I recently learned of a young woman (early 20's) in my town who has oral cancer. Mutual friends made me aware since our cancers are very simlar (SCC, base of tongue). I had been texting her for the last couple of months and just had the pleasure of meeting her today.

My Stage 2 cancer was discovered in 4/05 and I had a tongue reconstruction, jaw-split, lymph nodes, removed, etc... Callie and I talked a long time about the surgery and what she might expect. But, her cancer is much worse than mine and she's going to have a lot more of her tongue removed. She's in the middle of chemo to shrink the tumor and will have surgery to remove it on 9/11/08.

When I had my surgery, these boards were invaluable. I couldn't believe all the support. It was so comforting. Now, I really need your help again. Callie asked me some questions today I couldn't answer and I know folks here will have the answers she needs. She's a young, single Mom and doesn't have a computer, so she can't research and post easily herself.

Unlike me, Callie has been told she'll be coming home with a feeding tube and her trache in place. I could swallow before I left the hospital, so came home with neither. I'll post more in the other forums, but I really need some information on what she can expect when she comes home. Right now, she really doesn't know how much of her tongue she'll lose...we're hoping for 50% or less, but really won't know until that day. She has been told she'll be able to swallow with her new tongue in the future.

I know about the jaw-split, grafts, and that kind of thing. But, I really don't know if she'll be able to talk with the trache once she gets home. And, what kind of maintenance with the feeding tube.

Any info any of you have would be greatly appreciated and I will pass it all on to Callie.

Thanks!!
Jennifer

Hello Jennifer, I am sure others may have better and more complete info but my here is what I know so far. Before I start, should probably say that I am new to this, not use to "posting" things and not sure of all the details, terms and abbreviations. My wife was diagnosed 6/20/08 with Stage 1 tongue cancer, two weeks later was changed to "at least" Stage 2 and not sure right now what it would be considered. A CT scan showed that the tumor was larger than originally thought (now at 2.5cm and 1cm thick). Her surgery was 7/31/08 and came home from the hospital 8/10/08. The pathology reports show that the cancer had spread to the lymph nodes and is expecting to start radiation and chemotherapy in approximately another 4 weeks to allow for healing from the surgery. She came home with the feeding tube stitched in her nose but they removed her trache the day she came home. I do not know how much ofher tongue they removed, from what the surgeon had drawn for us before the surgery, I expected about 1/3 would be removed but when I look in her mouth now, it looks more like 2/3 of what is visible is the forearm flap.

From my whole 2-1/2 days as care giver, here is what I can tell you we have experienced. The feeding tube has been the easy part, since hers is stitched in her nose, we do not have to worry about the correct placement. We were told that most are taped in place, then you need to mark to make sure that you have not accidentily pulled out of place. The main thing is that you are always starting any feeding or medication with water, then the food or medication, then following with more water to make sure the tubing doesn't get clogged. Since our supplies have arrived, just using big syringes that have ends that fit the tubing ends for the water/medicine and we are using "gravity feeding" for the food. Just the bags that look like IV bags that we hang up and connect to the feeding tube. There is a little wheel that we use to regulate the flow which we were suppose to take an hour per feeding. Rinsing the bags and syringes after use.

We were expecting to come home with the trache in place so went through all the training. The last days in the hospital, Pam had a trache plug that she could plug the whole in the trache that would allow her to talk as well as breathing through her mouth and nose. The cleaning of the trache was pretty much cleaning around the outside with saline and cotton swabs. Removing the inner "tube" to clean with a brush. The hardest part for me was called something like (I know this is wrong) lamass where you needed squirt some saline in the tube to help get all the "congestion" out. When you would squirt it in, you need to time it with the breathing and knowing that they are going to cough makes it really tough. Our nurse was cracking up watching me try to do it. When I picked my wife up the next day to bring her home and she didn't have the trache, I told the nurse that she must have told the doctor about how poorly I had done in training. Anyway the trache isn't that bad either if you can get past the fact that you are right there in a persons throat and as long as the (for lack of a better word) phlegm doesn't bother you. They did suggest notifying the city service provider for 911 that there was a person in the home with a trache so if they received a call with no talking, they would know right away that there could be a problem.

I will say, our nurse and before that our Dr. had made it sound like when Pam was released from the hospital that she would be able to care for herself. I may be under estimating her but can't see leaving her alone at this point. I would be interested to hear how long others have needed to stay with their loved one when they come home from the hospital.

Anyway, hope some of this is helpful and wish you and Callie the best.

Tom

Hi Jennifer,

My experience with having the tumour removed from my tongue sounds very similar to what Callie may be having to face.

Like you had my jaw split, nodes removed but I had tissue taken from my inner thigh for the tongue flap.

I spent nearly 3 1/2 weeks in hospital, with a trache in for about 12 days, but was removed before I left the hospital. I certainly don't want to alarm Callie but I found the trache to be frightening. I wish I had of been much more aware of what was ahead of me as far as that goes. Being unable to breath naturally through my mouth or nose and only being able to breath through a device about the width of a pencil in my windpipe was really stressful. Several people who I have spoken with since have also felt the same as I did. Perhaps the hospital Callie is attending has some sort of information booklet that she could read and therfore prepare her for having a trache.

The nurses in the hospital "trained" me before I left hospital in how to use and look after the PEG tube. Much the same as what Tom has said but the tube is directly in my stomach. Due to all the swelling from the tongue flap it was the only way that I could get all the nutrition and meds that I needed.

I hope this has been of assistance.

Karen

Thanks SO much to both of you for your informative replies. I will print both out for Callie. I really appreciate you taking the time to respond, as it sounds like exactly the information she needs.

Jennifer

Jennifer,

Tell Callie to stay on top of the pain after surgery. Surgery to the tongue is very painful and if she doesn't take her meds it will become even more painful. My sister had surgery to her tongue twice(had maybe 1/4 removed), the first time she tried not to take the pain meds until it really got bad, but by then it was even more difficult to get under control. By the time she had the second surgery she knew to take the pain meds right away, before the pain was out of control. I went much better. She was the type who never had to take any meds most of her life, so didn't want to until it became necessary. She learned that getting pain under control early is important to healing sooner.

Good luck to Callie and your are a true friend to help her .

Nancy

Perhaps something to consider.
If she is also getting radiation then perhaps she can get a PEG tube up front instead of a NG tube.

It would then be one less thing to worry about. (if she gets radiation as well)
Although I had a NG tube this was short lived (puked it out as soon as I woke up). Re PEG tube, once you get used to the idea of the thing it is not a big deal, feeding is easy:
syringe, pump or gravity feed. Just nothing really cold or warm for obvious reasons. Also you do not want to clog the tube with particles. That can be messy especially if you use a syringe. Some people are sensitive to the feeding rate (i.e. syringe). Keeping it clean, by rinsing with water after each use. (good idea anyway to get extra hydration)

M