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I just found out I have cancer

mwellsg
Posts: 66
Joined: Jan 2011

I learned about it over the phone. They say I have a suspicious lump at the back of my tongue but the cancer cells were found in my lymph nodes and they made that sound like its pretty bad. I have not told my wife or anyone else. I have no idea what the treatments are going to do to me. I have no idea if I can beat this or not. It's crazy. I'm strong, healthy, happy, active, a workout nut. I feel great. Went to the ENT because my lymph nodes were swollen and now this. And to boot I have to work. I don't have the luxury of taking time off to feel bad. I don't know you and you don't know me, but I sure could use some straight talk right now. I don't want fluffy you'll be OK stuff. I'd like to know what I am really up against.

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

(John Prine reference)

The fact that you work out and all of that seems to matter little to cancer, mw, as it seems to live on a tripod of behaviour/environment/genetics, and any combination of these seem to be able to put you among the rest of us, as frightening as it is.

The combination of the bump on your tongue (if malignant) and the already determined cancerous lymph nodes indicates that the cancer has perhaps travelled a bit, and this is clearly preferred less than discovering the cancer in one place and knowing that it has not moved. That is to say, they will probably discover a primary source of the cancer and then determine that it has metastizied (moved elsewhere).

The good news, it sounds like, is that they seemed to have found it early. My own head/neck cancer began with my announcement to doc that I had a bump on my tongue so sore I could not really eat. They found the typical lymph nodes, and subsequently I had a radical neck dissection (they cut your neck open to get to the lymph nodes, but it does not hurt, since you are sleeping through it), and, if they have to get to your tongue surgically, I am not qualified to say what they will do, but can tell you they opened the bottom half of my face and replaced part of my tongue. Others apparently simply have a part of the tongue removed.

These days, judging from this site, some people get by without surgery altogether, or have the neck surg without the tongue deal.

Otherwise, you might expect some chemotherapy and a rather harsh 35 or so days of radiation (harsh to me because I hated the mask, but in hindsight, the chemotherapy was worse, although that seems to be a very personal matter). You did say to cut out the fluff, correct?

YOu can definitely expect some pain, and even the pain of waiting, believe it or not.

We should write a caregiver's manual, but since I am not aware of one, let me say that you should have someone with you and that they should take notes for you (or tape or whatever), and that you have a list of questions each time you visit any doctor, and that you are sure to ask for any medical records created at any visit (most will provide for free unless you ask for them in bulk, wherein the fee can get hefty).

Take your pain meds as prescribed, remembering that pain mgmt is a critical part of healing and hoping to heal. It is pain, beyond anything, that puts quit in us, in my opinion.

Remember this, that your principal caregiver should take this to heart: to be a good caregiver, you have to take good care of yourself. Let her do this, insist that she do this.

Others will give you good, better, advice. I see that you are writing in the wee hours and are truly frightened.

I am a five year survivor of head/neck cancer, now NED: NO Evidence of Disease.

We THINK cancer means death, but it doesn't have to mean that. You will get advice from others about certain medications, about certain diets, about all sorts of things and there is certainly merit to some of them, but number one is to be with doctors you trust and to follow their advice and let them know of any changes you make to their regimens.

It's doable.

Hope and Humor!

Take care,

Joe

mwellsg
Posts: 66
Joined: Jan 2011

Your message helped me a lot. That's right, no fluff. I am happy for you that you beat this beast. I guess it's my turn. Thanks again

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Hi - Pam here. First, let me tell you there are lots of helpful people here. You'll hear from several. Very sorry you have cancer; glad you found this site. Fluffy "you'll be fine" pat on the head talk does get irritating, but your chances are much much better now than they used to be. Don't get me wrong; going through treatment is scary and painful. You'll go through physical and emotional turmoil at times. But it is doable. Especially since you're strong, active and "healthy".

October 2009 I got the word over the phone that the samples taken showed malignancies. Stage four base of tongue cancer with two lymph nodes involved. I started treatment the next month. Did induction chemo (high dose chemo for five days every 21 days for three cycles; followed that with chemo radiation (chemo once a week for seven weeks and radiation treatments Monday through Friday for those seven weeks). Follow up tests showed all my tumors but one were elimiated during treatment. Had a modified radical neck dissection last month to take care of the last cancerous lymph node (by removing all the lymph nodes on the right side of my neck).

I have had some lousy days, as a matter of fact. Mouth sores that prevented me from eating and ensured that most people couldn't understand a word I said. Mystery pains that made me think I was having a heart attack. A throat so damaged I could not eat, and could barely speak. A feeding tube inserted into my stomach that caused severe cramping, and by a minor mishap, caused me to wake up in a big puddle of blood (thank goodness, this doesn't normally happen to folks in treatment). A few trips to the ER, one ending up with me being hospitalized for nine days because my body was going through fevers that it couldn't cope with, and docs couldn't find a cause. Alternating constipation and diarrhea. Fear, frustration, confusion. The list does go on, but you get the drift. And I am definately one of the lucky ones. Most people have it harder during treatment than I did. It's hard. And it is totally doable.

I have had many good days during treatment, too - times when I felt mostly normal. Helpful people here on this website. Caring medical professionals at my treatment center and local hospital. Seeing progress during my recovery. Hearing the doctor say "the cancer is gone". Yeah.

Treatment is not fun, but you can make it through. Your doctors will be quick to help with any issues that may arise for you. If you have questions, you can feel free to come here, and get info from lots of great folks. this was helpful for me, especially at night, or during the weekend, when I had issues that I wouldn't consider "urgent", and my treatment center was closed.

Do well. Let us know how things go for you. Will you see your doctor next week?

mwellsg
Posts: 66
Joined: Jan 2011

Thanks for helping me see what's ahead. Yes, I'll see the doctor next week and start on down this road.

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

I had a similar experience, went to have swollen lymph nodes checked out. The diagnosis eventually came back base of tongue cancer stage 4, which means it had spread to some lymph nodes in my case. Like you and several others on this site, I was healthy and active and felt good prior to the diagnosis. Treatment was 35 rads (5days/week for 7 weeks) and 3 chemo injections spread over the same 7 weeks.

