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History:

Had sore throat beginning about January 1, 2018. Difficult swallowing. Symptoms are localized to the left side of my throat. Hoarse voice with frequent throat clearing. Went to GP who diagnosed viral tonsillitis after strep test came back negative.

Symptoms subside but never disappear. See ENT at end of January 2018 who performs nasendoscopy. He doesn't find anything other than some potential allergies.

Symptoms persist and in addition, begin to experience strong nosebleeds. Go back to ENT about three weeks later and he cauterizes blood vessel and dismisses it as seasonal allergies/dry air.

Unconvinced, I seek a second opinion and go to another ENT about 2 weeks later. He performs another nasendoscosy and sees no indication of cancer. He notes a ton of sinus drainage, allergy symptoms, and blood on my vocal cords which he states is from trauma (i.e. getting hit or yelling). Nosebleeds have ceased since cauterization and in my head, the past nosebleeds could be the cause of blood on my vocal cords.

Fast forward another 4 weeks to the present and in the past week, three lymph nodes on the left side of my neck suddenly become swollen. They are all fairly rubbery, moveable, and painless. Return to ENT and he is relatively unconcerned. He basically said it looks like an infection of some sort and if they get bigger or don't shrink in the next month, we can do a biopsy. Only thing is, I don't have any other symptoms of an infection. My symptoms continue to persist (i.e. sore throat, throat clearing, strange sensation when swallowing.)

Further information; I believe I am at high risk for HPV-linked tonsil cancer. I'm 32 and in otherwise good health (just had my annual physical and nothing came back as imbalanced). My ex-girlfriend had a high risk strain of HPV (not sure exactly which one) but she had pre-cancerous cells removed prior to my knowledge about the risk it presents to men. I smoked for about 10 years but have not in almost a year. I drink alcohol, not excessively, but fairly regularly. Maybe I'm crazy but my history and symptoms seem to strongly correlate to HPV-Linked throat cancer.

My questions are as follows:

1) Are 2 separate nasendoscopys with no indications of cancer enough? Should I stop worrying?

2) What other tests can be done to diagnose throat cancer? CT Scan, MRI, PET Scan? Can I demand to have these done?

3) Should I demand a biopsy on the swollen lymph nodes or sit tight and wait? To me, a fine needle biopsy is a pretty minimal procedure that would go a long way in putting my mind at ease. I find it strange that the doctor recommended waiting to do it, but maybe there is something I am missing.

Thank you for any informatin you might provide. I feel blind stumbling around a maze as my body continues to feel off and none of the doctors seem to take me seriously.

Last edited by WorriedSick101; 04-03-2018 09:18 AM.

WorriedSick101
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Welcome to OCF! If you click on any of the blue HPV's you see throughout your post (or even in my reply), you will be taken to our HPV section on the main OCF site. There you will find tons of detailed info about HPV. OCF has been part of this research right from the start and helps to fund a brilliant researcher, Maura Gillison.

At this time there is still much more that is not known about HPV than is known. I recommend you take some time to read thru the HPV info and learn more about it. Please understand our main OCF site is constantly under construction to ensure only the latest and scientifically proven info is there. Some basic HPV info... HPV is a very common STD. Almost all who have it will not see any symptoms and have their body clear it without it ever progressing to cause any ill effects. Even those who have it lay dormant for years can have the HPV eliminated without incidence or ever knowing it was there. There are about two hundred strains of HPV, but only a very few strains are the ones that cause base of tongue, throat or tonsil cancer, genital warts, penile cancer, anal cancer, or cervical cancer. The strain we usually hear about is #16, very rarely do strains #10 or #18 are whats behind any oral cancer (OC) diagnosis. Even if a patient was diagnosed with HPV+ #16, that does NOT mean they will ever get cancer. That only means they have the correct strain of HPV that could progress into cancer. That figure is surprisingly low! Only about 1% of individuals that develop a high risk type oral HPV infection ever cascade into cancer, and that most often occurs decades after infection... per the main OCF site, HPV/Oral Cancer Facts page It seems like you have several symptoms that are bothering you. Patients who have cancer from HPV usually will not have any symptoms at all which is why HPV+ OC is usually not found until its later stages. The odds are very high that you do NOT have this.

As far as demanding your doctors do medical tests and biopsies, I dont think that will convince a physician to preform a test if it is unnecessary. Tests are expensive, they take a while to schedule, they need to be read and processed by the pathologist and then you go back for the results. Its likely a good 3 or 4 weeks from start of being scheduled until you get the final results. If there isnt a suspicion of a serious illness I dont think a doctor could justify further testing. It sounds like you have been thoroughly examined by experienced doctors who arent finding anything that would suggest you have cancer or another serious illness. Of course its not possible to diagnose anyone over the internet, especially when talking about our site thats made up of patients/survivors and caregivers. We do not have years of medical school, clinical patient experience, a complete patient history or the patient in front of us to examine and ask questions of. Without a medical background we are not qualified to second guess medical professionals. We can only speak from our own unique experiences and what we have learned from other patients over the years.

