Can't believe I am here- first post-updated

swopoe

I am a wife posting because my husband was diagnosed on Monday. And I don't know what else to do. He had a sore on his tongue that would not go away and finally the third doctor he saw suggested a biopsy. And it came back as poorly differentiated squamous cell carcinoma of the tongue. We don't know what stage, but the pathology report says it appears to be deep in the tongue. We know nothing else.

My husband is only 40 years old, has never smoked and does not drink. I am his only sexual partner he has ever had, and we are college sweethearts (married 14 years with 3 kids). We are devastated.

We have an appointment with a head and neck cancer specialist here in Houston at the Texas Medical Center on Monday.  We are lucky to live in a city with such good hospitals. The waiting is impossible, and we were told there is nothing we can do until then. 

I need someone to tell me what to do for my husband or how I can cope so I can help him or what to expect. We are so scared. I keep doing research (my husband and I are both scientists), but it is just making me more nervous.

I will be praying for all of you.

Bsauls94518

Sorry you are here

I am sorry that you are here but you have come to the right place.  This can be a very scary place to be and you will find that things move kind of slowly from diagnosis to treatment to recovery.  Read everytying you can from good sources.  Try to avoid blogs and stick with the universities and cancer research hospitals.  As a avid poker player I can say don't pay any attention to the odds.  They are just a way of showing probabilities but don't have anyting to do with your outcome.  Your team of family, friends and health care professionals are the ones that matter and they can help to guide you to a successful outcome.  Many times I have stood at the table with a 95% chance of a win to be dealt a cruel card on the river and loose.  I have also stood dejected after making a poor read and finding myself with a chance of 3% and ultimately win the pot. The odds have no idea how strong you are or how much faith you have.  Being a caregiver is a really tough job and you will need your own support.  I cant tell you what is to come or how things will turn out, (i was just diagnosed in September and have not started any treatement yet) but can tell you to hop on the seat next to me and we will ride this bus to recovery together.  Read the superthread there is a ton of valuable information there!  

phrannie51

Wecome to the club

nobody wants to join....you have come to the right place, tho.....the folks here are very smart, and very supportive. 

Of course you're scared....hearing the word cancer in the same sentence with your name, or your loved one's name just doesn't go together....It took me weeks to compute just the words....then there's the feeling of having been parachuted into a foreign country, where you don't know the language or the customs....LOST!!  I can tell you that there isn't a single person here who didn't feel the exact same way....and there are LOTS of us here!

Yes....you are lucky to be in Houston, where excellent....actually the best medical care in the US is located....you can go to Texas Medical Center one day....and get a second opinion at MDA the next day....that is wonderful!! 

This period between diagnosis, and finally talking to someone who's going to control treatment is the worst part emotionally....the waiting around for someone to take charge just about drove me over the edge.  But we all get through it....you might as well breathe, maybe do less in the way of research, since every case is different....every person is different.....The first thing they'll do is give him a PET scan....that will tell everything they need to know about the tumor on his tongue.  I think you'll find once you've talked to the specialist your fears will lessen.  A treatment plan will be worked out especially for him. 

Here's what you two really need to do between now and Monday....EAT!  Eat anything and everything .....all his favorites, and eat some more....Sounds crazy, but eating is the most constructive thing you can do right now.....he'll need that weight once treatment begins.

Here's another promise....once treatment does start, he'll feel better just for being an active participant in his own life.....right now, being an observer is hard on a person's head....like the world is out of control....

It's going to be ok....it's dark on this end of the tunnel....but faster than you'd think, you reach the other end...take a seat next to Bsauls....it's nice having busmates on this journey....it's comforting, and comparing notes means you're getting information from more than one source/hospital/Dr.  We'll all keep you close as you get through this....we're a very active board....someone always to answer a question.....and ALL questions are acceptable.

It's going to be ok.

p 

swopoe

phrannie51 said:

Wecome to the club

nobody wants to join....you have come to the right place, tho.....the folks here are very smart, and very supportive. 

Of course you're scared....hearing the word cancer in the same sentence with your name, or your loved one's name just doesn't go together....It took me weeks to compute just the words....then there's the feeling of having been parachuted into a foreign country, where you don't know the language or the customs....LOST!!  I can tell you that there isn't a single person here who didn't feel the exact same way....and there are LOTS of us here!

