Hi everyone,

Part of me thinks it's foolish to post on this board since I keep waiting by the phone for the call that says there's been a terrible mistake. This could not be happening to me. After reading many of the posts I'm even more terrified than I was before. Actually, terrified doesn't come close to describing my fears.
I'm a 44 yo woman, never smoked, very athletic, a competitive distance runner and avid equestrian, I lead a remarkably healthy lifestyle and can't possibly imagine the devastating impact this will have on my life.

The background of how I got here: I had a large lump on my neck (which got to be larger than a chicken egg) for several months this Fall that I continued to ignore, thinking it was an enlarged lymph node as a result of possible infection from some dental work. When I finally saw a doctor, three of them simultaneously concurred that it must be an infected salivary gland. I was given an injection of antibiotics plus oral antibiotics and told to put a heating pad on it and massage the lump as firmly as I could stand to try to expel whatever was lodged in the gland. Hah. That was dumb and painful. The next day I saw another doctor took the initiative to take blood and chest x-rays (which showed nothing), suggested I wait a week and then if it hadn't reduced in size we would move forward. One week later it was even more painful and bigger so the dr. ordered a CT scan at which time the lump was diagnosed as a branchial cyst which was surgically removed on November 16th (I have a 4" incision across my neck). Post-op the surgeon repeatedly swore that the mass he removed was a benign cyst and there was no need for concern. Two days later he called and said, "I have some bad news, the pathology report has come back and the mass was actually a lymph node that has largely been replaced by squamous cell carcinoma". Gasp.

That was less than 2 weeks ago and since then I've had a PET scan from which I am still waiting results and have been referred to a head and neck oncologist at Mass General whom has assembled a "team". I've already met with the surgical oncologist (yesterday) and have surgical biopsy scheduled for Tuesday the 29th to try to find the primary tumor. The surgeon enlightened me a little bit about the nightmare I am facing in terms of the treatment and frankly I was completely caught by surprise. I had no idea what horrors I had in store for me.

At this point I'm still facing a large number of unknowns:
- was the lymph node HPV positive? (apparently this would be good)
- results of the PET scan
- Most importantly, was the originaly pathology reading correct? My ENT surgeon who removed the lump was so surprised by the results that he ordered the specimen be reviewed by the Mayo Clinic. I don't have these results yet which is terribly frustrating.

So I've joined this group to get the straight story. I don't want a feeding tube so will do everything in my power to avoid that (I'm 5'10" and 125 lbs so I also can't afford to lose any weight). I would love to be able to continue working: I am a sales and marketing director for a scholarly publisher and can work from home (although typically my job requires extended business travel) and although the prospect looks fairly grim I would love to be able to continue running.

My "team meeting" will be Friday, Dec 2nd at which time my "plan" will be decided. I'm terrified. Until then all I do is sit and fret. Any advice will be greatly appreciated.

Hi Wendy, welcome to OCF. I know you are going thru all kinds of emotions right now. Its quite a shock when you get that diagnosis! This may not be something you would normally do but soon you will see this site is very helpful. I know I was shocked when I first was told I had cancer, it didnt fit into my schedule. Somehow cancer has a way of making itself a priority even when its not convenient. You will adapt, we will help you.

You have found the very best place for guidance. We are a large group of patients both current and former along with caregivers. We have been where yo are and understand what you are going thru. Just remember everyone is different and responds in their own unique way to treatments and medications. Some of us sail right thru while others struggle with even the simplest of things.

The best advice I can give you is to go to a cancer center for the best treatment you can get. At the bottom of this post is a list of cancer centers.

At this time you should try to build your weight up. If you require further treatment such as radiation, most likely you will lose weight. Eat everything you crave and try for a balanced high calorie diet.

Round up everyone you can to get help. Now is not the time to be proud. If someone asks what they can do to help, write down their name and number and let them know you will contact them when you need help. Some friends will become even better friends while others will head for the hills when they see someone with a serious illness. I hope you are fortunate and have good friends and family who will be there every step of the way. Take someone with you to appointments. Everyone can use another set of ears. Write your questions down so you dont forget. Some even tape record the session so they can play it back later.

Best wishes with everything you are facing.


Cancer Centers

Welcome Wendy!

