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Life After Complete Removal of the Tongue

hcoburn
Posts: 6
Joined: Jul 2010

Our daughter was initially diagnosed with Stage II tongue cancer after a biopsy, and a CT scan on June 17th. Yesterday she met with the tumor board to determine a course of treatment. They informed her that the cancer had grown to stage 4 and also infected the nodes on both sides of her neck. The treatment they proposed was complete removal of the tongue and nodes and reconstructing the tongue to the extent she could speak. They said she would have the feeding tube the rest of her life. After she recovered from the surgery, they proposed to start chemo and radiation. The surgeon estimated her survival chances over the next five years as between 30 and 50 percent.
We, her parents need help advice, and guidance on what to do. She is devastated as we are at the thought she will never be able to eat solid food.
Please will someone who has their entire tongue removed respond and tell us what life is like after complete removal. She initially accepted the surgery option, but since has rejected it.
Please help us to change her thinking, if possible.

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

I am so sorry you and your daughter are faced with this horrible illness. There are many experiences here and many of them positive, so there is always reason to HOPE. I have emailed a man who posts here who had a severe prognosis with his tongue, and that was 6 years 8 months ago. His history may be the closest to what your daughter faces. I am sure he will respond soon. He is a former Marine and is good to have on your side.
Do you know the type of cancer she has? It sounds like it is growing quickly (June-stage II to July-stageIV). There should be a name for the cell type (ie. my partner has Squamous Cell Carcinoma).
Also, where is she being treated? Is it at a National Cancer Institute (NCI) hospital. These hospitals generally are on the cutting edge with the latest treatments, top docs, and most advanced facilities.
You have found a good place to get informtion, support, and caring. My partner just ended treatment this week, and I could not have helped him to the ability and degree I did without all the amazing people here.
Stay connected,
Kim

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

Hello Hcoburn,

Welcome to this site. I am optimistic that there will be someone here who can answer your questions. I am a little puzzled by the treatment recommended for your daughter. I was diagnosed with a Stage IV cancer at the base of my tongue, which had metastisized to the lymph nodes on both sides of my neck. I went to the Tumor Board at Stanford and received a treatment recommendation of a rigorous course of chemotherapy and radiation. I had one lymph node surgically removed from my neck prior to start of treatment. I am now ten weeks out from treatment, and received a follow-up MRI at Stanford yesterday which showed only one slightly inflamed lymph node. There is no visible evidence of disease with tongue scoping or palpation. The real answer for me will come in four weeks, when I have a follow up PET-CT scan.

Where is your daughter receiving medical treatment? Have you considered the posibility of getting a second opinion? I also question the survival statistics that were presented to you. Most information on long-term survival for head and neck cancer patients is woefully outdated, owing to great advances in treatments.

My thoughts are with you during this difficult time.

Deb

MarineE5
Posts: 755
Joined: Dec 2005

hcoburn,

First, I am sorry to hear that your daughter has cancer of the tongue and that the whole family is now in a whirlwind of events. My first question to you is, has your daughter seeked a second opinion at a different location or even a 3rd opinion.

I remember reading here some time ago, and I think they still post here once in a while that they were told the same thing as your daughter. They went and had a second opinion and the 2nd Surgeon was able to save the tongue and do the neck disections. Did radiation and chemo. That would be my suggestion to you and your daughter. As soon as possible, to seek other opinions. If they also agree to the same treatments, it is up to your daughter as to what she wants to do.

My Surgeon told me up front that I had a chance of being on the feeding tube for the rest of my life before the operation. I had part of my tongue removed and was told I could have a speech problem as well. Neither of these things happened to me, except I do have some trouble with certain words. The purpose of him giving me the information of the side effects and outcome? He said that the patient decides what is best for themselves. He said that some people choose between quality of life verses quanity of life. How long someone wants to live verses how someone wants to live each day. I wanted to live and took the chance. I wanted the cancer out of me.

A few years ago, I met a man that came into the place I worked and I saw the scars of a neck disection and asked him how he was doing. He nodded his head. He couldn't speak. But we were able to communicate and he told me he was on the Peg Tube for the rest of his life and he was very happy to be alive. He said he was able to see his grandchildren and life was good.

Although I didn't have my complete tongue removed, I had a good portion of it removed and I am nearing my 6 year mark of the surgery. Please keep us posted and ask questions and don't settle with the first decision. Remember this, in each class there is someone that is at the top of the class and someone at the bottom of the class. Which one is your Daughter's Doctor ? The Top of the class or the bottom. If you don't feel comfortable with your daughter's Doctor, seek another. We all here wish the Best to all of you.

