FAQ - Neuroectodermal Tumor, Melanotic
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Has anyone ever encountered "Melanotic Neuroectodermal Tumor of Infancy" or know of someone who has?


There are very few cases of this cancer even being reported or documented since 1918. Has anyone ever encountered this type of cancer personally or know of someone who has? My son is 21-months-old and is currently undergoing chemo for the disease and reacting well so far to the treatment. Just wondered if there are others who have had experience with it or not. From the stats that we have seen so far from research, not many survive.
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Talk to these people if you have not already:
http://www.rarediseases.org in the US

http://www.cancerbackup.org.uk in the uk  (+ info)

?Ever hear of Melanotic Neuroectodermal Tumors Of Infancy?


My son was born with these rare tumors, Melanotic Neuroectodermal Tumors of Infancy. He is seven now and I have never met or heard of any one else with this condition. All I can find is case studies and medical info. I know all the info about the tumors, but we want to know of some one else who has dealt with or is dealing with this.
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Have you talked to NORD? They will know, or know who to ask.

http://www.rarediseases.org/  (+ info)

Ever heard of, or know anyone with Primitive Neuroectodermal Tumor?


I have a cancer called Primitive Neuroectodermal Tumor (PNET). I know it is rare, and for curiousity sake, want to know if anyone has either had it, or knows anyone with it or who has had it, and what their experience is or was with it. Thanks
My tumor is in the left side of my chest, against the chest wall, and had pushed through and wrapped around a few of my ribs. Prognosis seems to be good, finished chemo, radiation, heading into surgery soon.
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Hi Anna,

I have seen a few patients with PNET as I work in the field.Symptoms, outcomes, everything is so variable depending where it is , how treated etc.
You might find it interesting to go to virtualtrials.com (this web page is endorsed by National Cancer institute) .They have also chat rooms where even the rarest tumors find others who have it.
I hope you are doing well and everything will go very well.
All the best from mary a  (+ info)

do you know about neuroectodermal tumor treatment?


pick the best answer please....  (+ info)

Primitive Neuroectodermal Tumor Cancer while Pregnant?


I am 22 years old, and just found out i am pregnant. I was diagnosed with Primitive Neuroectoderal Tumor in 2006. In the past year I have gone through 4 surgeries (remove tumor, reconstruion, put in and removal of port), 23 cycles of chemo (11 of vincristine, doxyrubicin, vincristine, cyclophosphamide, etoposide, and ifosfamide, and 12 cycles of cyclophosphamide and topotecan), 25 rounds of radiation. My tumor is in the chest. Does anyone know of any research or ideas?
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Anna,
Are you in remission or still going through treatment? I'm trying to understand if you are worried about further treatment if you are pregnant or if there will be problems with this pregnancy given all your prior treatment...  (+ info)

How long does it take for a brain tumor to grow and cause symptoms?


Brain Tumor or something else?
I have been experiencing buzzing and ringing in ears for about a week now! My ears also hurt and I also have headaches, nausea, tiredness, and am extremely dizzy. I had a MRI 6 months ago and everything came back negative, they found nothing. Previous to that I had a CT scan done 2 years ago and everything normal. I am a 29 year old female, with no family history of brain tumors, and was just wondering if a brain tumor could develop that fast (6 months) and cause those symptoms in that amount of time, please help?
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Just because there isn't a brain tumor doesn't mean that everything is okay. If your symptoms are bothersome, take your MRI to a neurosurgeon.

Many people go undiagnosed with a condition called chiari malformation. It causes all of the symptoms you mentioned, and several others. Just go to this website and see if it sounds like you. If it does, you'll want to be sure the neurosurgeon you see specializes in chiari.

The following link is to an informational page from the chiari institute in New York:

http://www.northshorelij.com/body.cfm?id=6409&oTopID=6458&PLinkID=6407

Best of luck to you. This condition is treatable, but not curable. But much can be done to help you, if that's what you have. Most importantly, some doctors are still uninformed and will not diagnose chiari. You need to see a specialist.  (+ info)

What are the signs of existing a tumor in the brain or the respiratory system?


My mother feels a bad smell in his nose.It is something like the cigarette smoke.She has headache in the mornings and then it wears off.This stink or odor sometimes reduces and some days increases.My mother has always had splitting headaches during her life.Can these contribute to a tumor in the brain?Also,recently the CT of her mind showed nothing of a tumor or the like .The doctors say that she has no problem.But continuously she feels that smell.
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Because she has a clean CT I would think that the problem might just be in the sinuses. If she has problems with allergies or smokes, drinks lots of coffee or alcohol those would be the things to look at changing. Hope she will be well soon.  (+ info)

What happens after a tumor is removed in the hospital?


After a small cancerous tumor is removed from one's chest, what happens? How long is the hospital stay, and what are the possible side effects? Thanks for answering and God bless!
Ma'am i'm sorry to hear that. You're a strong, devoted mother i must say. Stay strong and God bless. My bf was recently diagnosed with cancer. He said it was a small tumor in his chest, and he said he was going to get it removed. Two days later, he said he was in pain and went to the hospital. I don't know how long he will be there, and his older brother has his phone, so i can't really contact him either. His brother just told me what he said, so i'm trying to stay calm and not worry because i'll end up stressing out and having an anxiety attack or something.
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Without complications you might be able to leave in a few days, but much depends on your age, overall health, and what they find during surgery. With malignant tumors one does not ordinarily know how much cancer is present until the surgeon can take a look. CT, PET, and MRI are all good tools but can often miss the extent of the disease. Only surgery where the doctor can actually go in and look around can determine how many visible tumors there are. He'll remove as many as he can.

Further treatment depends on the outcome of the biopsy, the type, location, the stage and grade of tumor. If it is a known high grade aggressive tumor you may be offered chemotherapy or radiation as an adjuvant treatment, but that is probably optional.

My son has had three major surgeries with over a hundred various sized abdominal tumors removed (he lost his spleen and 90 percent of his right diaphragm) and he was out of the hospital in about 8 days each time. The thoracic surgery took the longest to recover from since they went in through the back. So depending on where the tumor you have is located may determine how long recovery will be.  (+ info)

Does anyone else have oral melanotic macule? How can it be treated?


It's a dark spot on the lip. I think it may come from smoking.




p.s. I really would like to get an answer from someone who actually has a dark spot on their lip. not someone who just googled what I already typed.

That's been done, there's not a lot of information on it, so everything you google, I've probaly already seen. Thanks!
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I have a spot on my lip, very small-like, and it looks like a freckle in a way. I had the dermatologist look at it and he said that it was fine. As always, make sure that it does not change shape, color or raises.  (+ info)

Can a local tumor in the lung spread to develop bone metases without affecting the rest of the lungs?


My father has been diagnosed with non-small carcinoma in the right lung. The doctors also found a lesion in the back bone L4 which is reported as neoplastic. A biopsy on the lung tumor was performed and confirme malignancy. On that basis they are presuming that the bone lesion is also a malignant cancer tumor. However, what seems to be strange is that the CT scan results for the rest of the right lung, the left lung, abdomin, intestines, bladder, prostate, pancreas are totally clear. His oncology blood markers are also clear. The bone scan apart from the suspected lesion at L4 is totally clean, and his blood test results are acceptable. His general health conditions are good. He was on a diet, stopped it and gained 3KGS within a span of 10 days. He simply does not show any of the symptoms of a stage IV cancer patient. The doctors said they cannot operate because of the bone lesion. Had it been only in the lungs they would. We are concerned that they might be making the wrong connection
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definitely get a second or third opinion.. this is too important!  (+ info)

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