using google to diagnose symptoms but I’m also petrified at this point because I can’t find another reason for what I’m experiencing. I’m also having some “odd” symptoms that I cannot find any explanation for and was wondering if anyone with a diagnosis has ever experienced them.
In March I noticed some bumps on my tongue, went to ENT who scoped me, said he saw “pustules” on my tonsil and applied some pressure which causes some funky tasting stuff to be released into my throat. He prescribed antibiotics. I wasn’t experiencing any pain in the throat. I didn’t take them. Dentist did oral cancer screen and didn’t see anything on tongue of concern. I felt relieved.
In May, I started experiencing this strange popping sensation in my neck when I turned my head to the left. Not painful, just odd. Not audible, just a sensation. It happened maybe a half dozen times a day. Not every time I turned neck but often enough. No pain. Starting inspecting neck regularly and noticed some tightness in my muscle and pain when I applied pressure so I went to see PCP. She gave me neck exercises and sent me home. Dissatisfied, I made another ENT appointment.
I took a look in my throat and saw that my right tonsil is larger than the left. It’s certainly not huge and of normal color (as far as I can’t tell). ENT said possibly TMJ. But I don’t have jaw pain... She felt for nodes in neck, then scoped me. Also agreed right tonsil was larger but looked normal. I mentioned bleeding (there was blood in my saliva after hitting the tonsil with the waterpik) and she said that wasn’t uncommon because it’s a vascular tissue. Mentioned my mild but persisting ear pain (it’s not constant but is daily), likely TMJ she said as no sign of infection. Said she would order a neck CT since I still seemed worried. I asked her if she felt that was necessary. She said she would cancel it if it was going to give me more anxiety. I asked if she thought the tonsil should be biopsied, she said no.
That was 2 weeks ago. Since then, I’ve discovered 2, possibly 3 nodes in my neck. Two are under jaw (bilateral) and have to sort of be “dug” out of the skin. They are moveable, I guess, not sure I understand the terminology. But rubbery? How does one distinguish? How can one tell the difference between rubbery and hard? Seem to be pea sized. Non-tender. The other one is just behind the angle of my jaw. Moveable. Can’t really decipher the size and also unsure if I’m in part touching a salivary gland? I feel something similar on the left side but doesn’t seem as big. Again, I sort of have to “dig” under my jaw to find it.
Went back to PCP as wait for ENT is weeks. She was visibly annoyed. Said “why are you so worried about head and neck cancer?” “You don’t smoke, you’re not a heavy drinker.” Then under her breath said “or have had a lot of oral sex partners.” To that I replied, “yes, I have”. I’m not sure how many honestly but probably a half dozen or more. I had HPV on a Pap when I was ~22. All subsequent paps have been neg, including the one I had in May. I had the HPV vaccine when I was 25/26. But my positive was before that, obviously. She seemed agitated by my response and said “well all you can do is call and try to have your CT moved up”. Then I cried and she told me to meditate or do yoga and said I should see an oral surgeon to talk about TMJ.
Since then, my throat has been sore off and on. I prodded at the tonsil and more blood tinged saliva followed. My neck feels achey but I don’t stop inspecting it so there’s that too. I found a few things I can push in and out of place and I’m honestly having a hard time distinguishing between normal anatomy and anything else. I’m going with whatever is bilateral is normal. Tonsil seems achey but again, I’ve prodded at it. Neck popping sensation hasn’t happened in a few days. I do feel twinges in my neck and little fluttering sensations. I keep wondering if I’m feeling my lymph nodes swelling. And if the popping was a ligament getting caught on my swollen node. I know I sound crazy.
So if you’ve stayed with me this long, has anyone else experienced the neck popping sensation or pulsating/fluttery feeling? Stiffness in neck or pressure feeling? Ear pain that is mild to barely noticeable, sometimes intensified by swallowing or yawning or talking?
I’ve done the worst and read every single article and research study possible and have seen all sorts of contradictions and have talked myself down and then worked myself back up 10 times over. I have a young family and a husband who has chronic health conditions so obviously I’m a worried wreck.