Yes....you are lucky to be in Houston, where excellent....actually the best medical care in the US is located....you can go to Texas Medical Center one day....and get a second opinion at MDA the next day....that is wonderful!! 

This period between diagnosis, and finally talking to someone who's going to control treatment is the worst part emotionally....the waiting around for someone to take charge just about drove me over the edge.  But we all get through it....you might as well breathe, maybe do less in the way of research, since every case is different....every person is different.....The first thing they'll do is give him a PET scan....that will tell everything they need to know about the tumor on his tongue.  I think you'll find once you've talked to the specialist your fears will lessen.  A treatment plan will be worked out especially for him. 

Here's what you two really need to do between now and Monday....EAT!  Eat anything and everything .....all his favorites, and eat some more....Sounds crazy, but eating is the most constructive thing you can do right now.....he'll need that weight once treatment begins.

Here's another promise....once treatment does start, he'll feel better just for being an active participant in his own life.....right now, being an observer is hard on a person's head....like the world is out of control....

It's going to be ok....it's dark on this end of the tunnel....but faster than you'd think, you reach the other end...take a seat next to Bsauls....it's nice having busmates on this journey....it's comforting, and comparing notes means you're getting information from more than one source/hospital/Dr.  We'll all keep you close as you get through this....we're a very active board....someone always to answer a question.....and ALL questions are acceptable.

It's going to be ok.

p 

Thank you both so much. The

Thank you both so much. The doctor we are seeing is with University of Texas-MD Anderson, and I know they are the best. But, yes, we are lucky to live near one of the largest medical centers in the world where we have many options and sources.

it is so hard all this waiting. We are both doers and fixers and it is hard not being able to do anything yet. My husband wants to do something now. Anything! Monday can't come soon enough.

While I wish it wasn't so, it is good to have people on this journey with us. Bsauls, we will sit beside you and keep you in our thoughts. And thanks to phrannie for your advice as well. It means so much to me and to my husband. You have no idea how much.

wmc

Welcome to the H&N Group

Welcome to the CSN group. Also sorry you need to be here. When you here the word cancer, it effects you in ways you can't understand or explain. First I would wonder why you are not going to MD Anderson, as it one of the best in the nation and I would rather go there. The Head & Neck cancer is the second roughest to go through, but has very good results. When you go to his doctor write down all your questions and leave space for answere and just hand it to him. The doctor will say something that you might not expect and you can go blank. You can always ues your phone to record.

It might be better not to Google as much information is old and some even incorrect, so you must be careful and stick to good medical sites. The term poorly differentiated mostly means it is agressive. There is lots of waiting, and tests need to be done and all that just makes you more nervous and just want it to get started and over. I do recomend reading the Superthread at the top of the threads as it has lots of terms and answers. This is a rough road you both will go dowm and has many bumps. The good news it it is bestable and so many here have already or are doing it now. It is very haed on the caregiver as you feel his pain but can't do much. You both need to understand you need to be honest with other when you talk and don't put on a front for the other one. I had days after my surgery [Laryengeel cancer Stage 3 and removed my larynx and 86 lymph glands] where I had no pain at all, but my wife thought I did and felt bad, until I told her I was in no pain. Most likely he will have chemo and radiation and might have surgery as well. Just take one day at a time and only today matters. You will both get through thisand he will beat this. It is just a slow recovery and it is not in days and weeks but weeks and months. Always remember to keep hyrdated and drink water, lots of water. He might want to put on a few pounds also. Will keep you both in my thoughts and prayers.

Bill

avisemi

Welcome, sorry you have to be

Welcome, sorry you have to be here. You already got some great advice. Read the superthread for tons of good info. Though, when reading it, know that not everybody gets the same side effects or sane severity of side effects. It can feel overwhelming since there are so many issues. The good part is that your husband most likely won't have all these issues. Some things that come to mind:

if you feel comfortable, have someone you trust go with you to the appointments.  I was lucky that my dad is an oncologist so he went with us everywhere and explained everything.  Even if he wasn't,I needed someone else to be there with us to take notes, ask questions, debrief me later since I was so dazed.  

Recruit people for your support team. Give them specific tasks. e.g. My sister was in charge of communicating with other folks and running interference when needed (I needed this since people meant well by asking and wanting updates but at the beginning this was too overwhelming for us). A friend coordinated meals and grocery shopping. Most people, when they found out wanted to help. At first I would just say thank you and leave it at that. But I learned I needed to give them specific ideas of what I needed help with. To most people I usually said, cooking a meal for us would be great.  