I'm very glad you've found OCF, the best place for information and support for H&N Cancer, sorry you had to though

What you'll find here are people that have traveled a road similar to the one you've found yourself on and can not only relate to what you're feeling but the obstacles you may face as well. You are in good hands...in more ways then you may realize.

Your "team" at Mass Gen is a FANTASTIC choice, already an NCI designated CCC, they are ranked 2nd only to John Hopkins in Ear Nose and Throat and 7th overall in Cancer care as ranked by US News and World Report. Where they are ranked a few spots lower then the Mayo in Cancer, they are actually ranked higher in Ear Nose and Throat specialties. Where the rankings are subjective to be sure (to a point) they are one of the elite treatment programs for our brand of cancer and that should make you feel good about who's running your care.

Now on many levels I relate to you, I was "younger" when diagnosed, an athlete, businessman (came up as a corporate salesman) and lead a very healthy lifestyle before being diagnosed with cancer after a dental appointment. I too put off getting large lumps on my neck checked out due to my busy schedule and belief that it was nothing more then an infection and due to that had a very poor outlook when finally diagnosed. I also put my care into the hands of a top rated program (U of WA medical center) and I'm here to talk about it almost four years later.

It's important that you take one step at a time and remember to breath...don't let this overwhelm you. It's best (and hardest) to wait until your team has had an opportunity to analyze your scans and put together a plan before deciding anything. The only thing you can control after you've chosen your medical team and course of treatment is your attitude and your nutrition, the rest you have to take as it comes. The good thing is knowledge is power and you've got one of the top medical teams in the country on your case, and the OCF forums in your corner and that should make you feel better if anything can.

Use these boards as much as you need, we are here for you my new friend. Keep breathing and taking it one step at a time.

Keep your chin up

Eric

Hi there - wow - I have to say I've been there - I know the feeling. try not to freak just yet! It it is an HPV cancer it does respond better to chemo and radiation, the PET should help locate the primary - there are different treatments depending on whether it is HPV related - if it's not usually - depending on location of the primary - first treatment is surgery... And since you've already had a lymph node involved likely they will do a neck dissection, and removal of the primary tumor - then possibly radiation and chemo. HPV + isn't always treated with surgery usually it's just radiation and chemo.

Re working - it really depends on the person - however - radiation and chemo can be brutal. Nausea is par for the course - radiation after week 4 - is very very very uncomfortable - and fatigue is also very common - I was supremely lucky as I didn't suffer too badly until week six - however I think I'm a bit unusual. I wouldn't count on working the whole time or your usual hours. Plus you may not want to be in public during the later part of treatment - often, depending on your skin type - fair skin has a more difficult time - you blister, and peel, and have excessive mucous In our mouth and throat - there's a lot of drooling and mouth - throat sores - etc. sorry to paint a bleak picture but I prefer to know the details up front, and sometimes it helps prepare for what's to come.

I'm sorry youre going through this - and sorry you have to be here!!! It was almost a year ago I received the same diagnosis - mine was not HPV related. I had surgery (there was a 2.4 cm tumor in my tongue - they removed that and part of my tongue and rebuilt it and took out 40 lymph nodes - one was positive) and 33 rounds of radiation and chemo x2. I am 46 - and not only someone who worked out daily - but was (still am) a vegetarian - who doesn't drink or smoke... And never have.
With regards to the feeding tube, I was told I had to get one. It was no use to me as I was allergic to the formula - and kept throwing it up - so I sucked up the pain and learned how to chug an ensure in 13 gulps!!! I did keep it in throughout treatment - its nothing really and heals quickly once removed. I lost 20 lbs - and another 10 after treatment because of the changes in my diet - radiation murders your tastebuds ( particularly if it's aimed at your mouth. ) So food becomes very unappealing.
As Christine said try to gain weight now. Good luck. And again sorry you've had to join our little group, feel free to pm mee if you have any other question or just need a shoulder - take care!

I have to agree Cheryl...you are a bit unusual... HA!

Runner Mom,

You couldn't describe me any better at the beginning except I'm a male and a biker. Your Primary may well be either your tonsil on the side of the infected node or your Base of Tongue (BOT). They may not even find it. Unfortunately you have to calm down (easier said than done) and wait for the diagnosis system to play out and then let's see what treatment they recommend. You probably stand a 70% chance of being HPV+ and I assume they are testing your node cells for that. Assuming a lot here but I would think they will recommend no surgery; 35 rad sessions with concurrent chemo, most likely Cisplatin either weekly or 3 larger doses. It's doable without the PEG but like me you have no weight to spare so falling behind in the weight category for you is more critical than many to undergo this Tx.

