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Cooper #198564 06-21-2019 07:52 AM
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I called the office the ENT is at today and asked if she had received the report yet. Whomever I spoke with said “yes, I put it on her desk”... “what’s your phone number, the NP will call you.” Now I’m sitting here thinking all kinds of thoughts.

“Why isn’t the ENT calling me? Is it because she said nothing is wrong and now there is?”

“Is it because the NP is better at delivering news?”

And why isn’t my phone ringing yet... it’s been 20 minutes. Is the doctor briefing the NP on my report? I’m losing it. I’m at work so there’s not much I can do to settle my worries while I’m sitting here.

At what point can I call back and ask to speak to the NP as soon as possible? I’m not good with waiting.

Cooper #198566 06-21-2019 09:36 AM
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it's been my experience that my husband rarely heard news from a worker alone even with good news. there was always a doctor in the background talking along with the worker. Are they allowed to call and give results? I don't know. I'm just thinking outloud.


Spouse of 58 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
6/2020 proton therapy
9/21/2020 cancer free
ConnieT #198568 06-21-2019 10:03 AM
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I don’t know either. My doctor called and gave me the results of an abdominal CT I had. Other imaging I’ve done the radiologist has spoken to me right after.

I called back, apologized for being pushy but expresssd that I was anxious, receptionist was kind, took my number and said the doctor was in until 4 so she’d call me by then. Now I’m wondering if I really should have pushed to find out before the weekend.

Cooper #198571 06-21-2019 11:26 AM
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Cooper,

The cancer center I’m at now gives your the results of a PET/CT right after it’s done when I go back to see my ENT in the same building.

Other places i was treated didn’t give you the results right away, so I went to the Radiology Center the next day to pick up my copy and read it myself. Sometimes it did say it was suspected cancer, so if you can handle that it’s a way to go.

I hate waiting, so once I ordered my own FNAB without seeing a doctor, which proved cancer anyway, which I don’t recommend. So then I had to see my doctors and explain myself. Being I had so many doctors, I was able to get by or it didn’t matter at that point.

I hope your doctor calls back today because waiting is the worst!


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Cooper #198572 06-21-2019 11:34 AM
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Update... (if anyone is following along)

Just got a call from the NP and she said that my ENT didn’t have any concerns about my scan and would see me at my next appointment (7/15).

I am feeling a little relief. However, still concerned for my on-going symptoms (namely, unexplained ear pain - no infection was detected, swollen (IMO) lymph nodes, minor sore throat/pain when swallowing, stiffness on side of neck, larger tonsil.) Am trying to address anxiety appropriately so as not to confuse true symptoms with anxiety. I’m, of course, holding onto every case of someone here - and elsewhere - who has had scopes and scans miss something.

I didn’t ask any questions of the NP because I got the impression she was just delivering a message. Plus, I kept my appointment with the other ENT who I saw back in March and that is on Monday. I’ll ask him about my scans, have him check my lymph nodes and ask him to scope me again. Depending on my satisfaction with his responses, I’ll consider getting another opinion perhaps at a different practice (the two ENTs are colleagues.)

I’m sorry if I’m frustrating or annoying anyone here. Perhaps I’m looking for an outlet, or reassurance, or someone to tell me I’m not crazy for being skeptical. I do have medical anxiety and I am getting treatment. And believe me, I do more than anything right now want to put this to rest and move on. So please if you have any words of advice I’d appreciate them.

PaulB #198573 06-21-2019 11:41 AM
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Thanks so much Paul. I appreciate your response. And have reading through many of your posts/your story, I commend your strength and courage through a tough course.

If I don’t see the report show up in my online chart by early next week, unless I get a copy at my appointment Monday, I’ll call the radiology department. I know it took a couple of weeks after I had pathology on my gallbladder for the report to show up online as well as prior imaging I’ve had done.

I always like to read reports myself, even though sometimes I can’t understand what I’m reading. I do try and I do ask questions and even try to retain the answers!

Anyway, my ENT office just called back asking if I still needed to keep my appointment Monday since the scan was normal and I said yes, and they were fine with that but I guess that means things were really not concerning to them. That said, I want a physical exam. At least so a baseline can be established. I had to wait 3 weeks for this appointment even when I told them about a swollen, bleeding tonsil!

Cooper #198580 06-24-2019 06:14 AM
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I’m heading to the ENT shortly. I’m hoping he will go over my CT scan with me, if not, I’ll ask about getting the report for my records.

As I’ve mentioned before, I’m a data person as I research professionally. I’d like to know what the likelihood of the CT identifying a cancer or suspected cancer is. As many of you know, I was referred for a CT not due to any suspicion but because another ENT wanted to reassure me.

And ordinarily it would but I’ve read accounts of folks on here and elsewhere where a CT missed their cancer, especially smaller cancers originating in the tonsil or base of tongue. If you happen to be reading this and are one of those folks or know of the story of one, I’m curious how the cancer was eventually discovered. Persistent symptoms? Insisting that an US and FNAB be done?