You are going through the worse part. It gets better. The treatment is hard but he can do it with your support. a lot will fall on you. Please make sure you have support for yourself (us!).  Good luck!

swopoe

Thanks, Bill. Our doctor is

Thanks, Bill. Our doctor is with University of Texas- MD Anderson...MD Anderson is a part of the Texas Medical Center. Very confusing I know!

The aggressive part is what is also so frightening. The oral surgeon said the same thing about poorly differentiated. I just hope we get good news and can get started on a treatment plan soon. My husband looks and feels fine; I can't believe he has cancer.

Noellesmom

swopoe said:

Thanks, Bill. Our doctor is

Thanks, Bill. Our doctor is with University of Texas- MD Anderson...MD Anderson is a part of the Texas Medical Center. Very confusing I know!

The aggressive part is what is also so frightening. The oral surgeon said the same thing about poorly differentiated. I just hope we get good news and can get started on a treatment plan soon. My husband looks and feels fine; I can't believe he has cancer.

Tongue cancer

Swopoe, I'm sorry you find yourself here.  Lots of good folks on here.  

My husband is 5 years post hypopharyngeal and base of tongue SQ cancer.

Waiting for treatment is the hardest part.  

As you have questions, come here and ask.  These people are great.

One caregiver to another, please take care of yourself, too.

 

Hugs.

phrannie51

swopoe said:

Thank you both so much. The

Thank you both so much. The doctor we are seeing is with University of Texas-MD Anderson, and I know they are the best. But, yes, we are lucky to live near one of the largest medical centers in the world where we have many options and sources.

it is so hard all this waiting. We are both doers and fixers and it is hard not being able to do anything yet. My husband wants to do something now. Anything! Monday can't come soon enough.

While I wish it wasn't so, it is good to have people on this journey with us. Bsauls, we will sit beside you and keep you in our thoughts. And thanks to phrannie for your advice as well. It means so much to me and to my husband. You have no idea how much.

I'm smiling a little

when you say you both are both doers and fixers.....most everyone I've known on this board have been doers....independent and in control of their lives....and then.....the rug goes out, and we're not in control anymore...it's a frigging shock.  One thing this disease and the treatment offered me in exchange.....one day at a time.....literally.  You only have to get through this day....tomorrow will be here soon enough....and then....with one foot in front of the other, you will get through that day, also.  It takes practice, because we're not geared that way....but it sure makes life easier.

Now....just one more little thing....get a calendar that you have easy access to, so you can keep track of appointments....he's going to be having a LOT of them....hopping from one place to the next for a while....then things will settle down a little.

p

Oh...and take a run through the superthread (it's the first one on the main page...it never moves)....not everything applies to everyone...but it does have handy things like a list of stuff you might want to start gathering. 

swopoe

I am already reading the

I am already reading the super thread. Great stuff. Thank you!

I am very organized and a planner by nature (I always have my paper planner with me), so a calendar is no problem. 

one day at a time...that has to become my new mantra. 

MrsBD

You are not alone. None of us

You are not alone. None of us ever imagined we'd be on this site. It's really a shock when there doesn't seem to be an identifiable reason and it can drive you crazy trying to figure out why. I am also a non-smoker, non-drinker, and HPV negative. My cancer was so far down on my tongue, it was only able to be seen with a scope. Your husband's was probably caught earlier because it was more visible. That and being a non-smoker work greatly in his favor. There are many new treatments available, and you are going to a center that will have the best of them. Waiting to get started is nerve-wracking. Follow the advice about the Super thread and getting good nutrition for the days ahead. There is also a caregiver's group on this site.  We'll be here for both of you with advice, support, and prayers.

Skiffin16

Welcome...

From what you mention, more than likely, I'd guess HPV derived.., that's pretty much the culprit in those of us with no history of tobacco use.. You fall into the right age range and unfortunately.., the luck of the draw.

Like mentioned, try to resist the urge at Googling as there is just way to many variables to make an informed Dx.. Trust your MD's, especially as you mention MD Anderson..

I was Dx as STGIII Tonsilsprimary with a secondary lymphnode on the same side. Three rounds of differing chemo over nine weeks with an additional seven weeks of concurret weekly chemo and daily rads.., umm after the tonsils came out up front.

BTW.., that was over six years agon, and I'm now clean and clear..

