Hello, I wondering if anyone else has experienced an extended bleed from the mouth?

Last Mar, 25, 2014 I bled from my mouth for over 9 hrs. I ended up in hospital was given IV then released with an appt to see ENT.
No one could locate source of bleed. All looked in sinus but not in throat. I began having the taste of what I felt was blood and I could smell something foul. ENT said possible sinus infection gave me Zipromax.
This has gone on until I made appt yesterday to see another ENT. He looked down my throat and told me he saw a large mass at the base of my tongue, another mass near that one in neck and a small one in a node.
I am scheduled to have a biopsy on Tues. Which told would allow ordering of PET scan.
This Dr is surgeon and told me he could treat me with chemo and rad. It was a shock. I went in thinking it was my sinus. The Dr was noticeably upset no one checked for OC after the bleed.
I should also note I was diagnosed with Ulcerative Colitis several years ago I had a colonoscopy this year and they found 10 large "as your thumb" polyps all precancerous.
11 yrs ago had a slow growing cancerous tumor removed from my kidney. The surgeon went in back, removed top part of kidney and I recovered quickly. I was scanned for 5 years. No reoccurrence.
I am, of course, nervous as I am 70 yrs. I was a smoker but quit a year ago. I never drank or did drugs, I am told I am in good shape for my age.
I'd appreciate any comments or help.

Hi Larry,
Just wanted you to know I hear you. My husband, Stephen is 62 and 1yrs post surgery this week. He had stage 4 gum/jaw/lymph nood cancer and is recovered today. I am shocked and sad the doctor(s) did not look in your throat, my husband had also stopped smoking and there also was a smell of decay weeks before he had surgery.

I know this is traumatic and scary, keep yourself close to your best mates or partner. Rest, keep busy, drink loads of water and eat all your favorite foods. Let us know when your surgery/treatement will start.

Feeling your pain, Sophie

Welcome Larry,

Certainly not the kind of trick or treat you want to experience. There are many who have similar OC as you so you can get a lot of practical experiences here.

Why you were not diagnosed earlier is unfortunate but that's water under the bridge. At this point, having an ENT order the biopsy and get the process going is great.

Since you have past experiences dealing with cancer you probably know this but the ENT is one of several specialists involved to treat BOT (Base of Tongue) oral cancer. The chemo aspect is managed by a medical oncologist and the radiation is managed by the radiation oncologist. It would be rare for an ENT-surgeon to order the chemo and radiation treatments. Please check that out and if that is the case, I would seek alternative opinions. Second opinions are a good idea in any case.

You have a rough journey ahead but you will make it through. Stay close and read and ask as you desire.

Don

Hi Larry - I am sorry to hear about your diagnosis. My own diagnosis came because I presented to my primary care physician, reporting bleeding from the back of my throat. I never had a sustained episode of bleeding but I was spitting out an occasional blood clot so I asked him to take a look at it.

You've taken the first step. The next steps will involve diagnosis, via that biopsy, then, if it is cancer, staging and treatment. Good luck. I hope it is not cancer, but if it is, it might be curable. The treatments are not easy, but we have all endured them and you will be able to as well. We're here to help you get through it.

I had a laryngoscopy + incision biopsies on Tues. The Dr said " It looks like a routine tumor we see in the base of the tongue. Probably going to be cancer in that area. It�s going to take us some time probably tomorrow to figure out exactly what kind. We�re doing some special studies on it. Once we have the diagnose, then the insurance will let me scan him from head to toe. We�ll do that this week. We�re not wasting anytime. We wasted enough time at this point."
I haven't heard back yet from anyone. I did notice my front teeth were chipped.
I've had a sore throat, spitting up blood and coughing.My question is how long should I wait?

