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#177996 03-07-2014 02:57 AM
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Hi peeps,

I have landed at this forum because I am very worried that I may have cancer at the base of my tongue. Specifically the kind caused by HPV16. This is based on the symptoms I have been experiencing the past three months.

A bit about myself; I'm a 28 yr old white male living in Aus, never smoked, drank socially from 18 to 22 and barely touch alcohol now.


For the past 3 months I have had a sore throat and coughing up a small amount of really thick clear 'glue-like' mucus. The throat pain is on the right side near the joint of my jaw and ear. I have also experienced some trouble swallowing.

My GP initially treated me with anitbiotics and steriod nasal spray for 2 months. Neither of these helped so he then ordered a CT of my sinus which showed minor mucosal disease confined to the maxillary sinus. I have been to two ENTs both of which put a scope down my nose and could not see anything sinister. However, these ENT did not specialise in cancer.

I just had my second visit with the first ENT who has requested an ultrasound of my throat and a CT of my throat. I'm concerned about getting the CT as I have already had one of my sinus and think the exposure to radiation might put me at risk. Should I get the CT done or request an MRI instead? I'm not sure what imaging is better. From what I read on the web MRI is.

I have organised to see another ENT that seems to have more knowledge when it comes to cancer. Just want to know what I should do and what steps I need to take to rule out anything bad, which is what I am hoping for.

Thanks
J.


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Hi J - Glad you found this place so until someone else gets to you with more direct experience than I've had, do check the main pages of this forum - especially the Diagnosis page. I was the caregiver to my son, who was 33 at the time, he never smoked - and was diagnosed (after a biopsy) with squamous cell cancer under his tongue. It may not be anything serious at all in your case, but your health is very important so it is better if you can see en ENT with a lot of experience with Oral Cancer. Only a biopsy can tell for sure if it is or not. It's also a good idea to be treated at a Comprehensive Cancer Center where they use a team approach for the best chance of successful treatment. Let us know what happens, ok?


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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J - welcome to the family.

Your symptoms are exactly how mine started and yes I was diagonosed with tonsilar cancer caused by HPV-16. In fact the terms you use to describe the gunk in your throat are the same terms I used.

At this point, don't be worried about the additional exposure to radiation from the second CT to that area. I am 10 weeks post treatment today and have already had at least 5 CT's of that area. I know you are bothered about the exposure but that additional exposure will be nothing compared to the damage cancer will do if mis-diagnosed.

So, make sure you get with an ENT who knows and understands cancer. At a CCC (Comprehensive Cancer Center) would be best place because they know exactly what they are looking for and have seen it and treated it many times before. On the OCF website pages you will find a list of CCC's.

Don't mess around with this. Time is of the essence. If you have cancer and if it was caused by HPV-16 you actually stand a better chance of good outcomes than if it wasn't HPV.

Keep us informed of your progress. And once again, welcome to the family.

Tony



Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

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Thanks Anne-Marie ad Tony. It good to hear from people who have experience with this. I feel very alone most of the time and believe I am becoming depressed.

I've decided that I will get the CT scan done. I went to my dentist today who was very helpful. Her husband is a radiologist and she is going to get him to call me to speed up the CT scan process. I'm also booked in to see a more experienced ENT on 19 March.

I feel quite upset. I actually have my wedding in 3 weeks and then honeymoon 2 weeks after. I'm really scared about this being something bad. My fiance says its probably not but I can't help but worry. While I haven't been diagnosed I never thought I would ever face even the thought of something like this before I hot at least 50.

Tony, what other symptoms did you have and how were you diagnosed? My current ENT says my tonsils look small with no signs of cancer? Would the ENT see the cancer with his scope or could be deep in the tonsils and not visible? Also, will the CT pick it up? Sorry for so many questions at once. I'm just so scared right now.

Many thanks
J.


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Also, I live in Australia. I don't know where to go for a comprehensive cancer centre. I have nasal congestion too. Was that a symptoms you had?

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Hi J, where in Australia are you?


Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good.
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Hi Joshua,
There are quite a few Aussies here from Victoria.
Great that you are being proactive and getting tests and appointments lined up. I understand how stressful it can be especially with your upcoming wedding but try not to freak out too much until the results are in. I know that can be easier said than done!!
If you need a CCC I googled "comprehensive cancer centres Melbourne Vic" and there is quite a bit of information.
Best wishes from Sydney
Gabriele


History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family

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Thanks so much for your posts. Today was eventful. I decided to go to the hospital after stuggling to swallow my breakfast and having pain. They took bloods and an ENT looked down my throat through my nose again. This ENT also said everything fine but was concerned no diagnosis has been made after 3 months. They have arranged for an MRI on wednesday and a follow up consult on Friday. I was prescibed a bunch of pain killers and given a steroid injection for the inflammation. The ENT at the hospital said it is likely they will have to put me under and have a closer look at my throat. on a positive nost the pain in the aide near my ear has subsided and Swallowing has improved slightly though my throat is still sore and the glu mucus is still there. I think perhaps the meds they gave.me are working. I'm a bit confused as to why they can't see everything with the other scope which I have had 3 times now. Hoping some on here can answer a few questions for me.

1. why can't they see everything with the nose scope and have to do one while I'm asleep.

2. What are the statistics on this being cancer especially since I am still relatively young, being inly 28?

3. How is oral HPV cancer diagnosed? Everthing I read says a biopsy is needed but my ENT says from the scope so far there is nothing to biopsy.

4. Will the MRI detect cancer if it is there? I understand it won't diagnose frim my limited reading and a biopsy is needed for that?

Thanks in advance.
J.

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Hi,

Being in the something is wrong but don't know what it is stage is unsettling to say the least. The old saying around here is until they say it is cancer then it is not.

A biopsy is the only way to know for sure if you have cancer. If the doctor sees anything on the next exam then ask if they will biopsy what they see. If they find nothing on a visual exam, then a PET/CT can identify any hyperbolic tumor which may indicate a cancer.

For now, try your best to remain calm but concerned and diligent to follow up until the problem is diagnosed. Remember, it is NOT cancer until the test proves it is.

Good luck,
Don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
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Thanks Don.

It's been very unsettling to say the least. I have my MRI in a couple of days and a consult with the ENT at the hospital a couple of days after that. I have been told they will do laryngoscopy. I'm also booked in to see a very experienced ENT on the 19/3, Associate Professor Bernard Lyons. Anyone know of him?

Also, should I ask for a PET/CT if the other tests come up clear?


Thanks for your advice that it is not cancer until tests prove it is. I'm starting to switch my thinking along these lines now, besides I have my weeding in less than 3 weeks and not even cancer can take that from me.

Cheers
J.

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JJ - I sent you a PM to answer the question you asked above.

Sorry it took so long to do so.

Tony


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

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Quick update. I had an MRI today and also an ultrasound. The technician doing the ultrasound said there was nothing urgent which I assume means nothing serious from that perspective.

The MRI was a bit scary. I don't have the results yet. I was told they will be ready tomorrow. I was originally told I needed to have the IV dye injection but when I went to get the scan they said they will take some images without and only give me the dye if needed.

Can someone fill me in on why they didn't do this? Is it likely because they didn't find anything to take a closer look at? This had been my assumption.

And thanks Tony, got your PM. I'm quite inspired by all the stories I have read on this forum so far. Such positive and strong people.

Cheers
J.





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HI there sorry I didn't get to welcome you before now.

MRI results are normally available withing 24 hours - as are CT and PETs. NO need to wait a long time for a visit to the dr. Call and ask for the results.

Also your medical system is similar to ours here in Canada. Go to your family dr. tell them your concerns, tell them what you've had done, and ask for a referral to an ENT (one who is familiar with cancer) The down under members can best tell you a good cancer hospital in your neck of the woods assuming you need one.

You are quite young to have HPV related cancer. Usually it happens to people in their late thirties / forties or older. I guess it takes a long time to manifest itself.

