Newbie of tongue cancer

tongue8ks,

Welcome to the H&N forum, so sorry you find yourself here.

My cancer diagnosis was a Christmas present of 2011and I opted for surgery, rads and Erbitux for my stage IVa, scc, bot, 1 lymph node & hpv+ cancer.

I am not sure what your final plan for eradication is, but it sounds like you have a good background and lots of help to figure it out.

Don’t be a stranger we are open 24/7, even in the wee hours there is normally someone to respond to posts.

Good luck,

Matt

Welcome and sorry you need to be here. Mine was supraglottic SCC -T3 N0 M0 surgery all the way for me. My tounge was OK but I lost my larynx and had neck dissection [leval II~V]took out 86 glands, Oct 2013.  It is an interesting road to go down, but with a good attitude and support you can not only go down the road, you can beat it. Keep your spirits up and you will get through this.

Bill

Welcome to our family. My husband is the cancer patient. He was diagnosed in May 2011. Because of the size and locationof the tumor surgery was not an option for Jim. His treatment was 40 RADS, 2 Cisplatin and 3 Erbitux. ZH ehad a PEG tube before treatment because he had already lost 40 lbs. The best recommendation I can give you is go to a large cancer center and pick doctors that you feel you trust.

Debbie

i had stage 3 BOT with one lymph node.  Decided on TORS and neck dissection.  Ended up with differing opinions on what course of treatment needed after that and chose radiation only.  Now have 3 different opinions on when then follow up PET/CT scan should occur.  Ulitimately you have to decide what is best for you after listening to different medical experts that have different training, bias, and approaches to treatment.  I too have a medical background and sometimes found it helpful and sometimes not so helpful .  

Best of luck to you in your journey and know you are never alone.  Make use of all of us,

pj

tongue8ks said:

More I read the more questions I have

Not feeling good enough to do the things that I would normally do before a major surgery, unfortunately I have had many, but like clean my house, cook and freeze food, organize all the bills, financial stuff.  But I can't concentrate enough to do mental stuff and forget the physical stuff.  I live about 50 miles outside of Pittsburgh, and we have had a wonderful Winter with snow, so actually went outside tonite and shoveled the sidewalk.  It was the most fun I have had in weeks...playing in the snow.!  So instead of taking care of what needs done I have spent hours, cant even imagine how many, on researching and reading everything I could find on the type of cancer I have.   I learned so much, but the biggest thing was that there is nothing that is clear cut.  I mentioned that I have a medical background, which is really varied.  But the one thing that I have no experience in is oncology.  So much of this is all new to me, even reading some of the abbreviations of the posts I have read I'm not familiar with, but will learn.  So at this point my plan is to go back to the surgeon I saw that recommended surgery.  But this time I will go prepared, not only with a list of questions, but with my son...my "medical rock"!   He is an EMT so he has some medical knowledge, but what he lacks in knowledge he makes up for in personality, connections and love for his Mom.  My husband was with me the first visit.  He is...he is my everything, except anything medical!  After 30 years together and being around my father who was a "family doctor" for 35 yrs and often was forced into actually doing some kinds of medical procedures in our secluded river home, you would think that he would have gotten at least some medical knowledge...even if by osmosis!!  He hasn't..and I don't care.  I also have a great daughter.  So they are the reason I am going to fight so hard to beat this.  I am blessed to have so much to fight for.

The one thing that a cancer diagnosis gives you is that you can do whatever you want with your time and not feel guilty.  Your "job" right now is to do whatever you need to do to get through this and heal.  So playing in the snow is an excellent use of your time.   I am 1.5 years out of tonsil cancer and feeling great. This is an excellent site to get info about head and neck cancer. I learned more from this site than from my doctors.  You are lucky to be near Pittsburgh. There are a lot of great hospitals there and the one of the leading head and neck doctors is in Philadelphia. If you are a candidate for TORS, (robotic surgery), Dr. Weinstein in Philly pioneeered the procedure for head and neck patients.  I am in Houston and my Dr trained under him.  Glad you are enjoying the snow.  I spent my childhood in Pittsburgh and have relatives in West Newton PA.  Beautiful in the winter and fall.   

tongue8ks said:

