| Joined: Aug 2016 Posts: 14 Member | OP Member Joined: Aug 2016 Posts: 14 | After numerous scans and doctors appointments in the past few weeks. Then a Tumor Board meeting. We are now going to get the word this week on a surgery date for my father. Estimated mid-September.
They told us that they are going to do a partial glossectomy with a neck dissection. Then they will reconstruct a tongue using a vein and tendon in his forearm. They say he will need a feeding tube and a trach tube for breathing.
Estimated that he will be in the hospital for 10 days.
Tumor Size is T2 and they say that it hasn't spread to lymph nodes but will be removing the adjacent ones as a precaution.
Also said that Chemo and Radiation will remain an option after surgery.
Hopeful that they will get it all out and we wont need any chemo and radiation.
Right now this we are all a little on edge as this sounds like a massive surgery with a very long road to recovery!
CareTaker for my dad (John Sr) Being Treated at Chao Family CCC and UCI Diagnosed T2 SCC BOT 8/9/2016 Partial Glossectomy w/ Neck Dissection Done 9/22/16 | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Im glad your father has a treatment plan set up. Im sure everyone in your family is feeling a bit overwhelmed by all of this. Its ok to lean on us, we will help ease your fears and answer your questions. Many of our members have gone thru similar surgeries. Its a fairly standard procedure to use tissue from the wrist to rebuild the tongue.
Heres a few pointers to make this as easy as possible for everyone involved .....
Unfortunately after major surgeries, a patient can be in considerable pain and discomfort. Ask the doc to write orders for 2 different pain meds for your father while he is in the hospital. This way he will not have to wait until the right time if he is having a day where hes in alot of pain. He can switch off and on so his pain is better managed than if only taking one pain medication. He could have some very intense nerve pain. I found prescription liquid neurontin (gabapentin) worked very well on keeping it manageable. Remember with a feeding tube, your father can have medications given right thru the tube. Just be sure to rinse it with at least 60cc afterwards.
Try to have someone stay with him as much as possible. Even staying overnight if they allow it there. He probably wont be able to speak and will have all kinds of people in and out of his room. Many of them will talk to your father (either not having access to or not taking the time to read his chart) and expect him to talk back. By having someone with him around the clock your father will have someone there to advocate for him. You can even split it up into shifts and divide it up among a few people. Anyone who offers their assistance to help your father can be a good source to help staff the hospital stay and later help him when he goes home.
Take along dry erase markers and board for when your father is feeling well enough to write to communicate. You can even make a few flash cards that he can hold up to make this as easy as possible. Most commonly used words are YES, NO, GET THE NURSE (or DOCTOR), IM IN PAIN, BATHROOM, etc.
Ask the doc if he expects your father will be able to talk when he is released from the 10 day hospital stint. If so, ask the doc for a possey muir valve trach. This is the type that allows a patient to talk (if they are capable of speaking). I had that type and it was a huge help by allowing me to communicate with the medical staff. I wasnt lucky enough to have someone stay around the clock with me.
Check about having a visiting nurse to check in with your father a few times a week. The nurse can check his progress with healing, watch for signs of infection, and redress his wounds. Many hospitals provide this service that many insurance companies cover. Often, its not offered and the patient or caregiver have to inquire about it.
You probably will be surprised at how quickly your father recovers from his major surgery. Most patients are doing great at only 3-4 weeks post operation. If he would need rads that usually doesnt begin until 6-8 weeks after the surgery. You can expect considerable swelling which takes a very long time to recede. Most of his swelling should go down within the first 6 weeks or so but it can take months for the rest to very slowly recede. Dont be surprised if he comes home from he hospital with his drains still in. His stitches probably will be the kind that dissolve and he could even have staples used in his wrist area.
There are many members who have knowledge about feeding tubes. Often Ive seen patients go home without any instructions on how to use the tube. A visiting nurse should be sent on your fathers first day back home to help with the feeding tube supplies and directions. Try your best to learn from the staff while he is in the hospital so you know how to use the tube at home. If you have questions just ask, I know lots of tricks to make using the tube easy. You could also do a search by typing key words in the search box located in the upper right corner of any page. Ive written hundreds of posts about feeding tubes.
If your father is able to eat, have him start eating all his favorite foods now. Dont worry about calories, your father will likely lose some weight due to the switch to liquid formula feedings. Dont be surprised if the hospital kitchen doesnt send him trays even though he cant eat. That happened to me almost every meal during my 2 month extended hospital stay. Even after being told day after day there was a glitch in communication and the trays kept arriving. I really hate seeing things go to waste!
I know Ive given you alot to process. I hope I havent overwhelmed you with giving you too much info. An informed patient and/or caregiver is a huge asset to the patient especially when facing a major operation. Keep us posted and best wishes with everything!!!
ChristineSCC 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 | | | | Joined: Aug 2016 Posts: 14 Member | OP Member Joined: Aug 2016 Posts: 14 | Thank you for all the helpful information! We are very fortunate that my parents neighbor is a pediatric oncologist and has offered to help out with the trech and feeding tube whenever we need help.
Just trying to stay positive that this is going to be the only surgery he will need to get rid of it all!
The Surgeon we have is working in Tandem with a Vascular surgeon. They have teamed up to treat a ton of OC cases. They come highly recommended and thus far have been a blessing.
CareTaker for my dad (John Sr) Being Treated at Chao Family CCC and UCI Diagnosed T2 SCC BOT 8/9/2016 Partial Glossectomy w/ Neck Dissection Done 9/22/16 | | | | Joined: Jul 2016 Posts: 85 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jul 2016 Posts: 85 | You, your father and the family are in my thoughts. Please keep us posted as he goes through his surgery and healing process. Remember during this time to take care of yourself too.
Sept 2002 Rt breast cancer no chemo or radiation. March 2015 Rt tonsil cancer - walnut size lump rt side neck. March 2015 Scan, biopsy confirm March 2015 Port, G tube placed, 10 teeth removed. July 2015 completed 5 chemo/35 radiations Sept 2015 Cat Scan all clear July 2016 G tube, port still in place Ive had Thyroid "graves disease" and Lupus for many years. 4 kidney stone surgeries past 3 mo with over 100 stones still there !
*** Update... Jo passed away 12/20/17 ... RIP Jo ***
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