What to expect squamous cell tongue cancer

soccerfreaks said:

Well, one opinion...
Your husband has already cut off (pardon the pun) perhaps his most viable survivor tool: surgery.

That is just my opinion of course. When I was diagnosed with tongue cancer, I was most happy that they could operate, even if it meant replacing half of my tongue with tissue and muscle and nerves from my arm. I was happy they could do a radical neck dissection to remove cancer-infected lymph nodes from my neck.

I was even happy to go through chemotherapy and radiation subsequent to the surgery. I wanted to live. Still do, by the way.

The people I have met on this site who have had surgery, including many who have had virtually their entire tongues removed, are happy and productive members of society (although the rogues among them would file disclaimers in that regard ). A dear friend of mine is a nine-year survivor, post-surgery, a network administrator, a recently married man (not so recently that he is not starting to appreciate my warning not to do it, I think ), and both cooks for and eats with his wife.

There is my argument for surgery. I will get off of that soap box without talking about the tough women that have also gone through it. Not talking wimp city here, I'm not.

Your husband can expect chemotherapy: if his cancer is squamous cell, it may very well be cisplatin. That is what I endured, and that it is what lots of others endure. It frankly slayed me. Sicker than a dog. But...others glide right through it. Hard to say, truly.

Since there is no preceding surgery, the chemo may be different, and the rounds/cycles may be different. I cannot help with that. I can only suggest that you be there with him for the chemo, at least until he is comfortable with the treatment and with his new compadres. That may take awhile. It may never happen (you caught me on an honest night).

Even though I DID have surgery, my radiation treatment amounted to 35 days under a mask that was bolted to a table, my hands restricted as well, along with my feet. Yes, they were in the next room, yes, they were hot young chicks so that I didn't want to appear to be an old wimp, yes, I had music to soothe the savage beast within (and keep time during the treatment), and, yes, I took legally prescribed drugs to soothe that savage beast even further (particularly the claustrophic aspect of that beast). Still, rads sucked. I preferred the surgery to the rads, but that is just me.

Please read other posts on this board. You will learn a great deal about eating difficulties, what to do to get around them; phlegm issues, and what to do to get around them; burning from rads issues, and what to do to avoid them as much as possible; and, in the end, about hope and humor.

I have probably just given you a sort of worst-case scenario. It is not good, even if you abstain from surgery. But it is not so bad either, at least in the long term.

Chances for survival with this disease are rather good, compared to others, despite what Doc said. Perhaps Doc is suggesting that chances would be better with surgery? Just wondering.

I had a 15-hour surgery in Oct of '05, followed by the treatments described above. I was 49 at the time. I have since had a lobe removed from my right lung. None of those things hurt me. I am NED (No Evidence of Disease).

I suggest that hub reconsider the surgery if the doctors are suggesting it. That is one man's opinion.

He will sleep through it, and you will suffer more than him, frankly.

Otherwise, best wishes to hub and his family. It won't be fun, but it will be worth it! He is clearly a lucky man to have a bright and searching wife as his primary caregiver.

Take care,

Joe

sad daughter said:

Hi I'm new to this but
Hi I'm new to this but here's my story my dad was diagnosed with a stage 4 cancer which had spread to his lymph nodes in October 2008. It was very scary to hear those words "cancer" never in a million years would i have thought he would have cancer.His best option was to have surgery which in itself is very scary to think about due to all that it entails like having a feeding tube because he would not be able to eat through his mouth , having a thrach to be able to breath, plus he would not be able to speak. Scarry stuff but he was willing to do everything needed to beat this thing.In February of 2009 he was scheduled for his surgery which was supposed to take about 13 hours because it involved the removal of part of his tongue, lymph nodes and part of his jaw and plastic surgery where they would have to use part of the bones in his leg to reconstruct his jaw and skin from his leg to reconstruct his tongue.To our surprise one of the surgeons came to us about 3hours later saying the cancer had spread to a main artery witch supplies blood to his brain and that if they continued with the surgery there was a big chance he would suffer a stroke and half of his body would be paralyzed or he could dye. My mom decided it would be best to stop the surgery and so they did.A couple of weeks later my dad started chemo, he would go in to the hospital for 5 days of chemotherapy then he would go home for 2 weeks and after those two weeks another five days at the hospital.This went on for about 6 or 7 treatments after chemo came radiation treatments every day for 5 weeks and chemo once a week. Just this week on Monday he went in to one of his scheduled appointments and the Doctors told him the treatments where not working and that his cancer was terminal. Devastating news I'm not sure what to expect or what to think i don't know what comes next, but what I would say to you is to support your husband and i would suggest you guys try everything possible including surgery if that's the best choice.It will be very hard but I'm sure can get through it.Hoping for the best for both you and your husband.

