head and neck cancer stage 4
Comments
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I had that too squamous carcinoma, both sidesstevelfun said:To everyone....
I too was 'stage IV'...
Interesting - I did research in every facet of my cancer 'journey'.
My cancer - was stage IV primarily due to the 'size' of the cancer in my tongue, base of tongue, throat. Each cancer within a certain 'group' is staged differently. For example, Head and Neck cancers are staged differently than lymphomas which are different than colon cancers, etc...
My heart goes out to you all (esp. EveryonesAngel and her husband).
I was 'fortunate' in that the cancer was in very few lymph nodes microscopicly. Basically, I am hopeful that it did not spread. It, so far, does not look like it has spread.
My PET scans came back looking good. However, a recent CT scan had some things on it they want to follow up on in 3 to 6 months. These things are things that they believe to be common problems with others that have been through my treatments and nothing to worry about. Scarring of the lungs from radiation, etc... The follow up scans will hopefully bear this out.
Again, my thoughts a prayers with all.
Keep the faith and hang tough.
Best,
Steve
I am a stage 4 tongueand neck cancer survivor
I went through three months chemo, two months radiation and a radical neck dissection.
The Chemo left me numb in my toes
The radiation left me burned in my mouth, top and bottom of tongue, damaged salivary glands requirng salogen three times a day
The surgery left my neck very stiff, as though in a cast. A year and three months later, the stiffness is finally going away and I am truly beginning to feel happy to be alive again.0 -
I had Radiation through the
I had Radiation through the summer.The doctors never really tell you how bad it will get.Head and neck is The Most painful treatment there is.The "losing your sense of taste" is not quite right.My sense of taste became corrupted.Anything I eat tastes like Chemicals.That is what I can get down, considering my gag reflex keeps me from swallowing many things.I have lost 60 lbs. and have become so weak and dizzy that so far I cant go back to work.The worst part of all is Social Security denies people, Cancer or not, getting disabillity.My doctor told me I had squamous cell carcenoma- well the people at Social Security sat thats not correct.Who do we have to listen to if not our doctors.I haave to stop now ,at any timeI crash and have to sleep, rest..0 -
Hi DavidZooDavid said:I had Radiation through the
I had Radiation through the summer.The doctors never really tell you how bad it will get.Head and neck is The Most painful treatment there is.The "losing your sense of taste" is not quite right.My sense of taste became corrupted.Anything I eat tastes like Chemicals.That is what I can get down, considering my gag reflex keeps me from swallowing many things.I have lost 60 lbs. and have become so weak and dizzy that so far I cant go back to work.The worst part of all is Social Security denies people, Cancer or not, getting disabillity.My doctor told me I had squamous cell carcenoma- well the people at Social Security sat thats not correct.Who do we have to listen to if not our doctors.I haave to stop now ,at any timeI crash and have to sleep, rest..
I guess if they told us all the bad parts of cancer many more people would opt out of treatments. We are left with few saliva glands and taste buds. In my case facial nerve damage and 1/2 a sinus that works. At least I can taste spicy foods or pizza with peppers. KFC is also ok with their spices. Social Security is rarely easy to get. Even with my doctors saying I could never work again under any conditions it took 18 months a lawyer and a congressman. And cancer did not disable me, my spine falling apart after all the radiation disabled me. I went though the whole system up to a federal judge who made a bench decision. They did back pay me from the original date my doctor put me off work. Its a frustrating system and getting harder all the time. If your never going to be able to work again then keep fighting. But I would get a lawyer as none of us really need all the added stress. Find one that knows what he is doing and will work on a percentage of the settlement if he wins. Best of luck slickwilly0 -
Eatingjesus gaspar said:Have you been able to eat yet! Had cancer at base of tongue
Does anyone know how long it will take for me to be able to eat and drink without the Peg Tube? My last radiation was on 31 May 2008. I do have my taste buds, but no saliva! I wonder If I lost my saliva glands?
Are you able to eat or drink without the peg tube??
