Hello All,

I know some are you are familar with my posts regarding my father in law and his diagnosis of malignant oral melanoma.I wanted to keep you all updated plus pose a few new questions to the forum.

He had an appointment today to see his head and neck surgeon to sign consent forms for Fridays surgery.The doctor also wanted to discuss the results of his latest head&neck MRI.It seems this MRI shows that his tumor has spread to the right side of his tongue also.The doctor says he can't feel it past the midline from the left but the MRI shows it has invaded the right side now.He said if this remains to be true he will have to take his whole tongue.He also went into detail of how the rest of the procedure will go.First he has to have a trach tube put in.He said that the nodes in the left side of his neck show mets.So first he has to have a radical neck recection.Then along with part or all of his tongue he will take parts of the back of his throat and his hard palate.

It could even go further than that he said if he can't get all the cancer through his mouth he may have to cut his jawbone in half and swing it open like a door so he can get all the cancer out cleanly.After all this had been said he said there still may be a chance that he can't get all the cancer.This was just terrible news all the way around.My father in law cried all the way home from the doctor and I tried to comfort him but all the words I have to say seem so miniscule compared to what he has to endure.


I have a few questions for the forum now.

(1) Did anyone have their whole tongue removed?
(2) The doctor says he won't able to swallow if his tongue is removed.Can you speak???

There are probably other things that I am forgetting to add but I wanted to post so I can release some of this.I hope this wasn't to long or to graphic for anyone.If this was to graphic I'm truly sorry.


Thank you again for all your help everyone.
Patty

Patty,

There have been people that have had their whole tongue removed. Hopefully some of them will post a reply for you. I do remember reading that if the base of the tongue is left, people can speak, but I don't know how well. There are also tongue transplants being done in other countries. It is very new and not likely to be an option in the USA any time soon, but is something to keep in mind for the future.

As for cutting the jaw, Heather had that done and it wasn't as bad as one might think. She did get severe trismus (lockjaw), but we learned later that it wasn't entirely from the surgery. It was also from the second tumor, which hadn't been detected yet.

Have the doctors discussed radiation and chemo as an alternative to surgery? It might not be a viable option for oral melanoma. But I do know that in SCC cases where they don't think they can get all the cancer with surgery, they often do chemo and RAD instead. If they haven't mentioned it, I would certainly ask. Has he seen a chemo or RAD oncologist? Hang in there and try to take care of yourself, too.

Rainbows & hugs,
Rosie

Dear Rosie,

First,I want to give you my condolences on the loss of your wonderful daughter.I was not a member of this forum when she was going through her illness,but I have read alot of your past posts.I also viewed some of the pictures that you posted.She was a beautiful girl and I am so sorry that she was taken from you and your family so quickly.My heart ached when I read your post that she had passed.You are what the word mother is all about and I wish you strength and peace in this difficult time.It is so unselfish that you would take the time to help others when you are still grieving.


In regard to his tongue,the doctor said that he would have to also take the base.It seems that there is vascular involment throughout his tongue.It seems that the blood supply from his tongue is feeding the tumor.
If it stays true to form that the tumor is now getting it's blood supply from the right side the whole tongue needs to be removed.Yes,he has seen a team of rad.oncologists.All his doctors feel that the surgery needs to come first.He is having difficulty swallowing due to the size and location of the tumor.It does also seem that with malignant melanoma surgery is always called for first.The doctors stated that if they would have found mets anywhere else in his body except for his head and neck region he would have been deemed terminal and just made comfortable.


If all goes well with the surgery he should begin chem/rad about 3-4 weeks after.Even with all these measures that are being taken he still has a very poor prognosis.We found out yesterday that no one with this type of cancer has lived beyond 22 months.We are praying he will be the first.He was debating last night whether or not to have this surgery because it will be quite disfiguring and there is a very high chance of mets and recurrence.The surgeon said this is his only chance at living so I think he has resolved himself to having it on Friday.


I want to thank you again for your response.I wish you and your family peace and happiness.


Patty

Patty,
this is my first message on the board. I am sorry to hear of your family's situation.

In September I was diagnosed with squamous cell cancer on the left side of my tongue. I had surgery ~ 2 weeks later to remove 1/2 my tongue & lymph nodes on the left side of my neck. The surgeon cut through my chin & jawbone for better access. I had a trach tube for 1 week + while in the hospital.

My situation was not as severe as your father-in-law's, but I found that the chin & jaw cut was not that much of a bother - the whole cancer dx & surgery is a BIG deal to deal with, but pain medications help. The scarring is a minor issue compared with fighting the cancer.

The trach didn't scare me as much as I thought - for the first few days I was so groggy from the surgery & meds that I didn't notice it. However, when sucretions build help I coughed and had some trouble. Hopefully there is a respiratory team at the hospital that can help teach about the trach, and help with suctioning. I found that the respiratory specialists were very reassuring (nurses were helpful, some more familiar with trachs than others, but the resp team were specialists).

