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Joined: Jan 2019
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TammyD Offline OP
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Hi everyone,

I am 51 years old and am new to the forum. I had a sore area in my mouth that bled when I brushed and flossed from August-December 2018 and it was thought to be an infection. It was biopsied on 12/10/18 and I was diagnosed with SCC on 12/14/18. My consultation with the surgeon is 2/18/19 at Emory University Hospital in Atlanta. I have so many questions, but don't have a lot of information at this point.

I have never been a tobacco user and I don't yet know what is the cause of the SCC. My maternal uncle died of Oral Cancer in May 2010 at age 65. He was a former smoker and a recent chewing tobacco user. My grandmother had SCC on the back of her leg, but did not die of cancer. My oral surgeon that did my biopsy believes that there could be a genetic predisposition.

I had a CT Scan on 12/15/18 and it showed no change in lymph nodes that had been scanned in 3/2017 and 9/2017. In early 2017, I had felt a large lymph node in my neck under my jaw bone near my chin and it was scanned and we found 8 large lymph nodes. They were biopsied and found to be benign. A recheck in Sept 2017 showed no change. The CT scan in Dec 2018 also showed no change in size.

On Dec 26, 2018, I had a PET Scan. The summary results showed the cancer has not spread; however, there is reference to hypermetabolic activity in a lymph node in my neck and along my jawline and in the Buccal (check side) of my pre-molar teeth (the site of the biopsy) and also in the tonsils; however, I had my tonsils removed at age 7. The biopsy had clear margins.

It has been over a month since my diagnosis and I can feel changes in my gum tissue surrounding the area that was biopsied. I am wondering if there are things I should start or stop doing while I wait 4 more weeks for my surgeon consultation. I have stopped using mouthwash with alcohol, but even the non-alcohol based mouthwash sometimes burns the affected area in my mouth.

I am also wondering what can be done to ensure the cancer will be beaten and not return (if that is possible).

I am grateful for any advice others can share.

Tammy


Last edited by TammyD; 01-21-2019 11:10 AM.

12/14/18 SCC Lower L gum near L Molar
12/26/18 PET/CT scans showed no spreading
4/15/19 surgery to remove a large piece of lower left jawbone with 5 teeth attached, 54 lymph nodes tested were negative, stage 1 SCC had not spread beyond initial site, Feeding tube through nose for 10 days
May/June 2019 - starting to investigate reconstructive options - create a new jawbone that will support dental implants is an option
Joined: Jun 2007
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
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Welcome to OCF, Tammy! Im sorry you have been recently diagnosed with oral cancer (OC). In some patients its just not possible to determine what caused their OC. There are just soooo many variables even if it would be from a genetic predisposition. Actually quite a few here are part of the "no known cause" segment that is 5-7% of those diagnosed.
Regardless of what caused your SCC, it needs to be eliminated.

If you havent already gone for a second opinion you might want to get started making those arrangements. If you are able to go to a comprehensive cancer center (CCC) even better. The CCCs are the best of the best in the US. Patients treated at CCCs have better outcomes. CCCs attract the brightest and best physicians who use a team based approach so all the specialists are on the same page discussing each patients case at tumor board meetings. Patients and caregivers are able to attend as well.

Theres a million and one little things to do prior to any treatment weather its surgery alone or surgery followed by rads with/without chemo. I suggest spending time reading here and also on the main OCF site about your illness. Educating yourself about OC will help to make you a better advocate for yourself. For now anyone you talk to about your illness that offers their assistance take their name and full contact info down. Let the family and friends who offer their help know when the time comes you will let them know what they can do to help.

For now you may want to start eating all your favorite foods, desserts too. No matter what treatment plan you will have, your ability to eat is likely to be temporarily compromised. You definitely do not want to go into this with any food cravings so eat your favorites now before any treatments.

Best wishes with everything!!!


Christine
SCC 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 smile
Joined: Jan 2019
Posts: 3
TammyD Offline OP
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Joined: Jan 2019
Posts: 3
Thank you, Christine! It helps to have advice from those who have been there. I am a natural planner and like to plan my future vacation trips and other activities, but with this weight on my shoulders, not knowing what treatment I will have and what kind of timeline I have before me, it is stretching my patience and helping me see that there are so many things outside my control. It helps to have some things that I can control.

I am not exercising currently. I assume that it will only help to start exercising and building muscle. From many things I have read on this site, it seems most people lose weight and it is often muscle weight, which is not healthy. I would love to lose excess fat without the muscle loss, but that's not in my control either.

I have read on some sites that some vitamins and minerals help stop the cancer cells from doing more damage, especially beta carotene and vitamin A. I am trying to eat a diet higher in these foods.

I have read much about losing taste sensations and things tasting like metal. What foods did you find easiest to eat? I'm thinking protein drinks and bland soft foods. Before and after my biopsy, there are areas of my mouth that burn when I eat certain spicy foods and some chocolate.

I am a single woman and live alone with my dog. My mother lives about 4 miles away. Assuming I will have surgery, which is what the oral surgeon that did my biopsy believes, will I need a caregiver full time or could my mom come twice a day to check on me. Will I need to make arrangements to board my dog or have someone care for her? Will I have energy to get up and walk her during my recovery? How many weeks will I be out of work or will I be able to work at home?

There are so many questions running through my mind and I know every person is different and no one knows these answers. But, that is where I am right now in processing my situation.

I have not gotten a second opinion, so that is great advice and looking for a CCC.

Thanks for your support,
Tammy


12/14/18 SCC Lower L gum near L Molar
12/26/18 PET/CT scans showed no spreading
4/15/19 surgery to remove a large piece of lower left jawbone with 5 teeth attached, 54 lymph nodes tested were negative, stage 1 SCC had not spread beyond initial site, Feeding tube through nose for 10 days
May/June 2019 - starting to investigate reconstructive options - create a new jawbone that will support dental implants is an option

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