Hello everyone,

I'm new here. I'm just looking for some advice. Some background history:

1) About 2+ years ago, I noticed two small pea sized lymph nodes on bilateral sides of neck. Both were firm but mobile. I went to an ENT, he felt it and said that it was nothing to worry about. He even said everyone in his office would say the same thing.

2) A year after that, I noticed they were a bit bigger. The one on the left side actually had a new smaller one, barely palpable, right above it. I schedule another visit to the ENT, but I decide to see a new guy. In this time, I also found new hardened lymph nodes under the chin. The new guy does an ultrasound and says they are all under 1 cm, mobile, and look fine on the ultrasound. He also said that real cancerous lymph nodes would feel like granite, and mine seems spongy to him. I disagreed on that one. But, he said, let's wait and see if they grow.

3) I decide to get a third opinion. I see another ENT, and he listens, feels up my lymph nodes, scopes me, and says he can feel them all. In his mind, he thinks they are 1-2 cm, and in fact, we can both see one small lump if I turn my head and push it out with my muscle. So, he schedules me for surgery to do an excisional biopsy of the one we can see.

4) It's removed and sent to pathology. The path report comes back and the histology says the lymph node is 0.9cm, and histologically is viral lymphadenopathy. So, good news! ENT schedules 6 month follow ups.

5) I went to my 6 month, ENT feels me up, says everything looks good. However, I told him I started spitting up blood a few weeks ago. I wasn't sure if it was caused by my acid reflux. But, I changed my sleeping posture, and acid reflux dies down, and no more blood. But, I tell him I often taste blood, even though I no longer see dark red blood streaks in my spit. He doesn't think anything of it.

6) About a month after my 6 month follow up, I find a new, small enlarged lymph node under my chin area. It's next to the two larger ones I found a year ago. I thought I should bring it up to the ENT on my next visit in Dec. It doesn't seem to be worrisome. However, what does seem worrisome is this:

About a month ago, I started seeing blood streaks in my spit again. It happened after I ate some rough toasted sourdough bread. I kinda freaked out about it, and I started getting a little anxious. Then, I decided to change up my sleep position since I thought it could be related to my acid reflux since it was acting up again. I did that, and after a few days, the blood started disappearing from my spit. I could still taste blood, but I couldn't see the dark, obvious blood streaks there. So, I decided to forget about it and mention it at my Dec follow up. However, today, I ate another rough toasted sandwich, and I started tasting blood again. I spat in the sink and saw streaks of blood in my spit again. I'm really concerned now.

I've read from others who had oropharyngeal cancer that the cancers bled easily. Especially on palpitation. I can't figure out where the bleeding is coming from, but I think I will eat some toasted sourdough before my next ENT visit to show him and maybe he'll see the bleeding on the scope. But, I think the guy is old school and thinks you actually need to see a tumor to know there is cancer. I know, however, that these HPV tumors can be really small and hidden to scopes. So, now I'm wondering what I should do. I'm pretty sure my next scope will be clear, since I can look way back there with a dental mirror and flash light. I don't see any visible tumors. Would a CT scan show any small tumors? And, do you guys think it's normal to spit up blood after eating something rough like toasted sourdough sandwiches? Or is this really abnormal? The bleeding typically stops after half an hour. But, I can still taste that iron bloody taste back there.

Anyways, sorry for the long post. I'm just trying to figure out what my next steps are besides rescheduling a new visit. Maybe I should consult an oncological ENT.

I personally wouldn't wait. Maybe find the name of a good ENT who deals specifically with oral cancer (there could be a small tumor that is hard to spot - when you eat something rough it may drag across it) better safe than sorry.

hugs

Well, the bleeding has stopped. After half an hour, I spat again and see no blood. I will keep checking throughout the day.

I think I should just get the other nodes biopsied. Maybe the one they removed was ok but the others have cancer. I dunno. Shrug. One thing the ENT said was usually, with oropharyngeal cancers, there's usually just one or two big lymph nodes. But, I have all of these small little ones. He thought it was lymphoma. Could still be. I'll just wait and see. I figure, if it's really cancer, the lymph nodes would have grown MUCH bigger than they are now after 2-3 years. But, they're all still about 1 cm or smaller.

Scratch that. Still getting intermittent streaks of blood in sputum. Hmmm...does anyone know of a good ENT in the SF Bay Area?

newpatient, welcome to OCF. Our members are from all over the world so the odds of finding a referral to an ENT here may be slim. Call your insurance company and ask them who is available. Try to look for one who does surgery for OC as those are the ENTs who have extra schooling and should be most experienced in OC. Hopefully you will not need our group!

Good luck!!!

Welcome to OCF. If they cant find a tumour they can always aspirate one of the swollen nodes. There are a range of factors the ENT consider, not all of the possibilities are sinister. Don't Google symptoms in isolation. Try to keep calm and allow the medical investigation to run its course.

newpatient, there are tons of choices for you. I would do what was suggested, call your insurance and find someone they will pay. 1 cm isn't small at all and blood isn't something to take lightly.

