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#145498 02-06-2012 09:46 AM
Joined: Jan 2012
Posts: 2
Dana M Offline OP
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Hi everyone. I'm new to this forum. I have had a swollen level II lymph node on my neck stable at 1.8 cm for 18 months- 3 different sonograms. I've had three scopes at 2 different ENTs where nothing could be seen visually. I finally pushed for a FNA from one, whereas the other wanted me to have a MRI first. I'm waiting for appts for both. I just started pushing for more testing when I recently was diagnosed with HPV 16 by a gyn. I am pretty sure I know exactly when I became HPV 16 positive- 2 1/2 years ago, where as my neck swelling on my left side began 1 1/2 years ago.

Anyhow, I'm in panic mode and could use some advice. I do live a little over an hour from John Hopkins, but I also have read about many posters having good experience at MD Anderson. Any advice?

By the way - I'm 45 with a 21 year old and so mad at myself for getting into the situation.

Dana M #145500 02-06-2012 09:54 AM
Joined: Jun 2007
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Dana, welcome to OCF. At this time, HPV is not known to jump from one are to another. Not all HPV will turn into cancer. Hope its nothing but I do suggest you go to a top notch cancer center. Both of the ones you mentioned are very good places for treatment. They both treat many OC patients. A biopsy should be done to find out whats going on. Best wishes, please let us know how this turns out.


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
Dana M #145501 02-06-2012 09:57 AM
Joined: Oct 2011
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Hi Dana,
First off, sorry you have to be here, but you are definitely in the right place. We have all been there or have been caregivers to our loved ones who were or are there.
The panic is completely understandable. It will take a bit for it all to sink in, but once it does you just settle in and shift into survival gear. My husbands oc was also HPV positive, as was my last pap/leep procedure. DON'T beat yourself up! It doesn't do anyone any good, and you will need all your emotions to fight the battle.
Try not to panic too much until you have the biopsy. When Kevin found the lymph node, I, like you,sort of felt I knew it was bad simply because it was on one side of his neck, it was a solid node and it wasn't painful at all. All bad signs. By the time he had his biopsy it was huge. When he turned his head you could see it protruding from his neck.
We are on the other side now and doing pretty well. Stay on this forum for support. We didn't find it until the end. I wish I had found it sooner because it has really been amazing to have the love and support of people who knew/know EXACTLY was we are going through.
Keep in touch with us and know it is a battle you CAN win!Push for these appts SOON. Even if you start with a familiar ENT then transfer after the biopsy. Just find out for sure asap.
Blessings,
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
KP5 #145505 02-06-2012 10:31 AM
Joined: Jan 2012
Posts: 2
Dana M Offline OP
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Joined: Jan 2012
Posts: 2
Christine and Kathy,

Thank you very much for replying. My MRI is on Friday and FNA is scheduled for next Wed. I was supposed to have my MRI last week - but it was the 6 foot closed one and I never realized that I was claustrophobic until I was inside. So I have an open one scheduled this week. Kathy, was your husband treated at a cancer center?

Dana M #145515 02-06-2012 07:36 PM
Joined: Oct 2011
Posts: 805
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He was not. We had an excellent Oncologist here in our town. I guess it is a cancer center, but VERY small. Long story, but the doc isn't there any more and it is closing down. He was the only doc. Politics of the hospital got in the way. They have lost an amazing man. He is deep into research and also has a few drugs he is developing. The community has lost a wonderful asset. This just happened. We will do our follow up with our radiation oncologist (at another local smallish clinic) and pray we never have to face it again. If we do, we will face it head on and conquer again!! With a new doc! :O(
If we had not had 3 children and my 86 year old mom living with us he might have gone to Rochester, but everyone here in town felt VERY confident they could handle it. They were very familiar with oc. So, we stayed put.
If you have the ability to go to a large clinic...do it! Use the BEST resources you have.


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14

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