My Best to Your Daughter, Your Family and Everyone Here

nicki74
Posts: 55
Joined: Feb 2010

i am so sorry to hear that you and your family have to watch your daughter go through this.. my dad was diagnosed with stage 4 tongue cancer back in february.. the doctors all got together and gave us two options: (a) removal of whole tongue, voicebox and jaw; (b) very intense chemo and radiation, we went with option b.. he is now out of treatment for 5weeks, looks amazing and doing well.. the doctors said he took very well to the treatments BUT we will not know for sure until we get the results of his first PET scan since january, which is for august 11... if he does require surgery to get rid of this beast it will not have to be as extensive.. the ENT will go in after he gets the PET scan and do several biopsies.. i agree with the suggestion of a second opinion...

best of luck to you and your family! in my thoughts and prayers...

nicki

p.s. this website has been my savior and nobody out there, including the doctors can give you the knowledge that the survivors and caregivers on this site can give you..

Hondo's picture
Hondo
Posts: 5812
Joined: Apr 2009

Sorry to hear this but agree with the others get a second opinion before you do anything.

Take care
Hondo

SASH's picture
SASH
Posts: 279
Joined: Apr 2006

I was dx Stage 4 tongue cancer. My first meeting was with the surgeon who said he wanted to speak with an Oncologist and a Radiation Oncologist to determine a treatment plan. They felt my best option was radiation and simultaneous chemo to attempt to shrink the tumor, mine was in my entire tongue. Then they would do surgery if needed.

The initial surgical option, I would have been like your daughter. It would have been entire tongue removal with a flap for reconstruction, plus they were also going to take out my voice box. I would have been on the feeding tube for the rest of my life.

I liked the option of trying to shrink the tumor first. So that is what they did for me. When they did my surgery, which was supposed to be to remove 85-90% of my tongue all they found doing the deep tissue biopsies was scar tissue. They did take the base of my tongue and attached the rest to the floor of my mouth. I can eat and speak with a bit of difficulty, but it is amazing what the body can accomplish and over come when needed.

Try and find doctors that have options available like at a cancer center. You might also want to take a look at the http://www.usnews.com hospital rankings to make sure she is at the right place for her treatment.

I finished treatment over 10 years ago and have been "NED" (No Evidence of Disease) since. Look for options and other opinions before anything rash is done.

MarineE5
Posts: 755
Joined: Dec 2005

SASH,

Thank you for being here and answering hcoburn's post about their daughter. I just couldn't remember who it was that had the same situation and had a good outcome.

My Best to You and Everyone Here

Pumakitty's picture
Pumakitty
Posts: 653
Joined: Mar 2010

Hi,

My dad was diagnosed in March with a tumor on the base of his tongue and in on node. The ENT said it was stage 4. They did not recommend the surgery because of how complicated it was. He had 35 rads and 7 weekly treatments of Cisplatin. He is one month out of treatment and doing pretty good. His last visit with the oncology he was told that they are pretty sure the cancer is gone, he will know at the end of August.

I would get a second opinion before surgery.

Jimbo55's picture
Jimbo55
Posts: 572
Joined: Jun 2010

Hi, my diagnosis was similar to your daughter. Stage 4 base of tongue squamous cell cancer, with 1 infected lymph node. In my case, the surgery option was discussed but not recommended by the doctors, mainly because of the quality of life issues. They would need to remove the entire tongue, voice box etc. On their recommendation, after a neck dissection to remove the infected lymph node, we opted for the radiation/chemo treatment. My treatment consists of 35 radiation treatments (5/week for 7 weeks) and 3 chemo treatments ( 1 every 3 weeks). Next week is my last week of treatment, I have 6 radiation and 1 chemo treatments remaining. I haven't had too difficult a time (so far, fingers crossed) and the doctors say my cancer is responding quite well to the treatment. I was told there is 50-60% 5 year survival rate for treatment of this type of cancer with radiation only. Adding the chemo treatment to the radiation would increase that by 10-20%. Hope this helps you and your daughter. Be strong. Cheers

