#16925 01-18-2005 01:56 PM | Joined: Jan 2005 Posts: 5 Member | OP Member Joined: Jan 2005 Posts: 5 | My name is Amber, I'm 29yrs old and and the daughter of a very brave man battling oral cancer. My father just turned 60 back in November and has been battling cancer for a little over three years now. He thought he had bit his tongue in his sleep and it didn't heal for some time, they decided to do a biopsy and discovered he had cancer. He lost about 1/3 of his tongue that time. The second time they found cancer it was in his gums. Everytime we think he has it beat, it comes back. I'm here right now because frankly I'm scared to death and worried sick about my dad. He's scheduled for surgery on 02/01/05 and it's not going to be just a couple hours in surgery it's going to be all day. He's losing a majority of his lower jaw bone, they are replacing it with bone from his leg. They are also gonig to take most of what's left of his tongue and build him a new one (not sure how that works.. I was in shock when they got this far in telling me). He will have a tracheotomy and be on a feeding tube. My mom and dad are handling things pretty well. Dad hasn't complained about the surgeries and having cancer, his only complaint is that he has a lisp and slurs his words occasionally. Mom is taking things a day at a time. I wish I could be as brave as they are. | | |
#16926 01-18-2005 04:07 PM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 837 | Amber,
Welcome to the OCF site. I'm sorry you and your family have had to experience this over the past several years, but you'll find a group of people here who can offer support in many different ways.
What stage was your father's cancer when he was diagnosed? Has he been treated in a major cancer center? Has he had radiation at any point in his treatment? If you can give us a few specifics, you're likely to hear from others who have had similar diagnoses and can give you their thoughts.
Unfortunately, this disease often seems to take as much of a toll on the caregivers as it does on the patient. Please try to be strong for your Dad -- I think as you visit this site and learn more about those who have been through difficult treatments and survived, it may help you deal with his situation.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#16927 01-18-2005 05:23 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | Hi Amber, I had the surgery your father is getting ready to have and it's really not as horrible as it sounds. I was in the hospital for 11 days, and after the first 5 days was feeling pretty good. I had no pain at all in my face or neck, the only pain I had was in the leg where they took the bone. Pain medication will keep that under control. I had the surgery on April 16th, 2003, almost 2 years ago, and I am amazed with how well I look and that my leg is close to normal. My leg does have some definite weakness and gives me some issues, but nothing I worry to much on. Has your dad had radiation at all? Take care and know that your dad can do this. The tracheotomy will be the toughest thing for him to handle. I was very scared of it for the first two days but found a way to relax about it. Take care, Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#16928 01-18-2005 05:37 PM | Joined: Jan 2005 Posts: 5 Member | OP Member Joined: Jan 2005 Posts: 5 | Cathy, I'm not sure what stage? No he hasn't been to a major cancer center.. it's all been done at the local hospital. He will be getting radiation after this surgery.
Minnie, thanks for the reassurance. I'm glad you have healed well. Gives me hope for my dad.
Thank you both for the welcome and kind words.. it means a lot. | | |
#16929 01-19-2005 01:57 AM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 837 | Amber,
I would STRONGLY advise your father to get to a major cancer center (there is a list of them on this site if you look in the "Other Resources" section). Oral cancer can be very tenacious and sometimes very aggressive and it typically needs to be attacked with the concerted, multidiscplinary approach that you find at a comprehensive cancer center. If you read about the experiences of others on this site, you will find quite a few who started at a local hospital, had a recurrence, and found with hindsight that they would have been better served by treatment at a cancer center from the outset. I know that this can mean some additional travel compared with a local hospital, but in a situation such as your father's where the cancer has returned more than once, the extra level of caution can be worth it.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#16930 01-19-2005 04:00 AM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | Amber, I can't think of one reason why your father hasn't had radiation yet other then the fact that he is not at a major cancer center. In your position I would be taking my father for a second opinion and quickly. Brian can help with finding a good facility in your area, as can Gary. Take care, Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#16931 01-19-2005 07:46 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Multiple recurrences are very serious business - you must get him to a comprehensive cancer center for a second opinion so that there is no second guessing of the treatment plan. Tongue cancers tend to be more aggressive than other forms of oral cancer are almost always initially treated with radiation as well, usually in conjunction with chemo and/or surgery.
Your parents sound very brave - what a wonderful role model they are for you.
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)
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#16932 01-19-2005 09:35 AM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2003 Posts: 1,163 | Dear Amber,
Good luck to your Father as he starts another round of treatment. I would heed the above advice about getting a second opinion and also at a major cancer center who see's alot of head & Neck Cancer victims. You want your Father to have the most up to date treatment he can get.
Best Wishes, Danny Boy
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#16933 01-19-2005 11:36 AM | Joined: Jan 2005 Posts: 5 Member | OP Member Joined: Jan 2005 Posts: 5 | He's been seen at Balboa Naval Hospital. Not sure how up to date they are? He has an oral surgeon, a radiologist (I think thats what they are called?) as well as a handful of ENT doctors that have been seeing him for the last three years. He will be getting radiation after the surgery. They talked about sending him to Long Beach to have it done?
I'll take a look at the cancer centers for mom, maybe she can talk him into going to one.
They haven't done any chemo at all and haven't talked about it, except to tell us that if the cancer comes back after radiation they can't do anymore radiation and they will have to do chemo? | | |
#16934 01-19-2005 12:03 PM | Joined: Jan 2005 Posts: 94 Senior Member (75+ posts) | Senior Member (75+ posts) Joined: Jan 2005 Posts: 94 | Amber,
Like Minnie, I had pretty much the same surgery. My tongue wasn't involved, but lymph nodes were. I lost half of my jaw and had a fibular (leg bone) graft. Surgery lasted 14 hours and I was in the hospital for 14 days. When I got back on my feet, I started radiation treatments -- 7 weeks. That was 2 years ago.
Your dad's got some hard work ahead of him, but he can do it. I agree that he should have a second opinion. I was treated in Orange, CA at the Chao Family Comprehensive Cancer Center at UC Irvine Medical Center. It is an NCI designated cancer centers.
I'm not going to say one bad thing about naval hospitals, because I just don't know. However, I do believe that I was treated well at UCI.
Good luck. Your dad is lucky to have you on his side. Your mom, too. It's normal to go numb when the doctors start talking about all this stuff.
Suggestion: I wish I'd kept a journal throughout this experience. Symptoms, treatments, questions, answers. Maybe you could start one for your dad.
Ken
SCCA T2N1M0 diagnosed 11/02, radical neck dissection, 7 weeks radiation, 6 surgeries to deal with osteonecrosis, 10 weeks hyperbaric oxygen. "Live strong. Laugh often."
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