Any advice for my mom about to have surgery for tongue cancer?

sybremi · February 2012

Hi Everyone,

My mom was diagnosed with stage 3 SCC of the left tonsil and lymphnode. She received about 2.5months of radiation and chemo., followed by another 2 months of chemo after radiation, treatment ending in 10/2011. She was declared cancer free 12/2011.

Two months later her PET scan revealed the cancer spread to the entire base of her tonue, back on her left tonsil and up to her soft palate. I flew her out to Seattle where I live for a 2nd opinion. We went to the University of WA and the recommendation was thigh flap grafting, tongue amputation, mandibulectomy and partial neck dissection. She can't have radiation post surgery because she has reached her limit.

We are terrified- if she doesn't have the surgery, her prognosis is 10% survival at 1yr. If she does have the surgery, her prognosis is 40% chance of survival at 3 yrs. Has anybody been through surgery WITHOUT follow-up radiation? Can any surgery survivors give us any advice?

She can't swallow any more and we know that she probably won't be able to swallow ever again, may have a permanent tracheostomy tube, and lose her voicebox. This surgery sounds extremely radical and scary, but if she doesn't do it, her prognosis is terrible, but not that great either with surgery.

Has anybody ever had the cancer return and just do chemo alone? We understand that chemo alone may not help much, but that is what the surgeon said, we haven't met with a new medical oncologist out here to here what they have to say.

Sorry for the long post and thank you in advance for any response-

Renee

longtermsurvivor · February 2012

Hi Renee
Let me first say I'm sorry for your mom's circumstances. It is tragic, the severity and frequency with which she, and you, have been challenged. The situation is as dire as you imagine. Nevertheless, you've clearly had the plusses and minuses explained pretty thoroughly by the treatment team, so at least you are not completely in the dark as to what the circumstances are.

To a certain extent I'm your mom, in reverse. My original cancer was base of tongue, in 1998. That was successfully treated with a radical neck disection (1 positive node) and radiation. I was cancer free for 11 years after that, and very functional.

Then, in 2011 i got a second cancer, in the floor of my mouth between the teeth and tongue. Radical resection and reconstruction later, a very major surgery including tracheostomy, vascular flap grafting from arm, feeding tube, the whole nine yards. I did pretty well after that surgery, but got a recurrance within a year.

This recurrance was left pharynx and soft palate, for which I went through chemotherapy for 4 months and radiation a second time (you can be reirradiated, but it pretty much can't be with the first couple of years). I've done pretty well with this, just finishing radiation last week.

I can't eat solid foods now, but I can get liquids down, and I anticipate eventually being able to eat a regular diet. I don't have a trache, and although my speech is pretty messed up, it will return to reasonable in teh nextt few months.

In this, I'm entirely different than your mom. Unfortunately, her occurances ended up with radiation,,then an immediate recurrance. That leaves this surgery as her only option, if the effort is still to cure her cancer. This surgery will be very difficult, and will likely leave her with the deficits you already are aware of. And as extensive as her cancer is, the odds of a cure are pretty low.

Chemotherapy, by itself, will not cure her cancer. It may slow it down. There are others on the board who are in this situation, and I'll let them speak for themselves. Partly, therefore, her decisions are quality of life-based, and life-expectancy based. These types of things simply have to be discussed before decisions are made.

I'm sorry I can't give you more cut and dried answers to questions that I'm sure are keeping you all awake at night right now. If I can be of any help, please yell at me.

Pat

joannaw81 · February 2012

hello
I completely understand how you feel and how concerned you are. I believe that anything is possible and you should never loose hope. This is my mom'story:
11/15/10-diagnosed with stage 3 left tonsil cancer with 1 lymph node, radical left neck dissection and removal of the tonsil plus removal of small tumor on hard palate on the right side
2/17/11-finished radiation, no chemo
10/6/11-surgery for recurrance/mestastasis on the left side of oral part of her tongue
now-getting ready for another surgery on 3/1/12 for her tongue again since it lighted up on PET scan close to where her first tongue surgery was and radical right neck dissection since it lighted up on one of her lymph node on the right side. I don't think she can have another radiation because it's only been 1 year since she finished the first radiation. Doctors will figure out after the pathology report comes back to see if there is anything else that they should/can do. I'm sure it sounds scary but I like to think that it is all still curable. I believe that her tongue cancer was second primary and now it showed skipped leasion on her tongue again (what is very common in this type of cancer), I also think that the right lymph node was there all along from the small tumor on the righ side but it is now just showing up. I hope I am right. I know your mom's situation is far more advanced but if you would like to talk I am here for you. I believe that chemo alone is used as pallative care in this type of cancer(it is not used to cure the cancer) but I know there are people here that live for a long time with this type of care. This will be very hard decision for all of you to make but don'tforget that at last it will be your mom's decision. I have been thinking what I would do if I would have to have a cnversation like that with my mom and I just can't imagine that but I always tell myself that "God never gives you what you are not able to handle" so I trust in HIM.

