My husband is scheduled for a mandibulectomy with fibula free flap construction on 2/28. Any advice or suggestions for getting through the surgery and hospitalization?

Hello Barbara
I know what you and your husband are facing. I had same surgery oct 30 2018. This is a major surgery. Be prepared to spend alot of time in the hospital. There will be alot of ups and downs. Keep your head up and know there is light at the end of the tunnel. Youll find alot of support on this site. Your not alone.
Best of luck
Mike

Thanks, Mike. It is good to hear that there is light when all I am seeing is a long,dark, tunnel. My husband has always been very healthy, and was last in the hospital in 1989 (before that it was a tonsillectomy in 1955). So. I really have very little experience with this.

Barbara: I posted this before but it still works.

Based on my experience having had two operations for oral cancer since 2003, I would like to suggest four thoughts for newcomers.

1) Since oral cancer hits only less than 1% of the population, seek professional care from a medical center that specializes in cancer and has oral cancer specialists on staff.

2) Don’t be afraid to travel extra hours to such a center-your disease can be life threatening.

3) Follow-on care may be done at a location closer to your home that the cancer center works with.

4) Don’t wait to get help, and don’t second guess expert opinion but do get a second professional opinion if concerned.

Thank you.

We have opinions from two cancer centers and both agree that this surgery is the way to go. Based on the size of the tumor, it is still T1, although one surgeon says there is no evidence of spread, and the other thinks it has probably spread. The recommended surgery is the same either way. The question of follow-up radiation will be decided later after all the pathology is done. I am really hoping to get any ideas of things I should do to make this very tough experience easier on my husband during his time in the hospital and recovery. I am doing my best to prepare for the long haul. I don’t know anyone else who has been through this type of surgery, and while the doctor’s offices are all willing to answer questions, every answer is a variation of “it depends”. I would hate to think there was something I could do (even little things) to make it easier for him that I didn’t know about. Even something simple like a pillow for his leg or warm socks.

One thing I can think of is to be prepared for RND (radical neck dissection) which is standard to insure the lymph nodes are clear. That scar can go from under the ear, down and then across the Adam's apple and then up under the other ear.
The whole thing is no fun but a life saver and time will resolve all.

The plan sounds good. Let us know how it goes.

I really appreciate you reaching out. It helps to be in touch with someone who (unfortunately) has been through this. They told us that there would be a neck scar but didn’t give details. If that is the scar he gets, so be it. The only pictures I have been able to find are of the surgery itself which I have no desire to see.

The neck scar may not be a bad one. I had the neck dissection on one side (what a dreadful name for a surgery, right?) and my ENT surgeon did such a good job you can't even see the line from it at all. If I didn't know it was there, I'm not sure *I* could find it, some days. It looks just like any other wrinkle line or crease ... very faint. One thing they did NOT tell me before that surgery, though, was that I'd lose a salivary gland as a part of the process. (Or if they did tell me, it got glossed over.) It leads to pretty bad dry mouth, which is rough enough with all the other surgeries and treatments. So if this is part of what they do for your husband, make sure they tell you if that was in the surgery. (It wasn't because it had cancer, it was just in the way, I gather.) Then you'll be better prepared to assist your husband with dry mouth issues, which I imagine would be even harder with his particular oral surgery.

((hugs)) You got this!

Kristen: Good point. I guess I've been living with dry mouth so long now that it is down to the minor annoyance level and I forgot to mention it.

Barbara, I've sent you a message but i'll repeat it here. Smoke and drink are to be eliminated because of the risk of recurrence. If the cancer was caused by HPV, I've been told that some docs say drinks are OK.

Thanks for the heads up. The dentist mentioned offhandedly that they will be cutting a nerve so there will be some numbness on one side of his face. Plastic surgeon says he will try to reconnect it but wasn’t too optimistic. I haven’t heard anything about the salivary gland so will be sure to ask.

They told us he shouldn’t drink or use mouthwash with alcohol before the surgery. If he can’t have alcohol, so be it. He got several bottles of champagne as retirement gifts. I guess we can always take a bath in the stuff once the cast is off. Or we have hostess gifts for the next several years.

After the surgery, alcohol burns. After radiation, alcohol burns. I'm not a drinker so I can't speak to the differences between beer or wine or champagne or anything like that, but even medications with alcohol burn, so I can attest to that. Heck, even mint burns my mouth, but then that may be the radiation. So it's not entirely about the damage it can do, but also about what he might be able to tolerate after. That'd be something to ask the doctors, and maybe whoever here who actually knows about drinks can tell you if champagne is okay.

