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What to expect squamous cell tongue cancer

justasiam
Posts: 1
Joined: Jul 2009

My husband was diagnosed today with stage 4 squamous cell cancer of the tongue and it involves lymph nodes.Doctor suggest radiation 5 days a week for minumum of 7 weeks and chemo as well not sure how much or often on the chemo.The doctor told him he has a 50/50 chance of recovery, is this the norm? He suggested they could remove the tongue and voicebox which my husband said no too...I need info on what to expect.... Thanks!!!

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

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

SASH's picture
SASH
Posts: 277
Joined: Apr 2006

Well I am the friend that the "freak" mentioned. I was stage 4 tongue cancer but I licked it. I did 9 weeks of radiation (46 because of holidays and weekends) and 10 chemos that were supposed to be done simultaneously with radiation. My tumor was isolated to my tongue but it was so large that they had to shrink the tumor before surgery. If they opted to do surgery first they were going to remove my entire tongue and my voice box. The radiation and chemo helped reduce the tumor so they thought I would only lose 85-90% of my tongue.

But when they went in and did the radical neck surgery, sliced from ear to ear, they did 6 deep tissue biopsies and only found scar tissue and dead cancer cells. They did remove the base of my tongue and attached the rest to the floor of my mouth. So now I don't talk using my tongue and only the tip of my tongue moves up and down. It doesn't go past my teeth.

Good luck with what ever you and your husband choose to do for treatment but I would suggest going for as much as the doctors feel is necessary to save a life.

SASH

sad daughter
Posts: 1
Joined: Jul 2009

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
Posts: 2
Joined: Jul 2009

Hi Sad Daughter...I'm one, too, as my Mom (82) recently passed away from this horrible disease. I don’t know what your Dad’s docs have told you & your Mom, but I know what my Mom’s docs did NOT tell us…so I’m going to tell you, now.

First some background, will try to make it short: Mom, who had been in a nursing home for almost 3 years (all manageable illnesses, a touch of senility made the home necessary) was diagnosed in late 9/08, first surgery 10/21/08, by one of the top surgeons in CT. He did a neck incision to check the lymph nodes…the pathology came back negative…we thought we were done. No radiation, no chemo.

Back for the 3rd-4th follow-up in February…it was back, again in her tongue. Another surgery on 3/3/09, more extensive, no pathology done this time. Again, no radiation or chemo.

Back for 1st follow-up, it was back AGAIN, this time in her neck also, same area where nodes had been checked in October. Surgeon said it was a very aggressive form, and inoperable at this point…went to an oncologist, started chemo (which would only extend her time)…after 3 weeks she couldn’t take it anymore, so stopped.

Brought her to see oncologist on 6/12, so he could see the swelling on her neck from the tumor there. He agreed chemo wasn’t working, mumbled something about ‘hmm…looks like this might break…’ He never explained what he meant, and in my upset state, I never thought to ask.

Had been talking with Hospice for a few days, called them in that day...they started her on pain meds (will get to that issue next).

When I went in to see her the next day, first thing I noticed was a bandage around her neck…seems something had ‘broken’….the nurse told me it was a wound that opened from the pressure of the infection around the tumor.

FIRST THING ONE DOC OR THE OTHER SHOULD HAVE TOLD ME WAS POSSIBLE!!

They gave her antibiotics, that wound healed up…but then another one formed :- (

Next: the pain meds…Hospice started her right off with Fentanyl patches, on the 13th she was on her way to LaLa Land, big time….hallucinating one minute, out cold the next…for FOUR days, til I finally got them to change the meds.
Seems they mistakenly presumed that she had been taking Percocet on a regular basis, which she had NOT….she hated Percocet, it made her vomit, which caused more pain to her already painful mouth. She would only take Tylenol Extra Strength, unless the pain was so bad that she had to take the Percocet.

Well….I did some research, seems the FDA says NOT to put Fentanyl patches on anyone who has NOT been taking a narcotic drug around the clock for at least 7 days. Got the Hospice nurse to finally realize that she wasn’t taking the Percocet regularly, they changed her meds, she came down from that 4-day high, at least enough to know who she was and who we were and where she was, etc….most of the time :-)

Now, the worst part, at least from my point of view: at 3 am on Wednesday 7/8, the nursing home called to tell me that Mom was coughing up blood. She was fine by the time I got there, but I saw the bedding they removed…there was quite a bit of blood, from the tumors on her tongue…and, at the same time, blood gushed from the wound on her neck.