mom151 said:

HELPFUL THINGS TO KNOW WHEN THE END IS NEAR
Please note that this info is based solely on my experiences in my area, northern Fairfield County, CT.

Being prepared for the end of a loved ones life (and suffering) may seem morbid to some…it did to me, at first. But then reality sets in, and you realize later that you’re glad you had at least some things in place beforehand.

Brining Hospice in: I knew from my late father-in-laws experience that when Hospice comes in, the end is near and inevitable. They only come in if the patient has 6 months or less life expectancy; the patient must also have a DNR (Do Not Resuscitate) order in place. Their Social Workers and Grievance Consultants will continue to work with survivors for up to a year if needed.

Human nature being what it is, we don’t want to bring Hospice in what we consider ‘too soon’, thinking it sends a message to our dying loved one that we’ve ‘given up’ on them…..when actually, I think in our case my Mom looked at it as a relief…..she already knew it was almost time, kept saying ‘I know I’m dying, just leave me alone!’ Once Hospice is there, they stop all unnecessary meds….and with tongue cancer that alone is a relief, as most meds have to be taken in pill form; even crushing them to be swallowed in a liquid can be painful. Mom had been refusing most of her meds for a while before Hospice (while I could usually get her to take some, the nursing home staff can NOT force residents to do anything they don‘t want to do)….she would only take them on the few occasions when it wouldn’t hurt too much.

Hospice mainly provided liquid pain meds, in an effort to make her comfortable...and even the liquids would sometimes hurt her a lot :-(

Now, the things I myself had to do:

Writing the obituary….one thing I learned is that the funeral home has to actually submit the obit to the newspapers; supposedly the family cannot do it.

I think most funeral homes will write it for you, based on the info you give them when you first go in to make the arrangements. But, being as I am, I wrote hers myself (I had also written a rough draft for my late father-in-law…a few changes were made before it was submitted).

So, once I knew that the end was coming soon, I sat down and wrote it (about a month before the end, after the oncologist said there was nothing more he could do except to make her ‘comfortable‘ until the end), knowing that I would NOT want to be doing it after her death. It actually was a small relief having it done beforehand. I also learned that the obit is included in the funeral homes’ ‘packages’….but it can only be a certain length, or else the papers won’t print it as written….they will edit it, and that can be a ‘chop job’.

Mine was actually a bit longer than it should have been, but the ‘angel’ we worked with at the funeral home was able to get it in just as I wrote it :- )

Making the arrangements: my Mom had been saying for many years that when she died she wanted to be cremated and then buried with her Mom, so that is what I asked for when we went to make the arrangements. A BIG piece of advice: if the person responsible for the arrangements has any inkling whatsoever that some other family member(s) might disagree with your decisions, DO NOT take them with you to the funeral home!! It can be aggravating and embarrassing, no matter how well intentioned they may be!

In Connecticut, residents who are on State Aid (Title 19) are entitled to the sum of $1800.00 to be paid directly to the funeral home for the expenses. While my daughter had read this somewhere, I learned it was in fact true from the funeral home directors…and they also told me that if Mom had ANY amount of money left in her checking and/or savings accounts at the time of her death, it would be deducted from the $1800. Her only income was from Social Security, and with most of that going to the nursing home, there was very little in there, but I took it all out anyway, to use towards what we paid to the funeral home (my name was also on her account, had been for years….LOL, ever since I checked her checkbook ledger one day, and found all kinds of goofs!)

