Biopsy

danecornel

Oh my, where to start. Just yesterday the doctor called and said I have Squamous Cell Carsinoma and he thinks it's probalby in the hard area (what ever that is) in the top back of my mounth. He says Tongue Cancer for short. I'm freaked out. I read everything from the major clinics about the potential treatment. Surgery where they can remove your tongue, chemo and radiation. I must tell you, if it's bad like that where I cut to pieces and can never talk again, and the pain vs. just dieing sooner, I feel like the ladder. But again, I just found out, and Tuesday they put me under for a tongue biopsy. I shoud be having positive thoughts, but I can't stop thinking of the worse. I have high hopes that this chat board will help some of you shed some light on this for me. I'd sure appreciate it. Dane

ByeByeCancer

Danecornel, I replied to your email

Yup....you've found the right place.  I found several message boards but this one seems to be the most active. Lots of people who answer questions for us newbies.  My husband is just starting.  T2N2M0 Base of Tongue Sqamous Cell Stage IVa HPV+.  He's had 2 Erbitux and 5 radiations so we are just trucking along.  We were very freaked out at first but we feel a little better now that the treatments have started.  Yes, the internet has some hard-to-read stories, but so many people make it out of this just fine so try and stay positive.  Get more than one opinion too!  We got two opinions and neither recommended surgery except as an option down the road if radiation and chemo aren't sucessful.  Hang in there!

MarineE5

Mind Racing

Dane, 

Please try to take a deep breath and stay away from Dr. Google if you can. I am sure your mind is racing, as many of us have experienced. We tend to get on the computers and start a frantic search. Unfortunately, it doesn't calm our nerves, it only increases the stress level. One thing to remember is that much of the information out there is outdated. 

The options given to me roughly 13 years ago are different than the options given to those traveling this road today. I chose Surgery first to remove my tumor and get it out of me totally. That was followed by Radiation. Chemo was held as a backup in the event of re-occurance which did not happen. My treatment plan worked. 

Each person will get their own treatment plan and in the near future you will receive yours. As mentioned above, I was lucky and went to a Teaching Hospital. Another suggestion was to get a 2nd opinion, I did not get one as I felt very comfortable with the Surgeon and Radiation Oncologist at the Teaching Hospital. We have to be our own advocate as we only want to do this once, so do what is best for you (2nd or even 3rd opinions) and how you feel about everything, wish we didn't have to do it at all, but here we are. 

As mentioned, this is a good site for information, a place to vent when needed, and great support. If you have time, please take a look at the first post on the page as it is loaded with helpful tips with this journey. You may wait on that as your mind is still spinning or you are so tired that you are numb at this time. You will get thru this as we have. The road can get bumpy. Please have someone go along with you for your appointments so notes can be taken and questions answered.

My Best to You and Everyone Here

 

swopoe

My husband was diagnosed with

My husband was diagnosed with tongue cancer two years ago. His cancer was in the front of his tongue, not the back. But I remember being totally freaked out too. We were just numb. This board is a great place. The friends from here helped get us through, and they will do the same for you. My husband had surgery, chemo, and radiation, and two years later, you would never know he even had cancer if he didn't tell you first. There is a scar on his neck, but he talks and eats fine, works full time, and keeps up with our three kids (well, as much as anyone can!). The treatment can be rough but there is possibility of a great life post treatment. My prayers are with you!

DarcyS

Life after diagnosis

Welcome, Dane, I remember the freaked out feeling.  I was not the patient, but the spouse of one.  Those days were really hard, but you have found a place filled with people who understand and have been or are on the same journey.  There is hope for a good life after treatment.

  Not everyone has surgery.  At the University of Chicago, surgery for my husband was plan b.  So far, almost 5 years post treatment,  no surgery needed.  He had chemo and radiation for stage 4 ssc of the piriform sinus, T1N2bM0.  The treatment was rough but doable.  Find a treatment team you are comfortable with.  We felt that a teaching hospital with a tumor board that specializes in head and neck cancer offered the best treatment since my husband's ssc was somewhat rare.

Others on this site can offer excellent ideas for dealing with side effects of treatment and  there are some who are newly diagnosed like you.  Hang in there!  

CivilMatt

welcome

Dane,

Welcome to the H&N forum, sorry that you are here.  Did you say you had the biopsy and it was confirmed as SCC, BOT?  That is what I had, but there was nothing found in the top back of my mouth.  I assume you have had a PET scan and they have narrowed down the areas of concern.

