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#198522 06-17-2019 05:25 PM
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Cooper Offline OP
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Hi,

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.

Last edited by Cooper; 06-17-2019 05:27 PM.
Cooper #198533 06-18-2019 02:04 PM
Joined: Jun 2013
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Chill while you wait is good advice. Annoying, but good. There can be bumps that are totally benign. I used to have little lumps in my earlobes that were just calcifications, and a cyst on my arm that was harmless but had to be removed because it was pressing on a nerve and causing pain. Google would've freaked me out if it had been available when I was dealing with those!

Do the scan, and wait and see. And if your neck still bothers you, there are some great neck massage therapy techniques that might help it feel better, once you determine if it needed treatment or not. (Most of us end up getting some therapy after treatment to help ease the strained muscles ... I would imagine they feel good whether the cause is medical or otherwise.) Something to ask about after.

((hugs))


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
KristenS #198536 06-18-2019 06:41 PM
Joined: Jun 2019
Posts: 37
Cooper Offline OP
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Thanks for your kind words.

I’ve had a bumpy road health wise... nothing majorly serious but breast cysts, bone cysts, had a 7 cm stone in my gallbladder so I said goodbye to that in April, and then this neck issue came along as soon as I was feeling good again.

And I probably should admit that I’m going through this alone. I’ve chosen to keep my husband in the dark because he went through it the first round with me when the ENT said nothing was wrong (in March). Then an emergency gallbladder surgery, and recently an investigative colonoscopy due to issues. I feel like I need him to keep on going without the worry. It just makes it harder to hold in.

Cooper #198545 06-19-2019 11:44 AM
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It's HARD to stay chill when you've already had a rough medical history. ((hugs)) In this one way I was blessed ... cancer wasn't even on our radar until ... whoa, it's cancer. I just had a 'sore that wouldn't heal' and after many months of two doctors trying to do something about it, the specialist said, "Some things just don't heal till you cut them out and let them start over." So we went with that. I don't know if he had suspicions or not, but he didn't put any ideas in my head. I came out of surgery with the information that it had been a cancerous tumor, and he'd kept going back in till he had clear margins. Gotta love that he did that, and helped keep me worry-free as long as possible. Of course, then everything went totally nuts, but it was still something. smile

And, yes, it's hard when you want to protect your family. Remember, though, that's what family is FOR. You sound like you're at the place where you could use some IRL support. Is there a friend you have who's a good listener, if you don't want to bother your husband? (Not saying we don't listen well here, but there's limited help if it's not actually cancer, and you don't know that yet. Fortunately for most folks who drop by, it ends up not being so. And if it's not, you'll still need a listener for whatever you are dealing with.) A sibling? A pet? (Me, I've got a great teddy bear ... I know that sounds cheesy, but I've had that thing since I was ten, and it has been through every imaginable crisis with me. Took it to cub scout day camp last week, even, as part of my mini display of a proper campsite ... the kids loved it. LOL. But that thing is my 'safe' cuddly.)

Many hugs to you. And open ears.


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
KristenS #198546 06-19-2019 12:59 PM
Joined: Jun 2019
Posts: 37
Cooper Offline OP
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Thank you. Your response is very kind and appreciated.

I had my CT scan this morning, tech said likely the report will be in tomorrow. Don’t know if that means I’ll hear anything tomorrow and not sure if they will upload the report to my chart prior to my referring ENT speaking with me first.

Regardless of what I find out, I’ll have to talk to my husband soon. He knows I’m off, I can tell. He generally is my support system (and he’s a great one, but we’ve had so much heavy stuff on our plate, I’ve always been a protector when it comes to him.) A good friend just messaged me today about another friend with a new breast cancer dx at 35! So that has my worries flared.

In all sincerity, thank you for your kindess. I’ll update when I can.

Cooper #198549 06-19-2019 03:17 PM
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Lymph glands can swell from infections too, so it could just be that. I'm glad you are getting a second ENT opinion and I'm glad you got the CT scan done. That will tell you whether or not you need to have a biopsy.

Easier said than done, but try not to worry too much. I can't tell you what a hypocrite I am for writing that! I am the WORST for worrying! LOL! But I know whereof I speak on this! You've done your research, so now you just have to really try to put it out of your mind until your doctor's appointment. Keep busy. Learn chess. Read challenging books. Do a paint-by-number. Get really involved in and binge on a TV series on Netflix. Whatever it takes to get this off your mind until you can actually know something concrete about your situation.

Sending hugs and good vibes your way!!!

Cooper #198550 06-19-2019 03:25 PM
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Also, this isn't really for me to say, but from what you wrote, your PCP doesn't sound like the most compassionate doctor I've ever heard of. Giving her the benefit of the doubt, does she just know you really well and knows that you need a "tough love" approach or something like that? Maybe she is exactly the right doctor for you and you wouldn't want to change her. Otherwise, if it is like it sounds from the way you wrote it, there may be more compassionate, more responsive doctors that could be a better fit for you. Just a thought. But like I said, you are the best judge of what doctor is right for you and maybe this one is an excellent fit. I don't know.

Wishing you all the very, very best!!!!!

Rabbit #198552 06-19-2019 05:17 PM
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Cooper Offline OP
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Thanks! So, I’m not over the moon for her. But I recently had to select a new PCP and it was really hard to find one who could fit me in for a physical within a YEAR. She’s not terrible but she knows I have anxiety so I think she is dismissive. I actually just read my follow up notes from having her check out my nodes and it just says “treated for anxiety”. Which is basically what she summed up my visit as. She also threw OCD in the mix but then corrected herself.

I guess it’s not fair to say dismissive. I went to her with abdominal pain and tenderness and she immediately ordered a CT. And I had a huge gallstone. She did, however, refuse to make me an urgent GI referral even though I was presenting with very worrisome symptoms (I’ll spare everyone.) I went the regular route (I don’t need referrals to specialists but just won’t get in urgently) and my GI wanted to do a colonoscopy. Unusual for a 35 year old, but he did find 3 polyps which he stated was unusual for my age. I don’t have those pathology results yet... I’m glad I self-referred though.

Anyway, I’m on the fence about her. I think on the one hand she wanted to be reassuring to someone she has diagnosed as having GAD but also lacks the thoughtfulness I would prefer.

Cooper #198554 06-19-2019 06:55 PM
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It's so hard to find a good PCP. I had one I liked years ago and when he told me that he was leaving private practice and was going to work in a hospital, I surprised him and myself by bursting into tears! LOL! To find someone who listens, cares, takes each situation seriously, and has a good track record of accuracy, is a rarity for sure. I have had several specialists that I love. My ENT, my Ob gyn, my radiologist. LOVE these people! But they aren't primary care docs, so oh well.

Cooper #198559 06-20-2019 11:27 AM
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Cooper Offline OP
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I know my anxiety is making me impatient... how long does it take (I’m sure there is a range) for a CT report to be relayed to the patient?

This is a different experience for me because the last CT I had was at the hospital so the radiologist read it while I was still there and I left with a verbal report from my PCP. This time, I was at an imaging center. The tech said the radiologist would review it that day (yesterday) and the report should be available today. I called the office for the ENT who ordered it and they said I’d get a call when she’d reviewed it. She does work today. Is it usually a couple of days turnover? I know a couple of days isn’t much in the world of a busy medical practitioner but to me it feels like an eternity... especially since it’s likely my report is out there waiting to be read.

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