| | Joined: Jun 2011 Posts: 54 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jun 2011 Posts: 54 | I'm trying not to have a heart attack. Over the last 2 months I developed some white covering over the opposite side where I had cancer 1st time. I started to hurt last few weeks. The ENT saw me today and took biopsy. I won't get results til Monday. I am trying not to freak. The ENT said its 50/50 if cancer again. But he said weird things happen to radiated skin. I have a pit in my stomach from the shock.
Ugh -
Age 44. Diagnosed at 34 (2006) with T1N0 SCC tongue on right side. Neck dissed & 6 weeks Radiation. 30% tongue removed. Never smoked;
2nd recurrence 1/2013 on left side. Surgery to remove 2/2013 forearm flap/neck dissec T1N0; brachytherapy 4/2013;
3rd recurrence 11/2015 mandibulectomy for jaw bone cancer Stage IV/no lymph node involvement
| | | | | 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 | Lola, recurrence is the one of the biggest fears of any cancer patient. Do your best to keep busy while you are waiting on the results. I hope it turns out to be nothing serious.
If it helps any, Ive had 3 biopsies over the past year and all 3 were negative for cancer. So you see, they really can come back negative.
Please let us know how you make out! Good luck!!!
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: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Lola,
Unfortunately one of the greatest things the mind does is wander places that we never imagined possible. While good when planning vacations it really sucks in Cancer world. We could easily think of seemingly infinite possibilities but it just can't be that many things. Try to keep busy and spend time around those that are kind to you; those that love you, too. You are officially a cancer free survivor until they prove otherwise so enjoy every precious second of life. You have a guaranty until they prove you should worry cancer has returned.
I have had som very strange things like sebaceous glands that burn up and swell and get hard; I have had lymph nodes swell and get hard but later dissipate; I have had sores that lingered in radiated areas. The list goes on and each thing that seems different becomes a potential enemy in the after treatment phase. Some may be and some may not be. You just never know until they can prove it.
Best wishes for a false alarm.
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | Joined: Jun 2011 Posts: 54 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jun 2011 Posts: 54 | Ed and Christine,
Thank you for the encouraging and kind posts. Your kindness brought me to tears as I was so touched. Great advice-only this forum understands and I am trying to calm myself from all this.
Thank you again
Lola
Age 44. Diagnosed at 34 (2006) with T1N0 SCC tongue on right side. Neck dissed & 6 weeks Radiation. 30% tongue removed. Never smoked;
2nd recurrence 1/2013 on left side. Surgery to remove 2/2013 forearm flap/neck dissec T1N0; brachytherapy 4/2013;
3rd recurrence 11/2015 mandibulectomy for jaw bone cancer Stage IV/no lymph node involvement
| | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Lola, I always say "don't borrow sorrow from Tomorrow".
It's hard I know. But we lose so much precious time worrying for things that have not yet happened. Then we worry when they do happen. It's a double up.
Like the others have said , keep busy. If your mind goes to that dark space tell yourself STOP. Then redirect your thoughts. I find this helps me a lot. The other thing I did/do is take a sleeping pill at bedtime so I just sleep and don't follow my thoughts all night.
Finger crossed this turns out to be nothing,
Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
| | | | | Joined: Jan 2013 Posts: 1,294 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,294 Likes: 1 | What I do EVERY day is live my life such that at the end of the day, I can look back and say that I did as much as I could and was as happy and fulfilled as I could be. No regrets.
That means any minutes of the day spent distracted on such worrying thoughts is minutes spent missing noticing the especially blue sky today, the crispness of the air as I take my daily walk, hearing the birds in the trees, really taking note of what my kids said today, making the time to answer some question or help them for an extra few minutes.
Enjoy every minute of TODAY! No regrets.
Don
Don
Male, 1955
Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
| | | | | Joined: Jun 2011 Posts: 54 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jun 2011 Posts: 54 | Don and Tammy-
Thank you
I appreciate the wisdom and will focus on that.