SECOND THING ONE DOC OR THE OTHER SHOULD HAVE TOLD ME WAS POSSIBLE!!

It happened 4 more times up until around 3 pm…that time being by far the worst, they had to bring in a huge suction machine to keep her from choking. It was so bad that time that I had to leave the room, LOTS of blood, big clots….horrible.

No more after that…but more meds to stave off the pain made her more & more out of it.

She passed away just before 1:00 pm on 7/9/09...which, ironically, was her grand-daughters (my daughters) birthday.

Now I understand that every patients case is different, and that these thing might NOT have happened in her case….but I wish that SOMEone had told me that some of these things MIGHT be possible, so that I might have been better prepared when they did.

Sad Daughter, I sincerely hope that your Dad doesn’t experience any of this, but if he should, at least if you read this, you’ll be better prepared for it…at least a little.

One more thing: if the docs say they can’t do any more for your dad, it’s really best to have a DNR (Do Not Resuscitate) form made out for him. I didn’t want to do this, but the oncologist, nurses at the home and the Hospice nurses were able to make me realize that it really WAS for the best for my Mom (besides, Hospice won't come in if there isn't a DNR). The affects from this cancer are SO devastating, and being kept alive by machines while suffering those things I’ve told you about is a really horrible way to be. Not having a DNR is really more for the family, not the patient….at this point, the patient is better off dying…as hard as it is for us to let go. As it was, my Mom was pretty peaceful at the end…the pain meds kept her from feeling anything….and I was right there holding her hand.

Funny thing…very shortly before she passed, I was telling her that it was okay to let go, that she’d be seeing all her loved ones who were waiting for her, and that those of us left behind would be okay….about 5 minutes later, she was gone. Makes me really believe what I’ve heard about people needing to be told it’s okay to go before they’ll actually let go of life….

mom151
Posts: 2
Joined: Jul 2009

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.

Artray
Posts: 24
Joined: May 2009

okay...I'm going to go back to the original questions, although I'm a couple weeks late!
My husband was diagnosed with scc late last summer, base of tongue and some involvement in the lymph nodes. The oncologist RECOMMENDED we start with the radiation and chemo to try to shrink/kill the cancer so we went with his recommendation. After 35 radiation treatments and 3 sessions of cisplatin the 'mother' tumor at base of tongue was GONE! However, there was still activity in the lymph nodes so 4 1/2 months later they did a radical neck dissection. I was terrified and looked up all the info I could find but as many of us know, every case is so very different.
Anyways, he had the surger 4 weeks ago. Although they did take the major structures from his neck on the left side, he still has his tongue and has (again) begun to eat 1-2 meals aday, supplemented with his feeding tube. His speech is somewhat impaired and his swallowing is difficult and the mucuous is still a pain in the ___ but the dr's said that they think they got it all and the margins after the surgery look good so...

This is our experience. I, personally, am so thankful that they didn't do the surgery first as this procedure has spared his tongue.

I wish you all the luck as going thru this is mindnumbing enough and then to add the difficulty of dealing with the Dr's lack of info...

Jeani

tdcrowe
Posts: 1
Joined: Mar 2011

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.

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

TD,

Sorry you have had to find yourself but you came to a good place for help.

Can i suggest you start a new topic with your questions, as this is a old thread. You will get plenty of shared experiences. Also can you add in as much info about your diagnosis: Staging, where on the tongue and is there any spread to lymph nodes.

Scam

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

With respect to finances, try these, just for starters (and I think at least one of them has conjoined with another):

http://www.cancer.gov/cancertopics/factsheet/Support/financial-resources

This site is put up by the National Institute of Health or some such, and is government-supported.

Cancer Care, a non-profit org., offers free support and counseling for cancer patients by oncology social workers. They have face-to-face counseling and counceling on the phone. Support groups on the phone are available too and are moderated by an oncology social worker. Call 800-813-HOPE. They can also give you info about financial resources. Check their website: www.cancercare.org

Gilda's Club - www.gildasclub.org - they offer free social and emotional support. Not sure if they may have financial information but check it out just in case.

Live Strong - www.livestrong.org - offers one-on-one support.

American Cancer Society (here) can also give you financial, support, etc. information available in different cities.

Take care,

Joe

honeybelle22's picture
honeybelle22
Posts: 70
Joined: Feb 2011

Your question is buried way down in the botton so go to the top where ir says "Post a new discussion" and start again. There are many here that will help and maybe not scare you so much.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

It's good to have an expert on the board. Thankfully, you have arrived.

To be honest, there is quite a difference between scaring people and being honest, although I cannot begin to imagine to whom you are referring.