There is  an excellent chance that you will do just fine and the hard part will be finished around Christmas (what a way  to start the new year, “cancer free”).

You will be given a lot of information, but your doctor should direct you to the best decision for you.  Doctor Google is well known for scaring the pants off of people, don’t be one of them.

While it is hard, try to stay positive (it helps).   I still find it hard to believe I walked this road, but I did.  There is a lot to learn and beware of, you will learn and do great.

My advice, start drinking lots of water and swallowing often, (that is good advice).

Best to you.

Matt

danecornel

CivilMatt said:

welcome

Dane,

Welcome to the H&N forum, sorry that you are here.  Did you say you had the biopsy and it was confirmed as SCC, BOT?  That is what I had, but there was nothing found in the top back of my mouth.  I assume you have had a PET scan and they have narrowed down the areas of concern.

There is  an excellent chance that you will do just fine and the hard part will be finished around Christmas (what a way  to start the new year, “cancer free”).

You will be given a lot of information, but your doctor should direct you to the best decision for you.  Doctor Google is well known for scaring the pants off of people, don’t be one of them.

While it is hard, try to stay positive (it helps).   I still find it hard to believe I walked this road, but I did.  There is a lot to learn and beware of, you will learn and do great.

My advice, start drinking lots of water and swallowing often, (that is good advice).

Best to you.

Matt

Thanks and here's my questions

Hi Matt:

I very much appreciate this site. Yes, Dr. Google horrified me. In the first hour I had decided it they were going to do all those horrible things, I was just going to die earlier and do nothing. This site is giving me some hope. 

1: Went to the doctor and showed him the huge lymph node on my neck..left side. Half the height of a golf ball and around3 inches across. I also pointed out a mole on my scalp. He did a biopsy of both. The mole hasn't come back yet, but I got the big call yesterday that the biopsy of the lymph node shows Squamouns Cell Carsinoma. He stuck to tube down my nose into the back of my throat I guess and he also felt the roof. He said he found that both sides were hard which he said was unusual. One side usually means cancer in that area. But when he called back and said the cancer in the lymph node did not come from there but somewhere else, he said his gut feeling was the hard area in the back of my roof of mouth ... I guess? 

2: He immediately found an opening for the surgery room this Tuesday morning...day after tomorrow. He said I needed a biopsy of that throat area. They are going to put me under a General ... that freaks me out too. He will be doing the biopsy and feeling around in there...about 45 min to an hour. 

3: Then a CScan with Iodine which I also hear can have horrible side effects. 

4: Then the PET I think it's called. They are obviously looking to see if it's gone anywhere else...right? 

5: So in minutes I'm on Dr. Googe reading about all the people that had their tongues removed, pieces taken out of their jaw and worse. Plus the horriic pain and sickness from chemo and radiation. By last night I was thinking...why go through any of this. Why not just get the stuff together to give to friends and go down quicker. Yes it's terrifying, for me especially thinking of it going into lung cancer as I let it go and then not being able to breath. So that's the horror side. 

6: But then I started reading this site and so many had good news. I don't know if any had the same thing, or how bad mine is yet, but I have more hope now. Plus good friends have called and written and said positive things like, breathe, go slow, don't project, wait to see, find great doctors, and so much more. 

So now that you have read my 48 hours since I found out story of horror and then feeling a bit more hopeful, what are your thoughts? 

Thanks so much to you an everyone on the "Anti-Freakout-Team." I so appreciate this support. Wish I could meet every one of you. 

Dane

swopoe

It sounds like you are in

It sounds like you are in good hands So far. My husband's docs said that this would just be a blip in his life. It was a rough blip, but a blip it was. He was diagnosed on Oct. 12th, so just about this time 2 yrs ago. The holidays were rough. But 2016 got much better. And things are great now. Get your exact diagnosis and go from there. We will be with you every step of the way.

danecornel

swopoe said:

It sounds like you are in

It sounds like you are in good hands So far. My husband's docs said that this would just be a blip in his life. It was a rough blip, but a blip it was. He was diagnosed on Oct. 12th, so just about this time 2 yrs ago. The holidays were rough. But 2016 got much better. And things are great now. Get your exact diagnosis and go from there. We will be with you every step of the way.

Question

Did they remove his tongue or do surgery?

swopoe

danecornel said:

Question

Did they remove his tongue or do surgery?

