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SoozyQ Offline OP
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Hi all, my name is Susie. My boyfriend and best friend was finally diagnosed this week with Stage 4, Well differentiated SCC, cancer of the jawbone. He is 53 and is in great health, never smoked or chewed tobacco. He is scheduled for surgery on July 6th. They are going to remove part of his jaw and replace it with a bone from his leg. He will have a trach for 3 days while in ICU and they are also inserting a feeding tube at the time of surgery. He will be in ICU for three days and total hospital stay of 7-10 days. My ex husband had throat cancer in 2006 but it was in his tonsil area (he is a survivor by the way). This type in the jawbone I'm not familiar with. Has anyone out there had this type of issue. Thanks so much for this site and the support here. I depended on this site for support in 2006.


Susie
"DIFFICULT ROADS OFTEN LEAD TO BEAUTIFUL DESTINATIONS"
Boyfriend and Best Friend diagnosed with stage 4, well differentiated SCC. Tumor in the jawbone area
53 years old, great health, never smoked or chewed tobacco
July 2016 - Mandibular reconstruction / Fibula flap
tumor removed and 4+ Lymph nodes
August 2016 - 6 weeks of daily radiation / 2 sessions of Chemo
Joined: Jun 2007
Posts: 595
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Hi, I cant help directly, but there are many here who can/will help.Just make sure he is seen at a CCC. Semper-Fi Bob


Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
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Susie,

I read your post and just registered on this site a couple minutes ago as it struck me hard. I am 52 and diagnosed with the exact same thing as your partner yesterday.

I'm sorry that I can't provide any support to you at this time as I am just starting my journey myself. I can only imagine the wave of emotions the two of you are going through as I am. So much unknown in which fear creeps in.

I will stay in touch as I suspect our families will be experiencing similar challenges along the way. I wish you both the best!!

Jay

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Hi Susie! I cant believe I missed your post yesterday, Im very sorry!!! Im also very sorry to read about what your BF will be going thru. Im sure you both are quite shocked. Unfortunately, there are many others who have no known cause for their OC. My guess is about 5-8% of OC cases have their cause as unknown. Regardless of why he became sick, he needs to get it taken care of so he can go on to live a long, happy and healthy life.

Has your BF gotten a second opinion? Just asking since surgeons always recommend surgery, radiation docs say rads is the way to go, etc. Once its taken out there is no putting it back. Of course thats what you want with cancer to eliminate it as soon as possible. But at the same time, you also want it done right the first time. At a comprehensive cancer center (CCC) they use a team based approach so all the specialists work together on each case. Their meeting the patient is allowed to attend, its called the tumor board meeting. If your BF hasnt been seen at a CCC and its possible to be seen at one, I strongly suggest you to at least go to hear what they have to say.

Being at a top CCC, there will be tools and methods used which smaller local hospitals arent as familiar with. The surgery will be a long one and waiting will feel like torture. His hospital stay will likely be at least a week. Being treated at a CCC, there should be speech therapists available to help him adjust to all the changes if he needs help. You can even ask if they have a visiting nurse program to stop by and check on him when he first goes home after surgery. Regardless of whatever treatment facility your BF selects its important for him to put his faith in his medical team and go with it, not looking back.

Please take some time to read and educate yourself so you can be a strong advocate for your BF. He should eat all his favorite foods now, before the surgery. His ability to eat could be compromised for hopefully only a very short time. But you never know how fast he will bounce back from surgery and if other treatments like radiation would be necessary. If so, there would likely be a much longer time frame of eating challenges. If your BF is on the slim side he should try to put on a few pounds prior to any treatments.

Hang in there! Its always a scary time when waiting for surgery and also while waiting for your loved one who is in having the surgery. Most patients get nervous and begin to worry about every single thing, especially the unknown and things beyond their control. For caregivers its even harder. They have the same worries but they try to hide their concerns and put on a smiling face and act upbeat even though inside they are struggling too. Stay busy and work on learning about your BFs illness. If he is having problems dealing with this or feeling overly anxious (completely normal for many OC patients), consult a therapist or doctor to help you manage the anxiety. Many caregivers also struggle too and reach out for some temporary help. If medication is prescribed it usually takes some time before results are seen so try not to put this off if you feel its necessary. Remember its only another tool to help get the patient and/or caregiver thru the rough parts. As a caregiver, take time for yourself once in a while so its not so much weighing on your shoulders. We will be here to help you as much as we can.

Anyone who offers their assistance, tell them when the time comes you will let them know what they can do to help. Make sure to write everyones name down and contact info for later. Down the road if you are overloaded with calls and texts you can "assign" someone the job of passing along updates. With a long hospital stay and not knowing if your BF will be able to speak right away you probably will want to arrange to have someone stay with him as much as possible while he is in the hospital. Not being able to talk is horrible when you are alone and the staff keeps asking questions and expecting a reply. I always got trays of food delivered even though I was unable to eat even a bite. That was horrible having the tray sit there and smell the food when I was laying there in pain and starving. There are so many small things you may need help with during and after rads. Over the years working on the forum, Ive seen most people genuinely want to help but many dont know what they can do so dont be shy if you need help... ask.