Treatment sucks and seems to take forever. You'll hear this over and over again, but reactions to the treatment varies among the individuals. Some people it kicks their butts and recovery is painfully slow. Others have it easier, much easier in a few cases. And still others fall somewhere in the middle. Why, no one can say for sure. We are not experts, but we can offer the benefit of our own personal experience. Once your diagnosis is complete and you have a treatment plan, there will be many folks offering advice on what worked best for them or not. I was one of the more fortunate ones, treatment wasn't too rough on me and recovery was fairly swift.

Nutrition is very important, especially later in treatment when it gets difficult/impossible to eat much of anything. It pays to start bulking up now. Food is medicine. Continue to stay as active as you can during treatment. There are studies that show a moderate amount of exercise during cancer treatment helps to lessen the severity of the side effects and also helps to combat the fatigue that will surely come. Moderate exercise was deemed to be a 25-30 minute walk every day.

As Joe said, your wife/caretaker will be indispensable, I owe my life to mine.

I was diagnosed this past May and finished treatment Aug 1. Today I feel great. The first post treatment CT scan was clean and am hoping the next scan in Feb is the same.

This will not be easy, but it is beatable. Cheers

Jimbo

mwellsg
Posts: 66
Joined: Jan 2011

Where can I learn about the nutrition side? I think I eat pretty well now, Protien and veggies mainly. But I heard about alkaline water and not eating meat, ... Do you know where I can go or will they help me this as part of the treatment. You sound a lot like me. Did you maintain your work schedule during the treatment?

fisrpotpe's picture
fisrpotpe
Posts: 1317
Joined: Aug 2010

First of all please share with your wife and family now, and I mean now. Getting cancer changes who your friends are and you family will always be there.

As of yesterday you are a survivor and will continue to be as long as you maintain a Positive Mental Attitude. I look for you to be here on site for many years to come.

I learned this thought many years ago, i use it daily/hourly and hope you do the same. What? So What! Now What?

What? you have cancer. So What, you have cancer and will survive. Now What..... what do I have to do to whip this sad sickness.

What is...

You need to be comfortable with your doctor and his experience.

do not depend on any doctor to tell everything he is only human, when you go to see him make a list and use it

I also suggest you never to to a doctor by self, bad news distracts you and you do not hear what you went there for. Actually I am a firm believer in that two others with..... wife and my best friend. Your best friend can take notes and encourage questions

As you learn more and go along with figuring out what your going to have to do, get to this site and ask the questions. There is huge experience and knowledge and caregiving like no other.

Please keep in mind that no matter what cancer you have or what treatments you will have to do everyone reacts to treatment differently and recovers differently. All our bodies are very different.

Keep a Positive Mental Attitude, Believe you will beat this and you will, Keep your faith no matter how bad it gets and never, never, never give up.

John

mwellsg
Posts: 66
Joined: Jan 2011

I'll try to start acting like a survivor now and I'm going to tell my wife when she gets home from work this afternoon

altoman's picture
altoman
Posts: 7
Joined: Oct 2009

First, you can beat it!

Second, tell your loved ones. They will be your caretakers. They will be your rock. You will need to lean on them. Do not go through this alone. I mean, don't keep it all in to yourself.

The wife and I cried once, in the beginning, and that was that. Since, especially myself, I attacked my cancer with HUMOR~!

1. Humor kept my spirits up high and
2. your medical team goes through this everyday and they need a good laugh! The more humor you spread with your caretakers the better the care you will receive. GURANTEED!

Nobody pays attention to the LUMP on the LOG. Don't whine! If you ACT like you're gonna beat the crap outta your cancer then your caretakers will act the same.

In the middle of radiation I had to do a second surgery. I didn't cry about it. I attacked it head on. It went cool-smooth!

Radiation and chemo will kill you about in the 3rd week. Let your caretakers take care of you. Be prepared to suck nutrients from a peg tube in your gut. It's painless and will keep your nutritional strength up.

This is war! Suit up! Arm yourself! And fight!

... and don't forget to laugh!

I'm over 3 years out. I'm still here. I'm still laughing. I struggle everyday. So what. So do many, many others.

Learn from your experience and be sure to tell your story. Someone after you will benefit from your experience. That's something worth living for.

mwellsg
Posts: 66
Joined: Jan 2011

Very cool. I like your attitude. First smile for me in a couple days

buzz99's picture
buzz99
Posts: 404
Joined: Sep 2010

First of all, I want you to know that I know exactly what you are feeling right now. Buzz (my hubby) was diagnosed with Stage IV BOT (base of tongue) cancer with 1 lymph node involved in August 2010. We (and I do mean "we") have come to the end of treatment with the last radiation/chemo due on Monday, just 2 days from now. It has been a long 4 months. Buzz had "induction" chemo consisting of TPF (Taxotere, Plantinol (cisplatin) and 5FU) given every 3 weeks. He received two out of the three planned cycles because cycles 1 and 2 put him in the hospital for a week each time. Then it was on to radiation and more chemo. The chemo, Erbutux, was a breeze in comparison. Few side effects (most people get a rash but Buzz has had just a few "bumps" on his face. Radiation was given 5 days per week for 33 treatments. For us the first part (induction) was the worst. Buzz has not had as much pain as we expected from the radiation. Nutrition is extremely important. Buzz had a stomach tube placed at the beginning of treatment. It has literally saved his life because he stopped eating after the first cycle of TPF (that is not typical). Most people have difficulty eating/swallowing from the radiation and those effects are greatly increased as you get to the end of the treatment. BTW when Buzz was orginally diagnosed, the ENT told us that surgery was our only option! We consulted with Mayo Clinic and decided to go the chemo/radiation route as the surgery is pretty extensive. The people on this site have been wonderful. Everyone has a story to share and the information/support I have received have been invaluable. You can get through this!

mwellsg
Posts: 66
Joined: Jan 2011

And all the best to buzz. Sounds like he is getting this done and has a great partner to do it with

nifty's picture
nifty
Posts: 12
Joined: Nov 2010

Hello and so sorry to hear your news. But glad you have posted something and are taking action. My father has a similar diagnosis to the one you describe, and to others on the site that have responded. Base of tongue tumor with spread to his nodes. He has 'stage 4' cancer and is 75. I have learned in the head and neck that stage 4 cancer is actually curable...that is they have success getting rid of it. My father is a wimp and has issues dealing with this and staying positive, but I wanted to note that his side effects so far have been very minimal compared to some of what I have read. He has no throat pain yet, and has not been nauseous from chemo. Mostly he has stomach / acid reflux and really has issues with taste. Nothing tastes good or right, which makes it hard to want to eat. Of course he is tired - but no mouth sores yet either. The Dr's are quite impressed.

