| Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | OP "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | So I went to see my surgeon today thinking that he was just checking up on my left cheek, when he pokes around and says that "yes, he will do a biopsy of an area he has been watching". Well I'll be damned. He was scheduling 2 week spaced follow ups but he never specifically told me that he was watching an area on the left side - near my flap from 2004 - near the "left anterior tonsil pillar".
Mmmmmmmmm........not sure what to think. All the worriers out there know how I feel right now. And those of you who have learned to not buy tomorrow's trouble will tell me so - it isn't cancer till they says its cancer, and Good Lord, I know all this. Somehow tho, that drop in the pit of your stomach still shows up. I like to think I handle these lumps, bumps, biopsies better than I used to - but I think perhaps I just have better drugs now.
I feel better when I post my worries where I know you guys understand. It is so hard to burden your family with these worries when I'm sure they are tired of hearing about it.
My surgeon drives me nuts. I would worry far less if I knew there was a Plan to deal with a bad result. So I said to him - if it isn't great news - what would the plan be? He replies - AS HE ALWAYS DOES - "we aren't going there yet". He obviously doesn't understand my need to know that there IS a plan - even if it is Plan W.
Throat hurts where he took the biopsy. Going to take a pill and go lay down.
Thanks for listening!!
Donna
Last edited by Pandora99; 06-08-2011 09:48 AM.
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)
| | | | 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 | Hugs - I know it's scary - we're all in the same boat. I'm sure he has a plan If there is a problem - but it's still worrisome. Wonder why he didn't mention the otherside to you? Regardless - I hope he's just being cautious and it's nothing - fingers and toes crossed for you! Take care - try not to freak.
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: 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 | Boy Donna it never ends does it? I am so sorry that there is an area that your doc is concerned enough about to biopsy. Keep busy so you can keep your mind occupied. You have been down this road too many times with too many scares. ((((HUGS)))) and prayers that its nothing. 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: Apr 2011 Posts: 267 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Apr 2011 Posts: 267 | I'm so sorry to hear that you are worried. I hope it is nothing and that your throat feels better very soon.
Tracy - 33 at diagnosis SCC right ventral tongue Dx 4/11. T1N2M0 1st resection 5/11. Bilateral neck dissection: 2 pos nodes 2nd resection w/graft 6/11. Erbitux x 11 completed 9/11. IMRT x 30 completed 8/11. 3 month MRI and PET/CT all clear. 6, 9, 12 and 24 month post treatment MRIs all clear. | | | | Joined: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2011 Posts: 571 | Hi Donna, I'm glad you are in the company of many survivors who understand and are compassionate beyond belief. The best I can do is send a hug and keep you in my prayers that it's nothing.
ps. We addressed with the doctors what they should tell us right up front. We preferred to be as informed as possible. I'm with you. We had a "need to know." We felt better prepared that way. It's your body--he should get past his discomfort and answer your questions. It's better that way. The imagination sometimes makes things worse than they are.
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
| | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | "OCF Down Under" Patient Advocate (1000+ posts) Joined: Aug 2007 Posts: 1,301 | As Christine says you have been down this road so many times. Oral surgeon last time asked me if I wanted a biopsy as I was the one worried about an area of the tongue near my flap. I always ask him to go ahead because the sooner it is done and pronounced clear the sooner I can stop worrying. I am hoping that it will be the same in your case. Please post when you know but in the meantime a big {{{{hug}}} from me too. Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma. 14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad. 6 ops and debulking (flap/tongue join) + bx's 2006-2012. bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia 24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | OP "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | I have been down this road before and I am disappointed with myself that it just doesn't seem any easier. The waiting really is from hell - whether it is your first biopsy or your 15th!! The difference this time of course is that this area is something that the surgeon identified - not anything I had noticed. That feels was kinda freaky, but perhaps that is how it is normally done!
In my search to be more accepting of how things are, I did find a website/podcasts called "A Quiet Mind". I would highly recommend it.
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)
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Donna
Oh No! Not fair! But please don't be disappointed in yourself because having been down this road does not make it easier; IMO it makes it harder. As for your doctor's lack of a plan for the worse case scenario, he probably just does not want to scare you unnecessarily. When my cancer came back and after the surgery when I was deciding to get a second round of radiation and chemo even though it probably meant I'd never regain my ability to swallow, I pushed very hard for the "plan" if it came back because I wasn't satisfied with an answer similar to yours; we're not there yet. So they spelled it out for me : it would be catastrophic for you, we'd have to take out your larynx and this time your jaw would not go back together so you'd need a bone graft. I should have stuck with the not there answer. I was going to ask our infamous representative Anthony Weiner to send you an inspirational twitter or email to cheer you up (don't know if that joke works up North but just google him if you don't get it). Seriously, I'm sorry to hear about this recent scare. keeping my fingers and toes crossed that the biopsy comes back negative. Keep the Faith Charm 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: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | Hi Donna
All the things everyone has said but I would just like to pick up on comment you made that your family might be tired of it.
No, your family will be worried for you too and probably not saying anything because they don't want you to worry any more than you already are.
I still don't know whether or not to address some of Alex's issues because I don't want to bring it up if he hasn't thought of it and make his burden any heavier. And he doesn't want to voice his fears either for exactly the same reason. Makes for some awkward moments.
There are two sorts of people, ones that want to know and support and those that would rather wait until a diagnosis is made. What type are your family? If you were my family, I would want you to share your fears so that I could support you - maybe your family is the same?
Karen
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED Still underweight
| | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | OP "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | Still waiting for results....I will admit that THIS is the place where the American system is superior to the Canadian - we wait much longer for test results. If this is God's way of teaching me patience, I'm afraid I am not passing!!
I know if I scream in frustration here that you will all understand.......AAAAAAAAAAAAAAAAAAHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH
That felt better! Now I will go and try to have a good day.
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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