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#193992 03-07-2017 07:43 AM
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Aandj Offline OP
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Life is very precious. I feel as though I've been constantly reminded of this throughout my life. I lost my father as a teenager after a long battle with heart disease and diabetes. My mother , whom I cared for died 6 weeks after colon cancer diagnosis. My 2nd husband died at age 37 during a hospitalization with pneumonia. My brother lost his battle with lung cancer a couple of years ago. On Valentine's day, my 39 y/o husband came home from the oral surgeon after receiving the devastating news that he has cancer on his tongue. I will be his primary caregiver. PET scan shows activity in 1 node. His surgeon has advised that 1/3-1/2 of his tongue removed along with neck dissection followed by radiation. His surgery is scheduled for 3/27. At first I felt hopeless. After researching and finding support groups like this I feel better informed about the challenges that we will be faced with. I think this is helping to reduce the fear for me. I know it is going to be a long bumpy road but I'm feeling positive now.


Wife to James 39,
Scc tongue dx 2/14/17
Partial glossectomy & neck dissection 3/27/2017
T2n0m0
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Welcome to OCF! Im so glad you have found our group to help get both you and your husband thru his treatments and recovery. We will help with info and support.

By reading and educating yourself about your husbands disease, you will become a strong caregiver who can advocate for your husband. Best thing you can do right now is to encourage your husband to eat as much as he can. He should have all his favorites and desserts too. This is especially important for him to gain a few pounds if he is on the average - slim size. He doesnt want to go into this with cravings for his favorites thats why Im mentioning to have them now.

Theres a few things you can do to prepare for the big surgery. If any friends or relatives offer their assistance, tell them when the time comes you will let them know what they can do to help. Theres a million small things that all add up to be so much on the caregivers shoulders. Thing like walking the dog, picking up children or taking them to their events, cooking dinner (you still need to eat), doing a load of laundry, and picking up medications at the pharmacy are a few things that can help you both. If you can line up a few people to take some shifts at the hospital when he has his surgery that would be a great jump on getting prepared. Since its likely he will not be able to be understood right after the surgery, someone should be with him as much as the hospital allows. If possible, someone there to be his voice during the first couple days. Too often patients who cant speak, hospital staff will walk into the room at all hours of the day and night expecting him to talk to them to answer questions. Or, the staff may not be as responsive as they should be when the patient rings for them so having someone there to help them is a huge relief for both the patient and caregiver.

Make sure you take some time to take care of yourself too. You have been thru far too many close relatives passings that this situation must be very difficult for you. We will help you so feel free to ask questions, read (both here and on the main OCF site), and if necessary to vent.

Best wishes!

Main OCF Site ---- Understanding OC, Complications, Etc...


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: Mar 2011
Posts: 1,024
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Posts: 1,024
Hello Aandj,
I am so sorry that you have need of us, but welcome. You have dealt with more than your share of life's challenges.
There are many on this site who have had a similar diagnosis to your husbands and I hope someone will come along soon to encourage you.
This is a difficult path and life will get stormy for awhile, but it is very doable. Keep coming back here for support and advice. Ask anything you need to, we are all here to encourage , advise and support you both.
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
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Aandj Offline OP
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80% sure he will need radiation. The Pet showed hot spot in 1 lymph node. We will know 1 week after surgery when the pathology report comes back. We are hoping he will be able to return to work when fmla is exhausted.


Wife to James 39,
Scc tongue dx 2/14/17
Partial glossectomy & neck dissection 3/27/2017
T2n0m0
Joined: Apr 2017
Posts: 16
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Posts: 16
Hi there im brand new to this blog so bare with me. I briefly read over your husbands situation. Im sorry to hear that ur goin thru this. Stay positive for hubby, im sure you caught this and will get the required treatment. However, if I can say one thing. Do RESEARCH trust me I know the fear of having the C diagnosis. I was 42 n knew nothing about C. All I knew was GET IT OUT. So I had to do the radiation therapy. But I also had surgery as my 1st Choice n opt for the RADS.

Again...ur hubby probly nothibg like me...just please research ur options is my advise. Good Luck. I'll be praying for you all.


SCC 5/21/09 Base Of Tongue, Stage 4-age 42
5X Cipltn, 37 IMRT end 9/09
10/09 neck disection- 2nd Feed tube instal
2/11 Tracheostomy-
2/12 - 2/13 over 25 Diolations
2/14 Total voice loss
2/15 Total Laryngectomy Researched
2/16 Jaw bone starts to deteriorate TL put on Hold
6/16 30+ HBO dives
Annual PET shows NED until the hot spot lights up the jaw bone
1/17 Jaw Replacement research
Joined: Apr 2017
Posts: 16
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Posts: 16
If I remember correctly, isn't it possible surgery can remove all the cancer (providing it is). I had several Lymph nodes light up n im no Dr. Forgive me but dont Docs safely remove the nodes. I think so.

In any event, let's hope docs fix it all with just surgery. Besides if he ends up needing RADS maybe after surgery it won't be as intense as mine. I did NOT do surgery 1st....so that might be a game changer to his benefit.
Good luck , hon. 😉


SCC 5/21/09 Base Of Tongue, Stage 4-age 42
5X Cipltn, 37 IMRT end 9/09
10/09 neck disection- 2nd Feed tube instal
2/11 Tracheostomy-
2/12 - 2/13 over 25 Diolations
2/14 Total voice loss
2/15 Total Laryngectomy Researched
2/16 Jaw bone starts to deteriorate TL put on Hold
6/16 30+ HBO dives
Annual PET shows NED until the hot spot lights up the jaw bone
1/17 Jaw Replacement research

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