| Joined: Sep 2014 Posts: 16 Member | OP Member Joined: Sep 2014 Posts: 16 | 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.
40 y.o., undiagnosed, spitting up blood past 4-5 months at random intervals, several enlarged lymph nodes under chin and neck, biopsy of one showed benign viral lymphadenopathy. Still being monitored by ENT.
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | 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
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Sep 2014 Posts: 16 Member | OP Member Joined: Sep 2014 Posts: 16 | 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.
40 y.o., undiagnosed, spitting up blood past 4-5 months at random intervals, several enlarged lymph nodes under chin and neck, biopsy of one showed benign viral lymphadenopathy. Still being monitored by ENT.
| | | | Joined: Sep 2014 Posts: 16 Member | OP Member Joined: Sep 2014 Posts: 16 | Scratch that. Still getting intermittent streaks of blood in sputum. Hmmm...does anyone know of a good ENT in the SF Bay Area?
40 y.o., undiagnosed, spitting up blood past 4-5 months at random intervals, several enlarged lymph nodes under chin and neck, biopsy of one showed benign viral lymphadenopathy. Still being monitored by ENT.
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | 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!!! ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Mar 2014 Posts: 286 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Mar 2014 Posts: 286 | 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. Cheers, Dave (OzMojo) 19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil. 31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014) 11August2014 PET/CT clear. 17July2019 5 years NED.
| | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | 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.
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: Sep 2014 Posts: 16 Member | OP Member Joined: Sep 2014 Posts: 16 | 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.
40 y.o., undiagnosed, spitting up blood past 4-5 months at random intervals, several enlarged lymph nodes under chin and neck, biopsy of one showed benign viral lymphadenopathy. Still being monitored by ENT.
| | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | 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.
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | 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
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | |
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