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#179410 04-17-2014 09:41 AM
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wvs Offline OP
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Good Morning,

I am a Inflammatory Breast Cancer survivor of three years and recently received the results of CT Scan, 2 biopsies and a PET scan that followed a swollen lymph node that remained enlarged for two months following a sinus infection and two rounds of antibiotics. The left node is located on the left side of my neck by the ear and jaw bone. The first biopsy was inconclusive, second biopsy indicated "a well differentiated keratinizing squamous cell carcinoma is favored". PET scan states the following:
Asymmetric increased metabolic activity within the left palatine tonsil/glossotonsillar sulcus region...w/maximal SUV of 10. Increased metabolic activity associated with enlarged low density lymph node behind the left submandibular gland measuring 1.9 cm in diameter with maximal SUV of 7.2. Increased metabolic activity associated with enlarged lymph node within the left side of the neck deep to the anterior margin of upper part of the left sternocleidomastoid muscle where there is a 1.6 cm lymph node with maximal SUV of 7.7. IMPRESSION: increased metabolic activity in the left glossotonsillar sulcus/palatine tonsillar region with metastatic left cervical lymph nodes (level 2). No abnormal FDG in chest, abdomen, pelvis

I know this is cancer and I will be seeing my oncologist and the ENT early next week but could someone prepare me for what I MIGHT be told? I have read and read on the internet and I am so glad I found this forum. Thank you for any help or advice you can give me prior to my appointment.

Wendy in Florida



WVS
wvs #179411 04-17-2014 09:57 AM
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Hi there... Welcome and sorry you have to be here.
Likely they will want to remove your tonsil assuming the biopsy confirms cancer. Then they will want probably set you up for radiation 6-7 weeks daily weekends off - and possibly 3 or 6 rounds of chemo (during rads) this depends on the chemo - often it is cisplatin - this is only effective in conjunction with rads -the other options are carbo, or Erbitux. Carbo is simply an older version of cisplatin. It's 3 large bags or 6 smaller weekly doses.

Radiation sucks but it's doable. Eat up now. It burns the crap out of you inside so eating gets hard and taste checks out around week 4 -the first few weeks are ok. The last 2 are not fun and the two weeks after suck. Then slowly you feel better.

You may need a peg (feeding tube) but do swallow during treatment even if it's just sips of warm water.

Mostly nutrition and hydration is important. You will get through this... You'll need a good cream for your neck. I own a waterpik - it's awesome and I bought it during treatment. You will have severe lack of saliva after treatment (this is after the really brutal thick mucous you have at the end of treatment.

Chemo for me wasn't too bad but it runs the gamut - for others. The best thing you can do is stay on top of your food and fluid, and up your protein to promote healing.

That was my crash course to you. Hugs.... Read up on the fall out. There are some horror stories but usually it's doable. Take care - oh and most importantly if you can seek out treatment at a top CCC and make sure your ENT is experienced at treating oral SCC.

Last edited by Cheryld; 04-17-2014 10:00 AM.

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
wvs #179414 04-17-2014 01:07 PM
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Cheryld

Thank you for your response. I am being seen at the University of Pittsburgh Medical Center/Eye and Ear Institute. I'm sure I'll have more questions.

Thanks again.


WVS
wvs #179415 04-17-2014 01:56 PM
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Welcome wvs, and sorry you had to join this site. A PET scan alone can not diagnose cancer, but is a tool used in conjunction with others exams to help make a diagnosis, and only a biopsy can say wether it is cancer or not, which you had in the 2nd biopsy in the lymph node, probably level II, which showed SCC, which is cancer. Usually the cancer in the cervical lymph nodes is from elsewhere in the head and neck, and as shown by the PET is from the Tonsil, which is in the Oropharynx. This is 90% of the time HPV related, and they may have tested or should test the biopsy sample from the lymph node, which will have HPV DNA if positive. Being HPV positive in the Oropharynx usually has better prognostic rates across the board, and responds well to radiation, induction chemo, compared to being HPV negative, which is usually tobacco related, and more aggressive.