I breathed a small sigh of relief once I knew that the amount I had to come up with (Mom had NO burial expense insurance, or savings…it‘s a good thing to look into) was $1800 less than the actual cost of the package ($4600)…but then I also got stressed because I had to come up with the rest BEFORE signing the papers……luckily, we were able to come up with it in time :- )

Don’t know if this will be helpful to anyone, but it can’t hurt to put it out there…our package included:

**A ‘rental’ casket: even though Mom was going to be cremated, I wanted her ‘there’ for the wake, not just pics, or the urn with her ashes….casket was closed, because she didn’t look very good by the end, and I didn’t want (well meaning??) guests gawking at her, or talking about how she looked then or later. And because the casket was closed, she didn’t have to be embalmed…one less expense.

**Obituary in our local paper for one day
**Cremation: transportation to and from crematory, necessary paperwork
**One 2 hour wake/viewing time
**Guest book & memory cards
**Copy of the death certificate****

The funeral home could have provided an urn, but in an effort to save, I ordered one online…which the Director told me was a good choice, seeing as theirs were much more expensive. Also, seeing as her ashes were back to them just one day after she went to the crematory, I brought the urn there and they kindly agreed to hold it for us until we’re ready to take it to the burial sight….almost 3 weeks.

****When making the arrangements at the funeral home, MAKE SURE the info you give them for the death certificate is ACCURATE, and if it's the case, includes CANCER as the underlying cause of death!! It’s a long aggravating process to have anything corrected or changed after it’s printed. Mom’s had her Mom’s first name incorrect…a typo that the Director made while filling it out, picked up the name of the college she attended instead of her Mom’s name, no big deal, easily corrected. But the BIG omission, in my opinion, was that CANCER was NOT listed as a contributing cause of death…just ‘cardiac arrest’ and ‘respitory failure’. This really ticked me off, seeing as if it hadn’t been for the cancer she would NOT have had the other problems…she had other medical issues, but her heart & lungs were in better shape than mine!

What made it worse was that her nursing home doc was on vacation when she died, so the nursing home medical director had to sign the death certificate…and she, not knowing Mom’s history, just went by what she was told by the nurses, that the immediate cause of death was cardiac arrest and respitory failure. Now, 3+ weeks later, we’re STILL waiting for the 2 docs to decide which of them has to make the change (seeing as I am INSISTING that ’cancer’ be on there, too…the State uses these certificates to compile statistics, and I don‘t want her death by this horrendous cancer to go uncounted)…even though the funeral home director has TOLD them that the doc who actually SIGNED it HAS to be the one to make the change….:- (


The funeral home package did not include the burial of the urn, as we’re taking her out of state to be buried with her Mom in a family plot….that cost is another $910 to open the grave and for a liner (box) for the urn, plus whatever it will be to have her name added to the existing headstone. Can’t imagine how much more it would have been if we had to purchase a plot & headstone here….and sorry, but I am NOT open to keeping the urn with me! Besides, she WANTED to be with her Mom :- )


So….that’s about it…hope this was helpful to at least one family going through this. If I think of anything I’ve forgotten now, I’ll add it later. Any questions, I’ll check back here now & then and try to answer.

tdcrowe said:

squamous cell
i am a single mom of two teenagers, i was diagnosed yesterday, with cancer ( squamous cell) tumor of my tongue. i am going to have the surgery and the the reconstruction of my tongue. I am optimistic. just terrified. not known what to expect yet with chemo, or radiation. yet... i am just courious about what ot expect. i am worried about how to pay for this and bills. i do have cancer insurance. but im not sure what to expcet.

I was stage 4 neck cancer with an unknown primary but the Iowa City Onc felt it was tongue or tonsil based. It presented itself as a lump on my neck in the lymph node. I received 35 days of radiation and three chemo sessions with cysplatin. I had no problems with the chemo other than stopping my anti-nausea pills too soon (don't do that) and about a 40% loss of hearing. In fact my third & final tretament was only 60% strength because of fear of losing 100% of my hearing. I finished my treatments on February 25, 2012 aqnd going in for CT scans on Friday March 8, 2013. I plan on celebrating that night. The radiation effects are not good. Both burns on the outside od the neck and 2nd to 3rd degree burns on the inside. I had a liquid diet diet (milk, broth and Ensure) at the end. Many things were very irritatiing to the throat. I had weight to lose so I chose not to have a feeding tube. I ate heartily until I couldn't any more. Eventually lost aout 55 pounds through the ordeal. My doctors did not recommend surgery unless needed after treatments, as scars do not respond well to radiation. As a side-note, I still do not have to shave from my chin down! I have issues with not being able to eat certain foods - beef, pork, etc. Dark chicken isn't bad as it has moisture. Anything dry is a bit of a struggle: crackers, chips, lettuce. Good choices are pastas, eggs, most fish, baked potatoes, etc. I think people respond differently to foods. Also, chances are good that they will pull teeth as the radiation is rough on them and if they need to be removed during treatment, they will not heal. Hence the proactive approach. A friend of mine with exactly the same cancer had 12 pulled. I only had three pulled. I wish you well.