More I read the more questions I have

Not feeling good enough to do the things that I would normally do before a major surgery, unfortunately I have had many, but like clean my house, cook and freeze food, organize all the bills, financial stuff.  But I can't concentrate enough to do mental stuff and forget the physical stuff.  I live about 50 miles outside of Pittsburgh, and we have had a wonderful Winter with snow, so actually went outside tonite and shoveled the sidewalk.  It was the most fun I have had in weeks...playing in the snow.!  So instead of taking care of what needs done I have spent hours, cant even imagine how many, on researching and reading everything I could find on the type of cancer I have.   I learned so much, but the biggest thing was that there is nothing that is clear cut.  I mentioned that I have a medical background, which is really varied.  But the one thing that I have no experience in is oncology.  So much of this is all new to me, even reading some of the abbreviations of the posts I have read I'm not familiar with, but will learn.  So at this point my plan is to go back to the surgeon I saw that recommended surgery.  But this time I will go prepared, not only with a list of questions, but with my son...my "medical rock"!   He is an EMT so he has some medical knowledge, but what he lacks in knowledge he makes up for in personality, connections and love for his Mom.  My husband was with me the first visit.  He is...he is my everything, except anything medical!  After 30 years together and being around my father who was a "family doctor" for 35 yrs and often was forced into actually doing some kinds of medical procedures in our secluded river home, you would think that he would have gotten at least some medical knowledge...even if by osmosis!!  He hasn't..and I don't care.  I also have a great daughter.  So they are the reason I am going to fight so hard to beat this.  I am blessed to have so much to fight for.

Especially in Oncology.  That being the case I'm sure you know that your journey will most likely include a full treatment of RADS and perhaps Chemo also.  The really good news here is you have one of the top Head & Neck centers in Pittsburg.  I hope you are taking advantage of that.

My previous suggestion would still be at the top of my list.  Visit with a Medical Oncologist and a Medical Radiologist.  Figure out what will probably be in your future and decide who you want to be your lead guy/gal though out the whole process.  Someone needs to be the person in charge of your treatment and you have to really believe in that person.

You didn't tell us what your full diagnosis was, is it squamous?  HPV positive?  That's what the vast majority of us have seen/had and it has exceptional cure rates.

So, breathe, do play in the snow, you will come through this.  The folks here on this board are an amazing resource.  I can't remember how many times they were right on for me when some of my side effects were truly trying and were my cheering section all through the process.

Joe

tongue8ks said:

surgery coming too quick

My son and I went back to see  my surgeon yesterday. After seeing him 2 weeks ago and deciding that surgery was the better choice for me, I had many questions. Being told that they were cutting part of my tongue out,  was pretty scary.  As I'm sure everyone knows...medicine is not an exact science, and especially with this type of surgery.  I know from experience, that even the most common "simple" surgery can go horribly wrong.  So with all of the unknowns, and the complication of me having bilateral artificial titanium jaw joints, which I never mentioned before, there are many things that could go wrong.   So this is certainly not my first big surgery, but this time I am having a really hard time getting everything done before my surgery.  I know that a big part of that is I just don't feel good.  So trying not to stress about getting stuff cleaned, my big sis is coming from out of state, and concentrating on getting all my legal, financial and personal things written, printed and filed.

tongue8ks, slow down and take a deep breath.  if everything doesn't get done before surgery, maybe your sis can finish it while you recover.  she can do a little before she comes to visit and a little more once she gets home.  don't be afraid to let family and friends help you thru this.  you are already not feeling well and you have a big surgery ahead of you, you need to rest up.  i'm so glad your sis is coming to be with you, that has to make you feel a little better.  praying that surgery goes well and you recover without any problems and get home quickly.  for now, take it easy and rest up for the surgery.  we will be waiting to here all went well when you are feeling up to it.  God bless you.

dj

tongue8ks said:

Biopsy results tomorrow!

I had a partial glossectomy and radical neck resection done on 3-10.  I was sent home in 2 days taking liquid and pain meds using a 10ml syringe.   I Wasn't comfortable going home like that, but decided that that must be the way they do it and if other people can make it, then I could too.    I had great family support, some with medical training so I knew I would have lots of help.  Well it wasn't enough.. two days later my son literally picked me up and brought me to our local hospital ER.   I was so dehydrated they couldn't even get a line in.  I was there for 4 days.  They put a PEG tube in and taught me what to do.  By the time I got home I felt so much better having some nutrition and fluids.  The pain in my neck and tongue is much better.   I still can't swallow very well, and talking isn't as painful, but really tough.  I had to cancel my appt with my surgeon since I was in the hospital, so I go tomorrow to find out the results of the biopsy.  My son was able to find out that all 28 nodes they removed were clean!!  Which is huge, but I know there is more to the report than that...like margins etc.  So I will find out tomorrow.     When I think of how much it cost not only me, but my insurance company, not to mention how far it set me back with my recovery, having to be admitted and getting a PEG tube in...I should have stuck to my guns and had it done pre-op.  Oh  well you live and learn...that wont happen again!

sorry you ended up in the er.  hydration is extremely important while going thru tx.  you must make yourself drink even if you don't want to.  if you don't stay hydrated you will end up in the hosp again and again.  nutrition is also very important.  do your best to eat if you can and if not, be sure to get your nutrition thru the tube.  wonderful news about the nodes!!  praying you make it thru tx w/o many side effects or events.  please keep us posted on your progress.

God bless you,

dj