We have a saying around here that works best when finding mouth or neck issues... If you have a spot or sore in your mouth for over 2-3 weeks and it has not healed on its own then it needs to be checked by a professional. By professional, I mean an ENT who specializes in treating oral cancer patients, not the type of ENT who primarily puts tubes in kids ears. As long as the patient is doing everything they can to help their mouth spot/sore/etc heal such as omitting using tobacco, alcohol, mouthwash that contains alcohol, etc and their spot/sore has not gotten better after 2-3 weeks then it requires further testing. Thats when patients get "scoped" (you've already had this done), biopsies, sometimes a CT or in some unique cases a PET scan. Swollen lymph nodes alone do not mean its cancer, they're a sign of an infection or other illness. They could be any number of things that are easily corrected besides cancer.

Patients can help their mouth to heal by rinsing their mouth with a mixture of 1 cup warm water, 1 tsp baking soda and 1 tsp salt. Swish it around in your mouth for 30 seconds - a minute and spit it out, repeating 4x a day helps to balance the mouths ph levels and helps sores to heal.

You know your body best and know when something isnt right. What you are experiencing could be something minor, hopefully thats all it is. To me, it sounds like your doctors are doing what they think is best for you. They have not dismissed your fears but are giving your body time to heal itself. If you strongly feel this is not the right course of action then find a qualified ENT to proceed further. If you can sit tight and wait and not allow your mind to play tricks on you then you should go back in a few weeks only if nothing changes. Dr Google is NOT your friend, it will only further fuel your fears. Avoid it like the plague! That kind of unneeded stress can cause some people to panic and fixate on the worst case scenario, then they will start noticing all kinds of things to substantiate that way of thinking. This is unproductive and unhealthy! I suggest taking a deep breath and start keeping super busy with positive things to help pass the time avoiding as much stress as possible. Hopefully in a couple weeks all your symptoms will resolve themselves, you will be ok and not need our help. If you would have OC, you're in the right place to get info and support.

Please let us know how you make out. Best wishes!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Thank you Christine. I have read (and re-read) the HPV facts page. It is detailed and informative. While the odds of this being throat cancer are statistically very low, the fact that the possibility exists is enough to have me concerned, especially in light of my high risk factors.

To be clear, I don't have any sores in my mouth.

Since a biopsy is the only way to truly diagnose this and from my understanding, a fine needle biopsy is a very quick and minimally invasive procedure, I'm confused as to why my ENT wouldn't do this simply to rule out anything serious? It seems like a a very low-risk, low-cost procedure to rule out something potentially life-threatening. Am I incorrect here? It seems like this is the only way to get a fairly quick and conclusive answer. I'm fortunate to have good health insurance and GP who would likely do it for me relatively quickly so I may explore that option.

Also, the nature of these swollen lymph nodes is concerning. They are all clustered together, near the area I am experiencing symptoms, and are rubbery and painless. Combined with the fact that I have no other symptoms of infection (no fever, no sinus issues, etc.), I find this to be quite troublesome. Heathy 32 year old men in good physical condition with no other symptoms typically don't experience clusters of painless, swollen lymph nodes.

Last question, I'm wondering if anyone has any experience with nasendoscopys being inconclusive. Right now, my only peace of mind is knowing that two trained ENTs scoped me and found nothing of concern. However, I also understand HPV-linked throat cancer, specifically back of the tongue SCC can be difficult to spot and is quite good at avoiding detection which is typically why it is diagnosed in it's later stages when other symptoms start to present. I am concerned that could be what I am dealing with. How much comfort can I take in the nasendoscopys not revealing anything despite these other symptoms (sore throat, difficulty swallowing, hoarse voice requiring frequent throat clearing, and swollen lymph nodes). The nasendoscopys I received appeared to me (a layman) fairly thorough, checking my entire sinus cavity, throat, and voice box. However, there are plenty of posts on this forum of folks who had clean nasendoscopys only to find out later that they had advanced stage HPV-linked throat cancer. That is giving me the most concern.

Thanks again for your help and I admire all of you on this forum. The uncertainty of all this is so completely disconcerting to me.


WorriedSick101
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Can I suggest that you get a second opinion with another doctor at a CCC if only to put your mind at ease? Get yourself referred to a top CCC rather than a local hospital to make sure your doctor giving the second opinion has seen a lot of oral cancer and can inspire confidence in you.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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What is a CCC?

Both my ENTs have experience with oral cancer (not just ear tube guys), but I can't shake the feeling that something is off, even with the two clear nasendoscopys.

Edited to Add: CCC = Cancer Care Center?

Last edited by WorriedSick101; 04-03-2018 01:12 PM.