I was gradually able to eat with lots of liquid. I found milk (non-fat) to be a great help in swallowing. At first I would choke, when eating meat (even a problem today). I could not eat any thing through the mouth for six months following the radiation and chemo. Softer food is better, even today after 4 years following treatment. The radiation treatments were close to my salva glands, hence I have NO saliva. I use "Oral Balance Dry Mouth Moisturizer" each night which helps. I always carry a bottle of water to sip. I've always had an allergy problem, and I firmly believe the chemo treatments added to my drainage problem. By now you should be eating and maybe even rid of the peg. While frustrating, the cure beats the alternative and lets face it, we are supposed to eat slowly - right?0 -
stage IV of base of tonguesoccerfreaks said:I don't blame you a bit (:)) for being worried. All it takes is an announcement of cancer and we pretty much go into shock, don't we? When you add that Stage IV diagnosis, it is like they turned up the amperage a bit, and rightfully so.
I am a head/neck cancer survivor, one who had a soreness on his tongue that lead to replacement of half the tongue with muscle and tissue from the left arm. That does not mean that this will happen to you.
Often, doctors examine what is happening and decide that they do not need to do all of that. I have met very few people who have gone that whole nine yards. Many times, radiation and/or chemotherapy are determined to be the best course of action, and they work a great deal of the time without major surgery, or doctors wouldn't recommend that course of action.
As alluded to by other respondents, head and neck cancer is NOT a death sentence, although it can be if you do not take it seriously, obviously. On the other hand, the Stage IV designation DOES mean more than tumor size, as I'm sure you've been advised.
In my case, I had the tumor on the tongue, and when they biopsied they found more in the lymph nodes in my neck. Sounds like you are in a similar boat. Mine was Stage III, perhaps because the tumor was just a tad smaller? Who knows? In any event, I OPTED for the removal, because I wanted to be rid of the stuff forever. Today, I am not so sure all of the time that this was the best answer, but most of the time, I am comfortable with it. You can read about my shenanigans on my web page on this site. It will save me (and the world) from listening to me again (:)) and might give you some idea of what may lie ahead.
For sure, you know that you can count on the people in here to provide support. You know, more importantly, that is a beatable thing. There are some challenges, but you are up for them.
I happen to enjoy life and consider the cancer to be an annoyance. It is a great annoyance at times, but an annoyance nonetheless. If I can live through mosquitoes in the summer, I can live through this as well.
You can too!
Take care,
Joe
Joe...I'm new to this website, just joined today...I'm so glad to finally find some other folks out there to chat with that have gone through this...I joined one other site last year when I was going through this, however they seemed to be somewhat clique-ish and I never really got going with them...I'm hoping this time will be different...I haven't written down my story yet...need to think that through so I don't just ramble on...but even though we all are facing similar ups and downs, we do all have a story to tell...I didn't read your blog yet, but do have a question...how long have you been dealing with this?...I have recovered well and lead a very active life, but I do feel that shadow hanging over me...it sure would be nice to find some long term survivors...that other site was mostly folks just going through this or caregivers dealing with the deaths of loved ones...pretty depressing...I'm hoping to meet other upbeat people who have gotten past all the whinging and wailing...not that we don't deserve to do that, but there is life after the big C...right?...hope you are having a terrific day...Katie0 -
Try Try AgainZooDavid said:I had Radiation through the
I had Radiation through the summer.The doctors never really tell you how bad it will get.Head and neck is The Most painful treatment there is.The "losing your sense of taste" is not quite right.My sense of taste became corrupted.Anything I eat tastes like Chemicals.That is what I can get down, considering my gag reflex keeps me from swallowing many things.I have lost 60 lbs. and have become so weak and dizzy that so far I cant go back to work.The worst part of all is Social Security denies people, Cancer or not, getting disabillity.My doctor told me I had squamous cell carcenoma- well the people at Social Security sat thats not correct.Who do we have to listen to if not our doctors.I haave to stop now ,at any timeI crash and have to sleep, rest..
Social "security" can and will deny most first time claims just in the hopes you will go away. If you feel like you honestly need it, keep trying, a good lawyer in the claims field is well worth the money spent on them. My ex and I went through this hell when she was in a major car crash and could no longer work, it took three years to get it approved.
BILL0 -
head and neckBugHunter said:First thing I would tell you......RELAX. This is what it is but staging in H&N cancer is tumor size related, not the instant death sentence you are fearing. My tumor was 6cm and wrapped around my carotid.(main was Rt tonsil). I had 8 weeks of chemo two weeks off followed by 6.5 weeks of chemo/radiation. I am 14 months post treatment and life is slowly getting back to "normal"
Hope all goes well, let us know!