Non HPV related cancer is a possibility but usually that is found in the oral cavity. Maybe know this will ease your mind a bit. Regardless you do need to find out what is happening so a good ENT should be your first stop. hugs and welcome and hoping for an all clear.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Thanks for the info Cheryl. I spoke with my fiance about it. She is a medical scientist, currently doing her pHd. She was quite good at explaining a few things to me and that the chances of me having HPV related throat cancer are extremely low. She even referred me to CDC data on HPV cancers. See here:
http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6115a2.htm

Like you explained she also explained that HPV related cancer take time to manifest. Though she said it takes along time to cascade to cancer. She also said that though they find HPV in tumors and call it HPV cancer it is likely that there are other contributing factors (not yet known) that create the environment for the tumor to form.

The ENT at the hospital actually phoned me this morning and told me there was no abnormalities on the MRI which I was told was very reassuring and if there was something the chances it was missed are very low. He did say I obviously have an issue and the cause needs to be found. I guess I will have to keep at it until diagnosed

The hospital ENT told me to keep my appointment with with the another ENT I made a few weeks back which happens to be his boss.

Things seems to be looking positive so far. Will keep this thread updated as things progress.

Thanks so much for your support





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Not sure why they didnt use the dye. I havent had one of those for a few years. I seem to remember the tech adding dye part way thru the procedure.

The CDC link is almost 2 years old so it may contain some outdated info, especially using numbers from 2004-2008. Im not sure if more recent data has been published.

One of the references was Dr Maura Gillison. OCF has worked with Dr Gillison for over 10 years, funding her research on HPV.


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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I was also under the impression they would add the dye part way through the procedure. They did tell me that this would depend on the quality of the images.

I'm assuming the images were clear enough to draw a conclusion. In my case that there were no abnormalities. What are your thoughts? I don't know enough about radiology/MRI and their processes to draw any conclusions apart from that they have told me their was no abnormalities. I'm assuming that if something showed on the first lot of images without the contrast they would then inject the contrast dye to get a better image of the problem. Since nothing showed up then there was nothing to have a closer look at.

My partner, who I have been with for 10 years is going for her pap smear and said she will be asked to be tested for HPV. SHe doesn't think she will test positive she has not had any partners before me and I only had 2 which were in my teens.

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Should I get the CT scan done in addition to the MRI?

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I wish I had the background to be able to advise you with this. Unfortunately I do not have any medical training, I only have learned from this forum over the past few years.

Good luck!!!


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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An MRI is actually a better image so I am told. I have never had an MRI with contrast it's usually a ct they do with or without contrast. I'm sure someone will be along to correct me if I am wrong. Everything sounds good. Best of luck and do keep us updated.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Just thought I would update here about MRI after doing some digging. I have been told by a radiologist that contrast is usually only used:
1) post surgery
2) if there is a previous history of cancer to find very small tumors that most likely wouldn't cause symptoms
3) to further investigate a finding on images initially taken without contrast.

In my case I believe because I have no history of cancer and the initial images did not show anything that warranted further investigation.

I was also told that CT scans are less accurate than MRI scans. If a finding shows up on a CT then it will definitely show up on the MRI and possibly more. Having said that this all comes down to the skill of the radiologist. I'm going to take all my scans to a friend who is a radiologist and have them looked over again. Then I am back at my ENT. Hopefully I can get to the bottom of this soon.

Thanks

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Hi again

I saw another ENT yesterday (so thats 4 now) who said my symptoms are not suggestive of anything sinister and the CT, MRI and ultrasound scans that I have had done support that this is the case. He looked in my mouth and ears, felt around my neck but diddid not scope me. The other 3 did however and could not find anything.

He suggested that the thickening of my mucus could have been triggered by a viral infection (which I did have towards the end of september that was quite bad) and its a matter of wait and see. I've been put on Avamys for 1 month to see if anything changes. He basically wants to manage the symptoms and said it could be lifelong.

