Well....I'm one of those typical members who disappears when things are going well. So of course after today's news, I am back.

Last Monday I noticed some swelling on the left side of my neck. Thinking it could be a cold coming on, but also knowing my history, I scheduled an immediate appt. with my ENT. He felt it was probably an infection in my salivary gland from dehydration, but recommended a PETct or biopsy b/c of my history. I chose the biopsy to get the results quicket.

Today I had an FA biopsy done on the gland which came back confirming the cancer was back. The pathologist said I'll need surgery and probably radiation. I'll see my ENT first thing Thursday and plan out my next steps.

I'm just anxious, especially about radiation. I absolutely love cooking and can't imagine what will happen to my salivary glands and tastebuds. I also don't know how I'm going to deal with missing so much work. I thought I was through this.

I'm just overwhelmed right now and needed to put my thoughts down.

Thanks for listening.

Jen in AZ

Awww Jen, sorry for the awful news. Don't stress about the post treatment...you never know how it will all work out. My husband is 2 years out and has no issues w/ saliva and taste. I'm happy to report that he cooks as well post treatment as he did before.

Are you at a comprehensive cancer center? I wouldn't recommend getting radiation anywhere but a CCC.

What type of work do you do? Some people work through much of treatment, but for others they can't work much beyond the first few days.

Individual experiences vary greatly w/ radiation.

Please keep us updated. You are so young to be going through so much. I will keep you in my thoughts!

Jen

So sorry to hear that you are having to deal with this again.

Karen

Hi Jen
thoughts are with you .xx

Hello Jen,
My mom had extensive radiation done, both IMRT and Brachy. Happy to report that she has no saliva issues and her taste buds are still all working!
I will be thinking about you.

Donna

Jen,

I don't know of to many pathologists that recommend anything especially surgery so as others have said try and get to a CCC and get another opinion.

Jen,

I am so sorry you are having to deal with this again....and you are so young. Hang in there and keep us in the loop. We're all here for you.

Hugs,

Shelley

Firstly Jen - I am sorry you had to come back to the board, but never feel apologetic for coming back - you are at the right place.

Radiation is not the end of the world and I'm sure you will handle it well. Yes - you will have a "new normal" but at the same time I am sure you will be grateful to be here and still be able to enjoy life. I had radiation twice - and yes, I can still taste food (perhaps I'd weigh less if I couldn't!)

Keep us posted and let us know exact treatment plans and timelines. I know I always felt sooooo much better once my plan was set and I was moving forward.

Hugs

Donna

Jen, I'm so sorry to hear about your recurrence. Keeping you in my thoughts and prayers.

Jen sorry to hear about the recurrence. As the others have said, radiation experiences are different for everyone.
Buff up now so you'll be in great shape nutritionally.
keep us posted

Thanks for all the kind words/support. I won't know my exact next course for surgery or treatment until I see my ENT tomorrow at 7am.

I emailed two coworkers yesterday who had known I was gping for the biopsy. One is an oral cancer survivor and he gave me hug this morning. The other is a good friend and he brought me a box of cookies.

I am thankful for the support of my friends, family, and this forum. And also relieved to hear radiation is not the end of the world. How do I find out if my oncologist is with a CCC? I've been seeing one at the U of A radiation oncology department.

I'll keep you all posted after tomorrow's followup with the ENT.

Thanks again.

Here's a list of the CCC's

http://www.oralcancerfoundation.org/resources/cancer_centers.htm

Jen- so sorry to hear of this news Hoping you make a quick and full recovery. Hang in there and be strong during this time. I know it is difficult. You are young and strong and that gives you an advantage in the fight.

KATE

Am so sorry to hear your news and that you will probably have to have horrible radiotherapy, but it is effective and the side effects do pass.

