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Coopercoop's Message Board Messages

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RE: Tonsil cancer

by Coopercoop - July 10 at 10:43 PM

Danny, I’m in a similar situation. I for some reason cannot create a new thread. I had a weird tight/tingly/popping sensation in my neck and then noticed my right tonsil was larger than the left (not inflamed). Saw ENT. She agreed, scoped but said it looked healthy. Ordered CT. While waiting for my CT (two weeks), I discovered 2 palpable lymph nodes bilaterally. They have to sort of be searched for, they aren’t visible in my neck or palpable without putting fingers up under jaw. CT confirmed several prominent nodes, largest 9mm. Deemed to be reactive and my tonsils were deemed to be mildly symmetrically enlarged. ENt explained sometimes tonsils hide a bit so they appear different sizes on visual examination. I’ve had mild ear pain on right wide. Neck still feels funny but I never stop prodding it so who knows. I feel these little twinges or twitches sometimes too, sort of in the area of the nodes. I found another small node on right side. Smaller than the ones I have bilaterally. I am seeing the ENT Monday and I suspect she is going to tell me my CT was normal. I have been on antibiotics for 5 weeks with no changes. I’m so worried that I’ve had the unfortunate luck to have ENTs who are less experience with occult tumors. No one has said why I have these nodes. No one has explored the cause of my ear pain other than to determine no infection is present. TMD was also suggested but no advice on how to alleviate my symptoms. I’ve seen 3 ENTs now. Two are in the same practice, one was a different practice. I’m going to ask on Monday why a FNAB isn’t recommended given that the antibiotics aren’t reducing the nodes and I haven’t had any acute illness. ENT #3 told me nodes smaller than 1.5 are considered normal. Ugh.
What an ordeal! I’m so sorry to hear that. How large was the enlarged node, if you don’t mind me asking? Did they suspect it was cancer after your CT (despite not seeing a primary)? I had a CT and the report simply states that it is presumed to be reactive and given size criteria, not deemed pathological. The radiologist concludes it should be monitored on follow-up. I’m confused because I didn’t think size should be the only criteria for suspicion. Mine doesn’t seem to have changed in size, but it sounds like yours took a long time to change size. Stories of others being told similar makes me worried. And I realize that it won’t always be the case that something is missed. Sorry I jumped on your thread, for some reason none of the posts I’m creating are showing up. It says it needs to be approved by a moderator... it’s really just my story so I can’t sort out why it hasn’t been approved! Continuing to wish you well.

Symptoms but no dx

by Coopercoop - July 10 at 4:45 PM

I posted here a bit ago but my post never showed up. My story is basically this: I started having this weird sensation in my neck at the end of May. I started rubbing my neck and eventually it became a bit tender but more of a swollen, tingly feeling than anything. PCP wasn’t helpful. ENT (self-referred) said my right tonsil was larger than the left but not huge, put on antibiotics. She ordered a CT because she said “she could sense my anxiety”. She didn’t feel I needed one professionally. I had the CT. By then, I had felt at least 2 lymph nodes (bilaterally). Report came back as bilaterally enlarged tonsils, bilaterally enlarged lymph nodes (several) largest 9mm in short axis. Level II. Doesn’t meet size criteria to be considered pathological. Presumed reactive. Saw another ENT. He basically said “nothing to worry about” “see you in 3 months”. Saw another ENT. She showed me my scans and had a much better bedside manner but didn’t have anything new to add. No need for biopsy because they are under 1.5cm. I have a follow-up with the ENT who ordered my scan on Monday. Found another lymph node but it’s smaller than the others. Still have that tingly, tight feeling on right side neck. Minor ear pain (comes and goes), minor throat irritation. No symptoms have worsened or improved and I’ve been on antibiotics for 5 weeks! So far, tonsillitis and TMD have been suggested though I’ve had tonsillitis before and I knew it because it was painful. This is not like that. Of course I want every single doctor I’ve seen to be right and that I’m just a crazy person with health anxiety but I’m so uncomfortable and no one has any helpful info about the lymph nodes. One ENT said “they’ll be gone within 3 months or so”. I’m 35, female. I know oral cancer is rare but with all the news about HPV oral cancer I guess I would just hope for a bit more investigation into my symptoms. Anyone experience anything similar? Have advice? Should I seek yet another opinion?
Can I ask about your lymph node and symptoms prior to diagnosis? I, too, have enlarged lymph nodes (at least 3) in the neck and some other symptoms and haven’t been able to find answers. Did you have a CT of the lymph nodes and still were told it wasn’t cancer? That’s where I’m at... I’ve had a CT, been told they are enlarged but probably reactive. Ball stopped there. I’ve been trying to figure this out for nearly 2 months now. Sending good thoughts for your upcoming scan and best wishes for continued recovery.

