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#195944 03-24-2018 06:38 PM
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I have seen my head/neck surgeon at the Hopkins CCC and I now have some idea of what my treatment will be. My left mandible will be removed from my chin to my earlobe. Some floor as well but no tongue surgery as of now. All the lymph nodes on the left side of my neck will be removed. My left mandible will be reconstructed from bone in my leg. The surgeon seemed confident of the prognosis, even though I still have PET scans yet to be done, and that I would be able to speak and eat normally after healing. The surgeon estimated 6 weeks of radiation therapy post op. I also should not need a trach. I am lucky I live in Baltimore so close to Hopkins and I have a very proactive and supportive wife. I have a 10 year old son who I worry about, how he will handle all this. So, I'm looking for any info regarding how things will be when I wake up and how long it takes to heal after something like this. I am a professor, and talking is my bread and butter, so I worry. I have already met a few people here and as I said, there are true warriors and angels here. I mean that. Any knowledge or experience to pass on is appreciated.


Not sure
Trout125 #195950 03-25-2018 01:50 PM
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Im very sorry to read about what you are facing. Its a difficult surgery with a long recovery. Of course this depends on so many things like tumor location and size, patients overall health status, age, how much is being removed, even the experience of the surgeon plays a roll in this. Ive had a mandibulectomy as well... twice! Ive know several others who have been thru it too. This is one of those things where every single person's experience is unique. I had a rough time while several friends sailed right thru it without having visible scars unless someone knows and looks for them.

Im surprised you will not have a trach! That is normally a given with this type of surgery. Same goes with a feeding tube. Most patients have significant swelling and need those items to get thru at least the first few weeks of their recovery.

If i were you I'd expect to be in the hospital for at least 2-3 weeks and not feeling the best for a month or more after surgery. You may be kept asleep for the first couple days after your operation, so prepare your loved ones that its routine and perfectly normal. You could have significant swelling and be kept in the ICU your first week or so. Drains are likely to be used to help remove any fluid buildup. Infection is something the hospital staff are very careful with. I'll be completely honest with you... for me it was not only a very painful procedure but recovery was very long as well! I had complications so my memories of this arent the most positive ones. Make certain your doc sets you up to have 2 different pain meds. This way you dont have to wait until the right time if you are feeling alot of pain. You can switch back and forth between the 2 so you can stay as comfortable as possible thru your hospitalization. Dont be shocked if you are slow to bounce back... its a major surgery and will take you a while to get back to normal, maybe a year, maybe more especially with having rads. You may have skin graphs and/or staples used to lessen scarring. Its definitely not something I would ever want to experience again in my life but it is necessary and doable. Make sure you round up people you can have stay with you while you are hospitalized. If possible get people to stay 24/7, even if you are sleeping. Its a huge help to have someone run interference between you and the medical team when you wake up from this major surgery. Dont be surprised if you dont remember much of your hospital stay.

Children are resilient, much more than parents realize. Talk with your son and prepare him to see you looking a little different until you heal. Teach him about OC and how it negatively impacts your life. Kids are smart and really want to know about things, especially with it happening to you right in front of him. When your son is 12 (before he is sexually active) get the guardisil shots for him to protect him from many HPV+ diseases like anal cancer, oral cancer (base of tongue/tonsils), genital warts and a few other preventable HPV+ diseases.

Ask questions and we'll try to help you as much as we can. Good luck!!!


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
Trout125 #195953 03-25-2018 06:41 PM
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Mine were maybe 9 and 12 at the time. My first surgery wasn't so bad, but then we had a recurrence and had more surgeries and radiation and chemo, so the whole thing ended up being a long scary process. (Still not quite as intense as what you are facing, but enough to give you an idea how my kids coped.) It was hard, on all of us. One thing that worked in our favor is that we homeschool, so the kids didn't have to be gotten back and forth anywhere on anyone else's schedule, except for a couple classes a week, and some nice ladies from church helped with that. Being close to me during the day helped both of them cope ... we did a LOT of cuddling on the sofa after I got my feeding tube, especially, because of how I had to sleep propped up. (We did a lot of educational TV for school that year, LOL.) My daughter went from being totally creeped out by the feeding tube to wanting to help me use it at the end, because she had time to see me treat it as a normal, if annoying, part of daily routine.

