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JGavin #166200 06-07-2013 08:35 AM
Joined: Sep 2006
Posts: 1,357
Likes: 5
"OCF Canuck"
Patient Advocate (1000+ posts)
"OCF Canuck"
Patient Advocate (1000+ posts)

Joined: Sep 2006
Posts: 1,357
Likes: 5
Hi Jolie. Hope I have your first name correct (obtained from your e mail address). Welcome to the best forum with dispenses great advice - you have heard that from the above posters.

We all know the overwhelming panic and worry that accompanies what you are going through now. For you - with young children - I would guess it is multiplied by 2 at least. I am so sorry that you are feeling this. The MOST important thing is that you are continuing forward and are on track to get a diagnosis. We all pray results are negative, but that will take some time to determine. Painful days, but while you are waiting - stay very busy and very involved with your kids. Schedule extra visits to the children's museum or some such. Allow yourself 20 minutes a day to worry. Go to the bathroom for your 20 minutes - scream, cry, whatever you want, then leave the room and leave those worries behind. Worrying about it will NOT change the outcome and always remember it is not cancer until the biopsies says it is cancer. Let us know how the surgery goes. Hugs to you.

Donna


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
JGavin #166201 06-07-2013 09:07 AM
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
The swollen lymph node brought me to the doctor. There is very little risk with the FNA, maybe slightly more with a surgical biopsy for spread. If surgery is going to be done, some don't like to do an FNA. I had probably 5 of them. I can see false positives after radiation treatment, which happened to me. As Ed posted, check NCCN guideline for work-up, diagnosis, treatment, follow-up, for the oropharynx or oropharyngeal cancer. Also, in addition too NCI, NCCN hospitals, check U.S. News Report Best Hospital's 2013, which ranks the the top hospitals in the county by specialty. Check for otolaryngology ENT and Cancer. Number one for ENT is John Hopkins, and number one for cancer is MD Anderson, and many others in the top 16. Many if these are on the NCCN, NCI listings too, and can link to the hospitals website, there you can see the types of treatments done, doctors backgrounds, and and further information on rankings in U.S. News report.


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






JGavin #166223 06-07-2013 11:48 AM
Joined: May 2011
Posts: 287
Gold Member (200+ posts)
Gold Member (200+ posts)

Joined: May 2011
Posts: 287
Hi J, to motivate you I am quoting a recent case similar to yours. You can read full thread here: http://oralcancersupport.org/forums...;Main=14823&Number=163757#Post163757

[quote=dkw]Hi All. Thank you "T" for your response above that I just saw. It's now been two weeks since my bilateral tonsillectomy and bilateral BOT biopsies. The ENT did "punch type" biopsies. Had bleeding twice from the right tonsil area; once back to surgery to remove the clot and cauterize it. The good news for now is that the biopsies of my tonsils and BOT were negative for cancer. I did have pus and inflammation left tonsil, where the rear of tongue pain started. Right now, the right side biopsy site I think is taking more than 2 weeks to heal, though I also must have a lesion or something mid-way right side of tongue after coming out of the 2nd surgery three days ago, as that hurts the most now. Maybe they pushed my tongue down against my teeth while cauterizing the right tonsil area? Also, developed a cold sore right side of lip right after the surgery. I am crossing my fingers. Now that I am aware about HPV oral cancer, any pain lasting more than 2 weeks can make me a bit anxious. I do need to try harder to learn from you all. I need to learn not to jump too way ahead and worry unnecessarily. As Christine and "T" says, first things first, and worrying is not a good thing. I will copy and print many of your wise words and keep them with me as a constant reminder. Again, thank you all for your support, your courage, your positive attitudes, and for your ever so kind generosity. [/quote]


Father; 67 yrs; RIP: 2012/05/26

TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009]
TX:Nodal Mets; 3xDCF[2011/05/05]
TX: RND + PMMC Flap[2011/07/11]
DX:SCC PNI+ECE
TX:Re-RT 60Gy[2011/09/21]
TX:Gefitinib 250mg[2011/12/18]
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