I am a male, 57 years old and in pretty good health (@ YMCA for aerobic & weights or yoga average 5 X a week). On Friday, May 31st, I found a lump in my neck, which a doctor dismissed as a blacked salivary gland. She told me to call on Monday to make an appointment to see an ENT if it was still bothering me.
So far, it was only bothering my vanity-- no pain as yet. But on Monday I made the call, and was told I could be seen in one week, (June 9th). When I did see my ENT, he had a "hair on fire" reaction, saying "When we see a guy in his late fifties with a lump in his neck, we pay attention."
A biopsy confirmed Squamous Cell Carcinoma, and then later placed its origin as HPV p16, currently Stage 3 N.
Now I am having a surgical biopsy tomorrow, as the PETscan revealed a tumor at the base of the tongue. My ENT had said some of these cancers, when identified as one source tumor, can lead to a surgical removal and a "watch and wait" approach with no chemo or radiation. But, when we got the results, after a meeting with a radiation oncologist, the plan is radiation and chemo for a schedule of 7 weeks. This doc seemed eager to yank teeth, but a full set of X-rays revealed no problems, so that's a relief.
Same doc (the radiation oncologist) referred to the eating tube as something they sometimes have to use later in treatment, but something he might want to do prophylactically, weeks in advance.
That's depressing, as that might lead to more inactivity (no yoga & limited workouts), though I understand I won't want to work out on many days).
One would hope that by working hard to stay fitter than 85% of my peers might make me a candidate for no eating tube, but maybe it just doesn't work that way.
Also, of course, I will be meeting with a speech and swallow therapist, and if we put the tube into my stomach that would seem to work against regular swallowing. Perhaps it is just necessary sometimes, and difficult or impossible to perform the procedure when you are really chemo-sick.
Any info about these concerns would be helpful.
Thanks,
JD
Welcome to OCF! You have found the best source for info and support to help get you thru your upcoming battle. Stick with us and we will help you every step of the way.
Many patients who are seemingly healthy are diagnosed with HPV related OC. Its not uncommon for there to be few if any symptoms.
There are so many appointments and tests to do before starting treatments. You mentioned already seeing your dentist. Did they take molds of your teeth to make flouride trays? If not get that taken care of prior to starting rads. You also should have a full blood work up including thyroid and testosterone counts.
Even if you would end up with a feeding tube, you still will want to swallow at least water several times per day to keep your swallowing muscles active. Believe it or not they can quickly forget when not being used daily.
Your intake must become your main priority starting right now until at the very least you hit your one year post rads anniversary. Every single day you should be taking in a minimum of 2500 calories and 48-64 oz of water. If you lead an active lifestyle and are working out you would need more, maybe even 3500 calories daily. No it is NOT too much! Your body is compromised at this time so it burns calories at an incredible rate. During recovery you will need to rebuild your body so it needs extra calories to do so. This is something you cant skimp on. Not even for one day as it quickly turns into a downward spiraling cycle which ends with malnutrition and dehydration, both are not fun.
During your treatments you might not feel up to hitting the gym as hard as usual. Many patients have had to put their workouts on hold for a couple months until they get back on their feet.
Anyone who offers assistance to you, take down their name and number. Tell them when the time comes you need help you will let them know what they can do. You may need a hand with picking up prescriptions from the pharmacy, doing a load of laundry, helping you with light housekeeping or even driving you to treatments. Many patients lost their ability to drive due to pain meds so its a good plan to line up some helpers. Hopefully you have a caregiver to help you. If not then it would be a good plan to find a few helpers you know you can count on when you need a hand. Dont be shocked if people you know change. Some run for the hills while others you barely know will become your best allies. Its nothing personal, some people have a hard time dealing with illness of those close to them.
Its a long road but you will get thru it. Feel free to ask us any questions you might think of. We will help you as much as possible, you're family now. Best wishes!
PS... Almost forgot! I also suggest going to a major comprehensive cancer center (CCC) for a second opinion. Below is a list of CCC's. They are the countries top hospitals to treat cancer. The CCC facilities all use a team based approach where the specialists get together so everyone is on the same page. If you cant get to a CCC, there is also a list of the top US hospitals. Look for a teaching hospital or university hospital. Find the best medical care you can and get another opinion.
CCC list US News Best Hospitals List
JD,
You maybe my twin. I sent you a PM. Look at the top for a flashing icon.