BILL
My husband was a stage3 with a t4b which means his tumor was larger then 6cm ,8 cm at drs visit and 1 week later it was a 9cm but his dr told him if it had been wrapped around his carotid artery they would have closed him up and sent him home. Gee you were very lucky my husband lost his juguler and muscle 6.5 hours of surgery0 -
STAGE 4wboaz said:Well, my cancer was of the tonsil but I also had a large lymph gland tumor in the neck. I don't remember everything but here is part of an emailI sent a couple years back when the treatment was happening.
"In September I thought I was getting swollen glands in my neck with the germ-balls returning to school. After three weeks I hadn't gotten sick and the glands hadn't gone down. I went in to my PCP and he referred me to an Ear Nose Throat guy who didn't know what it was either but had a CT scan done and then a needle biopsy. Let me tell you, a needle stuck into your neck right next to your jugular vein isn't very comfortable. Anyway, the result wasn't positive for cancer but as I had a 4CM x 2.5 CM mass next to my carotid artery I was referred to a surgeon. The surgeon removed both my tonsils (the most pain ever in my life) and did a dissection of my left nect to remove the lymph glands there. I came back positive for Cancer of the Tonsil. While technicaly Stage 4 my prognosis is pretty good. The other way of classifying this was T-1,L-2,M-0 or 1 tumor and 2 lymph glands as positive.
Anyway, I am now going through radiation treatments to my neck and chest daily, chemo weekly and have had several other little procedures. The radiation has killed all of my taste buds (except some bitter) so everything tastes terrible. That plus my throat being very sore got me to go in and have a G-tube installed on Tuesday so that once the Home health care services folks feel like coming over and bringing me my food I will be able to feed foor and meds directly into my stomach without having to swallow."
My advise a couple years later. Go see your dentist and get a complete cleaning and any outstanding work completed. I haven't lost any teeth through this whole thing but many people do. Let everyone know that you want to save your teeth if possible. Also, get some flouride rinse from your dentist. The stuff they give you to rinse with after a cleaning. Rinse with it after every tooth brushing. Also, get the softest toothbrush you can find and some Biotene toothpaste and mouthwash.
Get your stomach tube put in as soon as possible. I waited until I was several weeks into the treatment as I thought I could swallow past any pain. Pain wasn't the problem, the terrible bitter taste that everything had made it impossible for me to eat food. I lost 20 pounds in 2 weeks.
The radiation will cause a lot of pain. Watch out about the Hydrocodone though, it has a lot of tylenol in it which can damage your liver. Once you start to get close to the maximum dose of 5 grams per day of tylenol ask to switch over to oxycodone (the liquid) you can inject it into your stomach tube and it works very well. It is very addictive though so be prepared to wean yourself off of it at the end (about a month after the radiation ends).
I hope this helps.
I hope you are doing well. God bless.0 -
Stage IV hereBugHunter said:Try Try Again
Social "security" can and will deny most first time claims just in the hopes you will go away. If you feel like you honestly need it, keep trying, a good lawyer in the claims field is well worth the money spent on them. My ex and I went through this hell when she was in a major car crash and could no longer work, it took three years to get it approved.
BILL
I was a stage 4 base of tongue (BOT) with one lymph node involved last July. The Doctor told my wife and I that the 3 cm. tumor they found would normaly be stage 3 but that because it was in the neck they bump it to 4. Here it is almost 9 months since my last treatment and things are going great. (33 rads and 3 chemo's) Everyone is different but these posts can give you an idea of what you are up against. Good luck and keep posting. All here are super and will help all they can.
Mike0 -
I note that most of the
I note that most of the suvivors here last posted in 2008. I dont mean to sound morbid, but please could wboaz, itybitty1 and others let us know on how they are doing a few years since the diagnosis. It might be useful and inspiring for the rest of us who have just begun this ordeal.0 -
WelcomeVS said:I note that most of the
I note that most of the suvivors here last posted in 2008. I dont mean to sound morbid, but please could wboaz, itybitty1 and others let us know on how they are doing a few years since the diagnosis. It might be useful and inspiring for the rest of us who have just begun this ordeal.
Hello,VS.