Take care,

Joe

Hawkeye 1
Posts: 1
Joined: Mar 2013

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.

phrannie51's picture
phrannie51
Posts: 3679
Joined: Mar 2012

nobody wants to belong to.  I think you'll get a lot more responses if you start a new thread, with all the information you wrote above....there are many, many great people here....smart, knowledgeable, and supportive. 

It sounds like you're doing pretty darn good.....as good or better as many others here.  I'm nearly 7 months out, and can't eat the same things you mention....the meats, anyway....but I keep trying!! Laughing  I love homemade soups....so let them be the mainstay of my diet, along with a weekly 1/2 gallon of icecream....I still can't taste it, but I eat it anyway....LOL....

p

pamy
Posts: 2
Joined: Mar 2013

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.

Skiffin16's picture
Skiffin16
Posts: 8069
Joined: Sep 2009

Me, me...notice me... LOL....

Actually you must be only looking at the worse of posts... There are tons of survivors here that have regained nearly, if not all of their former ways of life, or close to it any ways...

Yes, many do carry a little extra baggage away, but over all quality of life is good for many.

Myself, Dx as STGIII SCC tonsils HPV+ and a lymphnode, sixteen weeks four types of chemo, seven concurrent with daily radiation. I lost all taste and saliva for a few months... That was back in January 2009... It took nearly two years to get all taste back, nearly all saliva... I have all of my teeth, and no real dental issues that I never had before Tx.

I still work full time, and fish nearly every week-end...

My suggestion to you..., stop researching... You're only going to find things that lead you to believe what you took away initially... we are all doomed to a life of misery post cancer... Not the case at all.

Best,

John

debbiejeanne's picture
debbiejeanne
Posts: 2371
Joined: Jan 2010

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

God bless,

debbiejeanne

Skiffin16's picture
Skiffin16
Posts: 8069
Joined: Sep 2009

Like this;

susel

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 suselhe 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   susel...

Best ~ John

debbiejeanne's picture
debbiejeanne
Posts: 2371
Joined: Jan 2010

suselit wored.   lol

Skiffin16's picture
Skiffin16
Posts: 8069
Joined: Sep 2009

LOL, now both you and I have it...

phrannie51's picture
phrannie51
Posts: 3679
Joined: Mar 2012

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. Laughing  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

wrhbounds's picture
wrhbounds
Posts: 38
Joined: Jan 2013

Pammy

I love life & I am very happy 

Yes this is the new me but after 14 years I don't remember the old me. 

Believe in happiness, live long and be prosperous  Dr Spock said it I just lived it

MICH4EL's picture
MICH4EL
Posts: 73
Joined: Mar 2013

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

 

mls351w
Posts: 88
Joined: Jul 2011

Okay, my BRIEF story.

Stage IV, base of tongue, lymph node issue(size of a hard-boiled egg). I was given three choices.

1. Surgery with no chemo and "minor" radiation.

2. No surgery, chemo, "heavy" radiation.

3. Do nothing.

We chose no surgery, chemo, and heavy rads. I went through 2 chemo treatments and 40 days of rads. Went through all the saliva, sore throat, feeding tube, second degree burns, thrush, not sleeping, lost weight, no taste, severe flu-like symptoms, and everything else related to this Hell. Feeding tube removed 2 weeks after treatment.

5 months later I had surgery to remove 5 lymph nodes in my neck and port removal. Center node was cancerous. Went back to work after Christmas. That was 2006.

6 months after surgery, saliva was 100%. Taste 110%(yes!). Swallowing 100%. Teeth are in better condition than before treatment. NO side effects what-so-ever. Only issues are "turkey neck" and dead nerves where surgery was performed to remove nodes. My rad onc calls me the ssc bot poster child. Of course, I followed my doctors and dentists instructions to the letter, which I understand, a lot of patients do not. I truly believe I had the very best care possible from everyone associated with my treatment. Maybe that is the difference in my story and most others.

I am not recommending any course of action. Just letting you know there are success stories as well.

And by the way, a 50/50 chance of living? My rad onc gave me an 85% chance of full recovery! She said it is one of the easiest cancers to treat and has one of the highest success rates. A lot of you may scoff at her remarks, but in my case she was right on!

All things are possible

Mark S.