Hi there. The feeding tube is an individual thing. Be honest with yourself. You're an athlete, in pretty good shape, right? Most men think their tough. Which in some instances is true, however radiation can be brutal. So that said - can you force yourself to do things that are exceptionally painful? Like eat and swallow when your mouth and throat is on fire, and raw and full of sores? (It really does feel like acid is eating away at your throat and mouth). This is enough to challenge even the hardest and toughest person. Nutrition and hydration are primary in fighting this cancer and healing. So if you think for a second that maybe you won't be able to follow through with the meds and nutrition etc... a peg might be a good idea. That said it should not be the sole method of ingestion. Regardless of tube or not you need to keep swallowing even if it's just a little liquid otherwise you could find yourself on a tube for life. I had a tube at the insistence of my dr. couldn't use it. Had it removed 2 weeks post radiation. Did I regret having it? No. It was a just in case for me.
Regardless, sorry you have to be here, and welcome.
Best of luck.
JD, welcome. Sorry you have to be here, but you're a member of our family now and we're here to help. You've already heard from some of the very best people.
Cheryl has some excellent things to say about the PEG tube. I was one of those who chose not to have one, and I regretted it. I'm happy to discuss this with you at any time, either through PM or over the phone, so send me a message if you're interested.
We'll be with you every step of the way. You'll get through this... it'll be tough at times, but I know you can do it.
All best thoughts your way.
Thanks so much for all the warmth and welcome. I was moved to think of this song from Yes:
"I've seen all good people turn their heads each day
So satisfied, I'm on my way
I've seen all good people turn their heads each day
So satisfied, I'm on my way
Take a straight and stronger course
To the corner of your life..."
Today I had surgical biopsies, and then my niece came to babysit Uncle John. I did not think this was necessary (my wife was engaged in taking our daughter to the Prom-- both our kids are in the autism spectrum, and Caroline has just graduated in April into adult services; this was Caro's first visit back to residential school since then, so a big deal, and Dad having cancer is no excuse! both kids live in group homes, btw, the most relevant issue for this forum).
So Judy saw me through the brief surgery and recovery, and Janean came over about 3:30 or so. Here's my relationship with this surrogate daughter Janean: her dad is deceased, and her mom is a long term substance abusing narcissist horrible parent, and don't ask me what I REALLY think of her ;-)
Anyway, Judy and I are appointed grandparents to Janean and Andy's two beautiful daughters. In fact, I spent most Fridays at Janean's for her eldest's first year, when she worked, taking care of Nora. She had another pretty quick, so it's a 3 year old and an 18 month old, which means she and I don't finish many sentences (nor say the full ones we'd utter without kids present-- she's full time mom now).
But today she was all mine. We sat out back in the sun, watched my koi & birds in the waterfall, and then we went in and watched some TV-- some funny stuff and the beginning of Pixar's "UP". That was powerful and amazing anyway, but now it's like they were reading my mail;-)
I have heard the odd expression " a gift that cancer gave me " , but now I have lived it. And I am still a puppy at this; I know so much more and worse will come. But something good came, too, and "they can't take that away from me", as they say. More tomorrow (and maybe more on medicine and less ethereal).
Peace out,
John D.
Hello John - welcome to the family. You've already seen how knowledgeable and caring your new brothers and sisters are. We will help you get through this.
You were in fit shape before diagnosis, that endurance will help you fight the disease nicely. I had very few problems during treatment; other than a little fatigue which was taken care of with a daily 15-30 minute nap. Nothing else changed for me during treatment. I'm a pretty serious dancer (swing, ballroom, country, latin) and I didn't have to give any of that up during treatment. Dancing is not running marathons (have done 3), but it isn't sitting on the couch either.
So, do what your body will let you; it will tell you when enough is enough. More importantly, eat as if you were trying to get fat. You won't get fat, and you likely won't gain a single pound. The disease and it's treatment are consuming 2/3 of what you ingest every day, so unless you want to live on 1/3 of your intake (which won't work) you simply gotta increase intake. Add in exercise during treatment and you have to eat a lot more.
Some treatment centers install a PEG feeding port on all patients, some don't. Let's hope you can avoid one.
take care,
Tony
Welcome aboard John. Sorry to meet you here and not at a beachside bar. The PEG debate is one for conjecture, some people have it and some don't. I was lucky enough not to.
Don't go Googling everything, you'll scare yourself to death. But if you're like me you can't help yourself and you'll Google anyway. I've come to realise every cancer case is different. Decisions are made on a whole range of factors that you might not pick up in your searches. What you can use the internet for (including this forum) is to help you understand the torrent of information the Doctors are giving you.
The next few months are a tough journey. Post your questions and let us know how you are going. We've all gone through our own battles but everyone here will tell you what I'm sure you already know, a positive attitude makes all the difference. It may be hard to do that when you're bent over a toilet bowl or sitting on the floor of the shower crying, but its at those times when you need it most.