Very best wishes,

Cathy

Jen, I feel so bad for you at your age, but there is no age limit for us and we just have to bear down and fight it as best we can. Rads aren't anything nasty, not great either, but necessary to fight this disease. You might lose some taste and all foods might taste the same for awhile, bt at least you will be alive and have something to look forward to. I pray that what you go thru this time will be a permanent cure for you. Keep us posted. Jim

Jen

It is with a sad heart that I welcome you to the "I couldn't even make it a year" club. It is a terrible feeling for those of us who were on the cusp of the magic one year mark when most recurrences happen to get so close, then find the cancer is back.
Radiation is not as bad as surgery in my opinion, having had both (radiation twice and surgery all at once)and some posters sailed right through it. As for your cooking and culinary concerns, just remember that the super celebrity chef, Grant Achatz is back as good as ever after radiation; Here is a blurb from his new book coming out:[quote]
But this book is not a book solely about cancer, mortality, or how I have changed my life because I survived stage IVb cancer. It won�t tell you the best way to eat, sleep, exercise, or find doctors to beat cancer � though I do have serious thoughts about the process. Instead, this book is about how that knowledge informed me that I didn�t have to change my life much at all. I spend more time with my kids, I make more time for myself. But on the whole, I am doing what I did before I nearly died: cooking at Alinea, creating new cuisine, and pushing the boundaries of fine dining. Life On The Line is the story of the journey to that moment on stage in New York. From a diner in Michigan, through the Culinary institute of America, to some of the finest kitchens in America, this is my story of a passionate desire to be the best. It is a love affair with cooking, creativity, and the rigors and routines of a professional kitchen.

It is at times a business book, at times an inside portrait of the culinary world, and at times a cancer survival story. [/quote]

Today's update -
I met with my ENT this morning. He said I would get a PETCT, then a left neck dissection, and then most likely radiation. It all depends on the results of scans/surgery/consultations over the next few weeks. The PETCT place called at 5:45 today leaving me a voicemail that they close at 5:30 (what?) and to call them tomorrow to schedule a scan for first thing next week. The hospital called to schedule my consultation with my surgeon for the 20th. I've decided to return to the Mayo Clinic in Phoenix for this round of surgery, as they do 1-2 of these surgeries a week and my ENT says he usually does about 5 a year. After all of that I'll meet with my oncologist for the next plan of attack. At this point I'm just hoping to be home from surgery in time for Halloween. I think the fresh left neck scar and faded right neck scar would make a pretty awesome/scary Halloween costume. Ha!

Thanks to David for the CCC link. It turns out my oncologist is associated with the only CCC in Arizona. Go figure! That makes me feel a whole lot better about how this will all turn out.

Thanks to Charm for the book recommendation. That guy's story sounds awesome and would be a real encouragement during this time. I'll have to pick up a copy as soon as it comes out.

Jen

good luck. Smart move to go to the Mayo clinic in Scottsdale for the surgery . While you are there , why not ask about their thoughts of adding some chemo with the radiation for your UofAZ doc to consider. PS. that chef Grant Achatz also had cancer of the tongue and you can google him to see the video of his Oprah appearance and other stories while waiting for the book to come out. He's only 10 years older than you so let's hope his experiences at recovery will be yours rather than the trouble some of us old folk here encountered

Jen, i'm sorry you have to go through this again. Radiation is tough, but you have no choice. It's part of a plan to get better, and it has an end date, which is a big deal psychologically.

Another update - I got the results of the PET scan. The only spot that lit up was my left submandibular gland. Horay! I told my husband that was the best bad news I could have gotten. I meet with the surgeon on Tuesday to discuss upcoming surgery/radiation plans.

I think my biggest fear at this point is catching the flu and having to postpone surgery. I just found out yesterday that three people I work pretty closely with are out with H1N1. My husband was sick earlier this week with some other flu strain. I'm trying hard to wash my hands a lot, but it's still a big concern.

I'm so glad it wasn't as bad as you thought it might be. It breaks my heart to see such young people like you and others on this board dealing with this cancer at a time in your life when you should be feeling somewhat invincible. My thoughts are with you and keep us posted on how you are doing.

Sophie

Good to read it is contained. I hope you stay healthy!! Will have you in my thoughts!

