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What to Expect with Tongue Cancer

Kell82's picture
Kell82
Posts: 16
Joined: Dec 2012

My dad has just been diagnosed with Tongue Cancer. Cancer location is at the back of the tongue. We are not sure yet if it has spread. Can anyone tell me what our family should expect with this kind of cancer? Just trying to gather all the information I can at this point. Thanxs

ditto1
Posts: 630
Joined: Mar 2012

Welcome to our group, sorry your Dad has a reason to be here but I assure you he can get all the cyber hugs, and support as well as information right here day or night. I was dx with Base of Tongue in March, utilmately I had 33 RAD treatments 2 Cisplaton and 9 Erbitux chemos. I did not use a peg or port but most do. It was not an easy journey but doable. Lost 33 lbs and all my hair but as I type this to you, I have my hair back (except beard and mustache) weight is where I should be and in August I was advised I was NED (No Evidence of Disease). I have some aches and pains and will have a PET scan in December so dealing with the upcoming Scanxiety as we call it on this site. So again welcome and I assure you, that you will be hearing from many other great folks to help you and your father thru this.

MarineE5
Posts: 755
Joined: Dec 2005

Kell82,

Welcome to this site, sorry you have to be here at all, but it is a good site to find answers to the many questions you will have in the near future. What to expect? A lot of that depends on the Staging and Treatment to follow, so I won't flood you with a bunch of information until you find out soon, as to the actual stage of your Dad's cancer.

The plan of attack may come with several options to fight cancer. Your Dad and family will decide what the next move will be. Hopefully, your Dad and family will not have to wait too long to find out the results of all the tests and he can begin to plan his next move.

I am sure your mind is traveling at warp speed right now, I know I was first frozen in time for a short spell, then my mind was racing. As mentioned by Ditto, there are a lot of helpful people here to answer your questions, night and day, so shout them out to us.

My Best to Both of You and Everyone Here

Mikemetz's picture
Mikemetz
Posts: 346
Joined: Nov 2011

Sorry to hear about your dad's diagnosis--that certainly is the bad news. The good news is that you found the right place and the right group of people, at the right time--as the whole thing is starting.

The bad news is that we've had a number of newbies recently join the club that no one want to be a member of. The good news is that your dad will have a group of people more or less in the same boat with him, and more folks to share the experience with on a day to day basis, if he chooses to do that.

The bad news is that there's a lot of misinformation out that that can scare the crap out of you and your dad--even if you know the right questions to ask. The good news is that we have a SUPERTHREAD on this board that has a great archive of important questions and solid answers. My advice would be to start there, and share all of that with your dad.

The bad news is this will be no walk in the park for your dad, or you. The good news is that the survival rate for HNC is very good. So if he sticks to what his doctors say, and keeps up his spirits and strength, he has a very good chance of being around later to write responses like this to newbies at that time.

Best wishes for both of you, and anyone else who will be part of his support system.

Mike

CivilMatt's picture
CivilMatt
Posts: 2982
Joined: May 2012

Kell82,

I had Stage IVa, SCC, BOT, HPV+, spread to 1 lymph node. I had surgery to remove spot on tongue and Jugular Vein dissection to remove lymph node. I had 35 rads with 8 Erbitux doses. I had a PICC and a PEG for infusions and nutrition respectively.

It hasn’t been my best year, but I made it through only slightly beat up. I am not the bravest warrior among the H&N family, but I made it through (and so will you). There are a few side effects, but no guarantee on which hit you hard and which bounce off.

Soon your team will reveal your plan and give you a heads up on what to expect. If you ask here you will get the unadulterated facts straight from the horse’s mouth (we aim to please).

For now try to relax, take someone with you always (more ears) and get prepared for a ride.

Best,

Matt

luvofmylif
Posts: 344
Joined: Sep 2012

My husband was diagnosed last July with SCC at base of tongue also. We have been through alot since then and have learned alot. You will be glad to be on this site. It has been a sort of security blanket for me along the way because it is all very scary.

Take things one step at a time. During the diagnostic and planning phase be prepared to ask alot of questions and to learn alot. I read alot about this particular kind of cancer and although doing that probably wasn't always a good idea, I feel it helped me to ask informed questions about my husbands treatment and choices for treating the cancer.

There is gonna be alot going on and if you are like me, you will be in shock for awhile. I think I still am. As others have said this cancer can be cured.

