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.