Jimbo

greg from pa
Posts: 86
Joined: Jun 2010

Hi hcoburn, I am sorry to hear about your daughters situation. I was diagnosed with BOT c. w/mets to more than 2 lymph nodes.It was stage 3 inapril when I finnally got the diagnosis.The general surgeon wanted to do a modified radical neck dissection.He wanted to also remove the left tonsil because that is where he thought the primary was located.He wanted an ENT to do the tonsils however.To make a long story short the ENT suggested that I not have more surgery once he found the primary in the base of the tounge and that it tested positive for high risk HPV.( I was not a smoker and when I drank I only drank beer) I am now abot 1/2 way through treatment consisting of 35 radiation and 6 chemos. the oncologists at the cancaer center agree that I have a good prognosis [partially because of the fact that HPV positive related squamous cell carcinoma respond well to chemo and radiation.It is agreed that I will get surgery if needed after chemo and radiation if post treatment pet scans are positive. I know all our cases are are different but a second opinion is a good idea, especially when radical surgery is about to be under taken. I will put out some prayers for your daughter during this rocky time in her life. I have found that during my time dealing with c that over 1/2 of the battle is a mental one.I have grown closer to my family and closer to God thru it. I was never a religous man but I have learned to recognize his presence and take notice when he is working in my life. There are some fantastic people on this site and they take the time to help you through. please keep us posted on your daughters progress Greg

hcoburn
Posts: 6
Joined: Jul 2010

Hello to all who responded to my post. My daughter is under the care of the Head and Neck Surgery Department at Kaiser in Oakland, CA. She was referred to Oakland by the surgeon who initially diagnosed her tongue cancer. He referred her because the Oakland Head and Neck Surgery is the best among all the Kaiser hospitals in the Northern California area.
On Thursday we met with the Tumor Board as they discussed our daughter’s case. They discussed (1) surgery followed by chemo-radiation, and (2) chemo-radiation with surgical salvage. They considered the extent of the disease and stage, based on history, physical examination, CT, MRI, and PET. They discussed whether the tumor is resectable and, if so, whether operation offers a better outcome than immediate chemo-radiation. They concluded that in her case that surgery presents the better outcome. If surgery was declined then they would recommend aggressive chemo-radiation as a lesser alternative.
Our daughter is faced with a very difficult decision.
My wife and I have learned so much from the postings on this site. It has given us the knowledge to ask the right questions. It has also gives us hope for the future. Thank you all so much for your concerns.
Please keep our daughter, Pamela, in your prayers.

dennis318's picture
dennis318
Posts: 349
Joined: Feb 2010

Please get a second opinion as advied by Sash, I have an appointment this week, and will also ask for another Docotrs opinion before anymore surgery is done...To easy of an out for removal..Good Luck To your family. Dennis

jmhorsager
Posts: 1
Joined: Aug 2010

Hi hcoburn,

who is your daughters doctor at Oakland Kaiser? We are looking for a specialist. Do you recommend this doctor?

Thanks

hcoburn
Posts: 6
Joined: Jul 2010

Hi jmhorsager,
Sorry for ther delay in answering you. Our daughter's doctor is Dr DEEPAK GURUSHANTHAIAH
HEAD NECK SURGERY - OAKLAND HOSPITAL
3779 PIEDMONT AVE,GROUND FLOOR
He is the absolute best in Northern California.

debbiejeanne's picture
debbiejeanne
Posts: 2454
Joined: Jan 2010

hcoburn, my heart is breaking for you and your daughter. It is just awful. I am so sorry for all of you. I don't know about that type of cancer but I definitly wanted you and your family to know that you will ALL be in my PRAYERS. I also agree with the others, a 2nd opinion is needed. And never give up b/c u just don't know what God has planned for your daughter. Hang in there and please try to stay positive.
God bless you all,
Debbie

kimmygarland's picture
kimmygarland
Posts: 313
Joined: Aug 2009

Thinking of you and your family. I agree with the others that a second opinion is in order, from a provider that is not associated with your current group/hospital.

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

It's especially sad to hear of a young one with this C thing. I, too, advise a 2nd opinion-like maybe at a U of California hospital, like UCLA, etc., or Stanford.

You should keep in mind that C&R will be very rough, too, so it's not like there's a planetary-difference between your choices, I'm sorry to say. You have to make this decision based on physical acceptability, and the route likely to provide the longest survival. Both choices are grievous, to be sure, and your daughter should have the final decision.

The best to all of you, along with Prayers.

kcass

Bigfuzzydoug's picture
Bigfuzzydoug
Posts: 154
Joined: Jul 2010

I have a minor cold compared to what your daughter has. My heart goes out to her and you.

{{{{{{{{{{ healing vibes }}}}}}}}}}

I'm fairly new here and so take my advice with a grain of salt...

Why the destructive surgery first and not last?