sybremi · February 2012

joannaw81 said:
hello
I completely understand how you feel and how concerned you are. I believe that anything is possible and you should never loose hope. This is my mom'story:
11/15/10-diagnosed with stage 3 left tonsil cancer with 1 lymph node, radical left neck dissection and removal of the tonsil plus removal of small tumor on hard palate on the right side
2/17/11-finished radiation, no chemo
10/6/11-surgery for recurrance/mestastasis on the left side of oral part of her tongue
now-getting ready for another surgery on 3/1/12 for her tongue again since it lighted up on PET scan close to where her first tongue surgery was and radical right neck dissection since it lighted up on one of her lymph node on the right side. I don't think she can have another radiation because it's only been 1 year since she finished the first radiation. Doctors will figure out after the pathology report comes back to see if there is anything else that they should/can do. I'm sure it sounds scary but I like to think that it is all still curable. I believe that her tongue cancer was second primary and now it showed skipped leasion on her tongue again (what is very common in this type of cancer), I also think that the right lymph node was there all along from the small tumor on the righ side but it is now just showing up. I hope I am right. I know your mom's situation is far more advanced but if you would like to talk I am here for you. I believe that chemo alone is used as pallative care in this type of cancer(it is not used to cure the cancer) but I know there are people here that live for a long time with this type of care. This will be very hard decision for all of you to make but don'tforget that at last it will be your mom's decision. I have been thinking what I would do if I would have to have a cnversation like that with my mom and I just can't imagine that but I always tell myself that "God never gives you what you are not able to handle" so I trust in HIM.

Thank you for your comments
Thank you for your comments and thoughts. Mom is doing the presurgical work-up while she is still contemplating whether to have the surgery or not. Because she can't have radation afterwards, the scary thought is she will end up with the same longevity/outcome is she were not to have the surgery. What a hard decision. She told me last night if it weren't for her girls and grandchildren, she wouldn't go through with it. That was tought to here.

Thanks again,
Renee

CaKat · February 2012

sybremi said:
Thank you for your comments
Thank you for your comments and thoughts. Mom is doing the presurgical work-up while she is still contemplating whether to have the surgery or not. Because she can't have radation afterwards, the scary thought is she will end up with the same longevity/outcome is she were not to have the surgery. What a hard decision. She told me last night if it weren't for her girls and grandchildren, she wouldn't go through with it. That was tought to here.

Thanks again,
Renee

Difficult situation
I'm sorry for your choices. Your Mom's story is very close to mine. Radiation ended 10/10.
Cancer back 11/10. Several small surgeries, partial tongue removal, 1/2 tongue removal, skin graft in left side 10/11. Cancer back base of tongue 12/11. Choice of chemo or surgery to take rest of tongue and voicebox. Permanent trach, feeding tube. I went for the chemo
knowing I could never have radiation again. First 6 weeks got rid of some of the cancer, but it grew at the base of the tongue. Now I'm in my second 6 weeks with an added chemo agent.
Any decision you-all make is a brave decision. I was told that chemo, if it works, can add some life, not cure. My prayers for you all.

patricke · February 2012

No Good Choices
Hey Renee, I had BOT cancer in 2000, for which I had radical surgury, and 35 radiation treatments. The radiation closed the entrance to my esophagus, and I've been on a feeding tube since. Last June the other shoe dropped, and I had a tumor removed from the entrance to my trachea (caused by the earlier radiation), and my larynex was removed at the same time due to the nature of how this cancer tends to spread. I had ho follow-up radiation due to the tissue fibrosis in my neck from the first time around. So, I am, at this time, a speechless tracheostomee, but most happy to be here. I use a Brookstone "Boogie Board" LED writing tablet, and IPad to communicate. I use a Vitamix blender (expensive but worth it, and I believe the company will give a discount for those who need it for medical issues) to blend everything my family is having at any given meal, and when I'm out I have a couple of cans of Fibersource (available at medical supply stores)which provide complete nutrician meals, and they're pretty appetite satisfying.

My first follow-up scan was clear, so, so far so good. I believe that staying alive is the most important thing. Your mom will have a lot of adjusting to do, which won't be a walk in the park, but she will still have a life to live.

PATRICK

longtermsurvivor · February 2012

patricke said:
No Good Choices
Hey Renee, I had BOT cancer in 2000, for which I had radical surgury, and 35 radiation treatments. The radiation closed the entrance to my esophagus, and I've been on a feeding tube since. Last June the other shoe dropped, and I had a tumor removed from the entrance to my trachea (caused by the earlier radiation), and my larynex was removed at the same time due to the nature of how this cancer tends to spread. I had ho follow-up radiation due to the tissue fibrosis in my neck from the first time around. So, I am, at this time, a speechless tracheostomee, but most happy to be here. I use a Brookstone "Boogie Board" LED writing tablet, and IPad to communicate. I use a Vitamix blender (expensive but worth it, and I believe the company will give a discount for those who need it for medical issues) to blend everything my family is having at any given meal, and when I'm out I have a couple of cans of Fibersource (available at medical supply stores)which provide complete nutrician meals, and they're pretty appetite satisfying.