Thanks so much for all your help with this. For now I am going to enjoy the lead up to the wedding and then 2 weeks on my honeymoon in the Cook Islands.






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Awesome... have a great time... ;o)


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Great to see that you have been so proactive with your issues.
Hopefully all is good and you can now enjoy your wedding.
I think the Cook Islands is a great choice for a honeymoon.
Relax and enjoy cool
Gabriele


History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family

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dear JJMARTIN

I am totally with you on this. I have been reading this forum from time to time and when I spotted your post, the conditions you describe seem identical to mine.

I have had mild pain to the right side of my throat and the glue like saliva which becomes better or worse from time to time, over the last year and a half or so.

So far I have had
- meetings with 2x GP's, 3x ENTS
- 4x Laryngoscopies
- Ultrasound
- Anti-fungals
- 4-5 kinds of Antibiotics
- NO DIAGNOSIS! (Apart from one ENT who said its Globus. When I told him i don't feel anything inside my throat and asked him why do I have skicky saliva that makes me gag he said its purely psychological and he sees people with it every day. Then he proceeded to quickly wrap up my case and send me home. Another doctor told me I should just live with it.
- Some doctors will call this "Globus Hystericus". That is NOT a diagnosis and merely a way for them to say they don't know what it is so its your mind causing it. Take those words with a grain of salt.

Trust me, it's not gonna be easy figuring out what could be causing this and some doctors will just not want to spend the time since it doesn't look serious to them.

Some things I have found out over the year:
- Dairy seems to make the glue saliva feeling worse
- Exercise also seems to make it worse.
- When I travel back home, it seems that the glue saliva decreases dramatically while the pain on the right side of my throat worsens.
- There are times where, right after eating something the glue like feeling makes me gag or even throw up. Strepsils help a lot!!!
This makes me think that there may be an environmental factor. Symptoms change on Warm, Dry climate (Mediterranean) vs wet, humid (UK)


Let me also refer you to my post last may:

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=164784&#Post164784

Perhaps we can combine our experiences and come up with at least a viable way to live with it, or even eventually figure out what could be the cause of this

Good luck with your honeymoon, I am getting married soon as well.

Best,
A

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Hi A,

Globus Hystericus is a diagnosis indicative of GAD. With the number of tests and doctors you've seen they would have found something sinister. If in fact this was sinister, you would be pretty ill be now based on your OP last year. I hope you get to the root of the issue and find relief.

Positive thoughts


57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
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Hi fishmanpa,

Indeed so, if it was something sinister, it would have gone progressively worse since last year. It is none the less something that more and more people seem to be developing over time and there hasn't been a clear diagnosis.

I am definitely trying to find the root of the issue. Just letting JJMARTIN know that its likely something that is not serious.

I read your post today fishmanpa. Positive thoughts!

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Thanks for the posts athosprv. I'm back from my honeymoon now and feeling a little refreshed. Wedding was amazing.

My symptoms did not seem to change when transition from a dry hot climate to a humid hot climate. The mucus is really annoying. Doc says its post nasal drip. My response was post nasal drip isn't a disease its a symptom of a disease and besides that it doesn't drip, it just sits there until I hawk it up. I told him I was sick and tired of the run around I have been given and demanded a sputum sample be taken and tested. I'm going to get this result Thursday.

Not long after the MRI I noticed a small lump on the back of my neck near my hairline. GP told me it is an enlarged occipital node and not likely related to my current symptoms. Its been there for about 5 weeks, its soft, somewhat mobile and painless. I've scheduled a meeting with my ENT this Friday just in case. I'm not letting him send me on my way until he has written me a referral for an MRI of my throat and sinus with contrast and specific instructions to look to cancer.

I'm armed with a lot of info on throat cancer specifically HPV related throat cancer because if I have it it is probably that. I feel the best way to see through any BS the ENT uses to get me out of the door is to be informed. I've read countless journal articles now and grabbed as much information as I can.

I feel happy all my tests have come back negative but also feel that I really need to pursue this until I feel comfortable not the ENT and GP. That is also the advice I have drawn from this forum and people I have spoken to about it.


