#87585 01-08-2009 09:32 AM | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 |
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
| | | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | Good article Ray - she was lucky that she had people to help her make the treatment choices. Her attitude is so good. It proves what everyone says about being positive.
Patty
48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Now that is a thinking young lady. She went for the gold and got it. Seems she has a great attitude and I bet she still does.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | 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 | Thanks for posting such a nice article. Its always nice to see people overcome obstacles and go on to help others.
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: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | I just wonder why anyone has to convince a physician that they need a biopsy?
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: Mar 2002 Posts: 4,918 Likes: 70 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 70 | and I don't get this.... we have people die everyday from tongue cancers
"Granted my cancer wasn't life threatening, but still, I faced the very real risk of losing the ability to speak. It was up to me to make the best of my situation."
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | | | | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | I'll go one step further: "At her first pediatric oncology appointment in Fort Worth, Morton's doctor and nurse said they had never seen a case of tongue cancer before and were unsure of the best treatment method. So they gave the patient various treatment options, and then asked her to choose." Why would anyone get treatments for something this serious when their doctor and nurse had never seen "it" before? Indeed, the writer is misleading every reader. "wasn't life threatening"??????  The author is badly mis-informed. Congratulations to her surviving 5 years in spite of the idiots treating her.
Last edited by Mark; 01-09-2009 05:20 AM. Reason: toned it down
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
| | | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Like Mark and Brian, I too have mixed feelings about the article. ACS is not known to publish much of anything about OC, other than cursory information, so I am glad to see that at least they gave it some notice.
Yes one can find flaws in her doctors to be sure. But who hasn't? I was repeatedly misdiagnosed by doctors, dentists, hygenists and even an oral surgeon.
I was particularly struck by all of the toys and kids stuff in the RT treatment room, and when I asked, UCSF has a special day of the week that they have all of the children in for RT. Very tough on the techs.
You have to admit that she is a courageous little girl who demonstrates an excellent job of being her own advocate, a lesson we can benefir from.
Last edited by Gary; 01-09-2009 06:06 AM.
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | I basically followed the same path as Gary in my steps to dx. And I was really impressed with Morgan, especially that she went through this at the age of 16 and was such an advocate in her care. If you had put me in her situation at the age of 16, I probably would be dead. When I came across the article I was shocked to see such a young person go through this(the youngest?) and take control. I would love to know more about her tx, dx, treating facility and her parents participation in her decision making. The article makes it sound like she was all alone in this process and that she was surrounded by amateurs. I'm sure that a lot more happened then penned in the article. I was so overwhelmed with the survival skills of this girl that I had to reread the article to get the other perspective. She survived and it sounds like she had the same tx plan as a lot of us. I would like to know more of her situation...MD Anderson in Houston is about 2 to 3 hours from Austin, Tx, I wonder why they didn't go there? There has to be more to this story then written.
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
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