WorriedSick101
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From everything you described, to me it seems like you were given very thorough exams. Getting scoped is why Im saying your exam was very thorough. That doesnt always happen when someone is young and does not present themselves as being high risk or have a cancer history. You got to experience one of our OC patient "joys" of what its like to be a cancer survivor. Being scoped is NOT a fun experience. Its amazing at the things one can get used to when necessary. Since cancer is microscopic and too small to be detected by the naked eye, scopes can easily miss any small irregularity. If its base of tongue cancer and in its earliest stages then it could easily be missed if its inside the base of your tongue. That would not be visible being that small and cant be seen even when using the scope. You are correct with base of tongue cancers are difficult to diagnose since they often are not seen. But... they are rare too and even if you had the right HPV strain, you still may never develop HPV+ oral cancer.

Sorry, I must have missed the part that you did not have a sore/spot/tumor in your previous post! Without a tumor/spot/ sore/ or an exact specific painful area your doctors would not have anything to biopsy. If the tumor is located inside the skin without anything showing on the surface then the doctor wouldnt be able to see it, even with a scope. Unfortunately, there are patients who have OC without their doctors finding a primary tumor. Those patients are very rare too! Do yourself a favor and stay calm. Try your best to avoid getting too far ahead of yourself by inserting yourself into the group of OC patients with no primary tumor. You can only take this one step at a time. It cant hurt anything to have a third, well-qualified, ENT check you out. It sounds to me (with my un-medically educated opinion) you were thoroughly examined and scoped by 2 doctors who both came to the same conclusion . If you sit and wait for a couple weeks to get rechecked that should be ok. In order to feel more productive and pro-active make an appointment with a third well-qualified ENT. Just make sure you get thoroughly checked by the third doc before going back to the other doctors.

I hope this helps to clear things up. Best wishes with everything!

PS... We have a saying around here... its NOT cancer until the biopsy says it is. We frequently have new members join our group after having a couple symptoms, they're convinced they have oral cancer. Luckily, a biopsy reveals the majority do not have cancer. Cancer is a thief!!! It steals your time and keeps you from being happy and living your life without worrying. I know its very difficult to not worry, but right this minute you do NOT have a cancer diagnosis. Make the best of your time and do positive things to avoid letting cancer get away with stealing your time. Ive been in your situation and completely understand how nerve wracking it is to not know for certain if you have cancer or not. Fortunately, Ive had a great many more negative biopsies than positive ones. Do your best to be strong, stay busy to help overcome that horrible feeling of dread. In the long run, less worrying will make you feel better.

CCC is a Comprehensive Cancer Center. Thats the top cancer facilities where they use a team based approach so all the professionals are on the same page. They bring everyone together including the patient and caregiver if they'd like to attend the meeting. Thats called a tumor board meeting. Its been scientifically proven patients who are treated at CCC's fare better than those who go to small regional hospitals. The doctors at the CCCs are the brightest physicians who are the most experienced in complex cases. Being treated at a CCC for example is to get treated by a team who has over 50 OC patients a month vs the small regional cancer facilities may see one or 2 cases a year so they are not as experieced.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Christine,

Agree that without a sore or spot, you can't have anything biopsied out of the throat. However, with the swollen lymph nodes, couldn't you simply biopsy tone of them? In my head (maybe incorrectly), if they aren't seeing anything during the scope, but they find something in the lymph node, hopefully, it will still be at an early stage?

Thanks again.


WorriedSick101
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I think this will help you to better understand the entire OC process, including biopsies. Best thing I can tell you is to ask your doctors. I wouldnt know if the lymph nodes would appear different depending on if the cancer moved to them or if it originated there. I would think finding the primary tumor would be very important in helping the doctors to know what areas to focus on with treatments so they can completely eliminate the cancer. If the cancer has gone into the lymph nodes, it had to come from somewhere unless it started in the lymph nodes. But that info is something I wouldnt know. As someone who does not have a medical degree, or any medical training these things are a bit too in depth for me. Your doctor with all their years of education, training, etc will have to explain this type of thing to you.

Main OCF Site, Understanding section


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Dec 2017
Posts: 11
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Joined: Dec 2017
Posts: 11
Hello,
Boy, I feel your anxiety. Very understandable. Getting on this website and fishing around is frightening in and of itself!. I agree with the above posts, make your way to a comprehensive cancer center (CCC) and ask for a node biopsy.You will then have some concrete information. My husband's scope procedure revealed nothing abnormal. No throat symptoms, just the one swollen lymph node which persisted after a course of antibiotics. His first needle biopsy was negative for cancer, but because they didn't like the volume of aspirate, and didn't like the findings: necrosis, they did an ultrasound-guided biopsy which produced more tissue to examine. The pathology showed him to be strongly positive for HPV 16, and the Pet scan showed uptake in one tonsil, so he had robotic bilat tonsillectomy.. Back to work now. Rough post-op course tho. Good luck to you, hopefully with your youth, it's nothing. Be your own advocate and ask for a biopsy just to ease your mind. Hope it all turns out to be nothing.


Melba
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Thanks Melba. That's the answer I was looking for. Sounds like you went through it with your husband and a personal experience similar to mine is what I was looking for.



WorriedSick101
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