I just found out I have cancer
Comments
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"Wait awhile eternity"
(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,
Joe0 -
Hello
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?0 -
Welcome
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
Jimbo0 -
First- Your a Survivor
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.
John0 -
cancer
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.0 -
Devastating news
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!0 -
Similar Situation
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.
Nifty0 -
Laryngeal caregiver
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.0 -
What everyone else here said...
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.
Deb0 -
mwellsg
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
kcass0 -
You've got youth and strengthKent Cass said:mwellsg
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
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.0 -
Good info and stories of HOPE.ratface said:You've got youth and strength
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.
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,
Kim0 -
Thanks Joesoccerfreaks said:"Wait awhile eternity"
(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
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 again0 -
Thanks PamPam M said:Hello
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?
Thanks for helping me see what's ahead. Yes, I'll see the doctor next week and start on down this road.0 -
Thanks JimboJimbo55 said:Welcome
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
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?0 -
Thanks Johnfisrpotpe said:First- Your a Survivor
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
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 afternoon0 -
Dudealtoman said:cancer
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.
Very cool. I like your attitude. First smile for me in a couple days0 -
Thank younifty said:Similar Situation
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
A lot. This helps all of you are great. I guess I found some new friends at least.0 -
Thanksbuzz99 said:Devastating news
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!
And all the best to buzz. Sounds like he is getting this done and has a great partner to do it with0 -
find strength from inside and out
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.0
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