We also made time to let them visit the hospital where I was receiving daily treatments. They weren't allowed in the chemo area, and for good reasons, but my radiation appointments were short, so they came with us once or twice (my mother was my driver so my husband could keep working, and my stepdad kept the kids during the appointments) and the kind nurses let them peek in the radiation room ... they got to see the table, the mask, all the stuff I talked about. But ONLY when they were ready and if they wanted. I didn't make them do it, just offered it as an option, and after making sure the nurses thought it would be okay. Just knowing kids were allowed to see it knocks it down one level of 'scary', actually.

One piece of bad timing was a young lady in our church dealing with leukemia at the same time, for the third or fourth time in her young life. She did not make it. We had done some hospital visits to her during her illness, and when my recurrence came up, we had to be very careful that my kids understood this was a different kind of cancer, with a different prognosis ... that was hard to do, because we didn't know WHY it had recurred and we didn't want to lie or give false hope, but my chances really were better than hers had been.

My kids really got into 'taking care of Mom' which came with some special privileges. This did go along with the homeschooling and wouldn't work with a conventional schedule ... but they were worried and needed extra cuddle time. So I gave one night a week to each of them to stay up late with me. Those nights my husband got to keep for himself to do his own thing, so he wasn't always feeling like he had to keep an eye on me. We binge-watched more TV, usually, or did audio books. And we'd just talk. It's a habit we actually have kept up to this day, and now that they are both teenagers, that's priceless. At the time, it was partly so I'd know that whatever happened, we'd end with good memories. (Hey, I was worried, it was a valid attitude. smile And it did help.)

I can ask my kids if they have any tips for you for your son, if you want, as I'm finding my memory is fuzzier than I thought ... but if you're comfortably straightforward with your son (not scary, just honest), he'll handle it better. If we seem like we know what we're doing, that gives them reassurance. (Why on earth they can make it to that age and still think we know what we're doing, I have no idea...LOL.)


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Trout125 #195955 03-25-2018 07:37 PM
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Thanks to you both for the support. I'm wondering if these operations have changed over the past 10 years and they are better at it. I still don't a lot about what's going on, but maybe hospital stays and recovery periods have improved? They also are always getting quicker about getting you out of the hospital.

It's a tough situation all-around Kristen. My wife works in DC, an hour by train from where we live. She might be using quite a bit of leave. We do have family in town and friends willing to help.


Not sure
Trout125 #195957 03-26-2018 02:01 PM
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Hi Trout125,

I’ve had a segmental mandibulectomy to my left jaw in 2017. My ENT Surgeon, who I had since 2012, was assisted by the plastic surgeon. It was sort of straight forward as it was for osteoradionecrosis of the jaw, but pretty much still the same type surgery for cancer. I went in on a Friday, had 8 hour surgery, including a graft from the right thigh, and fibula from the right lower leg to place in my jaw. Due to lack of vasculature to my left jaw from prior surgery and radiation, I had the vessels taken from my chest.

After surgery, once I was awake a day later in “Step Down,” I had the boot on my leg to keep it immobile. I had a tracheotomy for the week I was there. They switched out for a speaking value that Monday or Tuesday, so I was able to communicate after that, otherwise my poor hand signage was trying, and had no cell phone for a day or two after surgery to use I-speak. I really couldn’t use I-speak on my cell phone anyway due to poor vision after surgery. I didn’t have family or anyone to visit or stay with me for the week, which was a bummer, so if you have visitors that is very helpful.

Due to prior surgery/treatment, I really couldn’t go home after a week, which I didn’t plan on, so I went locally to a rehab center for several months. I actually think I could have used another week in the hospital. Healing was difficult from prior treatment, so it took a month for the trachea to heal, and leg didn’t, so I had resurgery several months later, and numerous doctor visits.

I hope this helps.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Trout125 #195959 03-26-2018 07:44 PM
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Heres a bunch of little things to help make things easier for you and your wife....

