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Nasopharyngeal Cancer and Agent Orange

HAWVET's picture
HAWVET
Posts: 318
Joined: Apr 2006

Are there any one besides myself who have naspharyngeal cancer and had served in Vietnam. The person can be a relative, spouse or family member. Am trying to establish numbers and whether a claim was processed with the Veterans Administration.

vetswife
Posts: 9
Joined: Dec 2005

I have been looking for anyone with this situation for 3 years. My husband was in the Navy on the USS Oriskany. I am very eager to hear if you've had anymore replies. Even if we could make the connection to Agent Orange, until we hear further, the sailors aren't allowed benefits from Agent Orange. What years were you in Vietnam? Did you have any medical problems while there? I hope your treatments are going well.

HAWVET's picture
HAWVET
Posts: 318
Joined: Apr 2006

Unfortunately, you are the only one who has replied to this thread and it has been more than a month since I posted it. First, I thought the sailors won that presumption of exposure on a case concerning a navy man named “Haas”. I have not been keeping up with it since I was in the Army and was in country and presumed to have been exposed.

The biggest hurdle is that the VA does not recognize nasopharyngeal as one of the diseases caused by exposure to Agent Orange.

I believe the incidence rate for Vietnam veterans are higher than that of the rest of the nation. The cancer society reports a .7 of 100,000 for the nation. If these were the actual rates, then there should have been only 27 cases total for those who served in Vietnam. The number is at least 100.

After a lengthy period, I lost my case. I am now pursuing other action and had hoped to get responses so we could together work on a plan. There are hardly any veterans or family members who visit this forum. I believe you are aware of the biennual Agent Orange Update prepared by the Institute of Medicine (IOM) Briefly, their review is the basis of the VA determining what illness is caused by exposure to Agent Orange. I have discovered that the adhoc committee is meeting again in December and the studies would result in Update 2008. Update 2006 was released last year. I have submitted written testimony for the committee.

Possibly next year, I am considering submitting my same testimony to our Senator who is the Chairman of the Senate Veterans Affairs Committee. I want to see if the adhoc committee will provide a response to my testimony.

The below web sites list the committee members and provide some basic information.

http://www8.nationalacademies.org/cp/CommitteeView.aspx?key=48892

http://www8.nationalacademies.org/cp/projectview.aspx?key=48892

vetswife
Posts: 9
Joined: Dec 2005

I just read a part of the Veterans Health Initiative: Health Effects from Chemical, Biological and Radiological Weapons pdf - Independent Study Course Released: October 2003 Sponsored by Dept. of Veterans Affairs & Employee Education System. It says it's a training document for "Colleagues in Quality health Care" "clinicians treating our nation's Veterans must be aware of the specific conditions ..."

What I noticed was the only time they mentioned nasopharyngeal cancer was to state: "Long-Term Effects. Despite having only limited medical literature on long-term health effects from exposure to mustard agent and Lewisite, in their 1993 review, the NAS committee concluded that there was some information linking exposure to these agents and certain long-term health effects. The broke down their findings based on the strength of the supporting evidence as: 1. Causal relationships a. The evidence found indicated a causal relationship between exposure to mustard and Lewisite chemical warfare agents and the following health conditions: . Respiratory cancers" [listed respiratory cancers were] .nasopharyngeal .laryngeal .lung.

I believe that by endorsing this training document to health care clinicians treating our nation's Veterans they have admitted that nasopharyngeal cancer is a respiratory cancer.

I have read a lot of appeals to the VA on the VA website. I have noticed that there are some appeals that have been granted. But the biggest thing is Your Doctor has to STATE that "more likely than not" this cancer was caused by Agent Orange because...
They want
1. the statement without doubt from the doctor
2. the reason and facts why the doctor says it
3. why the doctor feels nasopharygeal cancer is considered a respiratory cancer instead of head & neck. [I personally think all of them should be included]

The latest granted appeal I saw was Citation Nr: 0811586 Decision Date: 04/08/08 Archive Date: 04/23/08 In this case the VA examiner agreed with the doctor and evidence.
"THE ISSUES
1. Entitlement to service connection for nasopharyngeal
cancer, to include as due to exposure to Agent Orange.

2. Entitlement to service connection for left ear disorder,
including hearing loss, to include as secondary to
nasopharyngeal cancer.

3. Entitlement to service connection for dry mouth and
throat, and dysphagia, to include as secondary to
nasopharyngeal cancer"...