Jen,
Good luck with everything! I didn't make it a year either girl! I made it a little over 6 months. Keepme posted on here or www.remissionorbust.blogspot.com

Hi Jen,

I am sorry to hear about having radiation. I remember before radiation I was terrified about what might happen. Today, I am so relieved because the ancticipation was worse. It was not fun going it though. I remember your posts when I was going through my treatment and your strengh inspired me and those rough days.
You will do great!

Jen, so sorry about your news. Will be thinking of you and wishing you well.

I am new to this website, I too just got the results of my byopsy. Surgery 11/08 followed by RT with the "MASK" completed Jan 09.
Everything seemed to be going good, follow up on 10/15 w/ENT found soft spot which turned out to be SCC.
Looks like I'm heading back for surgery as evasive as first time. Awaiting schedule for PET/CT then treatment plan.

Another update - so I met with my surgeon late yesterday...
Turns out it's not actually my salivary gland, but a lymphnode, although it's still contained. The lymphnode swelled so much that it sorta fused around the salivary gland, hence why the ENT had thought that's what it was originally.

Nonetheless, the surgeon is going to do a left neck dissection and remove the salivary glands and all the left neck lymphnodes. Then after surgery he will present my case to the Mayo clinic tumor board and they will collectively decide if they think I need radiation. He says right now it's not definite, but a "probably". If I will need it, he says he always recommends 6 weeks of 5 days/week treatment.

I have two concerns at this point.

1. My surgeon is going out of town and so my surgery won't be until 11/11 or 11/12 (the scheduler is supposed to call me tomorrow morning). I just hate waiting that long. Who knows what this cancer will do in the meantime.

2. My left jaw has been aching off and on recently and I don't know if that's related or not. I sorta forgot to ask my surgeon about it yesterday because it wasn't hurting at the time and I had about a dozen other questions I was asking him.

My surgeon is supposedly one of the best in the nation, so I guess waiting for him to do the surgery is my best option. I just hate the waiting part....that is the worst part of this disease....the waiting and the unknown. *sigh*

At least now I am beginning to have a plan unfold before me.

I'm having a hard time being strong today. I got a call from the scheduler this morning and my surgery isn't taking place until 11/16. I realize the surgeon is going out of town and he has dozens of cancer surgeries to schedule, but I am still very uneasy about waiting so long. I called my ENT who says the wait shouldn't make a difference and he thinks I should still go to Phoenix. He says if I still am uneasy about it, he could do the surgery maybe 11/4.

The surgeon I had last year, Dr. Kim, was so amazing. He was always so willing to work with my schedule and would remember little facts about me from each visit and was just so personable. Dr. Kim got a new job in Seattle a month or two ago, so my files were transfered to Dr. Hayden, Dr. Kim's original mentor. Dr. Hayden seems like an amazing doctor/surgeon with many years of experience and recognition..... I just didn't get the same warm and fuzzy feeling with him. Now with scheduling surgery so far down the road it just makes it that much worse.

Anyway, sorry for the rambling. I don't keep a blog or anything and I like having this forum to post my current thoughts and feelings. Thanks for listening.

My prayers are with you Jen. i came to this sight today to just hope for anyone out there going thru what we have all been thru.

God bless you!
julie

Jen, my prayers are with you. I am now joining your club. This stuff stinks. We will get through this together. I will be having TX at the same time you get your surgery. I am glad your ENT is willing to do the surgery earlier for you. If you are un easy about waiting until mid-Nov, take him on that. I know I would. Keep us posted.

jen, i have a very similar story to you, in terms of initial diagnosis and recurrence. i had SCC diagnosed on right lateral tongue in 9/08, then partial glossectomy, right neck dissection, chemo and radiation. mine was T1N1M0. in 3/09, i had noticed a lot of pain on the left side of my jaw but my CT scans continued to come back negative. my left jaw area was swelling and sore, but i just figured i had a blocked submandibular duct because of radiation treatment. it wasn't until 8/09 that a bump showed up in my right neck suture line and after seeing my surgeon and getting biopsied both under my left jaw and right neck suture line, did it come back as recurrence. crazy that our cancers can go from right tongue to left neck. unfortunately, my tumor(s) aren't surgically resectable at this time. i just got back from my first visit to MD Anderson in TX and I'll be receiving some chemo there. i've been on other chemos since august, and while they are holding tumor in check, they're not getting rid of it.

