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Joined: May 2013
Posts: 7
ntc
Member
Member

Joined: May 2013
Posts: 7
I wanted to follow up on my situation as I said I would. There are so many internet threads that never seem to tell what happened. In my case, I went to my ENT doctor here in Japan two more times. He seemed to be getting irritated with my concerns (I kept asking to get an MRI -- which you need a referral for) and continued to say that there was nothing seriously wrong with me. Perhaps he was right. My ear has opened up 90%, and I am feeling better overall -- though not perfect. I still am having to clear my throat a lot throughout the day. And, I still have a sensation of something in my throat when I swallow. But I feel like if it were C, then it would be progressively worse, and would have been noticed by the ENT. In short, I'm trying to calm down, because it was really 3 months of stressful worry for me. I wanted the MRI to help confirm that things are ok, but I'm trying to deal with not having that. It's everything I can do to not go to the doctor again.

Clearly, I am not over the concern. As I said, I know I've been exposed to high risk HPV through my own unfortunate lifestyle choices (i.e., oral sex). I've stopped oral sex with my wife (too bad...), and I've stopped drinking completely. At this point, I am trying to do a self-exam because it makes me feel like I am at least taking precaution. I wonder though, is a self-exam for HPV+ oral cancer even useful? I read online that most tumors are in places that cannot be seen...the ENT here said that the best way to check myself is by feeling around my tongue with my finger, but it seems like the tongue goes too far back for that to be of any real benefit...

Would any of you say that oral cancer self-exams are worthwhile? Where should I feel?

I have found that here in Japan there really is almost NO information concerning the HPV link with oral cancer. It is a shockingly different situation than the States where I can see many hospitals creating specific treatment plans for people with HPV+ cancer. Needless to say, it doesn't make me feel any better to be here. And, it's not something I can really bring up with anyone.

Anyway, for those reasons, I wanted to thank you all so much for your support with my worry. Without a doubt, your responses to my situation made me feel less alone. Christine's comment about "If you must think about the "what if's" then limit yourself to say 5 minutes then "change the channel" and think of more positive thoughts" was so helpful. In fact, I'm still doing that.

I just appreciate all of you for your courage and help to both people like me with concerns and more importantly to people who have been diagnosed with OC.


38 yr. old American male, live in Japan. Undiagnosed as of 10/4/13, but have had symptoms since 2/28/13.
Joined: Jul 2012
Posts: 3,267
Likes: 4
Patient Advocate (old timer, 2000 posts)
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 4
I found all my recurrences in the cervical neck. I would just feel something strange, wake up at night and go right to the lump for some reason, which all tuned out to be cancerous, on FNAB, pathology, PET, resulting in surgery, rads or chemo radiation Right before I was have one SND, and was in preop felt another enlarged nodule, told surgeon I have another lump. You should have seem his eyes. , ENT was not sure to take out, and decided last minute before putting me under, decided to take it out too. under to take it. a already had a radical neck dissection, so there was not much left. It was cancer too, but free form or roaming cancer, not the lymph nodes, a month late, felt spot told new doc to, turns out cancer was in the skin, epithetical lining under skin, showed CT and was had a special surgery, IORT radiation, and pec flap. More chemo and rads six weeks later. Most cancers are found by the patient.

Last edited by PaulB; 06-07-2013 06:06 PM.

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






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