I have "seen" some of the posters here, but they post infrequently. Some others I have not seen post (that I can recall) in the past year and a half. That's not to say I think something unfortunate has happened. While we do have many long term survivors on this site (I myself am showing "no evidence of disease", but am a relative newbie to the clean scans club), many times someone will "need" to visit here for a time, and then will outgrow the need, and will leave the site behind them - so then we don't "see" them anymore. As you know, some people no longer post because they're no longer with us. I'd be willing to bet, though, that the majority of people who no longer post here have just moved on, and don't visit the site any more.
I'm sure that tomorrow, some of our longer-term survivors will say hello.0 -
The only reason that you arePam M said:Welcome
Hello,VS.
I have "seen" some of the posters here, but they post infrequently. Some others I have not seen post (that I can recall) in the past year and a half. That's not to say I think something unfortunate has happened. While we do have many long term survivors on this site (I myself am showing "no evidence of disease", but am a relative newbie to the clean scans club), many times someone will "need" to visit here for a time, and then will outgrow the need, and will leave the site behind them - so then we don't "see" them anymore. As you know, some people no longer post because they're no longer with us. I'd be willing to bet, though, that the majority of people who no longer post here have just moved on, and don't visit the site any more.
I'm sure that tomorrow, some of our longer-term survivors will say hello.
The only reason that you are noting most of the survivors that posted on that thread posted in 2008, is because you topped a thread from 2008. :)
I am thinking maybe you were looking up stage four related stuff?? In that case, there are many of us that were stage four that still regularly post. I don't know if itybitty and wboaz still visit, but it doesn't look like they posted much.
If you are wondering about stage four and about how long we have survived, there is a thread with that title. There is also one entitled January Rollcall, which we will also have coming up in July.
I will see if I can find them and post the links for you. There are a lot of long time survivors here. Even a handful of ten or more years!
HOW LONG WE HAVE SURVIVED
THE LAST ROLL CALL THREAD
I was stage 4 SCC unknown primary and I found my lump in October 2008. I ended radiation in 2009.0 -
Thanks Pam M andsweetblood22 said:The only reason that you are
The only reason that you are noting most of the survivors that posted on that thread posted in 2008, is because you topped a thread from 2008. :)
I am thinking maybe you were looking up stage four related stuff?? In that case, there are many of us that were stage four that still regularly post. I don't know if itybitty and wboaz still visit, but it doesn't look like they posted much.
If you are wondering about stage four and about how long we have survived, there is a thread with that title. There is also one entitled January Rollcall, which we will also have coming up in July.
I will see if I can find them and post the links for you. There are a lot of long time survivors here. Even a handful of ten or more years!
HOW LONG WE HAVE SURVIVED
THE LAST ROLL CALL THREAD
I was stage 4 SCC unknown primary and I found my lump in October 2008. I ended radiation in 2009.
Thanks Pam M and Sweetblood22!! I was indeed wondering about surviving Stage IV H&N. The threads you linked were very useful...0 -
First post
Hello. I haven't posted to this site yet but, after reading some of your stories, it dawned upon me that many of you wrote of your experiences and then stopped participating for one reason or another. This naturally worries people who are looking for people like themselves who are still around.
I was diagnosed with stage 4 squamous cell carcinoma in October of 08 and I am writing this in October of 2012. Of course none of us have exactly the same cancer or the same treatment or post treatment experiences. I did chemo and radiation. I finished treatment in March of 2009 and returned to my Social Work job in June of that year. I am still working full time and, while life is different, it is good. I would say that 60% of my taste is back, depending on the day. I don't have saliva issues anymore, at least nothing chewing a bit of bubble gum can't fix. Swallowing continues to be an issue. I did a barium swallow test and it showed that the muscles used to swallow we're weak from the radiation. I did some work with a speech therapist who used a machine with electrodes to stimulate my swallow. Kind of physical therapy for the throat. It did help but most of the foods I eat go through a blender and I eat a lot of smoothies. I haven't eaten a piece of pizza or a hamburger in 4 years. I could go on but the most important piece is that I am cancer free and really do not even think about it coming back. So those of you who are just starting this journey, know that it is curable and life goes on. I will be 62 next August and will retire from my full time job to work more on my private Mediation business. This move has nothing to do with cancer and a lot to do with what I had planned years before cancer tapped me on the shoulder. If I don't write on this site again it will be by choice not because cancer came back bad I kicked the bucket. Feel free to contact me via email: cristconsulting@comcast.net. God bless you all.0 -
First post
Hello. I haven't posted to this site yet but, after reading some of your stories, it dawned upon me that many of you wrote of your experiences and then stopped participating for one reason or another. This naturally worries people who are looking for people like themselves who are still around.
