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Newbie of tongue cancer

tongue8ks
Posts: 7
Joined: Feb 2014

I was diagnosed with T2 tongue cancer right before Christmas.  For the first  month all the doctors I saw were saying radiation and possible chemo, which the next Dr I saw said I didn't need.   Then after a series of events, mainly me getting the flu and having to postpone all the appts I had made.   I had to see yet another new Dr and he said I did not need RT, but surgery. So I am scheduled for surgery mid March.  Talk about a total change of direction.   I am fortunate that I have a medical back ground and lots of family support.  But even that did not prepare me for what is just the begininng of this journey.   After all the posts I read, I look forward to getting the support and advice I will need as I go down this path.

debbiejeanne's picture
debbiejeanne
Posts: 2293
Joined: Jan 2010

well, its always good to get a 2nd and 3rd opinion so glad you did.  my cancer was of the larynx so can't help you with surgery info but wanted to welcome you to our family and say we'll be here to cheer you on as you travel this road.  it is no cake walk but we've been thru it and survived and so will you.  come often and bring any questions you may have as none are off limits.  its wonderful that you have a good support system as that will be crucial.  let us know how surgery goes.  will be praying for a smooth recovery.

God bless you,

dj

CivilMatt's picture
CivilMatt
Posts: 2866
Joined: May 2012

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

jcortney's picture
jcortney
Posts: 406
Joined: Sep 2012

I was SQ, BOT, Stage 4 (lymph nodes) HPV+.  First Ent said surgery, second ENT (Top TORS Surgeon in Dallas) said surgery, maybe.  Third opinion (MD Anderson Houston) no surgery (my lead doc what the Head of Surgery in the Head and Neck Department).  Went back to Dallas, talked to the ENT TORS Surgeon.  He had me meet with a MedOnc and a RadOnc.  The three of them put their heads together and recommended no surgery.

So, Chemo/Rads (using the MD Anderson protocol) later here I am.

All I can say is make sure you are really comfortable with your team and you think you've seen a top doc of each of the disciplines.

Good luck to you and as you progress don't be afraid to ask any questions.  The folks here saved my butt more than a few times.

Joe

wmc's picture
wmc
Posts: 300
Joined: Jan 2014

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

thennies61's picture
thennies61
Posts: 173
Joined: Jan 2014

Mine was tumor under tounge which they found to be cancer in Nov did pet scan then cat scan they operatrated on Jan 30 and was told evrything right now looks clear.I still have a long road to go as I'm waiting to get out of rehab learning to use feed tube and now suckun tube plus speech as they removed part of tounge and rebuilt with muscle from thigh.But stay positive and keep smile everyday does seem better and as my doctor told me thing will heal start to heal quickly..

jim and i's picture
jim and i
Posts: 1569
Joined: May 2011

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

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

Sorry that you have to join our club, but as clubs go, this is the best around....

I'd definitely get opinions from MD's and facility expereinced in treating your cancer....

Myself, I'd be skeptical and cautious of a treatment plan of only surgery...

 

I'm in no way a qualified MD, but I want to make sure that I get treatment that hits it hard with everything up front without having to go through it again if possible.

Best,

John

PJ47's picture
PJ47
Posts: 332
Joined: Sep 2013

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

 

 

hwt's picture
hwt
Posts: 1848
Joined: Jun 2012

Also sorry you had the need to find us. Lots of wonderful people here. Mine was cancer of lower jaw, 19 hour surgery01/2012 followed by Cisplatin & radiation at Barnes in STL. Recurrence 08/2013 around carotid artery. SBRT at Mayo Clinic. that tumor is now gone but another appeared on opposite side. Currently doing Erbitux and Taxol in attempt to rid any microscopic cells then back to Mayo for more SBRT on newest tumor. Hardest for me was initial IMRT rads. Stay on top of hydration and nutrition. Prayers that you have an easy journey.

Candi in St Louis

tongue8ks
Posts: 7
Joined: Feb 2014

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.

CivilMatt's picture
CivilMatt
Posts: 2866
Joined: May 2012

tongue8ks,

To find an explanation to most of the abbreviations we use go to  the Superthread and all the way down at the bottom you will find a list.  The Superthread is at  the top of the H&N page.

Matt

lorig01
Posts: 67
Joined: Jul 2012

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.   

debbiejeanne's picture
debbiejeanne
Posts: 2293
Joined: Jan 2010

tongue8ks, going thru this tx pretty much takes up all your time and effort so if you find something that interests you and you are actually up to doing, then DO IT!  you deserve that.  i think we should all take time to play in the snow, but its too cold for me.....burrrr.  i'm so happy for you that you have such a great family and support system.  that is a critical part of getting thru tx.  i'm sure with your positive attitude and wonderful family you will do great.  it will still be rough but those two things make it a little better.  keep us posted on your progress.  sending you prayers.

God bless you,

dj

jcortney's picture
jcortney
Posts: 406
Joined: Sep 2012

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
Posts: 7
Joined: Feb 2014

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.

debbiejeanne's picture
debbiejeanne
Posts: 2293
Joined: Jan 2010

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
Posts: 7
Joined: Feb 2014

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!

debbiejeanne's picture
debbiejeanne
Posts: 2293
Joined: Jan 2010

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

PJ47's picture
PJ47
Posts: 332
Joined: Sep 2013

I had a partial glossectomy TORS (robot) and a left neck dissection at Vanderbilt hospital 4 months ago.  They took out 22 lymph nodes and only the one we were aware of had scc.  I can tell you that I was told prior to surgery that I would be in the hospital ICU at least 5 days and would possibly have a trache.  I stayed 3 nights and perhaps because they had an IV in did not suffer dehydration.  I also had an NG tube which they removed that and the drain before I left.  It sounds to me that they did not keep you long enough to ensure you were stable.  That is in my humble opinion.  As far a beting up yourself about the PEG tube, it is probably better to have that done after surgery and before radiation if needed.  There have been cases of the cancer beeing seeded into the stomach if done prior to surgery.  Hope all goes well for you now.

PJ

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