The nerve cutting can be ... weird. I suppose it can come out different for everyone. My surgeon said he didn't cut mine, but he must have dinged it (he admits this) because I do have damage. It caused a weird numbness on that side. (Once it healed, of course.) Not pain. Collars feel weird when they rub against it. The closest I can explain is like when your skin gets too cold in winter, and everything that bumps it just feels ... off ... somehow. You know what it *should* feel like, but it's wrong. It's irritating, but you get used to it. I don't know if it's the same for everyone, of course. (That would make an interesting poll, I suppose.) And ask about treatment after ... I find that (thanks to tips from a therapist after radiation) massage on my neck, just at-home stuff, helps unclog a lot of sinus issues ... who knew how much those lymph nodes were responsible for? Yes, we can do without them, but wow, they are sure under-appreciated! (I use those massage techniques on my healthy husband when he's got a bad cold, and even he attests to how it helps the drainage!) Not something to fret about yet, just something for down the road.

Thanks so much for all the responses I have gotten. It really helps to connect with people who have been through this.

Hello and sorry for your husband's diagnosis. Oral cancer is no fun but we all get through it. I'm still in the 'getting through it phase' but I have a majority of it behind me.

My suggestion is: get him a dry erase board and a few markers for after surgery. He will have a difficult time speaking and it is FRUSTRATING to not be able to communicate. I used mine after surgery and then off and on throughout my recovery and even some during radiation. I also texted what I needed to say a lot as well.

Good luck with surgery!

Thank you so much. Surgery is scheduled for next week.

Hi Barbara! Ive been following your posts since you joined OCF. Our members have welcomed you with open arms and given you some excellent advice so far. Your husbands surgery was scheduled for the 28th. Im checking in to see how you both are making out. Being a caregiver is not an easy job! Im sure you have the weight of the world on your shoulders right now. Just remember, you arent alone with this, we are here to help and to lean on when you feel overwhelmed.

Mandibulectomies can be very long and involved surgeries. Ive had a mandibulectomy and completely understand how difficult that kind of surgery can be. Your husband will probably be like most of us who have had this surgery and not remember much of his time in the hospital. Dont be surprised if your husbands docs keep him medically sedated so he sleeps for a few days to give his body a chance to start healing. Its actually a good thing to sleep thru the first few days after this major surgery.

If your husband is in alot of pain ask his docs to prescribe at least 2 different pain medications so he wont have to wait for the right time before he is allowed to have his pain meds. With 2 options he can switch them on and off to make his pain levels remain lower and more stabilized. At least thats what I found worked the best for me. If you have friends and relatives that want to visit your husband try to stagger their visits and maybe they wouldnt mind hanging around for a few hours to give you a break to catch your breath or to take care of other responsibilities. If possible having someone stay there with your husband 24/7 especially if his speech is not clear or if he is in alot of pain. Almost all hospitals will have no overnight visitors rules. You should still ask if you want to stay there with your hubby, many times the nurses will allow someone to stay even though its against the hospitals rules.

Wishing both you and your hubby all the very best. Im hoping all has been going smoothly and Im looking forward to hearing your update.

Thank you to everyone who reached out. The surgery went very well. He is doing fine so far. He actually spent a lot of time in a chair yesterday which was very good for one day post-op. We should get the pathology reports in 7-10 days.

He had an iPad in the post-anasthesia care unit, and now has an iPad and dry erase board on the Head and Neck floor. Not ideal, but it works.

I expected him to be out of it all day yesterday but he was wide awake. This was especially surprising because they have been coming in every hour to check the flap so he didn’t get a lot of sleep.

He didn’t get up to his room until late yesterday afternoon (surgery was Wednesday). He does have a roommate and there is not a lot of space in the room but I will be staying there as much as possible.

He says he is not in a lot of pain, but has pain meds ordered as needed.

Thank you to everyone for all of the support and helpful information. I am grateful for every bit.

Barbara, thanks for your update!!! Sounds to me like your husband is doing very well, much better than most who have this kind of surgery. Im really surprised he was able to sit in a chair already and isnt in much pain or uncomfortable. Thats excellent progress!!! Your husbands positive update is a perfect example of the everybody's different phrase I use frequently around here. All patients will respond in their own unique way to medications, medical procedures, etc. Sometimes after surgeries patients arent feeling too bad due to being given extra pain meds as the surgery is just about finished. For me, it isnt the surgery day that I would feel my worst, almost always the next day after a surgery is the hardest one. Hopefully your husband will continue to make steady improvements in his recovery and also remain tolerant to any post-surgery pain or complications. It also sounds to me like the hospital staff is on the ball and is taking very good care of your husband.

Im glad to hear you are there with your husband as much as you can be. Having someone there helps patients stay positive and they wont have to struggle trying to interact with hospital staff. From everything you've written, you are doing an excellent job taking care of your husband. I hope you are also (on top of the other million things you are responsible for) remembering to take some time for you here and there. Caregivers are wonderful and do such a difficult job of juggle everything they normally do plus being the voice for their loved one. Caregivers can and do get burned out which is why I always mention making some time to care for yourself. Even 10 minutes can give caregivers a chance to catch their breath.