A lot depends on your health going in, history, family history, attitude and will power.. Keep your positive thoughts, family and friends, let the negatives ones slide until after Tx.

It's a rough road, but doable.., you have many here that have paved the road for your success.... (hubs).

Best,

John

CivilMatt

welcome

swopoe,

Welcome to the H&N forum, “I can’t believe I  am here” could have been my post, so sorry it is yours.

Other than learning all you can (right now), enjoy yourself and of course get prepared.

Once treatment begins, learn to work with your body, keep your team informed, and don’t try to tough it out.

The first, easiest and may I say best advice I received from this forum prior to the start of treatments was start drinking water and swallow, swallow, swallow.

Best of luck.

Matt

Barbaraek

Swopoe add me to the list

of people who are sorry you have to be here, but glad you found this group. I too am a spouse/caregiver. My husband just finished treatment for NPC (nasopharyngeal) cancer. Waiting is hard - but give your team of doctors the time they need to come up with an accurate diagnosis and the best treatment plan. You don't want to rush into something that won't be as effective, right? The doctors need time to choose the right tools for the journey too.

As a spouse, try to find a few minutes to enjoy doing something you like to keep you sane: reading, walking, gardening, whatever it is...do it. There will be times when you will feel absolutely hopeless and powerless when your husband is in pain - it is the worst feeling! But you will also find that you have strength and reserves you didn't even know you had! And in a weird sort of way - this whole experience can take your relationship to an even deeper level. My husband and I were high school sweethearts also, and just celebrated out 30th anniversary last February. We had a great marriage, but I can honestly say that having gone through this experience together - it's even better and stronger.

I won't deny that there will be lots of dark and rainy days, but I will say that if you are patient and look hard enough - there is a silver lining to the clouds and sunshine in the distance.

Prayers for you and your husband,

Barbara

rcaulder

He'll be fine

It can be overwhelming at first but he'll be fine. I agree with others, I wouldn't read too much. When I first got my DX I had 4 nights with little sleep. I googled everything. The statistics were depressing. It became overwhelming. It then accured to me God doesn't pay attention to statistics neither should I. 

kdot2003

Hi,
I am new too.  Was just

Hi,

I am new too.  Was just in your shoes except my husband is the caregiver.  I feel so sorry for him.  He had a deer in the headlights look the first week and he has tried so hard.  All I need is for him to be there.  He has to keep working so I worry about his time off with me.  I spend as much time worrying about him as I do me.  The waiting is the fricking worse.  OMG.  Once you start treatment maybe it will feel like you are doing something.  I start Tuesday.  Hopefully I will feel that way.  Huggs  Karen

swopoe

Had the appointment today...

Thank you so much for being so helpful over the past week as we waited.

The doctor we saw today was great. My husband and I felt very comfortable with him, which was good. On Thursday morning, my husband will get a neck and chest CT scan and then right after that, we will have another appt. for the doctor to go over the results. That way we don't have to wait at all for the interpretation. The doctor is thinking there may be lymph node involvement on the right side, but he isn't expecting anything worse than that.

Then, surgery is already scheduled for November 10th to remove the cancer on the tongue and any lymph nodes.

3-4 weeks later they will start 6 weeks of radiation. The doctor said that he understands our fear because my husband is young (40) and because we have three kids (ages 6, 9, and 11), and so he doesn't want to wait on anything. The hope is that the scans come back showing no spread to the lungs, but the doctor doesn't expect to see that. Our fingers are crossed.

It does feel good to have a plan and know that we are on the path to doing something. 

Also, the doctor said they would test to see if it is HPV related, but he doesn't think it is. He thinks it may be related to lichen planus, which I did read about this past week. Anyone have experience with that?

Anyway, please wish us luck for Thursday. Thank you.

Barbaraek

swopoe said:

Had the appointment today...

Thank you so much for being so helpful over the past week as we waited.

The doctor we saw today was great. My husband and I felt very comfortable with him, which was good. On Thursday morning, my husband will get a neck and chest CT scan and then right after that, we will have another appt. for the doctor to go over the results. That way we don't have to wait at all for the interpretation. The doctor is thinking there may be lymph node involvement on the right side, but he isn't expecting anything worse than that.

Then, surgery is already scheduled for November 10th to remove the cancer on the tongue and any lymph nodes.

