| | Joined: Jun 2011 Posts: 54 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Jun 2011 Posts: 54 | Hi- I wrote on Friday stressed about my biopsy. Well, it was confirmed that it is cancer again on the left front of tongue. First time was on right. Anyway I should get my MRI and pet done this week and then I'll go to ucsf or Stanford next week for the discussion of next steps. My ENT is hopeful based on what he's seen. I just can't believe it. Ugh. I am stressed and feeling a little lost. 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: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | Sorry for the news, and wished it was better. UCSF and Sanford are two good places to go to. Being in the front tongue is better, in terms for access, and hope whatever treatments are in store it's minimal, and a good sign your doctor is hopeful, and there always is no matter what. Good luck next week, and things will ultimately fall into place.
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: Dec 2012 Posts: 38 "OCF Down Under" Contributing Member (25+ posts) | | "OCF Down Under" Contributing Member (25+ posts)
Joined: Dec 2012 Posts: 38 | I'm sorry you are going through this again Lola. If its not bad enough the first time around. All the best for next week.
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
| | | | | 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 am sorry to hear this. You are lucky that you have options for treating this. Get the scans done and you will then know what you are dealing with. Get yourself to a CCC and get a treatment plan from the tumour board. Then you can move forward and deal with this. I know the waiting is hard. Keep yourself busy and gather your support group around you.
Take care,
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: 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 | i am so sorry that you are going through this again. Especially after having been clear for so long... ;o( the good news is treatments are always changing. So hopefully this road won't be so hard to travel and hopefully they'll have something else in mind that will help.
I always wonder if it is something we are eating, some kind of imbalance in our body, some dental filler they are using or exposure to something that causes this kind of thing to recur. I changed my diet big time after my diagnosis and treatment. I was a veg head before but wasn't the healthiest eater, and I now take vitamin d, b12 and circumen. I know the area where I had my tumor had been a problem area for some time. And two caps to my molars in that area which caused a major increase in pain.
I guess we'll never know so we do what we can and hope for the best. I am not sure if you smoke. I am assuming not... but I never smoked a day in my life, don't drink, and stay away from second hand smoke, so I have no idea.
Best of luck... and hugs. this is a great support group here.
The good news - if there is such a thing that includes the word CA is that there are a few here that have been through the same scenario. Pandora had a second primary tumor 3 years after her first and she is doing really well.
Last edited by Cheryld; 01-23-2013 12:55 PM.
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 | Lola, Im very sorry you are now part of the recurrence club!!! That really stinks!!! Ive been there and know how devastated you must feel about the cancer returning. Keep your chin up, there are plenty of us 2 and 3 timers still around. Most important with recurrences is getting the very best medical care at a top notch facility. That will give you the best chance for winning this round of OC. Glad to hear you are going for a second opinion.
Best wishes!!!
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: Jun 2011 Posts: 54 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jun 2011 Posts: 54 | Thank you everyone for the support and kind words. They mean the world to me. Only this forum truly understands. I am so happy to hear that having a second recurrence (or even 3rd) is not a death sentance anymore.
Cheryl- I found your comments about the molars very interesting as well. The two areas I had the tumors, were areas where my molar kept scraping against my tongue (I was not lucky to had braces before the "C"). The first time was on my right tongue and the second tumor is exactly on the opposite side where I chew all the time. Just so odd.
I get my PET and my MRI on Friday. Anyone know if it makes a difference if the recurrence happens 7 years later vs. 3 or 4 years after 1st time of cancer?
I have so much running through my head. But I know that until it is staged, I can't do anything but wait. I am praying that it hasn't spread.
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, would this be classed as a new cancer, being you are 7 years out?
I'm also hoping that you have no spread. Thinking of you,
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: Jun 2011 Posts: 54 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jun 2011 Posts: 54 | Tammy, you know, I'm not sure if considered new or not. I did not even think about that. I will ask though. Good question. I'm assuming the MRI and PET will tell some of the story.
Thank you for the thoughts.
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: 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 | I am five years out from my second cancer. I was told that if I had a third cancer it would be considered new given the time between. This is not a trivial thing as I am led to believe that they would feel justified in bringing out all their weapons for a 'new' cancer. You will get through this, and we are here for you.
Hugs
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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