 

 

Bimmerknut's picture
Bimmerknut
Posts: 2
Joined: May 2014

I officially became a member of this club two weeks ago when I was diagnosed with Level 1 Squamous. A few notable and relatable things are that I am a 60-year old man. Okay, TOMORROW I will be 60. I am a survivor of non-hodgkins lymphoma as of 2006. I quit smoking in 1991 and to say I drink alcohol lightly is putting it mildly. I rarely drink and when I do it's one or two and almost always to accomodate a meal.

I also have Barrett's Esophagitis and it IS relvant to my story, so that is where I'll begin. I was diagnosed with Barrett's in 1997. The short of it is I lose 80% of the food I eat. When that food comes back up, so do the stomach acids. Those stomach acids have over the years eaten the enamel on my teeth and I've lost a handful. In the past year, I've been working with a very good dentist to perform root canals and use crowns to save the teeth that I can and then go to dentures.

About four months ago, I while we were doing a root canal, I mentioned that my tongue was becoming irritated on the side by a sharp portion of tooth. She ground the sharp edges of a tooth and it was better. Another month later and I was still having problems. We tried to grind again. Suddenly a callous/lesion formed and become very thick and constantly painful. Everything to do with my mouth hurt. Eating, swallowing, chewing, spitting, talking, sucking on a straw and even lying in bed on that same side. This chronic pain had led to sleep deprivation and utter fatigue and exhaustion. I'm disabled through a back injury but I'm in my senior year at my local university and it has greatly affected my ability to study, read and take part in oral presentations.

My dentist finally referred me to an ENT doctor who took a biopsy and the result has landed me in your club of people sharing what thier experiences are. Treatment is set for surgery on June 6th. He is going to remove a football-shaped portion of my tongue and have it set to the lab while I'm still sedated to make sure he gets it all. I'm okay with all of this! But, the pain has also been deep down near my jaw-bone and I have very mild but frequent ear-aches. I'm fearing that it has gone into my lynph nodes. I'm also fearing that the spot on my jaw, below my tongue cannot be exised and that would mean chemo and radiation. My oyhrt bout with cancer was in my ukpper groin. Getting chemo and radiation in the head and neck area frankly leaves me unneasy.

I'm still sleep-deprived every night. It's wearing me down. I'm a HUGELY optimistic person and I know that God HAS me in this! My faith is immense! Even that being said, there is a certain amount of depression that has crept in slowly. I know that it is not clinical depression, but depression nonetheless from sheer exhaustion.

Normally, most people would apologize for being long-winded, but I am a creative writing major and I take certain prides in that. So without boring you all further, I'd be very pleased to hear your comments and associations. Also, is there anything that any of you do at home that has helped the discomfort? Heat packs? Cold packs? Salt-water rinses? I'm pretty stuck to soft foods as chewing is now a chore due to the pain and the lack of most of my teeth which are used for mastication.

Thanks all for plundering through my post. I pray you all recieve the Grace of swift and complete healing!

~Bim

 

CivilMatt's picture
CivilMatt
Posts: 2920
Joined: May 2012

Bim,

Welcome to the H&N forum, you certainly sound qualified to be here and I am sorry about that.

To get maximum traction on your post you may want to start a new thread, these older threads tend to get past over.

I too had tongue cancer and required some surgery to remove the invader.  I healed up fine with no major issues to date.

The treatment for our type of cancer can be rough, but until you get into it and observe how your body will react it is anybody’s guess on the level of side effects.

I used magic mouth wash for most mouth discomfort and had a ready mix of salt and soda for swishing often.  Sleep has rarely been a problem for me, but the few times my brain was racing I took one Lorazapam to calm me down.

You may want to visit the Superthread for information, it is loaded.  It sounds like your team has a plan so now it is time to fight.  You can do this and come out the other side a happier healthier person.

Feel free to write as much as you want and ask questions.

Matt

donfoo's picture
donfoo
Posts: 1205
Joined: Dec 2012

Hi Bimmer,

Sorry you are here but glad you fonnd CSN as well. Lot of good information and lots of folks with real world experience. If they staged the cancer at 1, then it has not gone to other areas. If they are removing the tumor from the tongue for Stage 1, then there is a decent chance you will not need rads and chemo. They are going to check for clear margins and if they hvae good margins, that may be the extent of the treatment for now.

As to the discomfort, ask for meds to help with sleep and pain. In a way having a cancer badge gets you pretty fast and full access to the medicine cabinet. No reason to suffer and pain in fact hinders healing.

Do post new questions as new threads. Good luck, Don

phrannie51's picture
phrannie51
Posts: 3679
Joined: Mar 2012

I'm going to make you a thread all your own, so more people will see it and respond.  It will be located on the main page.  All of these old threads get skipped over.

p

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