Worried

by Coopercoop - June 20 at 10:25 PM

I’m very worried that I may have HNC... here is the story (sorry if it’s super long). In March I went to dentist and pointed out these growths on my tongue that had been there for about a year (I know, I know). The dentist did a veloscope exam as well as a visual and physical exam. He said they are just normal pappillae of the tongue. I had also made an appointment with an ENT so I followed up. ENT did a scope and said he saw some pustules on my tongue and some stuff in my tonsil crypts. He pushed a lot of it out and prescribed me antibiotics. I admittedly didn’t take them - I didn’t have any symptoms of infection and I’ve had strep and tonsillitis before. My concerns sort of went to the back burner excuse I had gallbladder surgery and that was my focus. End of May I felt this weird sensation in my neck when I turned my head. Sort of a popping feeling but not painful. Just weird and worrisome. Only happened when I turned to the left so I started diligently inspecting my right side where I felt it. My neck muscle (bad at anatomy but the big thick one) just felt a little sore when I rubbed it hard but so did my other one - I carry stress in my neck and am guilty of looking down at my phone. I decided to go to my PCP anyway. She suggested maybe I’d been sick... nope. Then said it was likely TMJ (it’s certainly a possibility... I have woken up with jaw tenderness before and notice that I clench.) She sent me on my way. A couple of days later I noticed my right tonsil was bigger than the left and when I hit it with the waterpik, it bled a little and hurt. I made an appointment with the ENT. She scoped me and said yes it is bigger but it’s not huge and looks healthy. She gave me info about TMJ and prescribed more antibiotics. She ordered a CT for my reassurance, telling me if it made me more anxious, she would cancel it. I asked her if she felt we should biopsy the tonsil and she said not at all. CT was scheduled for 2 weeks from then. I started feeling around a lot and found two palpable nodes under my jaws (bilateral). Both are moveable, I have to search for them but can always find them. Seem to be around 1 cm. I also felt what I thought was another lump just around the angle of my jaw on the swollen tonsil side. Made appointment with PCP because ENT doesn’t have urgent appointments without referral. PCP was annoyed, suggested my anxiety was out of control. Made the whole appointment about that. Said she couldn’t feel what I did even when I felt the spot for her. She said I didn’t have risk factors and then I mentioned my history of HPV (cervical positive in 2006 but negative since and I had the vax in 2009/2010). She made a comment about how it wasn’t a concern unless I’d had oral sex and I replied that I had and she said that I’d just have to wait for my cat scan. She commented again about it being likely TMJ, which I’m certainly not refuting. I started taking the antibiotics, why not? No change in the nodes but it’s been only a few days. I had my CT yesterday but haven’t heard anything. I’m just in such a state. I’ve read a million different things... like having no symptoms other than a large node to having a myriad of symptoms. Or having no nodes and just a swollen tonsil. I thought maybe since my nodes I feel are bilateral that that is a good sign and then I’ve read others say that they had really small nodes and that was how they discovered their cancer. I’m also still having strange twinges in my neck. The popping feeling stopped a few days ago. My neck feels swollen or just inflamed but I’ve been non stop prodding it and don’t know if I’ve caused that. Anyway, not sure what I’m looking for, maybe some good vibes. I am worried that because I’m 35 and female I’m being looked at as anxious because of low level of suspicion.
Just wanted to send ((hugs)). I’m in a similar boat. Just had my CT yesterday but haven’t heard anything yet. I think the biggest difference for me is I have 2 palpable lymph nodes (on either side of the neck). They are seemingly moveable and maybe 1 cm. My CT was also ordered for reassurance but my ENT didn’t feel the enlarged nodes, those cropped up (or I first noticed them) between my ENT appointment and my CT. I also have little ones at home so I’m a mess.
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