With 1/2 a tongue gone I have trouble swallowing & talking. I didn't even have water to drink for 11 days. I had a feeding tube through my nose for nutrition and found that not as bad as I thought. My appetite was gone so it was easier in a way.

While the complete loss of tongue must be scary, I'm guessing that with the fast rate of cancer growth, that even without surgery swallowing will become difficult.

For coping, I am taking anti-anxiety/anti-depressants which help me to focus on the good things I enjoy. I try to slow down and appreciate things around me. I can walk, I can type, I can spend time with my kids, I enjoy obseving nature around me. None of us know what the future holds, so I try to treasure each day as a gift. And it is OK to cry, to feel sad, etc.

I feel for you. It is very hard on caregivers, friends and family who wish they could do something more.
michelle

Patty

Hi my name is Mary and I am caretaker for my husband John. He had his surgery in June 03. His pre,and post-operations were diagnosised as Left base of tongue malignancy and Supraglottic malignancy. The operation was several parts, direct laryngoscopy,esophagoscaopy, left modidfied radical neck dissection sparing intrnal jugular vein and spinal accessory nerve, right functional neck dissection , rececton of left base of tongue maliganancy via though the chin and suraglottic laryngectomy. This also included having a skin graft plus vein for left arm to rebuilt, everything that was removed. He also had a trac, and a peg tube. He lost the blood supply to his tongue about 2-3 wks after surgery, and the doctor removed all but the back left side. I didn't John would take again but with practice he is speaking, not like you or me, he has trouble with some of the sounds because he doesn't have a tongue to press against the teeth or left up in the back of throat. But we pratice together. Since the surgery he hasn't been able to eat, living off the peg tube. I don't think he will ever eat again, at least not like before. John had 3 different masses 2cm 2.5cm and 10.8cm. I don't know if any of this helps, or is too much. So far we are cancer free. God willing we will stay this way. Hope I have help.


mary

Dear Michele,
Welcome to this forum,I'm glad that you are here but sorry for the circumstances that brought you.Thank you for taking the time to respond to my post.It sounds like you did great with your surgery!!I have come to understand the strength and courage that cancer survivors have, and it just amazes me!Of all the procedures my father in law has to endure it seems that the splitting of his jaw bothers him the most.Can I ask you what happened to your lower front teeth?This is the question he keeps wanting to know.I look foward to your response.

Patty

Hi Mary,
I'm very glad to meet you.No, you didn't give to much info,every little bit helps.I am so glad to hear that your husband is cancer free.There are so many I want to ask but my brain doesn't seem to work these days.I would like to know thing is he in speech threapy or are you trying these exercises at home?My father in law surgeon feels that if he has to take his tongue that he will be able to use a vibrating device.Does your husband have one of these?Thank you for your response.


Patty

Hi Patty,

My husband doesn't have the vibrating divice. He is going to speech. He has homework, which has him working of different sounds, and finding diffrent words to use incase he is unable to say one. I have my own homework, which is learning to listen again,and not laugh. Laughing takes some of the power out of it. We're learning to be ok without a tongue.

Mary

Patty,
I still have my front teeth (actually all my teeth). The surgeon cut right between my 2 front teeth. There is gray-ish/white tissue at the gum by those 2 front teeth, it has been slow to heal and the doctors were watching it carefully and gave me antibiotics.

Now (post surgery) my front teeth are not lined up exactly as evenly as before, but it is pretty minor, and you have to look carefully in my mouth to see it. I actually am surprised at easily the jaw did go back together.

The chin and jaw don't bother me any more than anything else - I think the tongue loss & swallowing changes are harder. The whole general region from my ear lobe to chin to neck/chest has generally been numb or stiff, but not particularly painful(I had a skin graft from my chest used for reconstruction).

One other thing, post surgery, the first few days you look (& feel) awful. But looking on the positive side, the swelling goes down, the scars lessen, the stiches come out, etc. So there is something to look forward to with the small daily improvements post-surgery. (And I did have a few setbacks or just rotten days).I found it helped to look at some of the small improvements day to day, focusing on what I could do today but not the day before, rather than focusing on what I could do pre-cancer (which can be discouraging)

hope this helps some,
michelle

Thank you both for your reply.All the information I've gathered here has been so helpful.It has allevated some of the dread and fear that we both feel.I had my father in law in front of this computer for hours today showing him old posts.I think he walked away feeling much better.He really didn't relize that there were so many people going through the same thing he is.I guess you always think you're the only one until someone shows you the way.I will include you all in my prayers this evening.

Brian,
Joe wanted me tell you how much he respects you and what you've done for all of us.He doesn't ever "surf the net",he was truly amazed at this web site.Just by reading alot of the archived posts it made him feel a little more at ease.He just feel asleep for the first time tonight with no help from meds.I wasn't able to come up with the right words to ease him before his surgery Friday,but all of you did it for me.Thank you so much.

Patty