Age 44. Diagnosed at 34 (2006) with T1N0 SCC tongue on right side. Neck dissed & 6 weeks Radiation. 30% tongue removed. Never smoked;
2nd recurrence 1/2013 on left side. Surgery to remove 2/2013 forearm flap/neck dissec T1N0; brachytherapy 4/2013;
3rd recurrence 11/2015 mandibulectomy for jaw bone cancer Stage IV/no lymph node involvement
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | Good luck Monday. Chances are its nothing - but the plus is - if it is you caught it very early. Hugs
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: 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 | Waiting is the worst! Good luck with the results.
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
| | | | | Joined: Sep 2012 Posts: 381 "OCF Canuck" Platinum Member (300+ posts) | | "OCF Canuck" Platinum Member (300+ posts)
Joined: Sep 2012 Posts: 381 | Lola, we're all keeping fingers crossed for you. You'll worry no matter what - I've been trying to keep my Feb 11 appointment (first test post-surgery) out of my head and it creeps up at the stupidest times. I try and push it to the back and remind myself that thinking about it won't change what it is or isn't. Whatever it is, you'll deal, like before!
Good luck.
Tina
Diag: Aug. 13/12
T3N0M0
50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V
Surgery October 11/12
Chemo/rad on hold due to clear margins and nodes
Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely.
Dec 16/13 - anomaly confirmed artery, all clear
nickname: "get 'r done"
Plans: kick cancer's butt
| | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Lola:
Prayers for good results on your biopsy coming from the biggest WIMP on this Forum when it comes to waiting for results for ANY test/procedure.
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: Jun 2011 Posts: 54 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jun 2011 Posts: 54 | Julieann,Tina,Paul and Cheryl,
Thank you for the kind words and thoughts. They mean the world to me because I know only this Forum understands. My family helps but different.
I slept good last night but I had a moment this morning of disbelief. It took me a second to grasp that I was here again - waiting...
My 3 year definitely helps me be distracted.
Thank you all.
Age 44. Diagnosed at 34 (2006) with T1N0 SCC tongue on right side. Neck dissed & 6 weeks Radiation. 30% tongue removed. Never smoked;
2nd recurrence 1/2013 on left side. Surgery to remove 2/2013 forearm flap/neck dissec T1N0; brachytherapy 4/2013;
3rd recurrence 11/2015 mandibulectomy for jaw bone cancer Stage IV/no lymph node involvement
| | | | | Joined: Apr 2003 Posts: 122 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Apr 2003 Posts: 122 | Lola, believe it or not, you'll probably live to see the day AFTER they tell you whether it's cancerous or not. Try (I know, just about impossible) to focus on the incredible gifts of your life right at this very moment; the delicious breath you just took, the wonderful love of those close to you, the crisp smell of winter in the air, and your tomorrows won't be filled with quite so many sorrows. Hmmm, now if only <<I>> could faithfully follow that sage advice! :-p
Gordon
SCC right tonsil Dx 14 Feb 03
No surg till Apr 03
Lip resection Sep 05 "frankenface"
Recurr Apr 10
2/3 tongue removed Jun 10
SPEECH/SWALLOW/DROOL challenges FUN!
Dec 10 Tumor @ nodes/larynx/cart artery growing
Erbitux Mar 11 Hyoid bone regrows!?
recur Dec 12
begin taxo chemo
10yrs-still kickin!
| | | | | Joined: Dec 2012 Posts: 38 "OCF Down Under" Contributing Member (25+ posts) | | "OCF Down Under" Contributing Member (25+ posts)
Joined: Dec 2012 Posts: 38 | Hi Lola, I feel your pain! I too are waiting and agree its the absolute worst. My first biopsy was negative but ENT still concerned and now wants to do a bigger biopsy and look around under anesthetic so I'm still trying to figure out what all this means lol
Good luck!!! My biopsy is on Tuesday (next to base of my tongue)
Female 34. Non smoker, casual drinker
Dx July 12 stage 1 scc to left tonsil n0 m0. Hpv + 16 . 7 weeks daily rads finished sept 2012. 3 mth scan - low activity in primary spot hopefly t's just inflam. 2013 Abnormal tissue next base of tongue, came back negative. 5 month scan all clear!!!!! Yayy
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