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Hi from Brisbane JJ. I'm no expert but this is a very common type of cancer and it something any ENT would diagnose every day.

I Googled myself to death during my diagnosis. Survival prognosis, complications, treatment side effects, and worst of all of course is doing image searches. I came to the conclusion Google can't help you with the diagnosis but can do a great job scaring the pants off you. There are cancer factors that might look like they fit your case but often there are other factors that may not be in that article that the ENT uses to eliminate that diagnosis.

I've found Google can be useful for processing and understanding what the doctor is telling you. There is a LOT of information and concepts to absorb with cancer treatments.

You can always get a second opinion, but I'd be very surprised if an Australian ENT specialist did all those tests and missed something as common as a HPV cancer.


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
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Thanks Dave, I've been to 3 ENT's now, 4 if you include the one at the emergency dept at the hospital.

I think what I need to do is ask the ENT why is cancer not being investigated more thoroughly. I'm sure they have their reasons.

The reason they have given me so far is that my symptoms are not suggestive of cancer... Then I google them and they are. Then I think maybe I told the ENT the wrong description of my symptoms which led to them thinking this. When the ENT says things like your too young and healthy to have cancer I get frustrated because from what I have read it is a very real possibility at my age. It makes me think they are not taking things seriously and possibly overlooking things.

I'd like to hear your story Dave, particularly how you came to be diagnosed. What alerted you to go to the doctor etc. I've also read that HPV throat cancer is much more responsive to treatment with a much better prognosis 75%+ 5 year survival (obviously this is on a case by case).

Cheers
J.

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JJ, Google can be a scary place! Put in enough details and a 75 year old man could be told he is pregnant.

Im not sure of your age but Ive seen several cases of OC in younger patients. Several in their early 20s and even a few diagnosed at only 17 and 18 years old. Over the past decade or so the demographics of OC has changed from being an old man who is a smoker and drinker to younger healthier patients. Unfortunately there seems to be a learning curve at many in the medical and dental professions to adopt these changes in the average OC patient profile.

I hope your symptoms turn out to be anything except oral cancer. Its a hard disease with difficult treatments to get thru.

Best wishes!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
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J I had a sore throat that persisted for a few weeks, and a lump in my neck. The lump got quite large (36mm), but because it was soft and deep in the neck it was not obvious. I knew something wasn't quite right but I wasn't feeling sick enough to go to a doctor. I went to the GP for a checkup and mentioned it. He noted an "asymmetry" in the throat where the tonsils used to be, as well as the lump in the neck. A CT, FNA, MRI, bone scan and PET CT later and I was thoroughly diagnosed and sent on the treatment roller coaster.

I am sure there is more to the ENTs discounting cancer than just your age. This type of cancer is pretty well understood, and has particular behaviours in how it grows and spreads. Also in younger people I think it would progress fairly quickly, being fed by an active metabolism. Again I am no expert, but I think if you had what I have for the 5 months you have had symptoms, it would have grown to an undeniable stage in you by now, and it hasn't. Perhaps the ENTs just need to explain the reasons they are discounting it better?

You can take some solace that whatever the cause of your current symptoms, you'll be under medical supervision while that is under treatment. Doctors will be feeling your neck for bumps and looking down your throat regularly and will be able to identify any changes.


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
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Hi Christine I'm 28. Though reasonably young I know it is possible.

Dave you mentioned metabolism. Mine is super quick. I workout regularly and eat 6-8 times a day. I have noticed that feel somewhat more fatigued than usual particularly more recently and most notably while training. I keep telling myself it is just the stress that is doing it. It also seems that when I take any sort of antibiotics (as gross as this sounds) I break out in anal and penile fungal infections. I then treat it and its gone again. I also freak out about this and went and got a full STD workup which all come back negative. At once point I was so concerned about HIV that I got 2 antibody tests and then made my doctor order a viral load test. All came back negative.