Please keep us posted on how you and your husband are making out. Best wishes with everything!!!

Thank you, Christine. As you said, day 2 is harder. He is using more pain meds, and the tube feeds have given him nausea. So far, he has only needed one dose of reglan for the nausea. He is uncomfortable when they suction the trach. He was able to walk a little bit with the walker today. Psychologically, it is tougher today also.

We have been blessed with a relative who is putting us up only a mile from the hospital. Tonight some friends stayed with my husband and i went back to get my meds and a change of clothes so i can stay the night. I don’t want him to be alone when he is so uncomfortable. The care here has been excellent and the nurses have been fabulous.

Thank you so much for all of the information and support i have gotten from you and everyone here.

Barbara

My husband is doing well and is expected to be discharged tomorrow-8 days post-surgery. We will stay in town a few weeks for follow up appointments before heading home. He is still pretty swollen and has the stitches from the neck dissection and wearing a boot on his lower leg. I am not clear on whether they took a salivary gland. The Fellow says they did, but the nurse told me that that is not in the surgery report. I will ask again at the follow-up visit.

We are still waiting for the final pathology report to see if any more treatment will be required.

I can’t thank everyone in this group for all of the information and support you have given us.

Just wanted to say I am thinking of your husband and yourself and sending get well vibes!

What you said about the psychological aspect of this journey resonated with me. We focus so much on getting healed physically but this ordeal requires healing psychologically as well, but it is in the back mostly while the physical is in the forefront. It rears its head though for sure.


Again, hope all is going as well as can be expected.

Thank you. Things are going well. The doctors are not recommending radiation or chemo at this time. He has his next appointment with the Head and Neck surgeon in June. We are still waiting for the second follow up appointment with the plastic surgeon and to find out when they will schedule the outpatient surgery to remove the skin covering the posts for future dental implants. After we know that, we can start thinking about heading home for awhile. Thanks to this forum, I knew to ask about alcohol when we had the follow up visit with the surgeon. (I figured it was better to hear it from the doctor). The doctor was very definite about the need to greatly curtail alcohol, so much so that I was surprised that I had to be the one to bring it up. My husband doesn’t usually have more than one beer a week, but the doctor said that was too much. My husband never smoked so that is not an issue. The other risk factors (gender and age)-well, not much to do about those.

I am so grateful for all of the information and support I received from everyone here.

Oh gosh fingers crossed that no radiation and/or chemo!!!! So glad to hear that things are moving along without any sort of complications.

I don't know much about the no alcohol rule. I know that as a general rule it's just 'not recommended' but there may be more to it with the cancer being a HPV positive cancer? I'm not really sure, maybe someone else will chime in here that has a better guess.

Dana Farber told me zero alcohol. It appears that if HPV is involved that may be different.

My husband told the surgeon that he usually has one beer or glass of wine a week and the doctor said that was too much. I only knew to ask the question because of the information I got here. We saw the plastic surgeon today and he said my husband is healing well. He still has pain in his leg so he will be getting follow-up physical therapy once we get home. His facial swelling is still there but has gone down. The neck scar is pronounced but luckily pretty well disguised by neck folds and shirt collars. The site on his leg doesn’t look good to me, but the medical people say it is healing well, so that’s what counts. Down to one dressing change a day, and almost done with the boot!

Thanks again for all of the support I have gotten here.

Many patients who undergo such a major surgery will get a visiting nurse to stop by a few times a week to check on them and change the dressings. Unfortunately this great service is available with certain medical insurance coverage. Im sorry but with 100s of plans out there varying by state/region I cant begin to figure out which insurance gets the coverage and which ones dont. Im sure it goes by certain diagnosis among other criteria. I was able to have a visiting nurse for 3 times a week 8 months post my mandibulectomy. My case is not the average case, I had major complications and was not healing so needed a picc line with IV antibiotics for 8 months, HBO, wound care specialists and many other special services to get back on my feet again. I just remember what bad shape I was in and how nice it was to have an nurse come check on me. If you continue to think your husbands leg doesnt look like its making progress, at the next doctors appointment ask about a visiting nurse to get your husband thru the next couple months of his recovery. You may also want to inquire at his check up about seeing a wound care specialist to help with his healing. They have so many options that regular doctors do not. I was pleasantly surprised at how helpful they were with all of my problem areas.

Best wishes with your husbands continued recovery progress.

Thanks, Christine. We are heading back home to Maryland early next week. We have had visiting nurses, PT, OT and a home health aide for a few visits a week but they are discharging him tomorrow from those services. He is no longer using the walker. I will definitely keep an eye on the leg wound (I have no choice as I am changing the dressings). It is good to know that there are wound specialists available if we need that. So far, the doctors think the graft on his leg looks good so let’s hope it continues to improve. He will be seeing the plastic surgeon again in May.