I was diagnosed with stage 4 squamous cell carcinoma in October of 08 and I am writing this in October of 2012. Of course none of us have exactly the same cancer or the same treatment or post treatment experiences. I did chemo and radiation. I finished treatment in March of 2009 and returned to my Social Work job in June of that year. I am still working full time and, while life is different, it is good. I would say that 60% of my taste is back, depending on the day. I don't have saliva issues anymore, at least nothing chewing a bit of bubble gum can't fix. Swallowing continues to be an issue. I did a barium swallow test and it showed that the muscles used to swallow we're weak from the radiation. I did some work with a speech therapist who used a machine with electrodes to stimulate my swallow. Kind of physical therapy for the throat. It did help but most of the foods I eat go through a blender and I eat a lot of smoothies. I haven't eaten a piece of pizza or a hamburger in 4 years. I could go on but the most important piece is that I am cancer free and really do not even think about it coming back. So those of you who are just starting this journey, know that it is curable and life goes on. I will be 62 next August and will retire from my full time job to work more on my private Mediation business. This move has nothing to do with cancer and a lot to do with what I had planned years before cancer tapped me on the shoulder. If I don't write on this site again it will be by choice not because cancer came back bad I kicked the bucket. Feel free to contact me via email: cristconsulting@comcast.net. God bless you all.0 -
Thanks for posting.....GACJLM said:First post
Hello. I haven't posted to this site yet but, after reading some of your stories, it dawned upon me that many of you wrote of your experiences and then stopped participating for one reason or another. This naturally worries people who are looking for people like themselves who are still around.
I was diagnosed with stage 4 squamous cell carcinoma in October of 08 and I am writing this in October of 2012. Of course none of us have exactly the same cancer or the same treatment or post treatment experiences. I did chemo and radiation. I finished treatment in March of 2009 and returned to my Social Work job in June of that year. I am still working full time and, while life is different, it is good. I would say that 60% of my taste is back, depending on the day. I don't have saliva issues anymore, at least nothing chewing a bit of bubble gum can't fix. Swallowing continues to be an issue. I did a barium swallow test and it showed that the muscles used to swallow we're weak from the radiation. I did some work with a speech therapist who used a machine with electrodes to stimulate my swallow. Kind of physical therapy for the throat. It did help but most of the foods I eat go through a blender and I eat a lot of smoothies. I haven't eaten a piece of pizza or a hamburger in 4 years. I could go on but the most important piece is that I am cancer free and really do not even think about it coming back. So those of you who are just starting this journey, know that it is curable and life goes on. I will be 62 next August and will retire from my full time job to work more on my private Mediation business. This move has nothing to do with cancer and a lot to do with what I had planned years before cancer tapped me on the shoulder. If I don't write on this site again it will be by choice not because cancer came back bad I kicked the bucket. Feel free to contact me via email: cristconsulting@comcast.net. God bless you all.
It's good to know that there are "old-timers" out there who beat this thing. I just finished treatment, and now and again, I get a case of the nerves about reoccurance.
I hope you stick around...there are new folks coming in every week, and we need survivors to keep us reminded that we are going to be ok.
p0 -
Been there, done that, still have the t-shirt!
Hey itybitty,
I'm almost exactly one year post-treatment as I write this. I was just reading your post saying to myself "yup...yup" as my diagnosis was similar to yours (also stage 4, by the way). Take a look at my profile to get an idea of what you might be looking at. I hope that it helps answer some questions, and I wish you all the best. Was your cancer HPV+? Mine was.I hope yours is as well because that type of cancer responds well to treatment.
Take care and good luck,
Paul0 -
TREATMENT PLAN
Well itybitty, there are many roads to Meca, and each patient's doc plans the trip. You may have surgery, radiation, and chemo, or some combination of those treatments, which are most commonlly utilized to deal with the beast. I imagine that your doc will get the ball rolling as soon as possible. The important thing for you to do is maintain a positive, "I can do this" attitude, and hit the ground runnig when treatment begins and continue both throughout the process. You will have lots of support here, and I trust that you have lots of support at home. I had stage 4, base of tongue in 2000, and I'm still here having fun and annoying my wife as much as possible. The watch words are patience, and persistence.
PATRICK0
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