"CONCLUSIONS OF LAW
Resolving doubt in the veteran's favor,
1. Resolving doubt in the veteran's favor, nasopharyngeal
cancer was incurred during active military service,
including exposure to Agent Orange. 38 U.S.C.A. §§
1101, 1110, 1112, 1113, 1116, 5103-5103A, 5107 (West
2002 & Supp. 2007); 38 C.F.R. §§ 3.102, 3.159, 3.303,
3.307, 3.309 (2007)"...

"ORDER
Service connection for nasopharyngeal cancer, to include as
due to exposure to Agent Orange, is granted."

http://www.va.gov/vetapp08/files2/0811586.txt

If you have a VA oncologist who agrees, you have all your medical documentation, and your doctors show reason as well as proof, it seems to help a lot. Of those that I see denied, they seem to have missed one or many of these points. Sometimes because the vet knows about other granted appeals they try to use that as proof and don't have the above 3 needed steps. As I said, those are denied, because they don't weigh the opinion of anyone without a medical degree (VA oncologist being the best, from what I've seen. Besides the 3 items above, I've also seen vets that let others prepare their paperwork for them, assuming that the VFW rep. or even a VA rep knows best (but in those cases they didn't). So please make sure your appeal is handled by someone that understands and hopefully has experience.

I'm so glad you're trying to get the Senate Committee to hear you. I tried to get our local congresswoman to write up a bill and she said she'd look at a bill if some one else wrote it up. I guess without a lot of constituents with NPC, it's not worth her time to educate herself for the one that's trying to get her help.

Maybe soon we'll hear that the courts have returned the decision back to the original way of allowing navy and air force to be allowed the benefits - at about the time you get the committee to see that NPC is a respiratory cancer. Maybe the granted appeals for NPC could help you also in presenting it to the committee.

I've been trying to find out for about 3 years now. If I could find one more on the ship of 3,500 maximum then that would be 2 out of 3,500, instead of 2 out of 200,000. But if you have the data to prove the numbers of all the Vietnam Vets that would help. I'm thinking, like with the appeals, a private doctor and VA doctor on your side should help too.

???? I have one question for you. How do you know there's a hundred Vietnam Vets with NPC?
Thank you for your time and help.

HAWVET's picture
HAWVET
Posts: 318
Joined: Apr 2006

First to answer your question on the numbers with NPC who served in Vietnam. I based this on a cancer study in the below website.

http://www.nap.edu/openbook.php?isbn=0309048877&page=392

The study only included those born between 1929 and 1953. It was focused in a certain area in the United States. The study revealed that in this survey, there were 80 cases with NPC. It is not clear whether they are all Vietnam veterans.

I quickly scanned all the cases on the VA website that were appealed. There are about 80 cases of veterans who appealed their NPC cases, although not all were Vietnam veterans. That plus some other documents were the basis of my conclusion. I recommended to the ad hoc committee that they should require the VA to provide them with statistics and I believe this information would be significant.

On the case you cited, I submitted that as one of 4 cases I submitted to the committee. The most important part to me is not that the case was approved, but the physician stated that the pharynx should be considered part of the respiratory system. If you had inserted my name in that case, my symptoms were similar and I had filed for the exact same disabilities. That same case also has statements that the numbers of veterans with NPC are increasing.

A doctor’s statement is very important. The best document I found on how a doctor’s statement should be written is within the guidelines provided by the Disabled American Veterans.

My recommendations to the ad hoc committee included a three page summary with an additional 25 plus pages of supporting documents. Through that website I provided you earlier, I had gotten in contact by email with the Chairman and also the person responsible to supervise the assembly of documents. She wrote that she would make copies of my testimony for the committee. They were happy to receive input from veterans.

That was the intent when I opened this thread and was very disappointed with the response. I thought that if they heard from a half dozen of us (to include spouses), then the committee may look at our cancer more closely.

I believe in your case, the importance is not locating someone with cancer from the ship. I would be more concern that those aboard ship are presumed to have been exposed to Agent Orange. Then, it does not matter where you served. Have you researched the "Haas" case? I think he won his case. Are Navy personnel now in the same category of ground based troops?

I believe the adhoc committee is the key in whether VA recognizes NPC as being caused by Agent Orange. If we fail at this route, then our congressional delegates are our other alternative. Of course, you can independently submit a claim but my thoughts are that it should not be approved only for a few.

If you want to submit testimony, please let me know. You can check out the websites. I do not know if it is too late, but I can provide you with the administrators email address.

vetswife
Posts: 9
Joined: Dec 2005

I wasn't aware the IOM was still updating the AO info. I hope they take your information and look at it from a fresh perspective.