I am new to this site and quite sadly I am overwhelmed by all the stories of the survivors on this site.  I cry with each and every account I read.  You are so stoic and kind and so many of you have suffered what I think, I could never endur.  Is the quality of life for you improved once you make it through the immediate chemo/radiation recovery?  I don't see where anyone can eat easily afterwards, or swallow easily, or keep their teeth.  Am I only seeing the worst case recoveries?  Does anyone have a 'back to normal' quality of life once their treatments end or does everyone end up in more or less the same state with these debilitating life long problems?   I am so sorry to ask these questions as they are difficult for me to ask and may be even harder for you to answer.  I am researching everything I can, ahead of time. I am on my way to Mayo in a couple of weeks and want to be prepared.  May God take care of each and every one of you. Thank you so very much.

pamy said:

Does everyone suffer so much with base of tongue cancer?

I am new to this site and quite sadly I am overwhelmed by all the stories of the survivors on this site.  I cry with each and every account I read.  You are so stoic and kind and so many of you have suffered what I think, I could never endur.  Is the quality of life for you improved once you make it through the immediate chemo/radiation recovery?  I don't see where anyone can eat easily afterwards, or swallow easily, or keep their teeth.  Am I only seeing the worst case recoveries?  Does anyone have a 'back to normal' quality of life once their treatments end or does everyone end up in more or less the same state with these debilitating life long problems?   I am so sorry to ask these questions as they are difficult for me to ask and may be even harder for you to answer.  I am researching everything I can, ahead of time. I am on my way to Mayo in a couple of weeks and want to be prepared.  May God take care of each and every one of you. Thank you so very much.

Can you repost this in your own thread?  I think you'll get more responses if you do since this one orginated in 2009.  Oh...and yes, there are many of us that go thru treatment, get done and pick up our lives pretty much as we left them at the beginning of treatment.   I did....less some ability to taste and less some saliva....but pretty much the same old me.

You have found a WONDERFUL forum to ask your questions before you start treatment, an during....and quit researching....it sounds WAY worse "out there" on the wide world web, than if you simply talk to the survivors here....trust me on this one.  What you're reading out there is outdated and very possibly wrong....and written by folks who have only been spectators....Here is where you'll get the real skinny.

p

I received a similar diagnosis on March 7,but I don't how similar my situation is to your husband's.  I am one-week post-surgery after having surgery on my tongue and tonsills and having lymph nodes on both sides of the neck removed.

This discussion board is a great place to be. Take the time to search and read the posts to learn what others have experienced and recommend.  Don't hesitate to ask questions. People will reply with both support and good information.

One lesson I learned over the past month is it takes time to come to terms with the diagnosis and to fully understand the treatment options.  Like you and your husband, I was devastated by the diagnosis and thought my life was over.  I, too, heard 50/50 survival but later a different doctor told me 90/10.  I learned that the statistics are misleading because they are based on past treatments and treatment gets better every year and because every person is different and every course of treatment is unique, making it impossible to predict an individual person's survival rate.  It is important to listen to your doctor but also to get a second opinion or even a third opinion (which I did) so that you have the best possible information to decide about treatment. 

Good luck.  Keep us informed. 

M

debbiejeanne said:

john, how do u add the cute

john, how do u add the cute figures to your posts?

God bless,

debbiejeanne

Like this;

If so, I belong to a few forums, fishing mainly (go figure, huh).., also one for Titan Talk... (I have a Nissan Titan PRO-4X), LOL... Anyways, the susel he is on a few of those sites, I just right click copy and paste...

You should be able to do the same with this one   ...

Best ~ John