i wish you the best in your surgery and future treatment. stay strong, and remember to smile and laugh as much as possible. we are going to tough this all out!

kristen

Jen, normally I would not be able to talk to you since I went to ASU - lol. But now we are in this together. I had a right neck dissection October 2nd. I start radiation supposedly 11/16 although I haven't even had the mask made or the peg or port put in, let alone the simulation. So it might be another week after when I start. Oh how I hate to read about the great number of recurrences of this cancer. And I am so amazed at the young people on here. I'm 63 and I thought I was healthy until I went to the dentist and he found a tumor under my tongue last May. Nothing but bad news since. I wish you all the best.

Hi Jen- I know what you mean about wanting to have rapport with your Drs. Its lucky that you foudn that with Dr. Kim... however it doesn't mean that you won't be getting the best care if you don't have that personal connection. Many Drs. can be reeeeeally socially awkward-- especially the really really intelligent ones! Those kind of smarts don't always translate into people smarts... Your previous surgeon sounds like a rare bird! This is what I've encountered anyway on my journey and also because my Dad is a Dr. too. MY RO was so rude and inappropraiate and one of the most incompasionate people I"ve ever met BUT she is considered one of the best in her feild so I just had to deal with her weirdness....I'm so sorry that you have to go through treatment again. Its just really hard. I can only imagine. I'm thinking of you and praying for you to have a full and 100% successful recovery from this- Soon you'll be done with it once and for all.

KATE

I think it's time for another update... This morning I am typing on my phone from my hospital bed. I really hope I can go home today. I just hate hospitals and miss my doggies and my husband being around all the time. (He's staying at a hotel, because he just can't sleep in the hospital chair.)

Anyway, despite the pain in my jaw getting quite a bit worse, I held off until 11/16 for surgery. There were many delays and I ended up not getting back to surgery until 4-something. Despite what was supposed to be a simple left neck dissection, it ended up being much worse. After removing the lymphnode area, the doctor saw that the cancer had spread into the base of my tongue and my 12th cranial nerve (hence all the pain in my face lately). They had to sacrifice my nerve and they removed some of the BOT. My speech is pretty bad. Supposedly, it's supposed to get better with time, but without that nerve, I know my speech will never be normal.

It looks like radiation treatment will be coming up in about 4-6 weeks. I'll see my surgeon Monday to remove my stitches and give me the final pathology. I also have an appt. with my rad. oncologist on 12/4.

I guess at this point I'm just looking forward to getting out of the hospital and hopefully getting to keep my plane tix to fly to IL to spend Thanksgiving with relatives.

Thanks for listening!

Well, I suppose I should make a slight correction to my post above. I guess they didn't remove any of the BOT. What had happened was that the cancer in that one node had grown so much that in engulfed my salivary gland and the nerves/muscle controlling my base of tongue movement. They removed all my left neck lymphnodes and my gland/nerve/muscle that was compromised. I got my pathology report back on Monday and they only found one other node with cancer and all margins were clear.

In speaking with the surgeon about his suggestion about radiation, it seems like they would only radiate my left neck and not my oral cavity or right side. That makes me feel a lot better and gives me a better chance of retaining tastebuds & salivary glands, right? The surgeon also suggested I talk to an MO. He said with the cancer's aggressiveness this time, I might consider chemo. He thinks it's almost a toss-up of advantage vs. unnecessary unpleasantness. I'll be seeing my RO on 12/4 and since he's with a CCC, I'll have him suggest a MO to talk to. What do you guys think about chemo knowing my history? I'm sorta on the fence at this point and am looking for some knowledgeable opinions.

All that being said, I'm doing pretty good otherwise. I'm with family today through Friday for the holidays. My tongue still isn't quite working right, so it takes FOREVER to eat anything. At least I won't overeat for Turkey-day.