He has 39 radiation treatments scheduled, he is just past 1/2 way. He has chemo one day a week for 7 weeks (cisplatin) - they did not do it three times with a major dose due to fear he would loose his hearing etc. This is the gold standard for treating this type of cancer / situation. You may hear something similar recommended. They are trying to shrink and remove the cancer, and if that doesn't work they will then consider surgery to remove any cancer in nodes etc.

Review sites like the mayo clinic and Penn University hospital in PA - they are doing some really neat progressive things with robotic surgery and such. Much less invasive. The point I was going to get to though is that treatments may not be as bad as you think - as long as you listen to the docs and take advice on eating, rinsing your mouth, and drinking lots.

Our doctors have communicated that beating cancer is physical, but very mental as well. Attitude makes a big difference. This is a crappy situation, but it can bring out the best in you and those that you love. You will see how strong you can be and maybe communicate to those that you love differently and in a more positive way.

Please keep us all posted on what you hear and next steps. Lots of luck and remember you are not a number or a statistic, you are a person who can fight this and win.

Nifty

mwellsg
Posts: 66
Joined: Jan 2011

A lot. This helps all of you are great. I guess I found some new friends at least.

mswijiknyc's picture
mswijiknyc
Posts: 421
Joined: Oct 2010

Everyone's story is different: how they found out, steps of treatment, etc. And I feel the biggest obstacle you will have is yourself.

My husband found out officially this September past. I say officially becuase he had trouble swallowing, hoarseness that grew increasingly severe, if he coughed too hard blood would come up, and a bump on the side of his neck that grew from a pea to a golf ball for months before. Gotta love how if you don't have good health coverage it kinda shortens your stick.

Patrick had surgery on October 1, 2010. He had a complete laryngectomy with a bilateral radical neck dissection. Before you go to Wikipedia let me simplify it - the surgeon opened up his neck, took out his windpipe, and all the lymph nodes in his neck, and put in a stoma which is a permanent hole at the base of his neck so he can breathe. He was diagnosed with stage 4b which means his cancer had gone beyond the original site, infected his lymph nodes, and caused the nodes to grow waaay bigger than it's supposed to. I'm not going to guess what stage you are, but know this:

Even stage 4b is DEFINITELY SOMETHING THAT CAN BE PUT IT CHECK.

(ok I'm from New York City I have other words, but I'll be polite :))

What soccerfreaks mentioned about a caregiver is 100% right. The only thing I would add is whoever your appointment/doctor buddy becomes please make sure they can be objective and put emotions aside. This is scary stuff so it's easy to become emotional. There were a few times I really wanted to break down in the doctor's office. But I can't be the best notetaker/information gatherer/advocate when I'm a gooey mess!!

There is a discussion here titled "Just Found Out." Go towards the bottom and read the post by bigfuzzydoug titled "Some thoughts I once posted for newly diagnosed "club members"" (http://csn.cancer.org/node/208072#comment-966715) I wish I had half of this info when he started going to the doctors - excellent!

Find a doctor you are comfortable with. If you don't trust and/or like the guy you're not going to listen to him. When a treatment plan is set up, follow through. This is being done for your benefit and for a good reason - to keep you here as long as possible. DO take your meds!! No one is easy to deal with when they are irritable with pain, and the caregiver's job is hard enough without dealing with a grouch. Doctors have your best interests at heart, but if you feel you are ready for something and they don't ask why. Or in hubby's case damn the torpedos full speed ahead. You know you - don't let anyone tell you different. Be vocal, be your own advocate, and let them know when something isn't right. It can only help you in the long run.

Since you wrote this in the dark, let me shed some light on the boogeyman:

An ex-boyfriend's dad in high school had laryngeal cancer. They gave him 6 months to live . . . in 1983. Last time I check he is still alive and well, still works 60 hours a week in an auto body shop, and is still a stubborn a******.

Everyone's story is different. Can't wait to hear yours. Keep us posted and we are here to hear. There isn't too much that shocks me anymore , but I speak for me.

D Lewis's picture
D Lewis
Posts: 1518
Joined: Jan 2010

MW
So very sorry to hear you have become a member of this club. I took a 3-cm swollen lymph node to my ENT who, after needle biopsies, surgical removal of the node, and surgical explorations and biopsies of my tonsils, tongue, and other mouth/nose/throat parts, found base of tongue cancer. MRI screens and PET-CT scans will be required to chase down any other locations that cancer cells may have gone. I had mets to lymph nodes in both sides of my neck, so they called that "Stage 4". Squamous cell carcinoma. Scary.

This is curable. I'm not talking "remission." Your oncologist's goal will be to cure this. This will consume your life for the next eight months or so. Then you will move on.

It took me a month to work my way through the two surgeries, a diagnostic MRI (no help) and a PET-CT (gold standard for tracking down cancer mets). Then I went to the Stanford Cancer Center for their Tumor Board (3-hour drive). Got a great doc. He prescribed a course of treatment, told me that it wasn't rocket science, and sent me back home to the foothills to be treated locally. I had no induction chemo. I got 8 weeks of daily IMRT radiation concurrently with three rounds of cisplatin chemo. When you get to that point, we can give you more detail on what to expect. It will seriously suck, although some folks take it harder and some take it easier. Some folks are even able to work during treatment, but those are few and far between.