I hope I haven’t bothered anyone by this. I know I’ve sought medical advice and been told to chill but of course every story of people being brushed off and delayed diagnosis has me wanting to scream at my providers for acting as though they aren’t concerned due to my age and non-smoker status.
Anyway, my CT is Wednesday and I have a follow-up with an ENT on Monday (I kept this appointment after seeing the 2nd ENT because I wanted another opinion.) I’ll take all the positivity you can muster and prayers if you are the praying kind.
I answered more thoroughly on the Introduce yourself thread...
If you read my Signature, you'll see that my Primary surgery was in 2017. ( glossectomy, mandibullectomy, neck dissection, etc)
But this year, I've had to begin all over again Because My Cancer Has Returned .
I don't know what's coming next because I have to first heal up from these two surgeries from April & May. But I can tell you my calendar in full of appointments. And I have very complicating comorbidities, like my underlying Genetic Immune Deficiency. Yep, I was born Immune deficient. Every 28 days I am admitted to the hospital to get my infusion of intravenous Immune Globulin. That replaces a small part of what I do not produce...
Anyway I am quite tired now!! And because of my continuing aspiration pneumonia problem, they are also discussing taking me off of my liquid diet. And that's all I have left !
I have been fighting my recurrent Invasive SCC, for 2 years now! Mine has returned after my Radiation treatments 1 year ago.
In fact, I just had 2 surgeries within 1 months time, along with my 5th aspiration pneumonia.... ( E. Coli pneumonia !! I aspirated stomach contents).
My tongue Flap is still suture d down ( in front, it is sutured to my bottom lip! ). I've now been in Sutures for over a month. Why?? Because of not healing--- 2 wounds from surgery opened up, the tissues Retracted, from Radiation effects....they also became infected ( yuck!!).
Now, I am facing starting all over in treatments. I'm not sure what it will be yet-- after healing from these surgeries, I see my Radiation Oncologist in July, then my Medical Oncologist .
I cannot shy away from having another Tracheostomy, because it may well be in my future because I have a mass beside my vocal cords as well..
I need to amend my Signature here, to add in all my new cancer.... Sad!! ( Yes, I am 100% dependent on my Feeding tube. I've not had Food, since early March 2017. I carry my feeding backpack everywhere with me)
When I made the saline for the saline wraps for his radiation burns, I boiled the saline and let it cool down before I used it. You may want to check with your pharmacist if he is going to rinse his mouth with it.
I kind of figured they were looking for some type of cancer with the PET/CT, but it’s a possibility of it being TB you mentioned, which I know nothing about, but it seems the lesser of two evils!
I hope for the best whatever outcome, and feel you’re doing the best you can among the way, and hace my admiration! Here, there are immuno therapy treatments now making possible dreams a reality, so I hope that would be an option. If it’s needed.
Take care for now, and my thoughts are with you along the way!
Hi Chandana I am 62 and 10 month post radiotherapy for tonsil cancer. I too had ulcers and a radiation burn the full length of my tongue. I was prescribed gelclair which did alleviate some of the pain.i am in the UK so my treatment May have been slightly different. Once treatment finishes just remember the hard work really does start as we all recover at different rates. I found it was bettervto have an idea of what was going to be in front of me as opposed to blindly not knowing.
Welcome to OCF, Hazel! Im glad you found our site! OCF is the largest online oral cancer (OC) site dedicated to providing correct and up to date medical info for OC patients and their caregivers.
Its always great having survivors join our ranks! Being 10 months post rads, you are still in the middle of your recovery phase. The worst of everything is many months behind you. A complete recovery takes 2 years after finishing rads. You should notice more improvements with your dry mouth and sense of taste here and there up until about the 2 year post rads mark.
Yes, I heard about using saline solution wraps, and and another I forget the name, but it’s posted someplace in search under domeborro begins with an H. I believe they’re for moist desquamification too, but never had to use any myself.