| | Joined: Dec 2012 Posts: 38 "OCF Down Under" Contributing Member (25+ posts) | OP  "OCF Down Under" Contributing Member (25+ posts)
Joined: Dec 2012 Posts: 38 | Thank you all for your answers! I read them last night and felt such a huge sense of relief and got the first good nights sleep since I started worrying about all of this.
Well I went to the ENT today. He took a biopsy as I expected but the look of horror on his face when I mentioned ear pain! He said well that actually is a concern and whenever we hear that we have took take it seriously. So he said come back in a week, if results are normal then he will have to do an investigation under anesthesia. If results come back pear shaped then off to Sydney for aggressive surgery. Hmmm I presume neck resection and or tongue if it's included. I think he is thinking as my pet wasn't clear there may be some residual disease. He then counted the number of months on his hand and said well it'd be about the right amount of time for it to show symptoms if it were residual disease. So where does this leave me lol is it reaccurence, same initial cancer which was very quite slow growing or a new primary if in tongue only.
Female 34. Non smoker, casual drinker
Dx July 12 stage 1 scc to left tonsil n0 m0. Hpv + 16 . 7 weeks daily rads finished sept 2012. 3 mth scan - low activity in primary spot hopefly t's just inflam. 2013 Abnormal tissue next base of tongue, came back negative. 5 month scan all clear!!!!! Yayy
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | So glad you got checked out by your doctor! They sound like they are top notch by not dismissing your symptoms.
Sorry Shell, but that last question is not something we can not answer. Your doc is doing the right thing to check you out. Thru testing he will determine whats going on. Try to have patience, keep yourself busy and think positive.
Best wishes!!!!
ChristineSCC 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  | | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Shell,
The stance we take on the forums is that it's NOT cancer until a biopsy confirms it. It's tough to wait for results, however that's what you'll have to do. Try to get it out of your mind and just live in the moment, and at the moment you have nothing confirming disease right? Hard to do that but it's necessary to keep your sanity, trust me I lost some of mine by not living like that.
Keep your chin up!
Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: Dec 2012 Posts: 38 "OCF Down Under" Contributing Member (25+ posts) | | OP "OCF Down Under" Contributing Member (25+ posts)
Joined: Dec 2012 Posts: 38 | Thanks Eric! We will wait and see but I am unfortunately expecting the worse. Results this week for biopsy. Does anyone know what causes the symptom trouble swallowing? Is it tumor growth or is it interruption of nerves. Lol yes I am still worrying! .....
Female 34. Non smoker, casual drinker
Dx July 12 stage 1 scc to left tonsil n0 m0. Hpv + 16 . 7 weeks daily rads finished sept 2012. 3 mth scan - low activity in primary spot hopefly t's just inflam. 2013 Abnormal tissue next base of tongue, came back negative. 5 month scan all clear!!!!! Yayy
| | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | She'll,
First, I am sorry everyone here calmed you down long enough for your doctor to totally freak you out. One of the grounding forces in our lives besides each other of course, is the calming influence of our docs. They tend to remind us that the million things our minds conjure up put so much stress on us. Disregard the months counted off, the additional scary comments and all that. Until they can prove it, worry not because until that moment you don't have cancer. Don't hurry the worry please. If it is...it will be known in due time. You are doing all you can and worry does not help.
I have had swallow problems for 9 1 1/2 years and just roll with it. I cough up a mouthful of goo that started at every 15 minutes and is now every 15 seconds. I have lumps, bumps, swellings and all that goes with this but refuse to accept anything unless they can prove it.
Enjoy every second right now. Your life has changed for good once you get that life shaking diagnosis we all have. It may continue to change forever or it may stabilize. Enjoy the moment and MAKE THE MEMORIES. Some day will come for all of us when that is what carries us through the toughest of times.
Get with a speech pathologist and get some swallowing recommendations. That is what they do.
Best wishes for the best possible course of action for you and your medical team. Enjoy life today. The rest will sort out.
Ed
Last edited by Uptown; 01-12-2013 07:16 AM.
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | Joined: Dec 2012 Posts: 38 "OCF Down Under" Contributing Member (25+ posts) | | OP "OCF Down Under" Contributing Member (25+ posts)
Joined: Dec 2012 Posts: 38 | Biopsy is benign yayyyyyyy. Still have to have my examination under anesthetic but halfway there so all good.
Female 34. Non smoker, casual drinker
Dx July 12 stage 1 scc to left tonsil n0 m0. Hpv + 16 . 7 weeks daily rads finished sept 2012. 3 mth scan - low activity in primary spot hopefly t's just inflam. 2013 Abnormal tissue next base of tongue, came back negative. 5 month scan all clear!!!!! Yayy
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 |
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
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 |
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
| | | | | Joined: Dec 2012 Posts: 38 "OCF Down Under" Contributing Member (25+ posts) | | OP "OCF Down Under" Contributing Member (25+ posts)
Joined: Dec 2012 Posts: 38 | My results may have been a little too hasty. Saw him today and said it can either be post radio therapy changes or cancer recurrence. Scheduled for bigger biopsy under anesthetic next Tuesday then results following Tuesday after that. I'm feeling positive though as I'm exhausted thinking about the bad stuff. If it is, well then it s lol what a bloody rollers coaster. Hold on!!
Female 34. Non smoker, casual drinker
Dx July 12 stage 1 scc to left tonsil n0 m0. Hpv + 16 . 7 weeks daily rads finished sept 2012. 3 mth scan - low activity in primary spot hopefly t's just inflam. 2013 Abnormal tissue next base of tongue, came back negative. 5 month scan all clear!!!!! Yayy
| | | | | Joined: Dec 2012 Posts: 38 "OCF Down Under" Contributing Member (25+ posts) | | OP "OCF Down Under" Contributing Member (25+ posts)
Joined: Dec 2012 Posts: 38 | Oh and he said its not an ulcer it's what's called a thickening. It's clost to the base of my tongue. Lol just in case anyone wanted to know the technical stuff
Female 34. Non smoker, casual drinker
Dx July 12 stage 1 scc to left tonsil n0 m0. Hpv + 16 . 7 weeks daily rads finished sept 2012. 3 mth scan - low activity in primary spot hopefly t's just inflam. 2013 Abnormal tissue next base of tongue, came back negative. 5 month scan all clear!!!!! Yayy
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