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)))