Hi everyone

A you all know, I recently had ny 2nd neck dissection, this time a radical one. This was because cancer had returned despite my first surgery showing clear margins and negative nodes.

Well, my surgeon told me that this time they found 20 positive nodes and I nearly fainted. I have tried to remain optimistic and my surgeon is hopeful that radiation and chemo will work. Obviously, it is a very aggressive tumour and he mentioned that they want to treat me with conventional radiotherapy instead of IMRT. That scares me as I know the treatment is more aggressive as well.


I have tried so hard to remain positive but it seems like everytime I get up, something knocks me back down again. Every little pain in my body now terrifies me as I think maybe the cancer has spread...since the surgery, my chest feels tight and I sometimes have shortness of breath but I have to say that all the muscles around my chest are still tight from the op.

My question is has anyone had extensive lymph involvemnet in their journey with this disease? And how do I get my happy back? I feel very lost today..I have to climb back up before treatment starts as i need all the strenght and courage in the world for that.

Thanks for listening.

Liza

Liza,

Don't be afraid of the conventional radiation treatments. Manuy of us here on the board went through treatment before IMRT was developed, and we have a good quality of life. The side effects of it during treatment in some are more extensive, but that is heavilyt dependent on the size of the field of radiation. Even using this technology today, is way different than just 10 years ago. I was nuked from my cheek bone to my collar bone equally, from three sides. Today they use a great deal more lead blocking to localize the field, so this is likely not going to be as bad as you think.

My lymph node involvement was bilateral.... that is as bad as it gets. You can imagine that with a unilateral primary, how late a find I was to have a bilateral cervical node metastasis.

I am not fond of surgery only solutions except in really early finds. This cancer has a tendency to put out a "field" of corrupted cells around the primary. Given that, having a surgical margin that is clear, doesn't cut it for me anymore after watching so many in recurrence, which I think is actually a misnomer, and they should actually call it incomplete primary treatment. Those cells outside the margin are not yet cancerous, but researchers who are trained heavily in genetics can detect the changes taking place in the cells that will later cause them to cascade into malignancy down the road.

Please ensure that at this point in time they have scanned all of you including your lungs. It takes a long time for that distant metastasis to take place, but you want to be sure of everything that is going on right now.

As to getting your happy back.... this group here is pretty adept at keeping people emotionally supported. I think if you lean on them, they will help you with your spirits.

Liza, I had extensive surgery to remove nearly half my tongue and to remove "lots"(my surgeon's words)of lymph nodes. My cancer was stage IV. I had 7 weeks of radiation with three chemo sessions spread out during the radiation. I had to be hospitalized again after the radiation and chemo because my blood count was too low (transfusion)and I wasn't getting enough nutrition. That was August of 2009. I have been back to work full time now for well over a year and the last time I saw my chemo doc I heard him tell his nurse, "she looks like a million bucks!" You will get through this. I know it is hard to be positive, but you will find your "new normal." Rely on the wonderful people here. They will give the best support in the world. Good luck to you and God Bless!

Thank you Brian and Zengalib..I am so happy to have you guys pick me up every time this illness kicks me in the guts. It sucks to have this disease! But, in saying that, it has also brought me new friends who give me incredible support.

Brian, you are right with surgery only treatment. After my operation, I did a lot of research on recurrence rates and found that in cases of buccal mucosa cancers, surgery alone showed an increase in recurrences while combination therapy had better prognosis.

So, here I am again trying to get my battle armour on and fight this with everything that I have. I am not looking at prognosis anymore...there is ample proof here on this site that shows me people survive this cancer all the time...and as mentioned above, I will find my "new normal" and my happy will definitely be back :-)

Liza

So glad you found this forum Liza.
You know you have the support of a lot of people here and many of them are fellow Aussies.
You also know I have no experience with your upcoming treatments however you also know I will support you in any way I can.
Talk again soon.
Love and {{{{hugs}}}
Gabriele

Liza! My Aussie Girl! All you had to do to get your happy back was go window shopping for a "special" male friend! Or think of me prancing in the mountains in my loin cloth and animal skins with the natives b*tching about the white people stealing our lands! (sorry private joke and FB referrence that may offend those not involved in the conversation...and I'm a d*** so that may offend people too)


Fear, anxiety etc...is so very natural my dear and it seems like I must do a webinar on how to uplift and guard the spirit as there seems to be many on these boards struggling with it.

Everyday...EVERYDAY! I have to fill my mind with inspiration, positive thoughts and energy. I do this by reading books like "Mans Search for Meaning" (at least 10 minutes before I pass out due to exhaustion everynight) listening to upbeat, positive music (which is hard as I'm a child of the 90's alternative music movement that was depressing as all hell..oops I mean h*ll) and surrounding myself with outgoing, uplifting, positive people that push me to go above and beyond what I think I can do...or deal with.