Start making a list of everyone who offered to help out. Make sure you have all their contact info so you could text or email them. I doubt you would be able to call anyone for a while after the mandibulectomy but you . I was in bad shape after the mandibulectomy, I wasnt able to remember things from one day to the next, concentration was beyond my capabilities due to my mind not being able to focus or process any complex ideas. I wasnt even able to read a book during my extended hospital stay after my mandibulectomies. Thats just my experience, everybodys different. You might bounce back very quickly, and fare much better than I did thru all of your treatments and recovery. The most critical of times like the first week after your surgery and the first couple weeks you arrive home after your surgery is when you will need your wife the most. She's going to have her hands full taking care of your son and running back and forth from the hospital. By having friends and relatives take a few shifts with you in the hospital it will help your wife to not miss so much work. You will need her down the road while going thru rads and the first month or so after finishing rads. Friends and relatives can help out with that as well. They can turn out to be a huge asset in helping with your son too. People genuinely want to help but most dont know what to do. You're very fortunate to have people nearby you can ask if you need something.

I suggest calling The American Cancer Society (available 24/7/365) and ask about their volunteer driver program. It takes a little while to get everything in place to line up the drivers so dont delay in calling them. Cancer survivors and caregivers are the drivers, its really nice to be able to talk with others who have been thru cancer even if it is a different kind than what you have. Plus its a huge relief giving your wife or whoever is taking you to your appointments You will have doctor appointments to recheck your sutures (possibly staples) that you will not be able to drive yourself to. Ask your doc and people at the hospital if they can set you up with a visiting nurse. Ive found if you dont ask for this it is often skipped. Its so much easier when you first come home after your surgery for the visiting nurse come to your home to check you out than to I strongly recommend avoiding public transportation, crowds, even movie theaters, grocery stores, your childs school and daycare if they have one. All those places are germ factories! You can not risk picking up a bug now or while you are trying to recover. Washing hands and hand sanitizer are something you should stock up on. While I was in the hospital I kept my own hand sanitizer right on my table within reach. I was not steady on my feet and couldnt wash my hands as much as I would have liked.

I hope these suggestions help. 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
Trout125 #196651 06-26-2018 02:43 PM
Joined: Mar 2018
Posts: 83
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My dad just had a mandiblectomy and fibula free flap reconstruction last month in Boston. It was certainly very difficult to go through, but something necessary. You can do it! Dad had a trach and a feeding tube for almost the duration of his stay, which was 8 days. They advised us to plan for a 14 day stay if all went well. I would suggest you request pen and paper to communicate. Dad signs quite well, as he works with mentally disabled adults, but none of his nurses knew ASL. Having us nearby to translate was good. It was really hard for me to see my dad there, and I'm 32. He had tubes all over and the trach was hard for him. Dad said he didn't have much pain after the 3rd day. He liked getting cool flushes through his ng tube. He said it helped his comfort level. He was pretty goshed darned bored when he didn't have people taking blood or clearing his drains. He couldn't see very well after surgery, so reading was out. They didn't allow him to have a tv in the intermediate care unit he was in for the first few days, so that was out. We did bring an IPod with music, which he liked, and a laptop to show him photos of his grandkids and the cat back home. They let us video chat with the grandkids, which was nice. Dad was in a chair 2 days after surgery and was walking with a walker soon after. He graduated from the walker to a cane before he left. He's now been home for almost 3 weeks and is still using his cane, but eating soft foods which are easy to swallow with minimal chewing. He likes the Glucerna shakes the nutritionist recommended, and the Juven theraputic drink they let us try. Our nutritionist was able to give lots of coupons and ideas to take home.

Best of luck to you!

Last edited by Vicky1; 06-26-2018 02:50 PM.

Dad was diagnosed 2/28/18 w Stage 4, N0 Verrucous carcinoma (VC) an uncommon variant of SSC
Mandibulectomy and free-flap reconstruction 5/30/18
Diagnosis changed to SSC.
Began treatment of 30 rads and 5 Cisplatin Cycles on 7/18/18
Decided not to do any more Cisplatin after the first one.
Finished treatment on 8/31/18.
3.19 Abscess & Recurrence wide mouth resection
4.16.19 Scapular Flap Reconstruction surgery
9.6.19 Clear CT!
8.6.20 Clear CT!

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