For now, as has been said many times before and you'll hear many times in the future, EAT EAT EAT! Pretend you're a bear going into hibernation because the more reserves you have going into this the better off you will be. Its too late in week 5 when you're flying from one side effect to the next. You want to be having a steak every night you can because soon enough you won't have the option.
God I miss steaks. Maybe another couple of weeks!
Best of luck John. Let us know how you are going, don't hesitate to let us know how you are going and if you have any questions we can answer.
Hi John, welcome, from another New Englander.
Glad you caught things early, makes a big difference. Look like you have a good start. One item to be aware is the care giver, and family impact, even if you have older kids. only after 2 years did I learn how hard the kids took the initial news, everyone hears the diagnosis of stage 3 and assumes the worst. Even for the caregiver it is a huge emotional and physically draining road, strengthen it up early, plan for some extra help.
Here is a news article I just came across last week, didn't see it on OCF sight but probably there. Might be an interesting add to your medical discussions if you fit the category.
http://news.vanderbilt.edu/2014/06/...tients-may-receive-lower-radiation-dose/ Take care..
Mike
The article is on OCF's newsfeed, first reported a couple weeks ago. This service is free if anyone wants to sign up.
OCF Newsfeed, HPV + and lower radiation study
Welcome John,
I laughed at Cheryl's response that said, "Most men think their tough" lol. I thought I was, and chemo brought be to my knees, literally, for the 10 count after 5 days. I just dropped, and couldn't believe it with legs that were strong, was fit, and been a gym rat, exercise buff since I was 15, and all my employment required me sometimes be physical, and physically imposing, besides smart lol. and was somewhat was at 5'10" between 210-275lbs depending on my exercise routines. Anyway, maybe it helped me to recover, which is almost 5 years now , but it didn't do any good for my adverse reaction to chemo or whatever. In fact, during my week of high dose induction chemo, which is like 5x that of regular chemo, I was exercising in my room, walking the halls, and was able to walk out of the hospital on my own, barely, on the 6th day with my large duffle bag, and kept saying to myself, "Walk like a Man." from a Bruce Springsteen song.
I had suffered septic shock, sepsis, amongst many others, which hospitalized me for 6 months, and I'm still trying to figure out what happened if was reaction to certain vaccines, medication, interaction with other medications, exposure to viruses, etc. I'm more concerned with these now, and knowledge, rather than exercising during treatment. If so, one should protect themselves and limit your exposures in public.
Cancer is like any crisis, you prepare for the moment mentally, physically, get armed with knowledge, and during battle you fight, in our world it's either with surgery, radiation, Chemoradiation or combination thereof, and make necessary adjustments during, wether it be chemically, nutritionally, etc., then after battle you recover, review, learn, improve, and prep for the future.
Good luck
[quote=PaulB]Cancer is like any crisis, you prepare for the moment mentally, physically, get armed with knowledge, and during battle you fight, in our world it's either with surgery, radiation, Chemoradiation or combination thereof, and make necessary adjustments during, wether it be chemically, nutritionally, etc., then after battle you recover, review, learn, improve, and prep for the future. [/quote]
Can't sum it all up much better than these words. Wow.
Thanks Uptown! I would probably add to prepare part to make a plan (chemo, radiation, surgety, transportation, etc.) any alternatives, 2nd opinions, worst case scenarios, and during treatment, to carry out the plan.
Hi folks, thanks for all the great, informative and caring responses. Here's "How I Spent My Summer Vacation" so far...
June 11th needle biopsies
June 12th confirm Squamous Cell Carcinoma
June 14th Petscan (lights up at BOT)
June 16th meet with Radiation Oncologist/ confirmation of HPV16
June 18th surgical biopsies done (all come back negative)
June 26th meet with medical oncologist; later in day, second opinion at Dana Farber Cancer Center(more on below)
June 30th meet with nurse, radiation oncologist ; fitted for radiation mask, and CAT scan
I had the good fortune to meet with a panel of four oncologists at Dana Farber on Thursday. Though they said the team treating me had done everything they would do, there was a slight difference of opinion from the radiation oncologist, Dr. Roy Tischler. He takes a more aggressive approach with radiation, and would treat the nasal pharanx as well as the tongue, lymph nodes and tonsils that Dr. Bill O'Meara is aiming for.
Tishler says O'Meara's approach is the standard that most would give. O'Meara says the nasal pharanx is not implicated in many HPV16 cancers among non smokers of causcasian ancestry. He has very rarely seen a pharanx origin, and when he had it was before the testing for separating HPV16 from other types. In O'Meara's take, if one is not asian (subject to other viruses) and does not consume major amounts of smoked meat and fish, then pharanx is unnecessary, and he suggests if I want that to go to Tishler (which is impractical- the ride in during the day is horrendous, so I would face rather than a ten minute commute, more like 2-3 hours of travel time to and from appointments.