Let's hope for the best and keep us posted because without more info we really can't speculate any further.

I would encourage you to forget healthy and concentrate on fattening up ANY way you can. Go for all your favorite naughty foods and I would reduce your exercise routine because you can't afford to use up those calories.

Wendy

Welcome to the club that nobody wants to join. I liked your subject line; mine would have been Dad/Husband/Gov't Ninja.
Of course now you want to add a new category: Cancer Survivor.
In addition to the advice here, please INSIST ON A TSH blood test now to get your healthy level of thyroid hormone. Without that normal baseline, you will find it very hard to get oncology specialists to help you after treatment since the lab values for TSH are still using 20th century levels instead of the research that last twenty years. As an athlete you will want the same TSH level after radiation & chemo that you had before. Trust me on this, it is a very big deal and it is a very simple easy blood test.

As the resident contrarian on OCF, I support your trying to just keep swallowing thru treatment. PEGs are a hot button issue here since almost all need to believe in our doctors and some radiologists insist on tubes and others (like my CCC) discourage them. So when someone challenges "our" doctor's opinions, it has gotten feisty here in the past. For what it's worth, Like yourself, I was bound and determined not to get a feeding tube and I didn't the first time around. For some of us, the self image of strength and health as well an indomitable spirit just are not compatible with getting a feeding tube. It feels like we are giving in to the cancer. But we are a distinct minority. For the majority of OCF posters, a feeding tube was a Godsend which did not impact their strength or spirit, it just was accepted as part of TX, not what they wanted but needed. .
My advice is to try it, you can always get one popped in if you change your mind. There's no shame in changing your mind.

I'd keep exercising as long as possible but just eat a lot more and put on some extra weight. Even those with PEGs lost weight. Yes, pig out on high calories - you will be glad you did once TX starts and swallowing becomes painful.

Last but not least, if you can do your job from home on a computer, you should be able to work. Travel though will be out of the question with the radiation schedule so start exploring Skype and Video conferencing and other options now.

Oh, and I hope the original pathology report is wrong and that you don't have cancer at all. We do not need nor do we want any more new members in our club.
Charm

Wendy,
You've already read some very good advice, but everyone has a slightly different take on their treatment, etc. I did not have a PEG. For some reason or another, it was not an issue, although I decided at the outset I was going to make it my goal to keeping eating in the usual way. However, I did not eat my usual foods after two or three weeks. I had to modify to keep it going. I had no weight to lose either, and I really did not lose more than 2 or 3 lbs.

Sounds like you will probably have a good treatment team, so no worries there. I do not know about you keeping up on your job, etc. That would have been difficult for me personally. You can and should exercise regularly. I walked every day, exercised otherwise on several days. It is terrifying, it is hard to accept.

One thing you might check out is there is currently a study going on at MD Anderson, another great place to be treated (which is where I was), that is researching the use of acupunture to retain your saliva during treatment. You might check their website on it. I believe they had some good results on what I think was the pilot study (might be incorrect there)and now are going to study it with placebo. You'd have to pay for it yourself, but it would certainly be worthwhile if it worked for you. I tried it for the first time last week (9 months out of treatment) and, you know what, I do have more saliva. I did have some already, but I was not really happy with it, but I guess I could have waited the year or more I was told to expect. Anyway, if you had more saliva going through treatment you would be way better off. You'll have to clear it through your docs though.

Sounds like you have a lot of good things going on in your life. You'll make it through this using the same strategies you have already employed.
Best,
Anne

Hi Wendy,

My ex-husband had an oral cancer diagnosis overturned in favor of a diagnosis for a branchial cleft cyst. It may very well be that your ENT was right and the pathologist is wrong. My husband's ENT never felt the cancer diagnosis was correct. But, he was professionally obliged to accept the pathologist's diagnosis of squamous cell carcinoma and refer my ex-husband for treatment.

I cannot emphasize enough the importance of pursuing an independent second opinion from a comprehensive cancer center. When I say "independent" I mean independent from your medical care team.