Your note on the lump being soft is interesting. I have come across a paper that stated HPV throat cancer tend to metastasize to lymph nodes in a pseudo-cystic manner.

What I know is that there is something definitely taking its toll on me and I really need to pursue it. Like you I feel like something just isn't quite right. I have a meeting tomorrow with the ENT which I will raise all my concerns. I find it difficult to express them as I feel like I will just make a fool out of myself because I have work myself up over it.


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Hi J,

I revisited this thread and read through the posts. Of course no one here is a doctor but we've all had cancer.

In you OP you stated you've had symptoms for three months. It's just my opinion but after 5 months, 4 ENTs, tests etc., you'd be getting pretty ill by now. You're young, don't smoke and barely drank. While it's possible to get OC, this isn't presenting as such.

I had no symptoms as did many but I did have a node that grew. It was hard and immobile. From August 2012 when I first noticed it along with a sinus infection until November 2012 when I was diagnosed, it grew. By the time I stated treatment I was sick and I felt sick.

I know you don't feel well. Stress and anxiety concerning a variety of health concerns will and does present itself in physical ways and takes a toll. It's just a suggestion but perhaps pursuing that avenue would shed some light on your symptoms.

I hope your visit to the ENT is unremarkable and you get to the bottom of things.

Positive thoughts and prayers.

"T"


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A lot of HPV SCC patients discover their cancer because they find a painless lump on one side of their neck. The lump is often biopsied thru a FNA. I had no other symptoms other than my totally painless lump.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Thanks for these posts. I feel reassured by them. I am probably just stressing over nothing. I meet with my ENT soon. This thing is driving me nuts. I was at my doctor last night as my wife was feeling quite sick. He checked in with me as well and said it is likely I have something similar to vasomotor rhinitis and this could be a life long thing. He said the maxillary mucous retention cysts are likely from this. He said he would easily diagnose this based on my test if my mucus was thin not thick. my sputum test came back normal though the report came back with a comment that the mucus was remarkably viscid.

All in all you are probably right and that is the reason my ENT thinks along those lines too. I do not have typical symptoms of cancer and on top of that I have a normal blood workup, a sinus CT, neck of my MRI and 3 ENTs actually look inside my nose and find nothing.

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The ENT had a look at my MRI and said is showed nothing. I asked him about HPV throat cancer and he said that I do not have HPV cancer and that he sees this all the time and would know if it was there. He then looked dowm my nose again and found nothing. The spray he uses before inserting the camera in my nose seems to turn my mucus runny. He said there was nothing sinister and I need to switch from chasing a diagnosis to learning to live with it. He felt it might be stress related and he sees cases like this all the time.

While I haven't resolved this completely I will have to take comfort that no diagnosis is better than getting a bad diagnosis. I'm going to try and telax more. He said focus my attention on something else because constantly thinking about it will only make me upset, worried and will exacerbate the problem. I guess there is nothing I can do.

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J that is great news. As I said, ENTs see this cancer all the time and would not discount it lightly. The mucous thing I would fiddle with the diet maybe? See if some things make it better or worse. Plenty of avenues to Google for more pleasant things like food and stress relievers than oral cancers.

Next thing you put into Google, make it "confirmation bias". In my experience its a real phenomena and something that strengthens your belief in something to the point you get overly stressed about it, and can end up making poor decisions. Part of my cancer journey has been learning to sort through information better and learn what I should pay attention to and what I should disregard.


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
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Thanks Dave. I'm still not 100% on it being stress related but nonetheless I am learning to base my emotional response on the facts from tests rather than my own imagination. No tests have concluded anything sinister to the point where my ENT has completely ruled it out. It has been 5 months from the onset and my symptoms have barely progressed.

I also asked my ENT about vasomotor rhinitis. He also said I do not have this. It is common in old people and I do not have symptoms to suggest this is it.

For now I'm going to try one more nasal spray and look to my diet.

Many thanks to everyone on this forum. I'm glad I ended up here. Everyone has been so supportive and helpul along the way. I wish you all the best.

