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Joined: Jan 2019
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Hello,

I am Kalle a 28yr male from Germany.

Fightning since 2016 against anything strange. Went to "thousands" ENT since this time. One tonsil (left side) is a little bit bigger then the other but not really huge difference.

I have lymph nodes on the left side, many with 1,5cm (oval) biggest one is 2,4cm x 1,08cm (oval) and very deep, only visible in MRI nog in ultrasound. It is not visible when I look into the mirror, so no "lump" as many of you call it. Also under my left jaw there is one with 2,2cm x 0,9cm x 2,2cm..

Since mid 2017 I have constant little pressure on my left ear, sometimes it goes into pain for 2 days. My left face side seems to be taut. Since 2016 I have no appetite/hunger but I am still eating the same amount of things and I am continously losing weight.

Now one ENT said this red thing around your tonsil is not OK, we do a biopsy and maybe a FNP from one of the lymph nodes.

If I would be HPV16 positive, and they don´t find cancer, can they still see if I am HPV16 positive when they take this biopsy?

Thank you in advance for your help and sorry for my bad English (doin´ my best..)

BR,
Kalle


Last edited by gmcraft; 01-28-2019 06:53 AM. Reason: Removed image
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Hi Kalle,

Welcome to the forum. Please understand that we are a group of patients and caregivers who do not have any medical training. We are hear to share our experience and the things we have done to cope during treatment. We are unable to diagnose and, truly, you won’t want us to as it will be very irresponsible of us.

It is impossible for us to tell what your medical problem might be and your best bet is to seek medical attention. Since you mentioned having seen ENT’s, maybe you could be direct with your doctors and ask for a biopsy and or get tested for the presence of HPV virus in your body. Anything else will be guess work and it won’t help you in any way.


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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Kalle, welcome to OCF!!

If your "red mark" tested positive for HPV, that does NOT mean it is cancerous. With approximately 200 strains of HPV, you would first need to have the "right" type of HPV. Its usually #16, 18 and 10 that are the ones that might turn into something serious down the road. Having one of the "bad" strains of HPV does NOT mean you would ever contract cancer from HPV. In fact most adults will have one form or another of HPV at some point in their lives but the HPV clears their body without ever causing any serious medical issues. Some will carry HPV around for more than a decade with the HPV laying dormant until it goes away on its own. HPV usually has such minimal side effects most who have it have never noticed any symptoms. The chances of an adult who has HPV has it go on to turn into oropharyngeal cancer is very slim, less than 10%. I suggest you read more about HPV by clicking on any of the HPVs on any post.

As far as your "red mark" concerns go... a biopsy will tell you what your "red mark" is. I do not know how medical systems work outside of the US (very limited knowledge about Canada also) but I cant imagine getting a biopsy would be a bad thing. This is especially true as you have noticed something isnt right quite a long time ago. The sooner you take the steps to get a diagnosis, the sooner you can begin to fix whatever is wrong.

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
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OC 3x in 3 years
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Hi guys,

i will be at one of the best ent clinics on thursday morning for a check.

What should I ask for? A biopsy of the nodes/spot or a PET?

Just questioning: I have those nodes since 2016 and they are still the same size. Is that a good sign?

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Hoping your results were good since no further post but please let us know how your doing. Fingers crossed all went well.


Wife and cheerleader. Right sided BOT dx 2/25, surgery 3/7 for tumor removal (clean margins) 2 lymph nodes 1 pos for ECE (ugh), pT2N1M0 HPV POSITIVE (one small blessing in this nightmare), Stage changed to Stage 1 due to diffuse and large HPV status. tx plan 33 radiation, 5 cisplatin chemo to begin 4/12.

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