You can have your medical records, which will include your biopsy slides, sent to wherever you choose to have them reviewed for a 2nd opinion. Your biopsy slides and any tissue samples preserved and retained is your personal property. You may do with them what you wish.

I arranged for the City of Hope (a highly ranked CCC in California) to give a second opinion on my ex-husband's cancer diagnosis. Our situation was peculiar. I had many reasons not to trust the pathologist who handled my ex-husband's diagnosis to refer us for another opinion.

There were four pathologists, which included the Director of Pathology, at City of Hope who agreed that it was a branchial cleft cyst instead of squamous cell carcinoma that caused the swelling in my ex-husband's neck. Please read my signature below to get an idea of what was our situation. It turned out that he was truly misdiagnosed with SCC. Unfortunately, he had begun radiation and chemotherapy, had unnecessary surgery to remove his tonsils and oral surgery to remove healthy teeth. It was a nightmare--and because of lasting side-effects, we're still caught up in this nightmare.

A doctor who is a pathology generalist and who is not keeping current on oral cancer diagnostics might read a biopsy incorrectly when it comes to branchial cleft cysts. BCC's contain squamous cells and both BCC's and SCC's can test positive for the presence of HPV. I believe that the pathologist who first evaluated my ex-husband's lymph node biopsy was not aware of those facts. And, as a result, he diagnosed the condition as being malignant instead of benign.

I believe that the pathologist at the hospital where the biopsy was conducted used a positive result from the p16 stain (tests for the presence of HPV) on which to base his diagnosis. But, a positive p16 is NOT diagnostic of cancer. It is true that HPV does cause oral cancer. But, it does not cause cancer in all of the people who have been exposed to it. You can find out if your biopsy samples were tested by looking at the pathology report. The pathology report will probably not contain the words "HPV Positive" anywhere on it. But, the results of the p16, if conducted, will be listed.

You have some very good reasons to remain skeptical about the accuracy of your cancer diagnosis.

Also, please be aware that PET scans are not always accurate. Do not allow any doctor to diagnose your cancer based soley on a scan of any sort. PETs are notorious for giving false positive readings. If a spot shows up on a scan, you will need a biopsy to confirm that it is malignant. Scans tell doctors where to look for cancer. They do not tell doctors that something is actually cancer. Scans are not a diagnostic tool. They are merely an aid in the process of obtaining a diagnosis. There is a mantra about it here on the OCF Forum, "It isn't cancer until the biopsy says it's cancer." And then, pathologists can be wrong (as in the situation with my ex-husband.)

I have posted a lot of information on this forum about branchial cleft cysts v. squamous cell carcinoma of the head and neck. I hope it is helpful to you. If you have any questions, please feel free to contact me.



Sandy

Hi Wendy,

I mirror the comments of everyone that is on here that this is the place you want to be. We found this site half way through my husbands treatments and it has been so valuable in our decision making and a good venue for finding out what to challenge and what to accept, and sometimes just a place to feel comfortable talking about things.

My husband is an athlete too, at your point his biggest challenge was eating to bulk up which went against everything that he had worked so hard to achieve. I am praying your results do not put you in the position that you have to have radiation and chemo and everything I say will be nothing but advice for anyone that finds this site. Pat did not get a PEG and was able to eat pretty much through the entire treatment until the last 3-4 days.

Things that helped him and us: #1 this site, these folks are awesome and have answers to any question you have! #2 We all know that as soon as you receive a diagnosis we start doing the web searches for as much information as you can gather, we listened to the doctors and came to this site. Pat was not "allowed" to research, I did that. It's the whole mind over matter concept and if someone tells you that you are going to feel this way or be able to do or not do things then it is so. Everyone's journey is different and you sound like a very strong woman! #3 During week 1 of treatments, I took a vacation from work and we went on an eating "holiday" we ate things that we would have never indulged in during our pre-diagnosis physical fitness routine. (We BOTH gained about 5 lbs). #4 We used Aloe Vera Sunburn gel from day 1 and he never got the sunburned peeling neck and it just looked like he had been out in the sun. #5 Take your vitamins, get your rest and HAVE FUN this week. Do not fret over things to come. After Friday we will all be here for you. Have a peaceful week, EAT and enjoy life.