Treatment will typically take a bit longer than you expect. I had delays and hiatuses in there. I took the 12-week medical leave that the law allows. I asked for an extension of a second 12 weeks and my employer allowed that. After the 24 weeks, I went back to work full time. Skinnier, with short, thin hair, a seriously tanned neck and an impaired ability to swallow, but I got back out there. Also, no spit, but that is a topic for another day...

I am seven months out now. Had a 3-month PET-CT that showed NED (no evidence of disease) and subsequent scopings and palpations have shown nothing abnormal. I see my doc roughly every six weeks. Ask your doctors to test your tumor for the presence of the HPV virus. Then, do an internet search, and read up on this. HPV is playing a tremendous role in the cause of head/neck cancers now. On the up side, HPV-derived cancers are very curable. I was quoted a 95% likelihood of cure. That was from Stanford, and from the current literature.

Welcome to the Michael Douglas club. He is HPV-positive also. Being older, and a lifetime smoker and drinker, he was quoted a 70% chance of cure. That is still good.

If you need more information from any one of us, enter us as "friends" on your CSN space amd send us a personal email via the CSN email function. We are all veritable wellsprings of information. We can go on about this sh** for hours.

Deb

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

What you're up against?
First: it's typical for it to show in the lymph nodes, so that's no big deal.

Second: it's too early to get over-anxious, but we all do when we are at your time in the C scenario. For me, it was the worst of times, but I wasn't here with the ACS, and I had no clue what was coming my way w/treatment. The unknown can be ominous, but most of us find that the degree of anxiety we experience was unwarranted.

Third: have you had a biopsy? The only way for them to know for certain is w/biopsy, which will also tell them what C you've got. You will need to go thru a Pet Scan/CT for them to see where-all the C is, also. Then, your Drs. will form a plan of attack with probable chemo and rads. 35 rad sessions is the standard, but you may get more or less. There are several different chemo regimes that are typical, so one would assume there will be several people, here, who will have gone thru what you will. Worst of it is if you get the rads at the same time you get the chemo, but even that will be manageable... This is C you have. C throws all medicine protocol out the window. You will be given full access to the pain meds you need, so don't worry about the physical pain that goes w/treatment- all you have to do is keep your Drs. informed on how you're doing... Many of us get both Ports and PEG feeding tubes installed- the Port is for medicine delivery by Pump, and the PEG is to bypass the mouth and swallowing problems of regular food intake- NUTRITION is a critical issue during treatment.

Fourth: if surgery is suggested, then it follows that it's to remove the Primary, and/or the C is so widespread that they don't want to wait for the C&R to slowly fight it. IF surgery is suggested, get the full scoop on what will be done, and consider getting a 2nd opinion at a major medical center with unquestionable credentials.

Fifth: this is H&N- we all survive the initial bout with C. 95% for 5-years seems to be typical. My NPC chemo delivery was unlike any others, here, and I was getting the rads at the same time, when possible. My very first Onco visit I was told about the PEG and Port, and another little thing- that I would be on Morph, which I was for 4 of 5 consecutive weeks. They knew where my delivery would take me, and it did. I only tell you this to highlight the fact that I was diagnosed in 11/08, treatment was 2-4/09, I returned to work a month after the last rad, and now life is back to pretty much the way it was before 11/08. You got a battle ahead of you, but YOU WILL SURVIVE it- so get used to it!

Believe

kcass

ratface's picture
ratface
Posts: 1231
Joined: Aug 2009

and I have the face of a rat! You've got a little time to make decisions. Slowwwwwww down some right now and think things through. Make informed decisions, rely on your family and friends for input.Find a world class hospital that treats this stuff everyday with the latest technology. Assemble a treatment team that you trust. Second opnions are routine, don't hesitate if you feel the least bit apprehensive about something. Tell the world you have cancer, the mailman and lady at the checkout counter. You will just feel better. Get professional help with the emotional side when needed and when people ask you if there is anything they can do to help start thinking about how they can help you with your work situation or whatever, fixing a leaky faucet? Keep asking questions. See you on the board.

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

So sorry you have had to search engine Head and Neck cancer. So glad you found this site. I am the caretaker of the fellow in the picture, taken 1 month post treatment for Squamous Cell Carcinom of the left tonsil, Stage IV, HPV+. I am the one who used this site, and I can honestly say the people here were my life line. So not only do you need the support of a good caretaker, your caretaker will need support too. Encourage him/her to use these boards. It is better than a support group in that it is 24/7 and literally world wide.
Those who have posted before me offer valuable advice, and you do not need to read it twice. But I do want to echo what Ratface said about the best doc and the best hospital. Mark was diagnosed by a local ENT who does kids tonsils and, I guess, treats cancer. He wanted Mark to be treated by him. It was me (Mark was in his own tailspin) who said you are getting evaluated at a NCI (National Cancer Institute)hospital (we have 3 in Philly); we're going for the BEST. Ended up with an ENT surgeon who does this stuff every day and is cutting edge in some surgery technology. That led us to a fantastic radiologist and oncologist. The local guy and hospital would have been convienient...we had to travel a little further for the big hospital and expert doctors. My advice at this stage, is get the best...even if it means driving further.
Some additional thoughts, stay off the internet for information. It is general statistics that are not relevent to you. Only your diagnosis is relevent to you. Find out if you are HPV+. This is a growing trend and you will see discussions here about it, because the medical community is learning more and more about it all the time. The significance to you is that HPV+ cancers tend to respond VERY well to treatment. You will need to not only keep your body nourished during this time, but hydrated as well. Some nutritional advice Mark got early on was "drink calories". When you put fluids in your body make sure there are some calories in it...you need them from where ever you can get them.
Mark had dramatic surgery, radiation and chemo. Ended treatment in July. He is approaching 6 months post treatment. He is working, eating, skiing and loving all who are around him. His 3 month PET was clean and has his next in Feb.
Get your bearings, dig in, face it one day at a time. The word you will here again and again is DOABLE. Time will move slowly...but the days do pass.
Stay here with all the knowledge and experience that come from these folks. You will get solid information and you will be led through this journey buy all the stories that sustain HOPE.
Best,
Kim

npcsurvivor
Posts: 21
Joined: Nov 2009

i'm a 1.5 year stage 2 NPC survivor. for me the best part of fighting cancer was the support i got from family and friends. fighting cancer is not easy and most of us can't handle it by themselves. so first thing you need to do is find support. fortunately there is plenty of it available thru family, friends, colleagues, churches, local support centers (check with local cancer hospitals), online forums, etc. in my fight, i didn't need a caregiver per say but i definitely needed moral support from friends and family and informational support from my hospital (nutritionist) and online forums. second thing that was important for me was to get a second opinion. i went to two reknowned hospitals in my area and chose the one that had an advanced radition machine for cyberknife therapy.

