HI Larry, I am sorry to hear of your diagnosis. I am a caregiver. My BFF is 71 and we went through nonsense for a few mos. His primary care said he just had some type of cold, then it was heartburn... just ridiculous. I got on the phone, and pushed and pushed and got into an ENT quickly. I was terrified as you can imagine. Ended up with 3.5cm BOT tumor and 1 lymph node. I found this forum and learned so much. I quickly became educated, knew what to ask the docs and just kept pushing until I found the best docs I could find. It is worth the effort to educate yourself and ask many many questions. We just finished week 5 of daily radiation and weekly Chemo, Cisplatin. He is doing great considering what he is going through. He is very healthy and nutrition is very important part of his recovery. I am all over this. I trust our team of docs, it is important to trust your docs. Stay positive, educate yourself, when I finally calmed down and educated myself, I felt like we could beat this cancer. It was not so scarey anymore.

My heart goes out to you, It was only early September when we found out, but the fight goes on and I am confident we will win. 14 days of rads to go and 2 more chemo treatments. I think we will win!

Larry, I had BOT primary, 2.5 cm, and two nodes involved. My treatment was chemo and radiation, no surgery. We saved the surgery to do later but the tumor and nodes showed no cancer after treatment so the surgery never happened.

Wishing you the best.

Larry I was told the same thing about surgery. What they said was "its not the best way to treat this" what I heard was "its inoperable, too big and complicated to cut out, you'll have to take your chances with radiation and chemo."

Rads and chemo are very effective with this kind of cancer. They like to keep an option in reserve, and while its not ideal to have surgery after rads, it is an option.

Rads and chemo are a tough road, but doable. It sounds like you are now in good hands medically. Take a notebook and/or a second set of ears and ask lots of questions. Your body will hit you with all sorts of surprises in the next few months. Every cancer journey is different, but you'll find many good people here who have been over the same bumps in the road.

Hi Larry,

I am having problems with spitting up blood. I've been spitting up blood on and off for the past 4-5 months. I spit up blood streaks and clots, then it comes and goes maybe once every two weeks? I am not so sure. May I ask you if your bleeding was continuous? Could you describe it? I have an appt with a primary tomorrow to get a referral to another ENT. I just recently had another bout of spitting up blood and this is starting to get unnerving.

Hi Larry, welcome to the family. You have had a lot of very good advice already. I would just like to add that chemo and rads are the standard treatments for BOT SCC. It is a tough regimen but doable. I would suggest that you line up some help for the time while you are in treatment. It is a battle best fought with someone who can oversee your nutritional intake and help manage your medical appointments and meds. Good luck.

I had my PET scan and Mesh Mask made. My ENT Surgeon called and told me scan showed I have a tumor on the tongue. It shows that it sits in the middle of the tongue and then goes on both sides. The thickest right is in the middle. The hard mass I feel on the left side is definitely tumor and it�s necrotic, it�s dead tumor, in the middle. Its been there for a while. A pretty good size lump on the left side that�s kind of deep. The right side has two different lymph nodes that light up.
There�s nothing else anywhere else in the body.
I go Friday to have feeding tube put in. Then see Radiation and chemo Dr's next week.

Larry6905

I would like to throw some good luck your way as you start your treatments. Be strong You Can Do It.

Best wishes
Heidi

Has anyone else coughed up a black piece of tissue? It smells foul. In fact is smells like what I have been tasting and smelling the last few weeks.

Should I have been told about staging? I asked about the virus and was told it was not tested. The tumor didn't look like that kind to the doctor.

I am now taking prednisone 20mg tablet could that cause stomach acid? if I will have difficulty swallowing will breathing also be difficult?

Larry6905,

I'm sorry for the anxiety you are feeling. Unfortunately, that's part of the deal with what you are going through.

It's really hard to tell what's going on, because we don't have your medical history to refer to. Steroids can cause digestive issues and there could be interactions with other meds if you are taking any. It could just be the stress you are under.

If I may suggest, make sure all prescriptions are from the same pharmacy and use the pharmacist as a resource. I was fortunate because my father has been a pharmacist all my life. There are some websites that allow you to enter all meds and it highlights any issues. Make sure your doctors know all medicines,mover the counter products and herbal/natural products as well.

As far as the junk you are hacking up, it could be anything. Even partially digested blood could be black and smell.

Try hard to not let the mind wander into all the "what ifs". There's going to be a lot going on for a while.

Hang in there, we are all here to walk with you through this. Best wishes for some smooth sailing.

Hi Larry,

I had BOT which was necrotic. For months before diagnosis, my family would complain about my bad breath. I tried EVERYTHING and nothing worked. It turned out to be the necrotic cancer.

There were a few occasions where weird small chucks of crap got hacked up as well. Not black but odd. I suspect it was pieces of necrotic tissue but never confirmed.