3-4 weeks later they will start 6 weeks of radiation. The doctor said that he understands our fear because my husband is young (40) and because we have three kids (ages 6, 9, and 11), and so he doesn't want to wait on anything. The hope is that the scans come back showing no spread to the lungs, but the doctor doesn't expect to see that. Our fingers are crossed.

It does feel good to have a plan and know that we are on the path to doing something. 

Also, the doctor said they would test to see if it is HPV related, but he doesn't think it is. He thinks it may be related to lichen planus, which I did read about this past week. Anyone have experience with that?

Anyway, please wish us luck for Thursday. Thank you.

Glad you're getting some forward motion

It is a relief to be in the pipeline and doing something. I'm glad you like the doctor you saw. Fingers crossed for good results on the scans.

My husband and I always had the motto "prepare for the worst and hope for the best". With young kids, I think this taking the time to think through different outcomes is important. Our kids are almost launched - well, one is launched, the other is a senior in college. I know as a spouse I felt better once we had our financial/legal ducks in a row so we could forget about those things and just concentrate on fighting the cancer and winning. It was a big relief to me to get that stuff taken care of so we could focus on getting through the treatment.

You and your kids will be a great motivation for your husband to make it through the tough parts of treatment. There may be some times when you as a mom and caregiver feel really overwhelmed...please take some time to take care of yourself too...even if it is just a small part of your day.

If the hospital where you are going offers and support groups through SPONCH (Support for People with Oral and Head and Neck cancer) they might be a good resource for you too. A diagnosis like this really impacts the whole family. We'll be keeping you in our thoughts and prayers as you start treatment.

Lichens planus is a new one for me...maybe someone else on the board has experience or knows about it.

Good luck!

Barbara

donfoo

swopoe said:

Had the appointment today...

Thank you so much for being so helpful over the past week as we waited.

The doctor we saw today was great. My husband and I felt very comfortable with him, which was good. On Thursday morning, my husband will get a neck and chest CT scan and then right after that, we will have another appt. for the doctor to go over the results. That way we don't have to wait at all for the interpretation. The doctor is thinking there may be lymph node involvement on the right side, but he isn't expecting anything worse than that.

Then, surgery is already scheduled for November 10th to remove the cancer on the tongue and any lymph nodes.

3-4 weeks later they will start 6 weeks of radiation. The doctor said that he understands our fear because my husband is young (40) and because we have three kids (ages 6, 9, and 11), and so he doesn't want to wait on anything. The hope is that the scans come back showing no spread to the lungs, but the doctor doesn't expect to see that. Our fingers are crossed.

It does feel good to have a plan and know that we are on the path to doing something. 

Also, the doctor said they would test to see if it is HPV related, but he doesn't think it is. He thinks it may be related to lichen planus, which I did read about this past week. Anyone have experience with that?

Anyway, please wish us luck for Thursday. Thank you.

Wishing you luck

I'm hoping the scan results verified the preliminary thinking and the cancer is locoregional as is the most common diagnosis. Primary oral and some lymph node involvement. As other know as well as you, MDA is as good as it gets and there is not but great experiences posted here about the quality of care they provide.

Don 

Hondo

Hi Swopoe

As you can see you will get a lot of help and support from all of us here. The first this for me is to pray and the second is to move forward as God leads. We will all be praying for you and your husband. I was 46 when I first heard the words sorry but you have cancer, I am now 59 and ¾ and by God’s grace I am not planning on going anytime soon. You both have a lot of living to do, this is just a bump in the road of life.

 

 

Welcome to the family

Tim

 

 

 

 

 

swopoe

Thank you

for all the prayers and good thoughts. My husband's surgery is now going to be this Wednesday, November 4th. The scan showed the primary tumor on the tongue as expected and lymph node involvement in the IIB region on the right side of the neck. So there will be removal of the tongue lesion and a partial neck dissection (I believe that is the type of neck dissection; I honestly don't remember right now).  The hospital stay will be 1-2 days for pain management. Provided the final pathology report comes back as expected, 6 weeks of radiation will start the week after Thanksgiving. Swallow therapy will start immediately when radiation starts as well to "get ahead of the game."

The doctor believes the area he needs to remove from the tongue will be about the size of a quarter (25 cent piece) to get clean margins, so he feels the tongue will still be fully functional. My husband will need to eat a soft diet for 10 days after surgery. What do you suggest I do right now to get him ready for surgery and for when he comes home?  We already got great advice from our doctor, but tips from those who have been there would be great.

Thank you everyone for being so supportive and full of so much information. It means so much.