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#117391 06-02-2010 07:30 AM
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I really hope everyone is doing well. I just wanted to post that I'm still waiting for the results from biopsy. I had the biopsy last Monday but with the holiday weekend, it could be delayed a bit. My follow up appt is on Monday, and they may just wait to tell me the results at that time. I went home to Oklahoma this weekend and it was good to be around my cousins. I'm trying to remain calm but the waiting is so hard. MD Anderson called me on Saturday and got all of my insurance verified. They were very kind and wanted to call me on Saturday because they would be out of the office on Monday. I have copies of CT scan and now I'm waiting on pathology report and they will see me. The lady explained that MD Anderson is not a diagnostic hospital but because if my labs come back suspect at all, they will see me. I'm nervous but taking it one day at a time. Somtimes I take it one minute at a time lol. I also had my follow up with ENT yesterday. He was very patient and showed my my scans and looked at a small bump that is on my mandible rigth beside the biopsy site. The bump is not on the other side but he said that it was just a part of my mandible and if it were anything more it would have shown on the CT scan. In his defense he pulled back up the scan to view that area again. I appreciated that a lot. When i was leaving he said we would do another CT down the road to monitor the Cyst in my nasal passage. I asked him if he wanted me to contact him for follow up if my biopsy came back unusal. He told me yes, and then said, "I can't imagine it would come bak as anything other than inflammation." I thanked him and left. He was very kind and took a lot of time with me. He stated that I looked better and he was glad to see me smiling. I really don't fault him and hope that I can continue to smile when I get my results. The only thought that made me sad, is that if another 30 something went to him for help and left that office feeling great but wasn't educated enough to know to go for a second opinion. I live in Dallas TX, and saw my ENT at UT Southwestern which is a teaching hospital and my ENT is so dated in his knowledge. But I'm still grateful for all of his help and for him ordering the scan. I think he helped me as much as his knowledge allowed him. So here's praying to great results for me and continued good health for everyone on this board.


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sherrone #117395 06-02-2010 09:42 AM
Joined: Sep 2009
Posts: 618
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Posts: 618
Sharrone,

Good to see you calmer. Probably just as scared, but you have a plan now. Your experience with your ENT is (sadly) not that unusual. You have done a great job of being your own best patient advocate.

I'm still hoping your biopsy will come back negative, and given the information from Brian, the odds are heavily in favor of that result. We will be here regardless.


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
Kelly211 #117399 06-02-2010 11:17 AM
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Thanks Kelly! I have read all of your posts. I was reading just last night about how you found out about your cancer. It was very well written and just very honest in regards to your feelings and the emotional aspect.

I'm glad that I've calmed down a little too. I was making myself very ill. I'm still on pins and needles but praying for a good outcome.

I've been through a lot in my early years. I was married really young and widow by 22. My husband was a West Point graduate and captain in the military when his long life ended at the age of 24. He had such a bright future ahead of him. When our young men and women enlist in the military, they know there's a chance of bloodshed, but still sign up to serve our country. I know my experience doesn't compare to the sacrifices our armed services members make.....but it seems to me that everyone here has been through a war and is definitely a survivor.

Thanks again Kelly for the reply.


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sherrone #117406 06-02-2010 02:17 PM
Joined: May 2009
Posts: 1,412
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Sherrone,
I will be thinking of you and hope that your biopsy comes back negative. Where in OK are you from? Do you enjoy TX?


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
walknlite #117408 06-02-2010 02:58 PM
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Hi Angelia,
I grew up in Lawton, but went to college at UCO in Edmond. I've lived all over including Japan and London. I lived in japan due to my family being stationed there. I took a job in basketball operations after college and ended up in Brighton, England and London. I really enjoy Dallas. My kiddo is kinda high maintenance and likes to be entertained. I find that Dallas has much to keep him entertained. He was born in London and started traveling the globe when he was only 3 months old. He hasn't stopped since smile

Are you in Tulsa? I really like Tulsa too. It also has a small town feel in a pretty good sized city. Thanks for the well wishes. I have also read your story on the boards. You seem like a very strong person with a good head on your shoulders smile




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sherrone #117442 06-03-2010 02:10 PM
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The oral surgeons office called and they just received the results from biopsy today. The dr wants to see me tomorrow at 2:00 pm to go over the report. My follow up appt was already scheduled for Monday at 3:30pm. I've been doing ok this week but kinda nervous again. I was kinda feeling a little better because I thought, "no news is good news." Anyway, I was already working a half day because I was flying home to Oklahoma. I didn't want to be alone during the weekend. So now as soon as I get the results, I'm on a plane to be with friends and family. I'm still praying for good news.


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sherrone #117464 06-04-2010 10:19 AM
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Keep us posted Sherrone! There are so many people on this forum that are following your story. Good Luck!


Cancer found on left bottom portion of my tongue on March 9th. Non-smoker and light drinker. Tumor removed March 30th. Stage 1. No chemo. No radiation.
Ashley090186 #117468 06-04-2010 06:43 PM
Joined: May 2009
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What were the results?? I live near Tulsa, but all my Dr s are in TUlsa. I am actually about 40 miles north.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
walknlite #117476 06-05-2010 07:42 AM
Joined: May 2010
Posts: 34
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So severe dysplasia with areas of hyperorthokeratosis. I don't think I understand the dfference between hyperkeratosis and hyperorthokeratosis. The surgeon said he got it all with an excisional of 1.25 cm. The area is healing well with a slight white patch right near my cheek. I was kind of worried because before i knew a white patch in the mouth could be dangerous, I thought it was a white stain from my whitening mouth wash. I told the dr that I had taken my tweezers and removed chunks of it before I went to my dentist appt and my regular dentist discovered the spoy. Now I know how dumb that was. But to be honest, before all of this I hadn't even heard of oral dysplasia. He said he thinks it should still be ok and we will just monitor it. I feel relieved but yet uneasy. This has been an exhausting experience. He didn't mention a time frame for watching it so I assume it's at my regular 6 month dental cleanings. He also looked at the bump near where the white spot was and said he thinks it's nothing. I've learned a lot from this forum but still feel at a loss as to how to proceed in my own situation. The dr did tell me that he saw the white areas where my tonsils were removed and that usually anything bilateral was a normal thing.


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sherrone #117482 06-05-2010 10:34 AM
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So happy your tests turned out ok. Now you can better understand why everyone was telling you to stay calm. Its Not cancer til they say it is.

Dont forget there are always the main OCF pages to find lots of important info regarding your diagnosis. There is a search there too.


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
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