They removed a little portion

They removed a little portion of his tongue that contained the tumor. it was on the front right (underside) of the tongue. So he still has his tongue.

OKCnative

Sounds like we were in a

Sounds like we were in a similar boat. I just finished my treatment 3 weeks ago. I had BOT Stage 3 SCC HPV+. Did 35 rads and 3 chemos. No surgery so far.

When I was first diagnosed I too started Googling SCC and was horrified and quickly became depressed. Fortunately I stumbled upon this site rather quickly. I also found 3-4 individuals in my area that were treated for the same cancer - and guess what? All survived the treatment and were cancer free! This gave me great hope.

Yes, the treatment is grueling. However, while we seem to all suffer the same treatment symptoms, we often suffer at greatly varying degrees. For me, it was mostly like having the flu for a couple of months and loosing the ability to eat solid food for several weeks. Sure, there were a few very bad days, but all in all I think it went very well considering the reality if I didn't seek treatment.

Success and survival rates are extremely high for this type of cancer (especially if HPV+).

Hang in there. Yes, the road is rough, but certainly worth the travel.

CivilMatt

danecornel said:

Thanks and here's my questions

Hi Matt:

I very much appreciate this site. Yes, Dr. Google horrified me. In the first hour I had decided it they were going to do all those horrible things, I was just going to die earlier and do nothing. This site is giving me some hope. 

1: Went to the doctor and showed him the huge lymph node on my neck..left side. Half the height of a golf ball and around3 inches across. I also pointed out a mole on my scalp. He did a biopsy of both. The mole hasn't come back yet, but I got the big call yesterday that the biopsy of the lymph node shows Squamouns Cell Carsinoma. He stuck to tube down my nose into the back of my throat I guess and he also felt the roof. He said he found that both sides were hard which he said was unusual. One side usually means cancer in that area. But when he called back and said the cancer in the lymph node did not come from there but somewhere else, he said his gut feeling was the hard area in the back of my roof of mouth ... I guess? 

2: He immediately found an opening for the surgery room this Tuesday morning...day after tomorrow. He said I needed a biopsy of that throat area. They are going to put me under a General ... that freaks me out too. He will be doing the biopsy and feeling around in there...about 45 min to an hour. 

3: Then a CScan with Iodine which I also hear can have horrible side effects. 

4: Then the PET I think it's called. They are obviously looking to see if it's gone anywhere else...right? 

5: So in minutes I'm on Dr. Googe reading about all the people that had their tongues removed, pieces taken out of their jaw and worse. Plus the horriic pain and sickness from chemo and radiation. By last night I was thinking...why go through any of this. Why not just get the stuff together to give to friends and go down quicker. Yes it's terrifying, for me especially thinking of it going into lung cancer as I let it go and then not being able to breath. So that's the horror side. 

6: But then I started reading this site and so many had good news. I don't know if any had the same thing, or how bad mine is yet, but I have more hope now. Plus good friends have called and written and said positive things like, breathe, go slow, don't project, wait to see, find great doctors, and so much more. 

So now that you have read my 48 hours since I found out story of horror and then feeling a bit more hopeful, what are your thoughts? 

Thanks so much to you an everyone on the "Anti-Freakout-Team." I so appreciate this support. Wish I could meet every one of you. 

Dane

more to come

Dane,

Knowing what I know and reading what you have written, I would hold off on freaking out and giving up.  You have got a lot of cards to play before folding.  I really do not have an inside track to your path, but I have heard member’s from the H&N  forum who were far worse than I was and they do a stellar job of recovery.

So far, it sounds like you have read the good, the bad and the ugly and chances are, during this treatment you will visit each of these conditions, BUT NOT ALL the time, and NOT at once.  Did you read that some people have an easy time and even feel a little guilty of their good fortune?  It does happen, I know of a few.

Do not give-up. Instead, see this as an inconvenience and prepare yourself to face this crap the best you can and make it through to your new normal.

Yes, it does sound like you started with the proverbial neck lump.  The neck lump seems to be the ticket for this show for many, many SCC members.  It usually is the indicator which points back at your tongue, tonsils, mouth, etc..

They will fine tune your diagnosis in the coming days, they will give you your options and (hopefully) their opinions and then you will have to make your choice on treatments.  It is generally a short list and the path you select will be the correct one (they won’t let you fail). Now it is time to go eat, yum, yum, yum.

See ya,

Matt