Goodluck with the treatment Dave. I will keep you and others on this forum in my prays.

Cheers
J.


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I would chase candidas, mucus management and enjoying life. You'll gain from all 3.


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I kind of have a similar problem, at Christmas time I said to my mum something is not right in my throat I think I have throat cancer or something. Anyway I finally went to the gp and they referred me for a ct scan, had that and found a swelling on the bot, so then I had to have a barium swallow, which showed the swelling again, they called it a mass in the results. Then I had to have a thyroid scan because I had my thyroid removed when I was 17 and the ent thought it was a leftover piece of thyroid. It wasnt so I finally got a biopsy done and it said it was all clear, but they didn't test it for HPV. So last week I had my second Ct scan and the lump is still the same size but they mentioned nodes in my neck. The ENT thinks its nothing and doesn't seem to care that I'm having trouble with my breathing. I went and saw my gp and he is going to refer to a dr in Sydney so I'm quite happy about that.. I jut wanted to let you know you aren't alone in your worries jj


Ct scan showed lesion on BOT 30/12/13, barium swallow showed mass on BOT 10/1/14, thyroid scan ruled out lingual thyroid 14/2/14, biopsy on BOT 20/2/14, biopsy all clear diagnosed lingual tonsil lymphoid hytrophy. Did not test for HPV. 29/4/14 CT scan on chest and neck, lesion or mass on BOT not changed. 2 nodes 7mm noticed on left neck, 1 tiny node 3mm on chest was noted.
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Tabi the GP referred you to an ENT, who said it was nothing so the GP is sending you to another doctor? What kind of doctor is the one in Sydney?


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
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He is sending me because I asked for a second opinion. He is a ent that works out of st Vincent's. I feel there is more to mine and it want to be certain, it's obstructing my breathing so this ent can remove it, if it needs to be removed. The ent I have been seeing said he would not remove it, he'd send me to Sydney to get it removed.


Ct scan showed lesion on BOT 30/12/13, barium swallow showed mass on BOT 10/1/14, thyroid scan ruled out lingual thyroid 14/2/14, biopsy on BOT 20/2/14, biopsy all clear diagnosed lingual tonsil lymphoid hytrophy. Did not test for HPV. 29/4/14 CT scan on chest and neck, lesion or mass on BOT not changed. 2 nodes 7mm noticed on left neck, 1 tiny node 3mm on chest was noted.
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Chasing Candidas - This is what I plan on doing. I have had issues with it for about 2 years though it hasn't been as bad as lately. Then in sep I got real sick with what felt like a stomach bug/bad flu for about a week. Doc said it seemed liked ARS symptoms and scared me in to thinking I had contracted HIV somehow which in the back of my mind knew it was impossible as I have been faith with my now wife for the past 10 years. That didn't seem to stop my wild thoughts however. At the time I was working 12+ hour and on and off planes interstate every week. Panicking about HIV kept me up most nights googling. I basically ran myself in to the group, lost 10kg (80 to 70) in a matter of 2 weeks which fueled my wild imagination even further.

After seeing another doc for the sore throat I was prescribed a couple of short courses antibiotics. Fungal infections ran rampant and then I developed the mucus problem. Which the docs then treated with over 2 months of antibiotics before the CT and referral to the ENT.

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Sorry to hear your worrying tabi. I know the feeling all to well. I am a bit better now however, though this mucus things is annoying me still. I feel more relaxed. I still have another appointment with the fourth ENT. While I feel it is probably nothing serious it doesn't mean I'm going to give up chasing it. I have symptoms so that means there is a cause. Just because it may not be treatable does not mean I should not know what it is. That is the same advice I would give anyone.

Your results are very encouraging however. Could you ask for the biopsy to be tested for HPV. I'm don't work in a path lab or anything but I'm sure biopsies are kept on record for future tests if needed. You could ask about that.

Also, with removing the lesion I think the ENT has said this because it might cause more issues that you already have. My reading found BOT surgery can create issues particularly with swallowing and speech.

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