My first follow-up scan was clear, so, so far so good. I believe that staying alive is the most important thing. Your mom will have a lot of adjusting to do, which won't be a walk in the park, but she will still have a life to live.

PATRICK

Hey Patricke
Thanks for the update, I'd been wondering if you were still doing well! You are a great inspiration and its great to hear how you are still beating this thing. Sending you a PM. Thanks for the post!

Pat

sybremi · March 2012

longtermsurvivor said:
Hey Patricke
Thanks for the update, I'd been wondering if you were still doing well! You are a great inspiration and its great to hear how you are still beating this thing. Sending you a PM. Thanks for the post!

Pat

Unable to cough up saliva
Hello all and thanks for having a wonderful supportive network.

My mom still hasn't decided which route to take. Right now, she is so miserable (in bed, neck pain, 80lbs) she can't even think about it. What is the best method of clearing her throat? She barely was able to sit up this morning and said she felt like she needed a trach tube right now- she had so much mucous she can't cough it out.

Also, she was anesthetized Wednesday for scoping and biopsy to confirm the recurrence was still SCC. After her procedure, the doctor told me she would have to have a full tongue amputation vs partial. Has anybody had a full tongue amputation?

Thanks for your help,

Renee

Dav1965 · March 2012

sybremi said:
Unable to cough up saliva
Hello all and thanks for having a wonderful supportive network.

My mom still hasn't decided which route to take. Right now, she is so miserable (in bed, neck pain, 80lbs) she can't even think about it. What is the best method of clearing her throat? She barely was able to sit up this morning and said she felt like she needed a trach tube right now- she had so much mucous she can't cough it out.

Also, she was anesthetized Wednesday for scoping and biopsy to confirm the recurrence was still SCC. After her procedure, the doctor told me she would have to have a full tongue amputation vs partial. Has anybody had a full tongue amputation?

Thanks for your help,

Renee

Sorry for your Mom
I have had about 95% of my tongue removed and some on my sides of my mouth. Plus chemo and radiation. I had stage 4 cancer that was treated by a team of people. The cancer surgeon, the chemo doctor and radiation doctor all had meetings once a week to discuss my case. I also had cancer in 38 lymphnodes in my neck that was cancer.

I think what helped me out was they treated me very aggressivly. When i had my first surgery in July 2010 they were going to remove half my tongue but when i woke up they remove almost all.

Also i have had a surgery to shape my tongue better and i am having another surgery in April to shape my tongue one more time.

Good luck. David

sybremi · March 2012

Dav1965 said:
Sorry for your Mom
I have had about 95% of my tongue removed and some on my sides of my mouth. Plus chemo and radiation. I had stage 4 cancer that was treated by a team of people. The cancer surgeon, the chemo doctor and radiation doctor all had meetings once a week to discuss my case. I also had cancer in 38 lymphnodes in my neck that was cancer.

I think what helped me out was they treated me very aggressivly. When i had my first surgery in July 2010 they were going to remove half my tongue but when i woke up they remove almost all.

Also i have had a surgery to shape my tongue better and i am having another surgery in April to shape my tongue one more time.

Good luck. David

Thank you David,
My mom is
Thank you David,

My mom is very hesitant about the surgery. She is pretty weak now, in quite a bit of pain-hurts to talk, intense headaches, having difficulty coughing up her mucous. She is in the bed most of the time. Is this a decision I need to convince her of doing? She is suffering so much now, she feels like she can't handle anymore. Does the pain get better post-op? When the healing is complete, will she feel normal again?

Thank you,
Renee

Dav1965 · March 2012

sybremi said:
Thank you David,
My mom is
Thank you David,

My mom is very hesitant about the surgery. She is pretty weak now, in quite a bit of pain-hurts to talk, intense headaches, having difficulty coughing up her mucous. She is in the bed most of the time. Is this a decision I need to convince her of doing? She is suffering so much now, she feels like she can't handle anymore. Does the pain get better post-op? When the healing is complete, will she feel normal again?

Thank you,
Renee

I dont know how to say it
She will get better but she will never be the same. It is called the new normal. I have had one surgery to shape my tongue better and i have another operation scheduled for April to shape it again.

Getting better is not easy and it will be hard work but you can make it. I was stage 4 so anybody can make it. If you would like to talk to me i will give you my number. God bless David

Any advice for my mom about to have surgery for tongue cancer?

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