#14616 11-01-2003 08:31 PM | Joined: Nov 2003 Posts: 5 Member | OP  Member
Joined: Nov 2003 Posts: 5 | Hi,
I just discovered this site and it has been such a blessing already.
My husband,Jim,was diagnosed with SCC base of tongue in April of 2002. He is 44 and never smoked and drinks very occassionally. He had a 6cm mass. It did not spread to any lymph nodes but since the mass was so large we decided against surgery to try to maintain some quality of life. He had radiation with chemotherapy and then brachytherapy. He was put on a G-tube immediately because he couldn't keep any food down from the chemo. He had the G-tube removed in October 2002. He was doing quite well and by last Thanksgiving ate a full meal. Then in the beginning of December 2002 he developed an ulcer on the inside of his jaw bone. The pain was so bad that he had to have the g-tube reinserted. It has been one year now and he still has the g-tube. The only thing he can take by mouth is water and liquid soups. The pain is now gone. We discovered he had a bad infection that could not be treated by oral antibiotic so he went on an iv for 4 weeks. He now feels great!! His jaw however can only open enough to fit a toothbrush in. Half of his tongue is numb because a nerve was hit during a biopsy. We don't know if the sensation will ever come back. He also has some swallowing problems. To most people this would be pretty hard to live with but Jim is such an optomist. He is so happy to be alive. Even though he can't eat he loves life.
During the past year we have had many false alarms. Everytime Jim experiences any pain the doctors think the cancer is back. Jim has had several biopsys and they have all come back negative. The problem we have is that all the PET scans and MRI's alway show that there is something there and the doctors do not know if it is tumor or radiation damage. They say Jim's tests will always look abnormal. They just have to keep comparing them to the most recent test. Last Monday Jim had another MRI and there is definitely something suspicious. He will be going in the hospital this Wednesday for a biopsy. He cannot have anymore radiation so if it is positive the only option we have is surgery.
The question I have for anyone out there is for recommendations on head and neck surgeons. If Jim does need surgery I want to find a surgeon that is an expert on reconstruction. He will need a free flap for the ulcer. There is no blood supply in that area so it will not heal. I live in Southern California but we are willing to travel to find the right doctor. We have been about everywhere here.
It is just so great to have someone to ask these questions to. I have been feeling so alone, getting conflicting information from our doctors. I hope to be able to help any of you out there with our experiences. | | |
#14617 11-01-2003 11:22 PM | Joined: Oct 2003 Posts: 49 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Oct 2003 Posts: 49 | I am sorry to hear of the many problems you are having. My surgeon who done my right radical neck dissection is reported to be the best hands here in Buffalo NY. His name is Dr Kuen Y Lee. He is with Buffalo Otolaryngology Group. 716-883-6800.
I hope this is of some assitance to you. Keep positve although I know how difficult it can be.
5-02 SCC T1N1M0 Stage 3 Right Tonsil
6-02 Right Radical Neck Disection
9-03 Recurrent SCC Dx Stage 4 unknown prim
12-03 7 Chemo
12-03 36 Rad
5-04 Left Upper Lung Wedge Resection neg
7-04 Right Parotidectomy
9-04 Began IMRT
10-04 Ended IMRT
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#14618 11-02-2003 01:02 PM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | I have sent you a private email with both local and long distance contacts. Please feel free to call me anytime to discuss these individuals.
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.
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#14619 11-02-2003 01:49 PM | Joined: Sep 2003 Posts: 139 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Sep 2003 Posts: 139 | Dear Maribeth,
I, too, sent you a private email re: my surgeon. Please feel free to contact me as I will gladly talk to you and your husband about all this. This is why we are here.... to help and be helped.
God bless
Judy U
Judy U
Stage I SCC floor of mouth, left radical neck dissection 8/03
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#14620 11-02-2003 02:36 PM | Joined: Aug 2002 Posts: 246 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Aug 2002 Posts: 246 | Hi Maribeth:
Keep the faith. There are excellent surgeons out there. My fiance, Dave, had a modified radical neck dissection with a flap graft taken from the radial area his arm. I would be happy to talk to you about this if it is presented as an option. While survival is the ultimate goal, cosmetic result is important to quality of life. It often helps to inquire if your head and neck surgeon is also a board certified plastic and/or reconstructive surgeon.
Please keep us posted as your paln evolves.
Best,
Kim
kcdc
Wife of Dave,diagnosed with Stage III Tonsillar SCC,August '02
Modified radical neck dissection followed by radiation therapy
'There is glory and radiance in the darkness and to see we have only to look"
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#14621 11-03-2003 01:18 PM | Joined: Apr 2003 Posts: 30 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Apr 2003 Posts: 30 | Maribeth, I have emailed you as well. We live in Huntington Beach and I can share our experiences with you. Stay positive.
Becky | | |
#14622 11-12-2003 08:25 PM | Joined: Nov 2003 Posts: 5 Member | | OP Member
Joined: Nov 2003 Posts: 5 | My husbands biopsy was NEGATIVE. So very relieved. We have decided to enjoy the holidays and then search for a surgeon that may help on the ulcer and eating issues. I want to thank all of you for your emails and information/encouragement. | | |
#14623 11-13-2003 04:12 AM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Gotta love those negative biopsies!! Congrats to you and your husband and do enjoy the holidays.
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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