I also finally started a blog. With radiation coming up, this treatment process is going to be much longer than last time around. If you guys are interested, take a look: http://jensroadtoremission.blogspot.com .

As always, thanks for listening!

-Jen

Hope all goes well for you and your family. Hope you have a Happy Thanksgivivg holiday!! Semper-Fi Bob

Jen, sorry you have to go through this again. this type of cancer really stinks. Hope you get to be with family over thanksgiving so they can take care of you. I would strongly recommend that you see an MO before you start radiation.
How is your swallowing? get hooked up with a speech therapist so you can start therapy and tongue exercises.
take this time to heal and to get your self in good shape physically for the next battle.
hang in there,
nancy

Jen -- sorry about what you are going through, but given the aggressiveness of the cancer, I would definitely throw everything you can at this disease. We only get so many cracks at this thing, and holding back at this point would be risky.

We are all behind you!!!

When I was diagnosed with a recurrance I said - literally "Hit me with your best shot" I would take every treatment that they think would be beneficial. I would double check with them about radiating only the neck. While it would be lovely to retain lots of things in life, LIFE is the point and you can live without a couple of tastebuds if it means you have kicked cancer's butt! I have not seen alot of success stories with people who try to salvage something and "temporize" their treatment plan. Hit it with their best shot - regardless. It is an aggressive cancer and requires an aggressive response.

Keep us posted.

Donna

Another update:

Yesterday I had my appointment with my RO. Despite the fact that I kept putting his name on everything to make sure he was cc:ed, he hadn't gotten any of my pathologies or scans and was completely surprised when I told him I had had a recurrence. I even called his office 2-3 weeks ago and asked if I should move up my 12/4 check-up and be sure to tell him that I had had a recurrence and would be discussing beginning radiation treatments. *sigh*

Despite the initial craziness, I had good appointment. I left feeling almost excited about the next round of treatment. I feel like I am in very very good hands. My RO is a professor at the local university and his primary research is in head and neck cancers in young people. He is also associated with a really amazing CCC, which I got to visit yesterday for the first time. It's the best looking medical facility I've ever been to!

It seems my RO agrees with a lot of you on this sight...I really need to hit this hard. He plans on radiating both sides, avoiding the right cheek area to save at least one major salivary gland. He says in his research with young people/aggressive cancers, adding chemo to the radiation treatment can improve my chance of 5-year survival by 15-20%. So, knowing that, I'm pretty sure I'll be doing that. I'll have to meet with the MO later next week to go over the disadvantages/side effects.

There are a lot more appointments it seems I'm going to have to have before I even begin my simulation, in addition to the MO. I'll have to have a dental evaluation, an MRI, a swallowing test, and a baseline hearing test. I'm trying to squeeze those all in next week, which will be hard, especially considering I have exhausted all my paid time off at work for the year.

The part of my appt. that made me the most excited, though, is that my RO has been researching the most effective diet for helping people to maintain nutrition during treatment and avoid needing a PEG. He said this was going to be like preparing for a marathon, so from now until as long into treatment as I can, I have a list of about 2000 calories worth of nutritional supplements IN ADDITION to my normal diet. I think that's pretty crazy since my low metabolism usually causes me to put on weight with anything above a 1400 daily caloric intake. I'll listen to him, though, since I REALLY REALLY REALLY want to avoid needing a PEG. For some reason I don't dread the side effects of radiation and chemo nearly as much as the idea of having a feeding tube sticking out my stomach. Maybe I'm weird.

Anyway...sorry for the long update. I learned a lot yesterday and am just excited about the next steps to kick this thing in the butt.

I'll update again once I know more specifics about the radiation treatment. I think he said he'd be using helical tomotherapy, but I'm not entirely sure. The main thing was that I needed to schedule all those other appointments before we got into all the details about the radiation treatments.

So until then.... Thanks for listening! - Jen

And another thing....

