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Joined: Sep 2014
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Hello folks,

I was wondering, has anyone (or does anyone know of anyone who has) self referred themselves to an oncologist before a definitive diagnosis was made? I've seen some people on here who have tag line histories that seems to suggest that. I am just wondering because I have seen a new ENT and GI doc who is not sure what is causing my spitting up of blood. They did a fuller upper GI scope, an endoscope, and an ultrasound but have not found anything. I do have palpable lymph nodes that are about a cm, but so far, no one has been willing to do another biopsy.

Just wondering if I should try and see a more knowledgeable subject matter expert before finally calling it quits on this. I think I'm turning into a hypochondriac.

Thanks

Last edited by newpatient; 02-03-2015 03:20 PM.

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.
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My advice is do some research. Find out the TOP ENT (who deals with cancer) in your area, find out the TOP GI guy in your area and ask your dr. for a specific referral to them.

Chronic blood loss can lead to a whole host of problems depending on the amount. Aside from not knowing what is causing it, there is the possibility of heart attack do to lack of blood, anemia - etc...

My husband had hemorrhoids - he bled daily. At one point the hospitalized him thinking he had colon cancer (one dr said there is no way he could lose that much blood from a hemorrhoid there had to be something very serious wrong - he had a hemoglobin of 67 (men should be around 167) they thought he would have a heart attack getting to the hospital. But it turns out it was long term chronic blood loss from a nasty hemorrhoid.

So you need to know what is causing it.

as for self referrals to an oncologist. I'm thinking without a report saying you have cancer - it's unlikely they will see you.

I'm sure others have an opinion.

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
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I say call and ask! Our Head and Neck Cancer Center has a "new patient coordinator" who was amazingly supportive and guided us through the entire process - what tests they wanted done and whether those should be done by the docs at the community hospital or if they would prefer to do them at the cancer care clinic. I remember there were certain tests they would have rather done themselves, but we already had them done at the community hospital, like the PET scan and the biopsy. They actually sent to the community hospital for cell specimens from the biopsy so they could analyze them at the cancer center.

Good luck, fingers crossed, hope its nothing serious.


Caregiver to husband with SCC BOT HPV+ T4N2cMO stage 4a
CT scan 7/23/14
Biopsy 8/7/14
PEG tube in 8/15/14, out 4/2015
35 rads, Cisplatin X 3 - finished 10/27/15
cancer free May 2018



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Definitively keep seeking a diagnosis. I do not think oncology is the right place though. A referral to them is right when you have a cancer diagnosis. A good ENT should be able to sort out. 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
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Thanks for the responses. Unfortunately, at this point, I've seen 5 different ENT's, 3 regarding this blood spitting thing, and a GI doc. One of the ENT's is highly rated here. No one can figure it out.

My biggest concern is it being cancer, obviously. But, no one can see anything obvious.



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: Jan 2013
Posts: 1,291
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You certainly have some medical condition but if 5 ENTs have looked it over and say it ain't cancer, it likely is not. At least go to bed not worrying it's cancer. I hope you get it diagnosed and treated quickly.


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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