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Welcome to the club. Sorry you had to join. I had SCC stage IV unknown primary. I had a neck dissction, two years ago tomorrow. They took 23 lymph nodes and my left salivary gland. I had 30 radiation treatments but no chemo because I am also a Fanconi Anemia patient and chemo is not an option. I worked up until the day before my surgery, but I have not worked since. Radiation really knocked me on my ass. I am glad I changed my mind and had a PEG tube placed because I needed it. My mouth was a wreck. My side effects hit hard and fast and were pretty unrelenting. I used my tube thru rads and kept my exact weight all thru but all hell broke loose after rads stopped and my side effects peaked. I couldn't keep any of the nutrition down and I lost forty pounds pretty quickly and was down to 87 lbs. I finally was put on a feeding pump over night which put the nutren in very slowly and that allowed me to gain a little weight and feel a little better. Nutrition is a major factor. As I said, I wasn't going to get a PEG even tho every doc I came in contact with told me I should. Especially because I was only 125 pounds to start out. I read a lot and came across the information that a lot of HNC patients die of malnutrition. That scared me. So I asked for a nutritionist on my team at the hospital, and went ahead with the peg placement.

Between my neck dissection and rads I went for two more opinions. During this time they told me to try to put more meat on my bones just in case I was going to do the radiation. I found it's just as hard to gain weight as lose it. :) I also bought a juicer and juiced twice a day and worked on eating foods to boost my immune system. (like dr oz's green smoothies, tons of orange,apple, cucumber, and high antioxident juice mixes). I took a liquid multivitamin and a liquid immune booster right in my juice. Knowing what I know now, I would ja d added L-Glutamine to that mix. (I didn't find this site until after treatment, sadly). If you do take supplements you must tell your RO and your Onc because they usually don't want you to take certain supplements thru treatment.

Scambuster is also a member on this site and he practices Traditional Chinese Medicine and is quite knowledgable with vitamins, supplements and TCM. I always stress that you must run things through your doctor first. I just take a multi vitamin, immune booster, glutamin and I eat a lot of veggies, whole grains, some fruits (they still burn my mouth badly), I do dairy, but no meats really because I have a stricture from radiation damage and I cannot swallow meats. My diet is still pretty high in fats tho because I am only 100 lbs and have trouble eating and gaining weight still. I am making progress and I was able to get rid of my peg after 18 months. I definitely feel nutrition is key and I would ask for a nutrtionist on my team.

As you can see there are many of us that are still here. We've made it thru treatment. I wish you the best.

Sweets

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

You where told over the phone, I was told by a laughing physicin, die or take the treatments, I never knew I had cancer, till that day and was tramatized, One of the nurses in the office was nice to sit me down, and reassure me it would be ok....stay positive, you don't know what's going to happen. Eat as much as you can and gain the extra pounds, Sweetblood is write, this is the thinkg that probably saved me, i gained 20-lbs, and glad i did after losing 60, I have gained only 1o back since a year ago, The malts and enssure are great, but my stomach shrank in 2 weeks of not eating, it went out as fast as i drank 3 of them....EAT proteins, and anything carbs, pack it on!.....Best to you, and we are all here...Take Care. Dennis

JUDYV5's picture
JUDYV5
Posts: 392
Joined: Jun 2010

There is nothing fluffy about your diagnosis. Being in shape isn't always a good thing when dealing with cancer. The ent who gave me my intial diagnoisis was concerned that I was in shape, because I didn't have any excess pounds to lose. He also painted a pretty ugly picture about the treatment ending with I probably would survive. He was right about everything. Find a doctor in a facility that has a record for treating your kind of cancer. Experience is everything. I also made sure that the doctor and hospital I picked were a perfered provider in my insurance network. You need to tell people. I was throughly amazed how supportive people are. I had friends bringing meals to my house 3 times a week. I had friends drive me to my daily radiation treatments. The kindness and prayers of others really helped me through some difficult times. Everyone handles treatment differenly, but everyone describes it as hard. I was knocked on my a**. "feel bad" doesn't even describe it. Now 7 months after treatment I am happy with the new me. I am back at work, but more important back at life. I saw my Doctors on Wednesday and they seem very impressed with their work.
I got my first NED in July. Attitude is everythig. - Judy

hawk711's picture
hawk711
Posts: 525
Joined: Jan 2010

Well first of all let me tell you that it is NOT YOUR FAULT. I asked my doctor what caused my tongue cancer with lymph nodes also and he simply said " bad Luck ". So I took it as that and you should too. Now, get on to kicking cancers ass. You can do this! We all have done it and/or are going through it. This is the spot where you can get help, answers, *****, etc. We all offer our personal e-mail or even phone number if needed. I am in Northern CA and we have survivors spread all over the country, so just ask and you'll get our support.
Talk to your wife and ask for her help, you'll need help as we all did. It ain't easy, but this cancer can and is cured.
I hope I haven't rambled but this site gave me hope and all the wonderful people here, John, Judy,Joe, Pam, Jimbo,Deb, K Cass,Kim and of course Sweetblood gave me strength and advice and support. More than they know. So, keep in touch, get answers, start treatment and begin what we all call, "The New Normal". Life is still good and it will be better after this ends for you with a successful treatment.
All the best,
Steve
P>S> I just found out last week that I am now NED,(no evidence of disease) on my last PET scan. I am 9 months out of treatment and still healing but I am now NED and that is the most important step for me. felt like a 100 lb weight was lifted off my back.
All these words, like NED, PET, PEG, etc, will become second nature to you. You will know more than you ever wanted to know about H & N cancer and in the future you can help someone else with your stories and experiences....Good Luck to you.