Your spirit and attitude can light up the darkness that surrounds you and keep shining no matter what life may try to do to extinguish it. If you are not in a place you can do this yourself, seek help either chemically or counseling...by any means possible.

And of course if thinking about me in a loin cloth and animal skins prancing in 3 feet of snow with native americans doesn't light up your darkness I definitely suggest chemical assistance!


Keep smiling, and keep my room ready for me Down Under!

Eric

Eric!! I just visualised you prancing around and chuckled my lil' heart out!! And window shopping for that special "male" friend is still a possibility..I think that would definitely cheer me up especially in the style department :-)

Seriously, you are such an awesome person, a smart a.. sometimes but awesome regardless!! Thank you again for coming to my rescue when dark thoughts hover in my head..you along with others on this site light up my being with positivity and kindness.

And, the room is ready!! Just let me know when you are coming to visit..and the fridge will be filled with yoghurts for you coz you can't drink beer anymore! And we have great beer too..shame :-)

Hugs

Liza

Hey lizzy - I know it's scary sh*t - and getting kicked while you are trying to get back on your feet is unfair. I've always tried to be healthy and don't drink, smoke, dont do drugs, and still I wind up with oral cancer - and I'm HPV neg. Yet I see so many people ruining their bodies with little repercussion - it's disturbing - but that's life - this disease plays no favorites. everyone here has given you funny, and helpful advice. I'm sure there is nothing I can add other than my best wishes to you - you are young and strong - you can do this.

Hi Cheryl

Thank you for your wishes. I too can't understand how this illness affects so many people who have a healthy lifestyle. Yet, as you said, people abuse their bodies day in a day out and they seem to never get sick. It sucks! I hate feeling unwell at the best of times and I don't know whether this is psychological but i feel like crap now..tired, anxious and have weird feelings in my tummy!

I wish you all the best for your upcoming treatment too. When does yours start? I have an appointment with the radiologist next week so I assume it'll be a couple of weeks after.

Take care

Liza

Liza, you will get thru this. It isnt going to be easy but you will get thru it. I know you are afraid and that is only natural. We all fear the unknown.

Try to stay busy and do things that will keep your mind occupied. It will help pass the time productively so you dont sit and worry. Our minds play some nasty tricks on us when we worry, it starts the 'what if' thinking which isnt helpful at all.

I wish I could help ease your fears. Just know, you are not alone in this. You have lots of friends here and on FB who are cheering you on. We are here to lean on. Dont worry, we are in your corner and will help cheer you on.

Be well my friend!!! (((HUGS)))

Christine...thank you for being you. You help me more then you'll ever know. You and Charm, Jim, David...Cookey..man you guys really keep me sane, if I can even claim sanity. Vanity sure, sanity, not so much.

I think I need a hug this evening.

Love you guys

Eric

Christine, I agree with Eric..thank you for being you. You are amazing! I know I will get through this, I have the strenght, it's just been beaten down a bit but it will pop back up!

Eric..a big Aussie hug for you my friend!!

Love

Liza

hey liza
i know i can't put your mind completely at ease. i'd do anything to make that happen if it were possible. but you've been strong before. i'm convinced you can do it again. being hit when you're down is never fun. i've experienced it on a lesser scale. and it's always hard to get back up again.

but you're a great person. even when you knew about this recent diagnosis, you had the kind heart to welcome me and wish me the best. that tells me you are a strong, compassionate person. i have faith that good things do happen to good people. and this is something my mum told me which helped me when i was in some darker times.- it's that, 'god' only throws things at you, that he thinks you can handle. I think that statement has merit when i see how many good people have to fight for thier existance with this disease. they have the strength and willpower to beat something like this. it's a big test, but one i believe you're up for.

all the best mate. i'll have my fingers crossed for you most defintely. good luck!
dave

Dave

For someome so young you are so wise! Thank you for the kind words. I am so touched by the support I have received.And I , like your mum believe that God throws things at people only if they can handle it, but geez, I wish He didn't trust me so much!! Mother Theresa said that and I thought how true!!

I have to get through this, there is no other option. But, as a human being, there are times when I have to give in to my emotions and at the moment, I feel like crap!! But, hey, tomorrow is another day and I will face it when it comes!

How are you doing now? What side effects are you experiencing from your radiation? And do you know how many nodes were positive?

I thank you again for your support. Tell your mum she has raised a fine young man, one she should be very proud of.