Call them. They're likely waiting on biopsy results but when you talk to the secretary tell her what the doctor said to you and see if she can move things along. It may be dependent on your insurance's approval too so push a little. It's cancer. It's treatable but expedience is the key. One thing I tell all newbies. Some drs are amazing some, drs suck, you want to believe your dr. has your best interest at heart - absolutely - and many do, however they also have numerous patients with similar issues (particularly if he or she is a cancer specialist - which BTW you should be seeing - someone who deals with this cancer all the time - preferably someone at a CCC - but I digress) - anyway my point is even the best dr, (unless they are related to you) will not be able to advocate for you like a family member or yourself. Take charge. Hugs and welcome.

Thank you Cheryld - the Dr called around 4pm. He said:
That is a cancer, and it�s the same type I thought it was, it a Squamous cell carcinoma. There are three kinds of Squamous cell carcinoma. There�s a poorly differentiated, a moderately well and a well differentiated cancer. The poorly differentiated are much more aggressive. Your�s is kind of a middle ground, a moderately well, so it�s not the most aggressive of the three. But it�s also not the least aggressive of the three, it�s right in the middle. They do respond well to chemotherapy, radiation therapy. The way I looked at it when I did the biopsy, it was too big and too wide spread, in my opinion, to do surgery on it. I just don�t think surgery is in your best interest. We�d have to remove so much of the tongue, I don�t know if you�d even be able to eat very well afterwards. You�d might have to eat with a tube after that. Every time you ate it would make you cough.
So we�re dealing with a base of tongue cancer which is the most common type of cancer that we see. Where we need to proceed from here is we need to do a PET scan to scan you from the top of your head all the way down to your feet.
That is so we�ll know if it spread. The lump I feel in the left neck I feel fairly certain that it spread. This will tell me if that lump is something else or whether its cancer. Now when we do a PET scan it will not only show tongue cancer, it will show if you have a cancer in your intestines, in your liver or any other kind of cancer it will pick those up too. So it�s a real good scan, it�ll pick up any cancer you may have in your whole body.
We need to make sure it�s no where else and I do not think it�s anywhere else. I think it is most in the neck.
The PET scan is not only to look for cancer, you are also put in a special position and we use the way you are in the position when you do your scan to do your treatment.
In other words your scan will also be used for your treatment.
I wouldn�t recommend you leave town. So I want to make an appt for you to see oncologist as soon as possible. Should have an appt tomorrow sometime.
*** Note: I just remembered I was diagnosed as having skin cancer back in Jan 2014 and had it removed. The bleed happened in March.

Larry, are you able to go to a comprehensive cancer center (CCC) to get treated? They use a team based approach where ll the specialists are on the same page and work together making your treatment plan. I can send the list of CCCs if you need it. Ask the doctors if this is related to the skin cancer you recently had.

Wonder why the doctor told you not to leave town? To me that sounds like an unusual request for someone just diagnosed and not starting treatments yet. Im curious about what your doctor is doing when you have the PET. The PET is a test not a treatment.

Best wishes!

Standard treatment for this type of cancer - BOT (usually HPV related) rads and chemo - I am assuming by base of tongue they do not mean your oral visible tongue - they mean down your throat - If this is the case the he's on the money with recommendation for rads and chemo. If it is on your physical tongue - one that you lick an ice cream cone with - I would get a second opinion as this cancer is generally NOT related to HPV and usually the first line of defence is surgery, followed by rads and chemo as it can be more aggressive. As Christine said don't leave this in the hands of a local hospital - get to a top cancer center If at all possible. I am sorry about your dx.. Hugs and we're here.

I saw an RO yesterday, he concurred I have a SCC BOT tumor along with some nodes. I am to go get blood work up and then I am to see to my regular Gastro Dr (I have Ulcerative Colitis) to talk about putting in a Feeding tube. Then Weds the PET scan to see if there is more. During the PET they make a mesh mask for me which they say will give the RAD more accuracy.
I wasn't told if it was HPV related. I was told 8 weeks of RAD and then chemo once or twice a week. I am to see Chemo Dr next Mon.
I was given Script for Norco.
There is no CCC near me. I am told my oncologist is best in town.