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

And congratulations re the most important of those acronyms: NED!

:)

Take a little time for the happy dance, dude.

Take care,

Joe

hawk711's picture
hawk711
Posts: 525
Joined: Jan 2010

Joe
Right on. I danced all the way home once I got the monkey off my back. NED is a good thing.

Keeping up all the good posts,
Steve

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

Congratulations on the NED report, a great way to start the New Year

mwellsg
Posts: 66
Joined: Jan 2011

it's settling in now. getting ready for the journey. good folks out here.

JUDYV5's picture
JUDYV5
Posts: 392
Joined: Jun 2010

That first NED is the best.- Judy

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Hawk,
Never get tired of seeing "NED". Wonderful.

adventurebob's picture
adventurebob
Posts: 690
Joined: Jun 2010

First; you can slow everything down at any time. There is most likely not a big rush to get started with treatment. And; you should receive formal, in person 2nd and 3rd opinions before scheduling a start date with the doc you choose.Do not let the medical professionals control the pace at which you move through this. If it is not on your personal schedule, it has not been officially scheduled. This will help prevent getting too overwhelmed. Slow it down at any time. Take days off if needed.
2nd; being in shape is a huge benefit right now. Do not let that go. It will minimize the side-effects and increase your recovery time. If nutrition is a large part of that already do what you can to improve on it. If nutrition is not a huge part yet; start immediately. Whatever it has been it will most likely need to be somewhat different. A good book would be helpful. I recommend "Anti-cancer", "Beating cancer with Nutrition", "Foods to fight cancer", "Healing the Gerson Way" and "The China Study. Lots of unnecessary controversary around how important diet and nutrition are so some research is really important.
Treatment for most head and neck cancers seems to be surgical removals and chemo and radiation. All three are difficult and painful and the medical system is antiquated and less efficient and patient centered than it could be, making it even more difficult and painful sometimes. It helps to start off with an attitude of "I am the one responsible for making sure everything happens the way it is supposed to". And then actually just taking charge of everything and knowing all the ins and outs. A good caretaker can help tremendously with this. Allowing them to be an extension of you really helps. Decide who you will trust and trust them.
If you ever were to take time off from work this would be the time. Not sure what options you have but now would be the time to exercise them as cancer is a full time job. The more time you can devote to fighting and healing and recovering the better your chances. Whatever your cancer, the more you can do to stack the deck in your favor and keep it stacked, the greater your chances of survival. Your doctors will generally administer medicine to you an hour or so each day. The other 23 are up to you. The biggest part is yours. This is the battle for your life. All your resources should be tapped for this.
Let the days focus be on the day. Try not to get too far ahead and when you do come back as fast as you can. Get through each day. Get through today.
Stay here with us. This is the number one place on the internet for "real" info about what you're going through. Ask any question. Tell us anything you need to. We're all here for you.
Gather your strength. Be brave. Pray.
Kick ass!

Bob

mwellsg
Posts: 66
Joined: Jan 2011

great approach to this. thanks. and thanks for the leads on the nutrition stuff. i'll get a book and get started.

ekdennie's picture
ekdennie
Posts: 231
Joined: Aug 2010

here are some basic facts...no flowery stuff

1. find out what type of tumor it is, what stage, what grade, etc.
2. ask what are the best treatment options
3. if you don't like anything your doctor says (other than that you have cancer) get a second opinion
4. if you need surgery, radiation, chemo, or a combo of them, ask in what order you should have it for the bet results.
5. tell your wife...she will know something is up...she will need to be able to take care of you when you have a bad day...and you will have them.
6. what kind of work do you do? depending on the treatment type you may have to take some time off...others can work through the whole time. it isn't about feeling bad, it may be that you just don't' have the strength some days to get out of bed...but your mental attitude can make those days rare!
7. workout as much as you can throughout the whole process...it will keep your heart healthy, which will help your body heal from the treatments faster.
8. see a therapist the moment you feel sad, anxious, depressed...it happens to most head and neck patients
9.treatments vary. I had surgery and radiation. no one can see my scars...they are inside my nose and the roof of my mouth (my tumor was on my hard palate). I have to wear a prosthetic to cover the hole, but with it in, no one can tell. I have some redness on my face, but with the heavy application of lotions before, during, and after radiation they are minimal. I had huge sores throughout my mouth, but with pain meds and oral rinses they were not as painful as they could have been...for me they were like a mouth and throat full of canker sores. I have also lost some hair, but it is behind my ears, so I wear my hair down when I care if people will notice, otherwise I still wear it in ponytails.
10. you will have bad days, you will have good days. that is just how it goes. you can either worry about what might happen or address those things you can take care of. I chose and still choose to change/ deal with those things I can. I worked out and did as much activity as possible before I began treatments. I made myself get out of bed to send my oldest to school every morning (he was 4 and going to pre-k). I couldn't drive him, but I could wave goodbye, then go back to bed. when it was time to rest, I slept for more time than I did before so that I could keep doing those things that were important to me and my family. I am out of treatment and waiting to see what the ENT says at my next appointment...I am sure I am cancer-free, but until that first scan I can choose to worry about it or I can do the projects I had to put on hold while I was recovering...I am doing my projects.