In case you're wondering what the diet is:
6 servings of ensure in addition to normal eating
2 15g supplements of L-glutamine per day
2 TBS of honey 15 min. before rad., 15 min. after rad., and 6 hours following (taken before treatments begin just to get used to the taste)
2000mg fish oil twice per day (to help increase appetite)

Jen

I do not know how I could have missed your intriguing posts. No need to apologize for wanting to avoid a PEG. I have ignited fiery threads here that have been closed down due to the brutal attacks on my sharing that I was as proud as proud can be on avoiding a PEG and awarded myself imaginary medals & heroic status. It's just a difference of opinion on an elective procedure and not surprisingly everyone thinks what they did was the right thing. Your diet sounds right on the money. I went through all my radiation and chemo just on Ensure. I wish you every success.
Charm

Jen

Also I should note that I like your doctor's marathon analogy,
I finished four of them with my best time of 3 hours and 15 minutes. I used to quiz my medical team when they would use the marathon analogy only to find that only I had run them.
It is a good comparison however.
Charm

Jen,
I would drink Ensure Plus rather than Ensure. It's about 350 calories per can so you need less cans and in my opinion tastes much better. I would avoid the strawberry flavor. IMO it is awful. Vanilla, coffee and butter pecan were my favorites. I managed on about 1500-1800 calories a day with no peg and only loss 5 pounds, but I'm only 5'5 and 120 pounds.

Take care,
Eileen

Better yet drink Carnation Instant Breakfast VHC which has 560 calories in the same size can. Yummy vanilla is their only flavor!~!~ lol

I drank them all--Boost, Ensure and of course Carnation VHC. I grew to like Carnation, when I was able to eat and had a couple of cases left over I used it in my coffee. I also liked the fact that I ordered it online through Amazon (accessed through OCF) and it would miraculously show up on my front porch.

In fact, that's how I order my dog food--it's great getting 30 to 60 pound bags dropped off at my house

Stay strong

Thanks to everyone for the diet tips! I looked online for ensure and it didn't seem cheaper than buying it in the store. When I get sick of the ensure I might try ordering that carnation stuff from Amazon.

In the meantime...an update.

I finally have a treatment plan. It seems they're doing a lot of high dosages of stuff "because I'm young and can handle it."

In reading other folks signatures my upcoming course of treatment seems pretty standard, but let me know your opinion on the following for someone with clear margins and no visible signs (per MRI and CT) of any cancer remaining after this last batch of surgery:
***33 doses of Hi-Art IMRT, up to 66 Gy in my scar area. Areas to be hit by radiation: both sides of my neck and all of my oral tongue down through the lymphnode drainage area, while specifically avoiding my right check salivary gland and larynx.
***Concurrent doses of Cisplatin, 3 times, 100mg/m^2 each

The plan now is to start chemo Monday (12/21) morning, immediately followed by the first dose of radiation. This is all tentative on them finishing my radiation program though. I think my RO was saying that the computer design program liked to crash a lot.

At this point I'm just ready to get this whole thing started. The sooner I begin, the sooner I finish and can enjoy being in remission once again.

keep those calories (more the better!!) going down and good luck.

Stay strong

Jen,

Don't underestimate how important nutrition is. It would definitely be great if you can avoid the peg tube, but if you start losing too much weight you should definitely consider it. Also, my Mom's Cancer Center (in Philly) did a great job of monitoring her blood counts and her nutrition, which I truly believe made a huge difference. Before she started treatments there, her Vitamin D levels were extremely low so she needed to take supplements.

I definitely agree that, although unpleasant, it's better to over-attack the cancer than under-attack it. Make sure you stay hydrated sufficiently too. Usually you can get hydration treatments right in the hospital via IV. Very important (especially when getting chemo).

Good luck with everything.

Jen

Keep the Faith. Your TX plan sounds reasonable, hardly over the top (this from the perpective of a two time cancer with 96 Gray radiation, 8 Erbitux and 3 carboplatin chemos). I used Ensure Plus because it tasted better than Carnation VHC plus did not trigger as much mucous. It is doable. And you can do it.
Charm