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Joined: Dec 2016
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Gjb Offline OP
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Hi All
I was wondering if you could advice if your pet/ct came back negative for cancer but then cancer was found?
I have had pain swallowing on left side for 8 weeks and sometimes just a random pain on left hand side. 3 different ents said no look of cancer or legion but slightly swollen left lingual tonsil. I've put my finger down and can't feel anything strange
I can feel slight raised glands in side of neck. Ultrasound said they look normal
PET / CT came back negative for any cancer.
But I have to wait till 3rd for biopsy due to the holidays. Out of my mind with worry. Should the pet / ct reassure me?

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Hi there,

I'm rather new here myself. I read a distant post today that referenced worry so well. Hopefully you'll find some peace in reading through it.

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=193626#Post193626

I've had a friend recently have a wierd virus and has no cancer. Please read the link. These people here are so great.

Best to you.
Julie


Caregiver to my husband, Mike
He is:
56 years old
Non smoker/social drinker
Hpv -
SCC BOT N2C Stage 4
Dx 10/14/16
Rx of 35 days Rad & 3 rounds of cisplatin
Treatment started 11/7/16
PEG installed 11/2/16
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Welcome to OCF! Im so sorry you are going thru weeks of worrying. Are you a smoker or heavy drinker? Have you previously been diagnosed with oral cancer? There could be any number of things going on besides cancer.

From what Ive been told, a PET scan will pick up something thats about the size of a grain of rice. At this point, you know you arent able to get a biopsy until 1/3. Its likely to be another week before you get any results. That a long time to continue being on the edge of your seat. Waiting is not easy for anyone but its time you can spend on the positive things in your life.

Please do yourself a huge favor and limit the amount of time spent on worrying and "what if" way of thinking. At this point you do not have a cancer diagnosis so try your very best to put it out of your mind and go about your normal daily tasks. Worrying only makes everything much more difficult. It will not help you with anything productive. Being overly stressed only makes you upset which is unproductive and does not one thing to help anyone. Try to focus on what 3 ENTs said, they werent able to find anything abnormal except some mild inflammation. Maybe reading about the disease and about diagnosis could help to ease your mind?

Best wishes with everything!

OCF Main site ... Diagnosis Info


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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Gjb Offline OP
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Hi Christine

I'm worried about HPV related cancer. I am only 34. I want to speak openly as I believe the subject is taboo and shouldn't be but I thought I was having safe sex when younger but realise now I wasn't protecting myself in oral sex. I have read HPV cancers often don't show on scans thus my concern over the negative scan result. I have read everything there is to read on the subject I think which has only made the worrying worse. I am sleeping about 2 hours a night and my dreams are filled with death.

Julie thank you for your kind reply also.

Georgy x

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Georgy, PLEASE slow down! I fear you are being your own worst enemy. The stress you are experiencing is not good for you at all. Dreaming of death must be terrifying. I have never experienced that. But I have had many a sleepless night due to living thru some pretty rough treatments.

Ive learned to take things step by step and not to get too far ahead with the "what if" thinking. Im certain you could greatly benefit from avoiding that line of thinking too. When you find yourself going there, allow yourself a few minutes to think about it then get up and change the channel. Go do something positive that takes your concentration. This takes practice! Unfortunately you may have a few weeks to go before you get any results from a biopsy.

At this time there is much more not known about HPV than there is known about it. The Oral Cancer Foundation has partnered with HPV expert Dr Maura Gillison for over 15 years. Dr Gillison has discovered much of what is currently know about HPV. As far as if HPV caused cancers dont show on scans, I have never heard of this before. To me it does not make sense. HPV is a cause of cancer, its not a type of cancer. Most OC patients have one of 3 types of cancer with Squamous Cell Carcinoma (SCC) being the most prevalent. SCC shows on scans regardless of what caused it.

Currently 3 ENTS have examined you and said the same thing, mildly swollen lymph nodes and no sign of a cancerous tumor. If I were you, I would focus on that rather than on any negative thinking. As adults, we are in charge of our own emotions. Please help make this easier on yourself by seeing things in a more positive "glass is half full" way. I know it may not seem like it, but you can overcome this negativity. Think of it as a choice, and make the choice to see things in a positive way. Dont get too far ahead of yourself by thinking of death or dying when there has not been any cancer found. Even if it would be cancer, it is NOT always fatal. Im here after going thru it 3 times, I survived as did many other patients here.

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
Joined: Dec 2016
Posts: 3
Gjb Offline OP
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Christine your advice is sound I know that. I will try my hardest to follow it & improve my mental strength

Georgy x

Joined: Jun 2007
Posts: 10,507
Likes: 6
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Posts: 10,507
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Sometimes we just need to hear something from someone else to remember we knew it all along. Hang in there!

Wishing you all the very best with everything!


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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