| | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | At my six month check I complained of a sore throat ( couple of months) and the fact that food has started getting stuck in my throat, ( 6 years since a tongue and tonsillar pillar graft) Doc said after camera up nose  that all looked ok. so why the MRI, here in the Uk the Doc do the cost option.. So I am climbing walls, positive vibes please..
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
| | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Hi Helen:
You not only have positive vibes coming from me, you have my prayers. I know there are strange things that start happening many years after treatment, and hopefully the sticking food and sore throat are late effects from the laser surgery. Or, it could be something totally different than cancer - sinus problems if the weather is really changeable there, or a number of other non-cancer related issues. So, hopefully the MRI will be good results. Remember, you have my prayers and those from all the other Forum members who read this.
julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer  | | | | | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Julieann
Thanks, I've had 2 lots of laser surgery on my tongue and a graft from my forearm and after all this time I thought I could forget the fear.. I am a carer for my blind husband who now has Alzheimer's.. and tonight I am climbing walls here in the UK it is 1-39 and I should be asleep, so thanks for your support..
I am just thinking I cannot do this all again.
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 8 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: 8 | Helen, sorry you are going thru a scare right now. We never forget the horrors of what we have gone thru and the fear is always looking over our shoulders. Im praying that you are not having a recurrence. Julieann is right, it could be any number of unrelated issues going on. With using heat the house gets so dry inside. That could be causing problems for you. Maybe try using a humidifier, it may help. Best wishes with your tests.
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: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Christine
Thanks, it is my imagination running riot I think.
My husband is blind and now has Alzheimer's and the thought of an re-occurrence at this time is terrifying, I really don't want to image the choices I would have to make.
Still will get the results in a couple of weeks so just get though and hope all is ok.
Will try a humidifier, thanks.
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
| | | | | Joined: Sep 2010 Posts: 179 "OCF Down Under" Senior Member (100+ posts) | | "OCF Down Under" Senior Member (100+ posts)
Joined: Sep 2010 Posts: 179 | Hi Helen,
Hoping for a non-reooccurrence for you. Try and take one day at a time until the results come back. Please keep us updated. Will be thinking of you.
Minh
35 Yrs old
03/10 SCC T1-T2
Partial Glossectemy end March - margins not clear enough.
While waiting for resection - cancer returned,2 new cancerous lumps
Re-section End May & flap from cheek attatched. Margins clear.
Mid June - 4 teeth out
Mid July -32 Rads and 3 Cisplatin
6th Sept 10 Finished Treatment!!
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Helen,
Did they give you anything for your sore throat? What do they think is causing it? Do you also have any voice change?
I hope and pray this is nothing but a sore throat. You have been through so much already. I am sending good vibes your way. Keep us posted.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Eileen long time old friend (well not that old :/) Sorry to read about the breast cancer, hope that is getting sorted for you. MRI done get results 21st February so not to long to wait. Have been on an Alzheimer's forum for 2years now, it seems that GOB was showing the first sign some while back so I need to withdraw some of my old comments  I now have to find a sitter if I am out of the house for more than an hour, it is sad to see him so scared. So this is my worry if they find anything. I will have many decisions to make , not just about me, but about what is best for John, I was a bitch wasn't I ?? Oh well we all learn. It is like coming home posting on here again,
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
| | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | Helen,
How were you to know??..behavior is behavior and no easier to endure even with a dx of Alzheimers.
Don't waste energy feeling guilty but rather gearing up for this next battle (if you can even possibly do that..ugh.)
Yep, this place is "home" after a long hard road trip.
Hugs, Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 |
Am now climbing walls..
Go to head and neck clinic Monday, BUT a letter arrived with an appointment for a ultrasound guided needle to my neck..
on the 7th of March.
So until Monday I will have no idea what they have found, only that they have obviously found something..
Hell..Monday 3-30pm is years away.