To prepare, if he hasnt already seen his dentist, try to make an appointment immediately. He may go thru radiation 6-8 weeks after surgery so he needs to take care of dental issues before the surgery. He should have a thorough check up, deep cleaning and ask the doc if he should get flouride trays made for rads. Anyone who undergoes radiation for head and neck cancer should wear fluoride trays on their teeth. This helps prevent major dental issues after rads. Also using a waterpik, having impeccable daily dental maintenance and getting regular (if not more frequent) dental cleanings.
Make sure your BF gets a full blood workup done including thyroid levels, men also should get testosterone levels tested too. If having rads, he may have problems years down the road with his thyroid. A blood test now ensures he will know what his regular baseline thyroid levels should be. Taking a pill a day to manage the thyroid isnt a big deal, but getting the baseline level is.

Best wishes with everything!!!

List of CCCs


PS... Welcome Jay! Please begin a new thread so we can all welcome you aboard.


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
Joined: Jun 2016
Posts: 8
SoozyQ Offline OP
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Posts: 8
Thanks for all your responses.. Greatly appreciated... It's been a little hectic so here is the update.. Two weeks ago today my b/f underwent a 9 hour surgery... Removed part of the jaw and the tumor and replaced it with a bar and screws...also removed 4 lymph nodes.. Harvested a bone out of his leg along with muscle and arteries, etc... Replaced the jaw with this... Skin graft on his thigh to cover the bone removal... He has done an amazing job recovering... He was in CCU for three days, total hospital stay 6 days... He had a trach and tons of drains, etc in the hospital... All were out before he came home.. Trach incision is healing nicely along with graft and leg... He's driving short distances, not much pain... Dr's are very impressed with his recovery.. He looks fabulous, just had some swelling. The surgical team was amazing and were highly recommended... Follow up appt was yesterday... Seeing an oncologist in August, going to have to do radiation and chemo... Went to the dentist today to get fitted for dental trays for the fluoride treatments...so glad to have the surgery behind us, the pain is now gone from the tumor pushing on the nerve.. These next few months will be rough for him but he's tough and has a wonderful attitude.. A day at a time... Will definitely keep you updated!!!!


Susie
"DIFFICULT ROADS OFTEN LEAD TO BEAUTIFUL DESTINATIONS"
Boyfriend and Best Friend diagnosed with stage 4, well differentiated SCC. Tumor in the jawbone area
53 years old, great health, never smoked or chewed tobacco
July 2016 - Mandibular reconstruction / Fibula flap
tumor removed and 4+ Lymph nodes
August 2016 - 6 weeks of daily radiation / 2 sessions of Chemo
Joined: Jun 2007
Posts: 10,506
Likes: 2
Administrator, Director of Patient Support Services
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Thanks for the update! Sounds to me like your BF has gotten thru the major surgery very easily. Wishing him all the best with a continued speedy recovery.


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
Joined: Jun 2016
Posts: 8
SoozyQ Offline OP
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Joined: Jun 2016
Posts: 8
Thank you... I know there are still rough roads ahead, but feels great to have this surgery behind us!!!


Susie
"DIFFICULT ROADS OFTEN LEAD TO BEAUTIFUL DESTINATIONS"
Boyfriend and Best Friend diagnosed with stage 4, well differentiated SCC. Tumor in the jawbone area
53 years old, great health, never smoked or chewed tobacco
July 2016 - Mandibular reconstruction / Fibula flap
tumor removed and 4+ Lymph nodes
August 2016 - 6 weeks of daily radiation / 2 sessions of Chemo
Joined: Jun 2016
Posts: 8
SoozyQ Offline OP
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Joined: Jun 2016
Posts: 8
Update.... Met with a urologist because something showed up on his kidney... Going to do a biopsy, but they think it's probably cancer. Could this be related to the tumor in his jaw?? Upset, here's a healthy guy who never smoked or chewed, exercised and is in great shape.. It seems so unfair frown


Susie
"DIFFICULT ROADS OFTEN LEAD TO BEAUTIFUL DESTINATIONS"
Boyfriend and Best Friend diagnosed with stage 4, well differentiated SCC. Tumor in the jawbone area
53 years old, great health, never smoked or chewed tobacco
July 2016 - Mandibular reconstruction / Fibula flap
tumor removed and 4+ Lymph nodes
August 2016 - 6 weeks of daily radiation / 2 sessions of Chemo
Joined: Jun 2007
Posts: 10,506
Likes: 2
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,506
Likes: 2
Im so sorry your BF is going thru so much. IF it is cancer unfortunately yes it could be related to the jaw tumor or it could be another primary. Only a biopsy will tell for certain exactly what it is. We have a couple sayings around here.... its not cancer until the biopsy says its cancer and sometimes a lump is just a lump.

Hang in there and update when you can. Best wishes with everything!!!


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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