Take care

Liza

Anytime .that's fully understandable & the emotions can be unbearable !I have very little saliva but I assume that goes for almost everyone here.I can eat many foods as long as they are 'moist'.i have no chance on dry food.i use bicarb & salt mouthwashes after every meal & I use tooth moose & fluoride to look after my teeth because the saliva is bad quality..at this point in time I'm very lucky & my speech is very good.I've joined a gym for some rehab & returned to outdoors work as a roofer where I'm not what I was previously,but am progressing well.they took about 30 glands.from memory there was 3 or 4 that showed up cancerous.it was moving very quick so a matter of weeks could have made it alot worse.so I'm very thankful that I got in early for my biopsy!(there was a cancellation to put me in a month earlier)-which I nearly didn't take!I was lucky.all the best mate.we're all here to support you all the way!look after yourself. P.s-sorry there's no spacing.I'm writing this from my phone

Hey lizzy - I know the feeling of being nervous and upset. I was a basket case when I first found out - and the weeks between my CT and MRI and then ultimately meeting my dr. were filled with what ifs... No one wants to face their own mortality. Once the surgery was booked and I had a date to focus on - I left most of the worry behind. For me having something concrete to plan for, helps immensely - though I must admit I would have preferred the surgery sooner. Not to say that I didn't have my moments of panic - a lump in my neck I discovered was one of those moments - (it was the one affected lymph node - I now know that ) I had a few days of freak out panic because I knew it was spreading. But it and 39 of it's friends are all gone - along with the tumor - so I'm feeling more optimistic. Definitely not looking forward to my rads and chemo but
I'm glad it's happening I guess. I met with my RO yesterday and everything has been set in motion. I have an appointment Friday for teaching, and fitting for my mask. I have another appointment Monday for something else - and a CT next Friday to check out my nodes - the RO is considering doing radiation bilaterally as a preventative measure. A little leery about that but if it's recommended I will go with it. I also have to see their in house dentist and have a second CT so they can target where they want to place the rads. I'm told likely 2 -3 weeks to start date? You said you are seeing your RO in three weeks? I would see if they can move it up - it may help with the anxiousness. Sometimes doing something about the situation helps.
I'm sorry you're feeling so crappy. I know it's terrifying - but try to focus on other things. I met a woman in the hospital - she was one of the three roomies I had over my ten days - she recommended a healer to me - I called her when I got home and set up a session and it really helped me emotionally. I'm not overly religious - but I do believe in god - and medicine - so I figured it could not hurt - we worked together for an hour and after that I've felt way better. Maybe there is someone or something in your life that can help in a similar way - not necessarily a healer - but someone you can truly talk to - they can't alway give you advice but sometimes it really helps to have someone listen.
No to say that this forum isn't an amazing place - because it is - but sometimes it's nice just to have someone listen to you...

Not sure if I helped at all but take care - let me know when you are going to start chemo and radiation - it sounds like it will be close to my dates. Blessings and good thoughts to you.

I am new to this site and ALL of you people are a huge inspiration to me. It is very easy to just sit and feel sorry for yourself, but that truly doesn't accomplish a thing. I also am waiting to get my radiation scheduled -- get fitted for the dreaded mask and the RO wanted a few new CT scans. Had my remaining lower 3 teeth removed last week so just waiting for the gums to heal a bit before we put them thru hell again.

But just wanted to shout out to all of you that I am so happy I found this site..... I didn't find it until AFTER my surgery, but it has given me so much good info and now I know what questions to ask. Between dx and surgery it was all a blur for me and the hubby. was diagnosed just before the holidays and litreally got the first available surgery date (January 3, 2011)

You guys give me hope.
thanks for that.

Ingrid K
Chicagto, IL area

Hi Ingrid, welcome to OCF. Its best to begin your own introductory post so we can get to know you easier. This way it wont take anything away from the original person who needs some support (sorry Liza). I see you did make a signature, very good!!!
Im looking forward to reading more about your situation. Its ok, we are all in this together and help each other.


Liza, I hope today is a much better day for you. I know its morning where you are, so Happy Friday!!!

Liza, love from me, and to you & Eric ((((lots of hugs)))).

Call any time day or night if you want to chat, well....keeping in mind WA is 3 hours behind Vic...thats why they refer to WA as 'wait awhile'!! {Although someone said to me once - 'Worth alot'!!!]

Lotsa love,

Me
xxxxx

hi i'm new to this but i have a question. i have had oral cancer twice so far. I just finished with radiation and chemo in mid january. I have had some abscess and infections that the docs have taken care of but now there is a new lump they can't figure out. they believe its either teeth abscesses or that the cancer is back again. how common is it for it to come back so soon after radiation and chemo. they also removed a large tumor from my jaw in october and removed half my tongue for the second time. i should be getting biopsy results soon but i am so worried and confused. how could this happen so soon.

Hi Sam! Small world, huh!!! Im glad you have joined OCF. Let me first help you with how to navigate this site. When you want to make a post, its only necessary to post it once. Give it time and you will get responses. Next you should begin your very own post so that you get the most responses. This thread was started by someone else so this takes away from their questions. To make your own brand new post click on the topic you want to put it under then click new post and type away. If you need more help just say so!!!