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
| | | | | Joined: May 2007 Posts: 132 "OCF Down Under" Senior Member (100+ posts) | | "OCF Down Under" Senior Member (100+ posts)
Joined: May 2007 Posts: 132 | Hi Helen,
Good luck with the Clinic. I've had ultrasound guided FNAs twice, both times for suspect nodes. One came back negative (falsely) and one positive. You're right in that they wouldn't be doing the test unless there was something suspect. I'm very suprised though at how long you have to wait for the ultrasound appointment. Perhaps you could get the Doctors at the clinic to speed this up so you can stop climbing the walls.
Best of Luck
Sue G
55 y/o
SCC LL Tongue 3/27/07
Part. mandibulectomy 9/2/07
Left ND 5/12/08
RT/Chemo
Rec LL Tongue 07/09
Part gloss 8/5 & 8/25
Surg 10/28/09 re mets to R neck & L jaw
RT & Chemo finished 12/22/09
PEG fitted 05/06/10
L buccal SCC 10/10
freeflap (forearm)surgery 2/28/11 L buccal and gingiva
| | | | | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Sue thanks.. Been to the head and neck clinic today, they have found a 1.6 cm node. I have been told it is probably OK as they cannot see anything else.  So nothing now to do but wait, I will get my results on the 14th of March. I have however been told to return if I notice any changes.
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
| | | | | Joined: Jul 2006 Posts: 388 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2006 Posts: 388 | Helen, we are hoping all will turn out to be nothing more than some resulting side affects from the first time around...you have enough to handle now without a rerun. I know all of us are behind you for a "sigh of relief" FNA report!
Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
| | | | | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Well it has been a long time since the 9th of Feb;-(
Tomorrow is the FNA and then just 7 more dam days till I get the results..
The house is ultra clean, the freezer is full of meals for John,the garden is tidy.. What the heck will I do next week to pass the time...
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
| | | | | 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 | Photo albums
Not only do you get it done - you get to spend your time enjoying the memories.
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)
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 8 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: 8 | Excellent idea Donna!!!
Wishing you all the best, Helen!!!! Play some games on the computer, that will help you pass the time. Whenever I play, it seems like I lose an hour so quickly!
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: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Get caught up on this website. There must be a zillion strings you haven't read OR go to the island, climb down from your tree and chill out for a while. There was a party going on the last I looked.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Helen -
Scrabble is my latest favorite form of chilling out for a while! I play it on my iPhone thru FaceBook. Or you can go to FB on your computer and play from there! I still haven't quite figured out FB but if you have me on your friend list, just start a game with me and I'll play scrabble with you! Or you can "friend" me and I'll start a game with you. II hope that the results you get will bethe very best of good news!
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Oct 2010 Posts: 47 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Oct 2010 Posts: 47 | Best of luck helen! May God give you strength and energy.
Caregiver to husband 40 yrs. Was diagnosed SCC 09/2010. Soft palate, lft of tounge. Stage 4 HPV-
Radiation 70 gy & chemo start Nov 1 End Dec 17/2010.
1MRI-7 Mar 2011. Neck dissection-14 apr 2011. Lymph nodes removed 36 just 1 had cancer. F/U CT Scan-19 may 2011. "Cancer Free" as per doctors!
| | | | | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | thank you all so much for your support, that is what has got me through the last 5 weeks..
WELL ALL SEEMS OK..
The FNA never happened, the ultra sound Doc said when I lay down it disappeared so she was happy that is was nothing..
So the consensus is that the food is getting stuck between my tongue and my graft and that the pain is a referred pain from my tongue which is tight after the laser surgeries.
So back on 6 monthly checks unless anything changes..
SO YIPPEE A RESULT..
once again thanks all of you.
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Great news, Helen! So glad everything turned out so positive. Yay!
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Dec 2003 Posts: 528 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: Dec 2003 Posts: 528 | FANtastic news, Helen. You had me worried. Love from your old mate, Helen
RHTonsil SCC Stage IV tx completed May 03
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 8 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: 8 |
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: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | GREAT NEWS Helen! I am sorry glad for you. You had me worried there girl. So NOW are you ready to come down out of your tree and party?
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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