I know you don't want the fluffy stuff, but I am young (31) and I am going to give you a little. what I wish for you: doctors with skilled hands (if you need surgery), with the right medications (if you need them) to take away you pain or to kill the cancer, with a game plan that will work so that you can be cancer-free one day. wishing for you the anger to fight, the peace to love your family while you fight, and the wisdom to seek help when you need it the most. Oh, and because everyone who has been told they have cancer (my dr told me over the phone, too) A GIANT HUG.

mwellsg
Posts: 66
Joined: Jan 2011

wow. a pathway. great advice and it is much appreciated

krl4044
Posts: 1
Joined: Jul 2011

I literally just found out. It has been 18 hours. I too have kids. When my oral surgeon started dithering, I knew it wasn't going to be good, so I am off to PET SCAN with a girlfriend this afternoon. You are inspiring. My kids are 12, 14, and 16 and my husband died 12 years ago. I am a Nurse practitioner and have practiced 32 years in Nursing. I am having a hard time focusing on the trivial, and I think my money issues (lousy jobs, not working as much as I need to) haven't helped my immune system. My significant other is my dentist who said watch and wait and I have gotta let go of my anger at him but its hard.
I am a biker (bicycle) mama, a gardener, a music lover, and a connoisseur of fine mountain hikes. I gotta focus on these things to get through. I am 55 but we are both moms and you are very inspiring.
Marge

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Just wanted to welcome you to CSN, though I am very sorry that you have the need to be here. There are many amazing survivors who have helped me in so many ways, so I encourage you to read and share in the information and support here.

Wishing you well,

Sweetblood

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

Sorry that you are in a situation to have found us, be we are many and here for you...tons of great people and huge experience base.

It is devasting at first, perfectl normal to go through the gamet of emotions...

I too was 55 in January 2009, when I heard those words.

Tonsil (primary) Cancer STGIII SCC HPV+ and a lymphnode (secondary)...

Nine weeks chemo (three week cycles)
Cisplatin
Taxotere
5FU

Concurrent chemo/rads
Carboplatin - seven weekly
Amifostine - 35 daily
Radiation - 35 daily

So far all scans have been clear and clean....

Start a new post and introduce yourself....

Thoughts and Prayers,
John

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

We are all afraid when we first find out we have cancer, and we fear for the unknown future of our family. A lot of what happens to you will depend on your doctors and your attitude. Doctors can do wonderful things in helping us treat the cancer, but keeping a positive attitude is what they need us to do. You will need help from your family, your wife and your friends, you see when you have cancer it affects everyone around you as well. Listen to your care team and don’t be afraid to ask questions if you don’t understand something about your treatment.

Remember this Cancer is cured everyday and many of us stay here on CSN just to help people like you who are just getting started, you will do well my friend just keep positive and enlist the help and support of your wife and family.

Hondo

Ron49's picture
Ron49
Posts: 91
Joined: Dec 2010

Hi MW,

I am so sorry to hear you have recently been diagnosed however as I was told by so many you are so fortunate to have found this site and already can see you have met some of the best and most knowledgeable people. I also was recently told over the phone that I had scc after a biopsy was done on a swollen lymph gland on my neck. That was on Dec 10 and I had surgery to remove the left lymph gland and my tonsils last Monday January 3rd. Today I learned the tonsils were negative and will have a PET done soon. My wife and I have been nearly paralyzed with fear for the last month and the only straight talk I have had is from here when I posted the "JUST FOUND OUT". Listen to the advice and the words of encouragement shared here. Also I have found the chat room helps to remove some of mine or my wifes anxiety if we have a particular concern. Everyone here is like an on line supplemental care giver and we have found everyone gives great advice. I wish you only the best in your treatment and will be praying for you and your family.
Ron & Robyn

mwellsg
Posts: 66
Joined: Jan 2011

at 2am the other morning, i though i was going to explode. somehow i found this site and it is a godsend. people helping people from real world experience beats text book stuff every day, hands down. sounds like you and i are on similar journeys and you are up ahead on the path. all the best and if it's ok, i'm going to hang back here and watch a bit. mike

abbimom's picture
abbimom
Posts: 81
Joined: Sep 2010

I was diagnosed 10 years ago when I was 21 years old in college. I had a lump on the side of my tongue near the back and it spread to the lymphnodes in my neck. I was stage 4 and they told my mom they thought I would live 2 years. they were wrong. I'm still here after 10 years. No matter what the doctors prognosis is stay strong and positive. The treatments are not fun and you will most likely feel miserable just being honest. I had a 1/4 of my tongue taken off and a neck dissection. Then I had radiation and chemo. I'm so sorry you have to go through this and you have a lot of support with this site. I just tried to stay positive and take things one at a time and just get through it. One positive is that treatments are better now and everyone reacts to the treatments differently. My big thing is to talk to a dentist about your teeth because radiation really screws them up. Also magic mouthwash which is a combination of medicines helps your mouth during the treatments. Take care of your teeth and do whatever exercises they give to you. Good luck to you and your family and best wishes.
Linda

kingcole42005's picture
kingcole42005
Posts: 177
Joined: Oct 2010

Hi Mw, Welcome this site is wonderful beyond words. The people here are kind and generous and will offer you tons of support. I have a different kind of cancer than yours, floor of mouth, and none in my nodes. I know that there are alot of people here that have been and are in a similar situation as you. I do know that treatment is rough, but if I can make it anyone can. I absolutely despise going for my 6 month treatments at the dentist, let alone a cavity or crown. Then I get oral cancer! I am just finishing up my last radiation treatment I had 30 dropped down from 33. I have two left. Radiation is very hard, especially for head and neck patients so be prepared and take ALL the advice given from people here when you start. I sure did and it helped me immensely. So I wish you all the best. Your going to beat the crap out of this cancer!!! Shelly

rozaroo
Posts: 667
Joined: Apr 2010

I was diagnosed with stage 4b cancer of the toncil Dec 15 2009. Had 35 radiation treatment's
& 3 cisplatin chemo. Had peg tube put in asap & did not use it till end of radtation. Never
lost any weigh & once I found out I started eating for dear life. I actually gained 30 lbs.
Had a hard time keeping feeding's down at first, but hubby kept pushing the food down my tube. My cancer centre gave me a huge helpfull binder which I added more paper too. I kept a daily journal of when I took my med's feeding's & appointment's. Believe me it so helps to
be organized during treatment. Make sure to drink water etc even small sip's. You must do that to keep your swallow & so you do not dehydrate which I did once. I have had scopes done
every two month's & one cat scan which turned out great. Next week is my first pet/cat scan
so we will see how it go's from there. I wish you great success through your treatment & recovery. Remember we are all here to offer support through goodtimes & bad.
God Bless
Roz

mwellsg
Posts: 66
Joined: Jan 2011

Sounds like you are exactly one year ahead of me. Beat it and I'll follow you over the goal line. I had so hoped to see the doc today and get started but we have an ice storm in Atlanta so here I sit waiting. I started reading Anti-cancer. Great book. It's better when you kind of understand how this beast works. Ready to go and kind of stuck, but like one of the other guys said, maybe it's better to slow it down a bit. I know I feel better mentally. Accepting it, getting ready for the journey. All you guys are great and I am so happy I found this group. I'm sure I have only started to lean on you guys.