Hi folks,

I decided to schedule an appt this Thurs. with another ENT in the same practice group as the ENT who did my excisional biopsy. Unfortunately, it's hard to find ENT's with oncology backgrounds around my neck of the woods. Most of those guys only take referrals. Anyways, I'm going to push for FNA biopsies on all three of the larger nodes. I have two under or near my chin, and another one on the other side of my neck. The spit is running clear again, but I can still taste what seems like blood.

Thanks for the responses. I'll keep you guys abreast. I was just wondering if anyone else had this problem of spitting up blood after eating really rough foods.

I have been spitting up blood since 2006. My doctors are concerned about it but I'm not and nothing has shown up on scans or EGD's.

Welcome to OCF. Glad you are getting another opinion. Try to stay calm as the saying it isn't cancer until proven (via biopsy). Personally, my take is spitting blood is not all that common in oral cancer. I'm sure it happens but it is not reported all that often.

Hang tight and wait until the ENT gives you an exam.

Good luck,
Don

Sheez. Spoke too soon as usual. Spitting up blood last night. Woke up early this morning, checked again, blood throughout spit. Wow. Thanks for all of the replies. I'll be sure to update when as things progress.

You're doing well, keep calm and let the medical investigation run its course. Eliminating the possibilities can take time to diagnose. Keeping yourself calm while that's going on is very important, otherwise you end up adding anxiety symptoms into the mix.

Don't compare with Uptown's blood spitting, he's a unique case. His doctors are frequently baffled at the medical miracle he's still with us!

Much thanks for the replies everyone. I thought it would be prudent to post a reply since someone else might find this thread useful. Anyways, I went to the ENT yesterday. In hindsight, I feel that maybe I should have went outside their practice to another ENT practice group. The ENT I saw was very nice, affable, and thorough. But, he said he is basically a clone of my other ENT who did my biopsy. They trained in the same place, and they basically follow the same protocols. Anyways, he checked my lymph nodes, and he basically said that although they are definitely palpable, he would not worry about any of them. He also said that since my last biopsy was benign, that furthered cement his view. He then asked about the bloody sputum. He thought it could be an arterial malformation. So, he did a scope. He didn't see anything. He also reached into the back of my tongue. Didn't feel anything. He said the next time I start spitting up blood again, to call in to his office and schedule an appt that very day with him so that he can locate the bleeding.

Anyways, I'll update the thread at some later time. I've had this blood in sputum thing three times in the past 2 months. So, it will probably happen again soon. By the way, he thought that it was probably just light bleeding, like bleeding from the gums. But, I assured him that it was quite a lot of blood, and there was blood clots in my spit and streaks of blood throughout. Fortunately, though, I'm spitting clear again the past day and a half now. *knock on wood*

Again, much thanks for all of the responses. They were helpful and pushed me towards the right direction.

Well that's good news -but I would maybe try and correlate anything you may be eating or drinking that could possibly cause and issue? Hugs.

Thanks for the response, Cheryld. I will try to look for more blood in the future. But, what's really unnerving me is all these new firm lymph nodes. I just found another new one today! A really small one along my jawline close to the ear. I will see my regular ENT again on my routine follow up and mention all of these new issues. Maybe I'll push for another ultrasound.

Ok, I think I've finally figured out where the blood is coming from. The blood spitting is getting much more frequent. I am spitting up blood almost every other night. It seems to start coming up when I lie down for a few hours. I was using a curved tongue cleaner wrapped in some tissue paper these past few months to figure out where the bleeding was coming from. I was able to get it WAY back into the throat and touch my epiglottis. Yeah, my gag reflex is pretty good. Anyways, I would rub it along the tonsils and tonsillar crypts. I would swipe the back of the tongue along the right, middle, and left sides. I couldn't find anything. Well, last night, after I was spitting up quite a bit of fresh red blood, I started reaching way deep near the tonsillar crypts with my tissue wrapped contraption. Near the back of my tongue along the border of the right tonsillar crypt, I brought up quite a bit of fresh blood on the tissue paper. I kept doing it for 10 minutes bringing up more fresh blood. It eventually stopped. But, wow. That was pretty alarming.

I have another appt. with the ENT on the 18th. But, I'm going to try and schedule one next week. At this point, with all of my symptoms, I think I should expect the worst and hope for the best. But, I don't know what the ENT will plan on doing. He may just try to scope me again and find nothing. Personally, I want him to ultrasound the other lymph nodes, take FNA biopsies, and I dunno, what else can we do? Would a CT scan help? I don't see any tumor like growths back there. Would a PET-CT scan be considered way overboard? I've heard of people getting these before an official cancer biopsy is made (supposedly, they do this to help guide where to do the biopsies). I just need some suggestions to formulate a plan with the ENT. My feeling is, these guys are now swimming in the deep end with me and are kinda clueless on the next steps. Seriously. One of the ENT's thought one of my lymph nodes was an ingrown hair! The most recent one thought the bleeding was either caused by a AVM (which is kinda absurd) or from my old tuberculosis.

Suggestions are much appreciated.