UPMC is a top hospital, a CCC, and top rated in ENT, and Cancer. Not sure of its ranking in U.S. Buisness Reports Best Hospitals 2013/14, but probably in the top 20 out of 5,000 hospitals, if you care to look.

They may want to a Endoscopy or Pandendoscopy to check the aerodigedtgestive tract, take a biopsy of the tonsil, and rest of oropharynx to see if cancer spread elsewhere. Sometimes not, and these days thier doing more tonsil robotic surgery, which has good outcome, maybe a neck dissection too, or just Chemoradiation, and then there is deescalation of treatment in some clinical trials, etc. There are different types of treatments options, and having many optionsare good, but basically it's surgery, radiation, Chemoradiation or a combination. You will probably have a combination of treatment modalities being its advanced cancer, usually most HPV is, and sounds like stage 4 with two lymph nodes involved. Chemo alone does not kill this cancer.

You will find out more after meeting with your doctors, and sometimes things move fast, and then sometimes it's hurry up and wait depending on thier schedules.

There are links here to treatments you can read up on, as well as the forum.

Good luck.


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






wvs #179417 04-17-2014 06:05 PM
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Welcome to OCF, Wendy. Im glad you have found our site. We will help you get thru whatever you are facing.

Best wishes with your upcoming appointments.


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
wvs #179418 04-17-2014 06:55 PM
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Hi, Wendy
The NCCN Guidelines for Treatment for professionals is available on the OCF Site on this page: http://www.oralcancerfoundation.org/treatment/guidelines.php

If you review this document for cancer of the oropharynx, you will see the standard treatment guidelines by stage. If possible, print this and take it with you - I think if makes it easier to understand your possible options than just a verbal description.

Although surgery sounds harder than chemo-radiation, don't rule out surgery with possibly reduced radiation if it is offered. Radiation has longer-lasting side effects than the fancy robotic surgery available now.

Best wishes and welcome.

Maria


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
wvs #179434 04-18-2014 05:41 AM
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Keep us posted.


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.
wvs #179440 04-18-2014 11:28 AM
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wvs Offline OP
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Thanks for your replies. I'll keep everyone updated as the process begins.


WVS
wvs #179442 04-18-2014 11:42 AM
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Hi WVS,

Like others, I am very sorry to hear of your diagnosis. Yours sounds just like mine, and your primary tumor is probably in the base of your tongue.

Cisplatin (named because it is a platinum - a Heavy Metal - based agent, expect severe nausea (the severity comes from the fact that the radiation will also make you nauseated), complete loss of taste temporarily, and neuropathy in your extremities (finger tips and toes), as well as hearing loss.

IF your Medical Team does not raise these neuropathy issues; ASK them to explain why not. You must be your own advocate here, don't expect them to advocate for you.

And DO let then know the minute you thing you are experiencing either unexplained feelings in your extremities or hearing loss (or tinnitus.)

This will not go down as one of your most cherished memories, but on the other hand, it will not be as bad as I make it out to be. It will be bad, but is very doable. You will survive, and the effects will pass, leaving normalcy in it's aftermath.

Be vigilant to avoid getting in the self-pity trap as you wade through all the unpleasantness and you will be fine.

Good luck,

Bart

Last edited by Bart; 04-18-2014 11:43 AM.

My intro: http://oralcancersupport.org/forums/ubbt...3644#Post163644

09/09 - Dx OC Stg IV
10/09 - Chemo/3 Cisplatin, 40 rad
11/09 - PET CLEAN
07/11 - Dx Stage IV C. (Liver)
06/12 - PET CLEAN
09/12 - PET Dist Met (Liver)
04/13 - PET CLEAN
06/13 - PET Dist Met (Liver + 1 lymph node)
10/13 - PET - Xeloda ineffective
11/13 - Liver packed w/ SIRI-Spheres
02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node
03/15 - Begin 15 Rads
03/24 - Final Rad! Woot!
7/27/14 Bart passed away. RIP!

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