The answer is unfortunately yes, cancer can come back very quickly. Ive had it 3 times in 3 years. Ive seen people have a recurrence within a couple months of finished radiation. All it takes is one teeny-tiny cell missed by the radiation. I hope its not a recurrence, we both know how those are not easy to manage. But it can be done!!!!! Thats one more thing you will learn here, never give up even when things look bleak, keep trying to be positive.

"Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all."

-Dale Carnegie

Hi Liza,
I'm new here. Don't worry about "getting your happy back" It'll come. I had tonsil cancer 6 years ago (stage 4) and survived. (4 yrs after open heart surgery) Been through the ringer. I'm glad for this site and wish I had known about it then. I will say that even though the experience was horrible at the time, the 100's of people (patients and families) I have been able to help through the Wellness Community and amoung clients and friends made it worth it. The changes in me as a man would not have happened nor could I have helped others as often had I not gone through the ordeal. I can honestly say that even though I hated the experience at the time, I would do it again.
You hang in there and if I can help in any way (like what you can try eating at different stages of the radiation and what to avoid, just ask. Big suggestion!!! Keep a journal maybe online in a blog. I really wish I had done that. Helping others through your experience will get that "happy" back faster than anything else. Right up there with hugs
Praying for you.
Take care,
Chris

Ingrid, you sound like a good fighter. Hate to say wewlcome to our home, but it's the best place for understanding people. Most are knowledgeable too. That is a great question Sam. But it happens and we just have to accpet it and go on with treatments. It's possible that in the future, you will have reactions to a few things that you have been thru. We play a crazy game with OC but can win the battle.

Hi Chris

Congratulations on being a 6 year survivor!! Wow, I am so inspired when I see or hear of survivors like you :-). And thank you for your advice, I certainly am looking at cancer as something I needed to experience in order to help others. As a nurse that has always been my motivation, but I am thinking that maybe I need to shift my career into something that involves this illness.

My treatment will begin in about 3 weeks. The radiologist wants my neck to heal a bit more before I undergo radiotherapy. Had a CT scan the other day which showed no signs of mets anywhere in my chest or abdomen..so relieved!! Even though the tx plan scares me, I am also looking at it as a gift from God to aid in my healing. Guess, its the old saying, 'no pain. no gain'!!

The people on this site are amazing...I really don't think I could've got through the early recurrence fear factor if I didn't have all these guys lifting my spirits up. And now, it looks like you will be involved in helping people on this site as well!! And you can bet that I will be asking heaps of questions regarding eating and pain management!! Not having taste buds is such a sad thing for me as I am such a foodie! Got to believe my taste will come back sooner or later.

It's nice to meet you Chris...keep up your good work and thanks again for your post. Have a lovely day :-)

Liza

Oh how I wish my taste buds would come running home. I guess I am thankful for being able to taste the 1st bite. It lets me know I'm not chewing and old shoe that was discasrded. The burning of the mouth never lets up but you can learn to ignore it with some magic Mouthwash numbing doing it's job. One thing for sure. As long as we feel the misery, we know we are alive.

@ Chris and Liza: Hi friends!!!! Love to you both!!!

Chris, I am so happy to see you here! You have so many positive things to share.

Thank you, again, for your suggestions and the doctor recommendations. I have new doctors lined up...Miller or Ahn for radiation if he needs it. He doesn't want to resume chemo. It isn't going well for him and he's losing weight again. Note to self...call the acupuncturist if he goes back into treatment.

xoxoxox to all!

Lizzy,
As you get further into your radiation treatments, if you keep us posted, I'll be glad to share what I could and couldn't stand to eat.

Sandy,
Thanks for the welcome.
My pleasure. Call the acupuncturist anyway. It would be good just to boost his general immunity
I had Hesselgesser, but his partners, Miller and Ahn (client of mine) are both great also.

[quote=Lizzy67]Hi Chris

Congratulations on being a 6 year survivor!! Wow, I am so inspired when I see or hear of survivors like you :-). And thank you for your advice, I certainly am looking at cancer as something I needed to experience in order to help others.

I don't know if you can get it there but check a movie called "The Doctor" with William Hurt. It is right up your ally
It's one of my favorites (true story too)
Chris

Liza, here is a list of easy to eat foods. I found during radiation that texture played a huge part in what I ate. Since you are not from the US, the things on this list might not be something you normally would eat. Hope it helps!

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=94621#Post94621

@Christine, thank you for the easy to eat food list. Sure do appreciate it!

@Chris, I will look out for that movie...I have heard of it but never watched it.

Wishing you both a lovely day xoxoox

That's a great list of easy foods to eat (and yummy, too), Christine! Reminded me how my son use to like the softly scrambled eggs with cheese. The whole list is making me hungry and I don't even have sore mouth problems!