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#196570 06-05-2018 11:39 PM
Joined: Jun 2018
Posts: 1
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Joined: Jun 2018
Posts: 1
Hello to all...This is a community I had not hoped to qualify for membership in, yet here I find myself. After two biopsies (10/17 and 2/18), my ENT says to me we should "get more determined" because of what the February pathology showed. I said could you please be more specific...and Dr. Wright (I prefer to refer to him as "dr.wrong") says we need to cut out a portion of the right side of your tongue!. Today? I say. Oh, no...he replies, We will need to put you under general anaesthesia in the Surgery Center to do that. Ok, when, I inquire. How about April 19th? [Why was there not more urgency to get this cancer out of my mouth? !, I've felt like I've been walking around with a hand grenade in my mouth a little over a year, and I'm afraid to check and see if the pin is still in place. "Yay, though I walk through the valley of the shadow..." Was that how it went? So April 19th comes and goes. I have to wait 2 more weeks to see the ENT for the results. I pass him in the hall on the way to see him in his office and he states, "It's good news!". I get in the office, assume the position in the highchair and he tells me they found Squamous Cell Carcinoma, an aggressive form, in my tongue pathology.......No how is that GOOD news!?! He thinks it is because "the margins in the sample appear to be clean". Forgive me people if I am not jumping up and down with joy at this point in time. I was just told that they removed cancer from a part of my body, and my speech in unintelligible (for months, I'm told., but I just received a cancer diagnosis and my next question is how does he KNOW he GOT IT ALL? After repeatedly being told not to worry, I am even more worried that ever because it feels like I am the only one here who is noticing that maybe the Emperor is not wearing any clothes. I feel so all alone and unsupported, because I am. And I know deed in my heart that I MUST get OFF of the Suboxone as soon as possible that I was using sublingually for 7+ years for pain management for my Fibromyalgia. At the same time I know that I cannot function with the level of pain I experience unmedicated. What am I to do? I am searching for a doctor who can halp me. Thank you all for the opportuning to be a part of this forum and for sharing your experience and your heart (the best part of you) - Suzanne


Suzanne M.
SCC(a) tongue (Stage unknown) 4/26/18
Biopsies 10/17 and 2/18
Glossectomy of right side of tongue 4/19/18
ENT's treatment plan: "wait and see"!
working on getting 2nd opinion from oncology ENT at teaching hospital
non-smoker/non-drinkeer
7+ years sublingual Suboxone
Suboxone side effects: tongue numbness, pain and irritation;
studies with rats were positive for Leydig cell tumors and positive mutagenicity with the Green-Tweets survival test.
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Welcome to OCF, Suzanne! Im sorry to read about what you are going thru. We will do our best to help you with info and support.

I understand your frustration with your current ENT and their wait and see plan. Unfortunately we have seen this before with other members, but usually when its for a noncancerous diagnosis. I know its not easy to have that kind of stress added to everything else you are going thru. I suggest seeking out another ENT (at another practice) who specializes in treating oral cancer patients. Take all your records along to make the new ENT aware of everything you have going on and all your tests. You need to find an oncologist preferably at a comprehensive cancer center (CCC). With your other medical issues (and lack of trust in current ENT) a CCC in my opinion would be the very best place for you. Plus they use a team based approach so all the docs are on the same page. A new, experienced ENT should be available there as a member of your team.

As far as pain management goes, have you been to a pain specialist yet? They have many options that could help you with the Subpxone. That type of doctor should be available at a CCC too.

We're available to help you get thru this. If you have questions please dont hesitate to ask. We're all in this together and you are no longer alone since you have found OCF. Heres a few links to help you get started...


NCI list of CCCs

US News Best Hospitals List

OCF main site --- Diagnosis

OCF main site --- Treatment






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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