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Steve53 Offline OP
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My brother had a CT scan of head and neck and also a PET scan yestedday on August 5th. The results were very good considering that the surgeon had indicated last week that spread into the lymph nodes and other areas was possible. More details on this on the introduction thread I posted last week. He has squamous cell carcinoma of the tongue, and the tests indicated that it is confined to the tongue, and hasn't spread to the lymph nodes or other areas of the body, which is really great news! He has had problems with mouth sores Dx'd as lichens platens since last fall with another ENT Dr so there was concern it has spread much more than recent testing indicates. He will be having a glossectimy next week and have reconstruction done on his tongue at the same time. There will be two surgeons involved; one removing the cancerous part and the other doing the reconstruction. He will probably have a PEG for a while and also a trach tube for breathing until the swelling goes down and his throat is open again. He will not be haing a neck dissection as the dr had indicated was possibly going to be needed at his first visit. They will remove some lymph nodes for biopsy in the area. He'll probably be in the hospital for a week, and off work for a month to recover. The determination of further Tx (Rad or chemo) will be made after what is seen during the surgery. He lives in the Rochester Mn. area and will be having it done at the Mayo Clinic. I will be traveling there next week for an ear surgery followup on friday Aug 15th so should be able to visit him when he's in hospital. Any suggestions are much appreciated. Thanks to all who participate in this forum!




Steve
Brother Dx SCC Tongue 7/28/14
CT scan and PET scan 8/5/14 Stage I
Glossectimy and reconstruction surgery sched wk of 8/11/14
Joined: Sep 2006
Posts: 8,311
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Great to less surgery! Tell him we will be thinking about him and do keep us posted.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Steve53 Offline OP
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Here is further info from an email my brother sen out last night. "Overall the day went pretty well, considering what potential news I could have heard.� The only cancer that was located was in my mouth and neck.� My body scan was negative.� I have a growth in the floor of my mouth extending to the underside of my tongue.� My surgeon believes they can remove the tissue and not impact major nerves in my mouth.� I may have to have chemo or radiation if the tests on the tissue edges show growth of cancer.� But they won't know until they remove it.� Some of the lymph nodes in my neck will have to be removed.� The tissue forming my mouth floor will have to be removed, and I will have to have a tissue graft.� The skin/tissue will probably be taken from the bottom of my left wrist.� A different surgeon will do the microsurgery to reconstruct my mouth under my tongue. It is estimated I will be in the hospital around 5 days, with another 4-6 weeks recovery after leaving the hospital.� Recovery time will depend on the need for chemo or radiation.� I will be on tube feeding for 7-10 days.� I will also have a trach tube to assist in breathing while at the hospital.� We were very impressed with the oral surgeon. He spent around an hour and a half explaining the surgery, answering questions and additional exams.�There is no cancer in my throat or nasal pa ssages / sinuses. I will have to have follow-up care to look for new cancer for a five year period.� It appears that my surgery will be a week from tomorrow, next Wednesday.� I will be meeting with both surgeons this Friday."


Steve
Brother Dx SCC Tongue 7/28/14
CT scan and PET scan 8/5/14 Stage I
Glossectimy and reconstruction surgery sched wk of 8/11/14
Joined: Aug 2014
Posts: 4
Steve53 Offline OP
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Posts: 4
Here is an update from my brother, Rick. I just talked to him , and he is pretty busy getting ready for his surgery, which has been moved up to this Monday , August 11th. I had suggested about joining the forum and also talked about the OC Foundation as a resource to learn more about his situation, diganosis, and treatment. He trusts the doctors very much that are doing the surgery; it sounds like they are some of the surgeons that other doctors goto to learn. He didn't have specifics on the staging of his cancer; and didn't think they used the same systems (TN) for oral cancer. He did say the doctors told him the tumor had started deeper in his tissue and then grew up to the surface, which is why he had more pain recently. I read some posts regarding the use of frozen sections during surgery to make sure that they remove all of the cancerous tissue; and Rick confirmed that they use this technique. He said they try to have a 1 cm margin of cancer free tissue removed aroun the edges so that they can know they removed all of it. He will have a neck dissection done, more in the front side to access under his jaw for rebuilding the floor of his mouth. Rick didn't thinkh that they were going to be dissecting the back side of his neck in how the surgery was explained. Is there any kind of a "guide" or list of questions that he and his wife should be asking at this point? He will not be able to talk at all for quite some time, and also his left hand where they take tissue for his mouth reconstruction will be out of commission for a while.


Saturday, August 9, 2014
Greetings-
I wanted to give everyone an update on my surgery. The surgery has been rescheduled for Monday, Aug 11. at St. Mary's Hospital in Rochester. I was told yesterday by Dr. Arce that my surgery would probably last 8 hours. I met and talked with the ENT surgeon, Dr. Eric Moore. He specializes in head and neck cancer and microvascular reconstruction surgery. He and Dr. Arce will do the surgery. Dr. Moore will do the tissue transplant to reconstruct the floor of my mouth. He will take the tissue from the underside of my left wrist, and reattach blood vessels with microsurgery. Apparently this process takes quite a while. They will be working through my mouth, and from the underside of my neck. The underside of my jaw/neck will be exposed, and they will remove my saliva glands, and some of the lymph nodes. Dr. Moore told me that if they didn�t reconstruct my mouth floor tissue, essentially a good portion of my tongue would be sewn to my floor, and that it would be very difficult to speak legibly. He told me I might not be able to speak legibly for 2-3 months. It was quite a scene when I met Dr. Moore, he came in the room with four residents, young men in their finest suits, gathering around me looking in my mouth. Sort of like One Direction goes to Sunday school. I�m feeling pretty good, I�ve had less pain this week, and have been able to chew and swallow better. So I�m going to try and have a couple good meals this weekend, because I won�t be able to eat regular food for quite a while. The feeding tube will be in for 7-10 days. This is scary stuff, but I feel remarkably calm, knowing I�m under the care of some of the best doctors and medical staff in the world. I�m actually glad they moved the surgery up two days, it would have been two more days of waiting.

I�ve been given hope. The one-week wait from my positive biopsy until my PET and CT scans was very hard. I didn�t know what to expect, I didn�t know if when I heard a song if that would be the last time I heard it. I guess my path is uncertain, but the beauty of life and the gifts from the earth are all around us. Every day is a gift.

Rick


Steve
Brother Dx SCC Tongue 7/28/14
CT scan and PET scan 8/5/14 Stage I
Glossectimy and reconstruction surgery sched wk of 8/11/14

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