Hey John,
I am currently going through RAD. Just had 15th today so I'm officially halfway.
I had the same feeling about PEG but oncologist insisted I have one just in case so that I get the nutrition needed. After reading and actually paying attention to what people have written about calories and protein I have discovered I can't hold my own even though I'm still eating and drinking some it is not near what I need to help my body heal..so I have formula here for the days I'm lacking and the pain is at its worst...so please don't feel as if the PEG is a bad thing or that you are giving in to the cancer because it is NOT! It is a tool to help your body if needed to succeed in getting rid of that intruder in you!
So from one to newbie to another......We can do this!
Love to all!
CathyG
Hi Cathy G,
Thanks for your thoughts. It's really helpful to hear from someone midpoint int he road I'm starting down.
My feeling about the PEG are complicated, and surely part of it is vanity (which is not helpful, but it's there and I should be honest with myself).
But the other factor is everyone also stresses exercising, and I think that the PEG will interfere with my yoga, weights and cross trainer/treadmill/spin activity.
So I will try to avoid it. My Med Onc. says 80% of his patients in NH (I'm in northern MA) avoid the PEG successfully, while my rad Onc. is more clearly proPEG. If I was the RO, I would probably favor the PEG for most patients, too, seeing as the best outcome for his therapy-- in exclusion to the patient's life overall-- would probably be with the PEG.
But it's my body, and I am the only one who will live in it during this treatment. So I will try to continue with oral feeding (my docs will not consider the nasal feeding tube that David used successfully).
And they agree that if I have trouble, they can do the PEG operation at midpoint, and if it is necessary for my recovery, I won't kick.
We'll see what this journey has in store for me.
IMO IF you need a feeding tube it will most likely onlybe needed for a few weeks at the end of Tx or perhaps not even until the rads are over and then IF you need a feeding tube you can have the nasal tube installed in a doctors office in a few minutes without pain and no surgery. I only needed mine for 2 weeks post Tx and believe me it did it's job and I was even allowed to pull it out myself at home. Took all of 10 painless seconds.
I have been preaching to the world for the last 8 years about the nasal tube (over the PEG) and I still can't understand why some doctors continue to push that painfully surgically implanted, hard to maintain, prone to infection, complicated to feed by and daily life distrupting PEG??
Whew...
I wish I had gone your route, David. The PEG was useless for me. No matter what I did, I puked out what I put in. I eventually went TPN via the port after losing a lot of weight. I have a hernia from the PEG, a surgical clip they left in poking me and a random toggle bolt somewhere around that area. LOL
Uptown that was me I reallllly hate throwing up - and I tried the peg a few times and gave up.
Sounds like Peg Wars bravado is back lol. I'm pro-peg, nasal too, if needed. All have pros and cons, and other factors are included in the need, which can be lifesaving. I had two peg tubes, still have one, and had to do TPN feedings also. One thing not often discussed, is a rare risk of cancer seeding from the primary in head and neck cancers from peg insertion during the endoscopy to the the stomach/peg, which can mimic infection in the area, so that should be monitored.
http://www.wenourish.com/docs/cnw12_greaves_tumor_seeding.pdf
Try to go as long as you can without one. You can always get one put in if you need one anytime down the road. Many who push through make it without one; like all things cancer, your own journey is unique. Can't hurt to try.
I think Don is right, if you need a peg, get one; if you can fight it out without one, try to do that.
I lost weight all the way through treatment. My nurses told me they push for a peg when you've reached 10% body weight loss. I reached 10% on the last day of radiation. My nutritionist had fussed at me all the way through because I just kept losing weight. Believe it or not, you can continue to lose body weight even after treatment ends. After losing 32 during treatment, I lost 10 more after it was over (have gained 5 of it back). Treatment is certainly not a recommended weight loss technique, but I do like the new slim look; haven't been this skinny in 20 years.
As they say, it's different for everyone. You are the final say in what is best for you.
Keep fighting, you will get there.
Tony
Hey John,
I hope things are continuing to go well for you. And I wish I had had the guts to stand up and say no about the PEG. I am down to 9 treatments left and for the most part holding my own on weight...only lost 9 lbs...and I think that was due to not eating junk food anymore throughout the day.
So good luck and as everyone as said you know your body best!!
Cathy G.
JD, I GOT THROUGH WITHOUT A TUBE - ALSO STAYED WITH LIGHT EXCERCISE THROUGHOUT TREATMENT, CHEERS