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Well, anyway that's what I am hoping. Today's ENT followup was less than optimal. What had been "palpitated" last month as "perhaps scarring" now is a pea sized lump under the skin of my tongue at the base near the tumor site. So MRI in 2 days and a full biopsy "soon" is the plan. My ENT and I decided that "watchful waiting" was too stressful, esp with major potential for serious downside. So my lump's future is to be cut and snipped, then whisked off to the pathology lab. I really hate how the fear of recurrence haunts every ache and pain or symptom. that's the worst part of cancer in my mind (although the radiation was the worst for my body)
Anybody out there have benign lumps that are nice and soft and small just pop up opposite a bony jaw protrusion? If not, I hope to be the first.

Last edited by Charm2017; 01-05-2009 06:38 PM. Reason: typo

65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Aug 2008
Posts: 531
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I will keep my fingers crossed toes crossed legs crossed and anything else I can cross for you and will add prayer on top of it and stir it all around and send you good vibes...I know what you are talking about and I am so glad that your ent is thoughtful about the watchful waiting and stress levels. He is well worth his weight in gold!!! I am so amazed that these professionals can tell the difference between scar tissue and potential danger it all feels the same to me...Try to stay positive and you know the drill it isn't cancer till pathology says it is!! Just take one step at a time!!!

Thinking of you with hope

Dianne


Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
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Charm,

I hope everything gets resolved quickly so you won't have to worry. We all hate the waiting and wondering. I did have to have a biopsy at the BOT and they put me under. Pain was mild for a few days and eating was limited to soups. etc so have some great meals before.


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.
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Diane

Thanks for the support. You are right that I am lucky to have such an emphatic ENT surgeon. Not only is she a woman in a field dominated by men, but her husband is a long term oral cancer survivor who uses the same cancer dentist as I do. It really helps a lot as her perspective is so different than the rest of my medical team. The RO and MO were pushing neck dissection but she held firm in supporting our decision to not have the surgery since the MRI was clear. While she can understand those patients who are ecstatic about having an amazing number of lymph nodes taken out that were perfectly healthy, she understands that would have horrified and depressed me. In an ironic comeuppance, I will now be one of those patients who has surgery (albeit minor) and will be overjoyed if it was totally unnecessary.


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Mar 2008
Posts: 3,082
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David

Our treatment paths were remarkably similar as my first biopsy in August 07 was done under anesthesia at GT Hospital due to the location of the tumor. So as Yogi Berra said:" It's Deja Vu all over again." Meals already aren't great with no taste, so at least the recovery period this time around should be easier. Time to buy some more Ensure Plus.
Thanks for the reply and I like the sound of "waiting and wondering" better than "nervous wreck".


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Sep 2006
Posts: 1,357
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My lump which they believe was scar tissue/rejected suture material (final jury statement still out) popped up almost overnight. If I believe the cat scan and fine needle biopsy it was indeed a benign lump. I have also had other benign lumps pop up in my neck and mouth. Perhaps that is why my file at Cancercare now has Volume I and Volume II. !!!

I'm glad you are acting on it. I never understood "watchful waiting". You have to trust their judgement - they have seen it all before - but isn't it kinda like standing on the train tracks and employing "watchful waiting" for the next train?

Hang in there - we're here with 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)
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Pleeeeaasseeee, Carnation Instant Breakfast VHC. I don't want Jim on my case. lol


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.
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Donna
Thanks for sharing that lumps can be benign. "Watchful waiting" is a phrase taken from slow growing cancers like Prostate cancer. With tongue cancer it is like an express train hurtling at you if you don't take action. although I agree with you that if I was diagnosed even with prostate cancer I don't think I could just sit and wait.


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
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David

I hope never to be so desperate as to have to force down another VHC. Truly, the barium mixture I drink before each Petscan goes down easier and tastes better than VHC. The ensure plus is tolerable.
Although I do concede that only the VHC enabled me to not get a PEG. I did not find out about it until my last Erbitux treatment and the last 15 rads. It was only because the chemo nurse who caught onto my little trick of putting fishing weights and my blackberry into my vest pockets when I was weighed in agreed to let it be our little secret if I would drink the VHC samples she brought.


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Feb 2007
Posts: 790
"Above & Beyond" Member (500+ posts)
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Hi Charm 2017. I would feel the same about watchful waiting. I don't like that term. Seems easy enough for them to just do a biopsy or the needle thing so they know for certain instead of just letting it get bigger or smaller and you feeling worried about it. I'm praying that it is nothing and just some tissue change or irritation.

I too stress out about any lump or bump
and get myself into a total panic before every check up MRI. I don't know that the fear of a recurrance will ever completely go away but I'm hoping it will dissapate the further away I get from my surgery and treatments. Hang in there

Kisses and hugs to you.


KATE


Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor

Finished all treatments May 25 2007
Surviving!!!
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