I'm almost five years out of treatment from tongue base cancer. Feel better then I have in my life till yesterday when I felt phlemg in my throat and it was blood, YIKES!!!! happened 5 more times
Had all kind of CT scans done lately, had tongue and back of throat where it's bleeding biopsied 3 months ago and all is fine.
Saw ENT I never saw before today who didn't give me much hope, I'm very upset to put it mildly.

Has anyone ever had this experience???????? I'm not ready to accept anything other then a shoddy biopsy job.

Will be grateful for any info good and bad.

Thank you, Marliz

My xerostomia is so bad that if I mouth breath during the night, when I get up in the morning I actually hack up phlem from my throat that has streaks of blood in it. Much of the time my oropharynx and throat have thousands of little paper like cuts on it and when I swallow anything that is citrus etc. it is like it's on fire. The tissue is just dired out to the point of actually cracking and bleeding.

Having said all that, I would still get a second opinion, and a scope. I would pick another guy for an opinion and get it checked out. U of P has a great faculty and that would be my choice in your area. At this stage of the game no one has used the C word attached to a firm biopsy report. Hold on to that and get another opinon as soon as you can from a place that has several docs that can look at you during the same visit. The Penn team would meet that goal.

Hi Marliz,
I have had two terrifying bouts of coughing up blood which turned out to be nothing they could attribute it to. I am a total larnygecomty and had had absolultely no problems when I suddenly heaved a blood clot on my way down the staircase to work in 2004. This episode went on for 2 hours. I was afraid I would bleed to death but couldn't stop bleeding long enough to call dr or 911. All CTs and bronchospsies are clear. Guess is infection. Had a repeat occurence two years later. Still all clear.

If yours are anything like mine, I might drown in blood if no one can get to me in time. It doesn't seem to be cancer related, but my drx can not determine what causes it. But then, starting with an unknown primary kinda indicates that I'm not your usual patient, so cause is usual. For what it is worth, I am being treated at Univ of Penn in various depts. They are great guys.

Take care,
Eileen

I did not mean to imply that you should not follow up on this. Do so immediately. I just mean that don't hit the panic button yet.

Take care,
Eileen

Hmmmmm ...a few questions...What were the scans done for? a suspicious area?, or routine surveillance. ..and the biopsy?? again, was it for a suspicious area? In that case, I would certainly pursue more tests, including a laryngoscopy.

If the biopsy had been done more recently, I would say that it was some bleeding from that. But after three months that shouldn't be the case. It certainly might be a problem area that didn't somehow show on the scans and the biopsy but now has developed enough to be diagnosed.

When you say that you saw the ENT yesterday..Did you go because of the bleeding? She "didn't give you much hope,"...what did she mean?

I am confused, but it sounds like you have things going on that need attention and that you don't have a clear picture...Maybe you wrote quickly and simply didn't realize that we can't read between the lines.

Thank you all, I could just cry I'm so happy to hear from you all that give me hope.

Brian, the day this happened our humidity was 6 an all time low. Was working outdoors, throat was so dry it hurt so that could explain it. Had my water with me of course but too busy to be drinking all the time.
With your problem do you have to be very careful not eating scratchy foods like toast, pretzels etc? Right now I'm afraid to eat anything but peach smoothies.

Eileen, too late , already hit panic button, but keep telling myself " someone that feels this good couldn't be dying of cancer".
Coleen, yes I went because of the bleeding.

The ENT more or less said that it looked really bad to him but that he had no comparison since he hadn't seen me before. Treatment was a little Radiation but I doubt that on top of all the IMRT and BT I've had they would dare . Really there wasn't much hope, I needed to accept the reality of cancer, these things happen.

The scans were done because the ENT kept sending me for lung xrays every year that if they found it then, would be too late. Almost had to beg for the Script to get a lung CT scan. They thought they saw something in the liver and breast area. Now I'm really getting scared! so they did a full pelvis and had a mamogram. NOTHING, thankfully.

These Drs. are part of the UPMC system since they've taken over most hospitals here.

When I first went to my regular ENT I wanted a PET or MRI scan of head area as I was considering dental implants since I was feeling so good and hoping to live a long time, felt it would be a good thing. After the pain of the biopsies I backed away from putting anymore stress on my body, with implants.

But NO he talked me into getting biopsies instead. I did have leukoplakia on side of tongue that always worried me so thought getting rid of that would be a good thing. Yes he did a good job there, tongue looks great, no problem.

The back of throat thing started when I went to ER with something stuck in throat when he(first time I saw him) saw something in back of throat he thought needed biopsied it was fine.
Seem to get bigger since, so when he did tongue, took more biopsies of it.

When I went for after surgery checkup my tests were lost, kept saying I'd been in different hosp. So thats been on the back burner, even after he called me saying there was absolutely no sign of cancer. Declared this cancer cured but that I may develope a new cancer but this one was history.
Was feeling on top of the world till I coughed up the glob of blood that kept choking me for, seemed long, but was probably only a couple mins. till it settled down.

Yesterday I had a few small blood clots today less but still some.

Don't know if you mind me going on but feel I need to share my experience with you to reinforce second opinion. This happened a few years ago.
As I said I had developed Leukoplakia on side of tongue after IMRT. Another "young whippersnapper ENT" had me all signed up for 1/3 removal of tongue. He had done the Trach when I had the brachytherapy at UPMC and also in office biopsies on these areas.
When I told my seasoned older surgeon he said NO NO, did biospy in office without numbing area and ordered MRI. all clear, saving 1/3 tongue.

Don't know what to expect today when I see ENT that's been seeing me since my older surgeon retired, but will demand a MRI before he does anymore cutting on my throat.

Thank you Brian from the bottom of my heart for starting this site for us.

Continued good luck to all of you.

Sincerely, Marlene

PS Something else I believe is true and may have already been covered but less then 2 years out of treatment I developed cataracts in both eyes where there had not been a sign of pre-radiation.
You'll find few Drs. that will admit to this being a side effect of treatment.
Thankfully I had both removed and have 20/20 vision.
Also on synthroid post IMRT. A couple things that we need to check for after treatment.