BrianKrashpad's picture
BrianKrashpad
Posts: 188
Joined: Jan 2011

It's hard but your docs should map out a plan for you and let you know your options, etc. Obviously what you'll be doing treatment wise will determine what you'll have to deal with.

I'm right in the middle of treatment now. Mine was discovered sorta in reverse order from usual, I think. Had a lump on my neck. The docs had said there was only a tiny chance of it being cancerous since I don't smoke, and they did a needle biopsy that came back clean, so I took my time getting what I thought was just a cyst taken out. Had a batch of gigs w/various bands and things at church in October, so I had surgery in Nov., week before Thanksgiving, when they discovered it was cancer. So they took out the tonsil and those 2 nodes and an additional 18 more.

They believe they got everything, and it was very localized, so prognosis is quite good, especially since I'm otherwise fairly healthy. BUT, just to be safe I'm doing daily radiation (M-F) and once a week chemo. Having all kinds of crazy side effects, lost sense of taste, no beard growth on left side where the zapper is shooting me, raw mouth inside on left side, chemo hiccups for a couple days a week following my magic kool-ade IV, etc. Also lost about 15 pounds, which is actually a good thing (I was overweight), so long as I don't get anemic.

Saw both my chemo and radiation docs today and everything is looking good so far. About halfway done!

Also, I have a very bosstastic neck scar like Clint in "Hang 'em High" now! ;)

So, it ain't all pretty. But frankly if I can get through it I bet anybody can. I really think a good attitude is very important. Honestly I find if I laugh at it, it has no power over me.

Be well!

mwellsg
Posts: 66
Joined: Jan 2011

Thanks. I start next week. Find out what i have and what I have to do. I like your laid back attitude. I will do my best to emulate it.

connieprice1's picture
connieprice1
Posts: 290
Joined: Oct 2010

It sounds like you have Base of Tongue cancer as your primary that has spread to a couple of lymph nodes in your neck. It is probably squamous cell carcinoma, the good news is it can be treated. The first thing you need to do is line up your treatment with a good cancer treatment center. My wife is being treated at MD Anderson Cancer Treatment Center in Houston, Tx. and this hospital may be the best treatment center in the world for cancer. You will be doing chemotherapy followed by radiation treatments more than likely. My wife's lymph nodes in her neck swoll to the size of a golf ball and the tumor was getting a head on it so it could break through the skin. I remember how anxious we were to have the tumor in her neck removed by surgery because it had become so large and how sick we were to find out that their would be no surgery. She was prescribed 9 weeks of chemo in 3 week segments. She would do induction chemo the 1st week ( Cisplatin, Doxitacel, Cetuximab followed by 96 hours of 5FU with an infusion pump) the 2nd week she did only 1 IV of Cetuximab and the 3rd week she did nothing. After her 1st treatment the swollen lymph nodes shrunk to almost normal and after the 2nd treatment they were back to normal size. She was not able to do her 3rd treatment due to side effects causing her colen to become severely inflamed. This past week she had another CT scan and the tumors were no longer present on the scan so she is starting radiation treatments at the end of this month. She will be doing radiation treatments 5 times a week for 7 weeks to make sure their are no more cancerous cells. I hope this info helps you understand more about your probable treatments, remember I am not a doctor and of course your doctor will prescribe your treatments. As for working, you may be able to work through some of your treatments and it is good that you are in good physical shape. I hope this helps and goodluck to you. Connie's husband, Homer Price

mwellsg
Posts: 66
Joined: Jan 2011

...your wife received is pretty close to what they are recommending at NE Georgia Cancer Treatment Center. Good to see someone else on the same path. All the best to your wife and to you.

Sue22's picture
Sue22
Posts: 99
Joined: Nov 2011

I'd say ''like'' (facebook) to all of your answers to help out MW. You people are awesome and sooooo honest....in order to help out the most you can.

MW you are in good hands and I wish you all the luck in the world.

Sue

Paintslinger's picture
Paintslinger
Posts: 70
Joined: Jun 2012

I developed a large lump on my neck last year. It was diagnosed as a brachial cleft cyst (google it for pictures if you want to). A biopsy was done and there was no cancer in the fluid in the cyst. The docs told me that I was fine but it (the cyst) should come out. It was removed last July and--low and behold--they found cancer in the base of it where the needle couldn't reach. The pathologists were shocked because nothing indicated cancer.I, too, was as healthy as a horse (and strikingly handsome: NOT :)!) In fact, the docs told me that several pathologists were called in to look at the samples because they didn't believe there was cancer. It was HPV positive squamous cell carcinoma but they didn't know where it was coming from. Turns out that the PET scan showed a tumor at the base of my tongue that had metastisised (stage four) into a lymph node in my neck. If that "cyst" (actually a very enlarged lymph node) had not shown up, I would never have known about the cancer.
I subsequently underwent a seven week treatment involving chemo and radiation which I finished in October. I had my first post-treatment PET scan in April and I'm cancer-free (for now). I'm not going to sugar coat this. The treatment you're probably going to get is rough, but you'll make it through it. If you want specifics and advice about what you might be about to go through, I'll be more than happy to provide both (although everyone's reaction to treatment is different). You're more than welcome to e-mail me and get my number and we can talk if it might help.Be grateful that you found this site when you did, there are some very, very good people here. Hopefully you've got a good support group of family and friends (I certainly did); you're probably going to need them. A sense of humor helps too. An irreverent sense of humor is even better!
Take care,
Paul (Paintslinger)

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