| | Joined: Sep 2011 Posts: 61 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Sep 2011 Posts: 61 | Hello, my name is Cherri and I was diagnosed with SCC of the tongue (right anterior) in May of 2011. My problems started back in late November when I became concerned about an ulcer that would not heal. I made an appointment with my dentist, he said it was nothing to worry about (called it a traumatic ulcer) and gave me a special mouthwash. After about a month the ulcer still would not go away. I mentioned to my dentist that I thought it was cancer and he told me that given my age and lifestyle that was most likely not the case. I have never smoked or chewed tobacco and rarely drink. However he did send me to an oral surgeon. The oral surgeon also thought it was nothing to worry about and gave me a paste to put on the ulcer. Over the next 9 weeks or so I saw him 2 more times and he finally decided a biopsy was in order. Sure enough it came back as SCC, moderatly differentiated. I was shocked, mad, etc. I was told on the Friday of Memorial Day weekend so I had a nice long weekend to sit and stew and drive myself crazy. The next week I was able to get into a cancer treatment center in Tulsa, OK. Had a PET scan which showed a possibility of cancer in a lymph node just below my jawline. I ended up not being happy with the ENT there (scared me by saying he might have to cut my whole tongue off). The radiation oncologist in Tulsa referred me to an oral cancer expert in Oklahoma City. I found out he is actually one of the top three in the nation for head and neck cancer. He and another plastic surgeon were able to do the partial glossectomy (about 1/3rd of my tongue) and reconstructed it with part of my forearm. I call it my "shark bite". They also did a selective neck dissection on the right. The surgery lasted 12 hours and I woke up with a trach and an ng tube. I had to have the trach for 4 days. I was in the hospital for 7 days. NG tube removed on day 7 after I demonstrated I had no trouble swallowing clear liquids and then soft foods. Two lymph nodes turned up positive but were well encapsulated so my followup treatment is 33 radiation treatments. I was offered the Erbitux clinical trial but just didn't feel it was for me. I just finished rad treatment 17 today so I am halfway through! So far I have a very minor sore throat (got some nice little sores back there) and just last week the taste issues hit me. It's been very helpful to read through all of the posts regarding which foods to try. Right now most things taste like paste or cardboard. I am finding that the blander the better. I really don't want another feeding tube so I am being very vigilant in making myself eat. Thanks to everyone for sharing their stories! You don't know how helpful it has been to me.
Do not go gentle into that good night. Rage, rage against the dying of the light.
31 @ Dx SCC of tongue right side May 27, 2011, no tobacco, light drink
Partial gloss. and ND June 2011 - 2 jaw nodes positive ("encapsulated")
33 rads ended 10/21/11.
Dx Non small cell lung cancer 05/18/15
| | | | | Joined: Sep 2011 Posts: 61 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Sep 2011 Posts: 61 | BTW, I am single with no children. My mom was my caretaker and "drill sergeant" through my surgery. So far I have been able to do my radiation treatments on my own. I drive 3 hours to Oklahoma City on Mondays and leave back for Fort Smith, AR on Fridays. The American Cancer Society has been able to provide me with free hotels for most of the time I have been here. My mom will take the reigns again for the last week and half of my treatment and post radiation.
Do not go gentle into that good night. Rage, rage against the dying of the light.
31 @ Dx SCC of tongue right side May 27, 2011, no tobacco, light drink
Partial gloss. and ND June 2011 - 2 jaw nodes positive ("encapsulated")
33 rads ended 10/21/11.
Dx Non small cell lung cancer 05/18/15
| | | | | 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 | Hi there welcome!! Your story is very similar to mine except I'm older - I also had ECE... But only one node involved. I'm glad you're doing so well with rads and it's great you pushed to get treated by someone who's got. Great reputation! Sorry you have to be here but there a lot of people here who are willing to help and listening. Take care!
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: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Wow! You're story is a lot like Cheryl's only she's a crazy Canadian and really old and stuff  ! I only share my stories on these forums for important people to read, so it's a rare honor to be sure...and everyone else has stopped listening to mine but that's beside the point. You're welcome! I'm glad that you've found us, sorry you had to! Welcome to OCF, make yourself at home, just pick up after yourself Sorry, in a mood tonight! Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | 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 | I am a crazy Canadian!!  and really old is a state of mind Eric! sorry about he typos - iPad malfunction! good luck with everything!
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: Sep 2011 Posts: 61 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Sep 2011 Posts: 61 | Yes I am so glad I went to the doc in OKC. It is not the most convenient thing but I am so confident in him. I truly believe he has saved my life!
Do not go gentle into that good night. Rage, rage against the dying of the light.
31 @ Dx SCC of tongue right side May 27, 2011, no tobacco, light drink
Partial gloss. and ND June 2011 - 2 jaw nodes positive ("encapsulated")
33 rads ended 10/21/11.
Dx Non small cell lung cancer 05/18/15
| | | | | 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 | thats primary! trusting your dr. is very important! so glad you're doing well!
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
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