My persisting symptoms despite being told my CT was normal are:

Intermittent ear pain (mild, sometimes a sharp pain out of no where, sometimes a subtle throb)
Feeling of a clogged/itchy ear at times
(All war issues are unilateral on side of neck that I’m concerned about)
Intermittent feeling like there is a lump in my throat
Intermittent clicking when I swallow (clicking on affected side)
Right tonsil larger than left (not huge, but definitely larger)
Intermittent bleeding of tonsil when prodded
Bad breath that isn’t explained by oral hygiene (my dentist claims my gums and teeth are healthy)
Feeling of tightness/fullness in neck on affected side
Popping sensation where enlarged lymph node is when I turn head to opposite side
2 (maybe more) palpable lymph nodes in submandibular area (rubbery/hard, semi moveable, pea sized) bilateral
Tenderness at angle of jaw, possibly swelling in that area as well
Intermittent hoarseness (about 2 weeks), is resolved when I clear my throat
Intermittent sore throat, especially on right side... not so painful I would ever see a doctor for it typically


I’ve been on antibiotics for 7 days with no change to the nodes...

So as you can see, some resolution in symptoms or at least decrease in severity but lymph nodes are not changing and odd sensation in neck is still there. Worse when I wake up but I meditate through out the day. It’s not pain like when I’ve pulled a muscle or slept funny on it, it feels more like a swollen tender feeling.

I want to be reassured and put this out of my mind but also don’t want to be resigning and just accept this as normal because it isn’t my normal. I’m happy to investigate TMJ if some or any of my symptoms can be explained by that but I know the lymph nodes are not a response to that. Should I be pushy for more testing or be confident that a CT scan should be pretty telling?

Cooper #198581 06-24-2019 06:24 AM
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I"m going to say a lot of your symptoms are similar to the ones I had when I had allergies. I"m allergic to chemicals (it was awful being around husband during chemo, I had to wear a mask and get a filtration system), formaldehyde, mold. I suffered for 12 yrs on antibiotics due to sinus infections but those symptoms are very similar. just a thought.

I changed my diet and my allergies all except the chemicals went away. no sugar, no gluten, no dairy. works better than antibiotics. just sharing my experience as i know you are trying to put the pieces in a puzzle right now.

best wishes.


Spouse of 58 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
6/2020 proton therapy
9/21/2020 cancer free
ConnieT #198582 06-24-2019 07:12 AM
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Thanks Connie. I do have a history of allergies, though the obvious signs have actually gotten better over the years. My dad still suffers tremendously. We do suspect mold in our older home and have had testing but the levels were never to a point where remediation was a consideration. We run our AC to keep humidity down and use air filtration. I do have a pretty constant post-nasal drip during certain times of the year and end up with a bout or two of sinusitis every winter. Crossing my fingers it’s allergies and TMJ. I feel as though I can safely assume TMJ is likely an issue for me as I recall lots of jaw pain after my last dental visit when I had to keep my mouth open for long periods of time. I also have never been able to open my mouth super wide and get jaw pain/headaches when I chew gum. There is also the periodic grinding sound in my jaw when I open it.

It’s always so tough to know which symptoms to take seriously when so many symptoms that can point to serious conditions, can also be explained by much less serious, treatable ones.

Cooper #198583 06-24-2019 08:19 AM
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Got my CT:

“There is mild and relatively symmetric enlargement of the bilateral palatine and lingual tonsils. Allowing for this, the base of tongue is grossly within normal limits.

Several prominent bilateral cervical lymph nodes are seen, measuring up to 9 mm in short axis of the right level 2A station.

Impression:

Mild and relative symmetric prominence of the bilateral palatine and lingual tonsils, presumably reflecting chronic tonsillitis hypertrophy.

Multiple prominent bilateral cervical lymph nodes are not pathologically enlarged by CT size criteria, and are presumably reactive. Recommend continued attention on follow-up.”

The ENT didn’t scope me today but did a visual and tactile exam of the tonsils. Said the right indeed seems enlarged but explained that the CT is showing they are both enlarged and that it’s sort of an “ice berg” effect - there’s more on the left than what we are seeing. He also said that the CT would have picked up on any masses within the tonsil. My ears are clear. He said the ear pain could be secondary to TMJ dysfunction. He also noticed some really tight neck musculature and checked the report before telling me that it was just muscle. He seemed really confident that the CT would pick up on anything concerning (I asked about biopsy or imaging of the lymph nodes and he said they would recommend that if they thought that should be done.)

Told me to watch for other symptoms of Lymphoma, put this on the back burner for now and come back in 3 months for a check of the lymph nodes.

I have a follow-up with the ENT who ordered the scan on 7/15 so if there is a change, I’ll at least be seeing her then. Should I put this to rest for now or should I seek a second opinion outside of this practice? For reference, this is a practice affiliated with a highly regarded institute. Both the ENTs I’ve seen are professors at Harvard. But neither have brought up risk factors for an HPV related oral cancer. The ENT today said “it is lymphoma we’re worried about here, right?”

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