There are essentially three and only three treatment options: surgical removal of tissue, chemotherapy and radiation. That's essentially it. Stage 4 cancer instantly means chemotherapy. It's in her lymphatic system and even if the neck nodes were removed, she would still require chemotherapy. So that's one she's going to get regardless.

They're also already calling for radiation as well. Radiation would certainly get her oropharynx, neck nodes and larynx. No cancer cells are going to be able to hide from that. Destroy the cancer or at least, shrink tumors or stop them. Now 7-9 weeks of neck radiation is no walk in the park, but the main questions are... Can you bounce back from it? Yes, many here have. And if it doesn't work, is destructive surgery still a last resort life-saving option? Yes.

Destructive surgery, and I say destructive in this case, would remove the identified infected tissues plus a whole lot more. Would it get it all? Maybe, maybe not. Unlike IMRT radiation which blankets a target area, if cancerous cells aren't removed in surgery, as one of my doctors at Wake Forest U put it, "I've done you a disservice and merely delayed the inevitable. I prefer surgery when there are no question marks that I've gotten it all." Those same two questions again... Can you bounce back from it? No. Once it's done it's done and you have to deal with it for the rest of your life. And if it doesn't work - you're doing radiation anyway.

I was faced with an easier smaller question than your daughter and you: Surgery which would almost certainly destroy my voice or radiation with surgery as a fallback. I and my doctors chose radiation. Obviously you can tell what I prefer. But then, I'm just a patient and not a doctor.

Good luck! Your daughter and you both have my prayers.

mrsa1971
Posts: 1
Joined: Jul 2011

My world collapsed a few weeks ago when after a few visits to the dentist withsores on my tongue that wouldnt heal turned out to be squamous cell cancer.It was very aggressive and i was told my only option was to have 2 thirds of the front of my tongue removed,my lymph nodes and glands removed,I was to have a peg feeding tube into my stomach and a tracheostomy to help me breath as there would be severe swelling due to the lymph nodes being taken out.I had a cat scan the week following diagnosis which said my glands looked clear but they still had to do a bilatteral neck dissection to be on the safe side.I was told i would need chemoradiation treatment afterwards.I'm only 40 and had never been ill in my life-i thought id damaged my tongue from a broken tooth which caught on it and kept making it worse so it went untreated for 12 weeks while i waited for the appropriate appointments-cancer never crossed my mind.I got my op done within 3 weeks of the diagnosis and ive now embarked on my radiotherapy treatment.My op was as successful as they could have hoped,my nodes and glands were clear but due to the tumour being a whopper and the fact it had started to go into the nerves of my tongue,they recommended radiotherapy,even tho the op got all of my cancer with a 15mm margin.I too thought id never be able to eat,drink or talk and although its very early days(5 weeks after my op and 2 weeks in2 radiotherapy)im managing to eat soup,yoghurt-stuff of that consistency,i can also speak and be understood which amazes me as i lost two thirds off the front of my tongue which is classed as a total glossectomy,my tracheostomy wont be removed until my radiotherapy is over and im really hopeful the feeding tube will go as i can drink.It still gets me down though,i know i'll not be able to eat a normal solid diet-it may improve with help from the speech therapist,practise and when the swelling subsides.At the end of the day,i am still alive,like a lot of things in life it will take time to adapt-i feel amazingly lucky they caught my cancer in time and just have to take one day at a time-it does get you down sometimes,thats only human,having massive scary changes thrust upon you from nowhere-but-im here-i have my familys support and im lucky they could do something for me.I have 4 more weeks of radiotherapy followed by i dont know?I havent got that far yet.I feel better for writing on this site and hope it helps someone who may be going through the same kind of thing-God Bless all of you and i wish you all good health-Susan x

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

You are a real champion! You can get through this. Some day that feeding tube will be a distant memory, as will the cancer.

Deb

Dav1965
Posts: 125
Joined: Apr 2011

I had stage 4 squamas cell cancer in my tongue. Along with cancer on the left side lymphnodes. They removed 95% of my tongue then i had chemo and radiation. I was on the peg tube for about 8 months now i am off of it. They used a muscle in my thigh for my tongue. I kept about a 1/4 inch strip on the side of my tongue and they rebuilt the rest. It is a long slow process. I have had 1 surgery to shape the tongue better and i have another one planned for August or September. I drink a lot of choclate milk and protein shakes. Also i eat cereal, soup and mashed potatoes. I was eating more but i have some compplications from radiation. I talk a little funny now but considering what i went through i think thats ok. Prayers asked and God bless. David

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