Joan

mikeev
Posts: 19
Joined: Jun 2012

I was diagnosed with Tongue Cancer on May 17th 2012,this was also at the back of my tongue, after seeing specialist it was decided to have 35 Radiotheraphy doses over 7 weeks and 3 chemotheraphy doses in weeks 1,4 and 7.

prior to starting treatment I had a PEG fitted as we were not sure if I would be able to eat properly, this was the best thing that happened as it turned out as I could only eat soup during the treatment.

I finished my treatment early August and could still only eat soup, my speech had pretty well gone, during the next4 months I have started to eat properly (Steaks,Pies and a lot of desserts inc custard)I am now starting to put on weight( Lost about 40lbs when started treatment)and my speech is gradually coming back.

During the treatment and until about a month ago I was getting frustrated and depressed that I could not eat or talk properly (this is probably worse for your partner because they cannot help you, once I was eating a reasonable amount of food I insisted on them taking my PEG out as this was the only way that I could see of improving my eating (I had nothing to fall back on if I did not eat).

My wife said she felt alone during the time of my treatment as I could only concentrate on getting through to the end of treatment and also during the recovery period (Still ongoing), I could not talk to her about how I was feeling until very recently as you don't want to upset them to much, It was always in the back of my mind that treatment may not work and that I would never eat or talk properly again, even after having had 2 follow up consultations that show the Cancer has gone and did not spread to anywhere else.

You will get very frustrated and anxious about whether the treatment is working, fed up of attending clinics for daily Radiotheraphy and consultations, but keep in there and hopefully everything will go ok.

ITS A HARD ROAD TO FOLLOW!!!!!!!

Mike

Kell82's picture
Kell82
Posts: 16
Joined: Dec 2012

Dear mikeev,

Thank you so much for all the information on your personal journey. My family and I are still in the stage of shock and disbelief. Just hearing your story helps me to understand the hard road we have ahead. I'm so glad to hear that your cancer is gone!! Gives me great hope that my dad can beat this.

Kell82

Kell82's picture
Kell82
Posts: 16
Joined: Dec 2012

Thank you all for responding to my question! It helps so much to have others to talk to that are going thru the same thing. I appreciate any information I can get at this time. That leads me to another question, I was also wondering if most people start off with a CT scan or a PET scan? My dad is having a CT scan on Friday and I was wondering why they weren't doing the PET scan instead? The spot on his tongue since the biopsy is getting larger and I'm really worried about that. I'm so new at this, and just trying to be prepared for questions once we see the doctor.

Kelley

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

I had CT scan right off the bat, to determine size of tumor in my throat.
PET scans are way more $$$, and involve getting radioactive.

and they have different purposes: CT scans show anatomical structures (including tumors); PET scans can actually show details of cellular function.

best wishes to you and your Dad!

Kell82's picture
Kell82
Posts: 16
Joined: Dec 2012

Thanks for helping me understand the difference between the two.

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Welcome, sorry to meet you here. My husband was just recently diagnosed too. He has stage IV tonsil cancer, had surgery on 11/2 and started radiation and chemo this week.

You are correct, it's a lot to take in, and can be over whelming, but day by day, appt by appt, , you'll start to see his plan take shape, then it gets a wee bit easier.. And then you'll have more questions, and we will all be here to lend an ear and you'll get wonderful first hand information from the experts, as I call them... Those with recent experience.

I wish for you and your Dad a quick treatment and recovery.

Kari

lauralou55
Posts: 12
Joined: Jul 2011

My 77 year old Dad was diagnosed with base of tongue cancer in July of 2011, stage 2 and underwent approximately 33 rad treatments. The dr did not recommend surgery. The cancer was discovered because the tumour drained from the back of his throat into his neck and formed a wierd lump but the cancer had not actually mestastized. My Dad never drank or smoke or was overweight, always slender and worked out, no cancer or heart disease in the family. The dr suspected the tumour was HPV but it was not tested for HPV.

This survivor network really helped me get through this with my Dad. So keep reading and posting!

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Another base of tongue cancer survivor here - I was diagnosed three years ago - stage four - two lymph nodes involved. It took longer for me to get a declaration of "NED" than it does many here - a year and a half after diagnosis. But I got to join Club NED, and that's what's important.

Some times it's hard, but it's not impossible. Being determined and hopeful make a big difference for "us", I believe.

Sorry your family has to go through this. I remember when I was first diagnosed - the confusion, fear, indecision and pain (I didn't have pain until my first scoping/fine needle aspiration, then the open biopsies with tonsillectomy that followed). I felt much better when I moved past the decision-making stage and began actively fighting the cancer.

This site is a wealth of info, and the members a wonderful source of support. Take advantage of the site. Keep us updated on your fight. Do well.

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