I think the study you were talking about with 3 vietnam vets with NPC out of 80 with NPC is a very high rate. I'm not good at figuring out ratios. But I do know the incidence rate should be 3 out of 300,000 NOT 3 out of 80. 3 million Americans served in the armed forces in Vietnam during the 1960s and early 1970s, the time of the Vietnam War. So that looks like the expected number of Vietnam Vets would be only 30. Since you have found 80 appeals, and with those that haven't filed (like my husband) and those that never appealed, it looks like there's well over 300% more than would be expected.

Even the study you mentioned shows it's too high for the 80. (That was why I was looking even one other sailor from the USS Oriskany. It would be more than coincidence for 2 cases out of the few thousand on the ship)

I'm glad you have information to submit to the Chairman of the Senate Veterans Affairs Committee. I'm sorry I don't know who that is or your even his state :(

I research for hours and copy all I find because then I have to leave it, it's months until I can find the time to devote to researching again. I'm certain that soon the dots will start connecting. I'm so glad you're on top of it.

toniY
Posts: 3
Joined: Jan 2009

My dad was diagnosed in 1992 with nasopharyngeal carcinoma. he had radiation and lived 7 years in remission. He was in Vietnam and was in the Navy. I am going to have to research his years of services but I believe he was there in the late 60's.

HAWVET's picture
HAWVET
Posts: 318
Joined: Apr 2006

ToniY, thank you for your response. Did your Dad file a claim with the VA before he passed away? I do not know the details, but he may have been eligible for a claim if he was actually in Vietnam. All military personnel are presumed to have been exposed if they were in country. There is difficulty for those Navy personnel who were off shore on the ships in the surrounding waters.

Concerning Agent Orange, cancers were listed in one of four categories. Lung cancer would have been in Category 2 “Limited/Suggestive” Evidence. Nasopharyngeal cancer (NPC) is in Category 3 “Limited/Inadequate” evidence. Since his doctor would suggest that his NPC was most likely as a result to exposure to Agent Orange, he would have a better chance of approval Combined with his lung cancer, he had an excellent chance of having it approved.

I had hoped to receive many responses on this thread, but my hopes have diminished. I have not admitted defeat and am still trying.

toniY
Posts: 3
Joined: Jan 2009

I recently became interested in my late father's NPC diagnosis after I had sinus issues myself. When I researched his diagnosis it became clear that I do not have these symptoms, but more importantly I became troubled by the link between his war exposure and this disease. My Dad did recieve military benefits for diabetes, which he contracted while on tour. I never knew that both his lung CA and NPC could be contributed to his Vietnam tour as well. I feel angry and hope that you are able to secure more information for yourself.

HAWVET's picture
HAWVET
Posts: 318
Joined: Apr 2006

ToniY,
Glad to hear that your dad had a claim with the VA. Type 2 diabetes was linked to Agent Orange. I can understand your feeling angry if your dad did not associate his cancer with Agent Orange. We have recognized that information is not reaching out to all veterans so we have a monthly column in our local paper.

I also was thinking of survivors benefits for your mom. I do not need the information, but if his passing was a result of his VA recognized disability, then your mom would be entitled to survivors benefits. If he passed away because of lung cancer or NPC, then there is a different course of action. Thanks for your concern on my case. Hawvet

ST4RK3Y
Posts: 3
Joined: Jan 2009

Hello,I joined this community about 4 months ago. I never did anything with it.. I actually came here to vent a bit. I am a soon too be 28 year old Nasopharyngeal Cancer Survivor. My father Robert Charles Nicklow is a Vietnam Vet that is 100% Disabled/Compensated for Agent Orange, Diabetes Type 2, Loss of Hearing, PSD and Sterile. He Currently has Colon Cancer that has spread to his liver. His Tumor was removed and from his colon and he now has a colostomy bag. His Colon Cancer is not recognized by the VA even though Liver Cancer is. He has been fighting his cancer for 5 years now.

I was diagnosed when I was 24 years old in 2005 I do believe If my terrible memory serves me correct. For the longest time I have searched for reasons why this Rare form of cancer had destroyed my life. The Doctors at the University Of Pittsburgh Medical Center told me it was a cancer caused by Chemicals. Before my treatment they asked my work enviroments and such. I grew up in front of a steel mill in Sharon Pennsylvania. Many People in Western Pennsylvania and Eastern Ohio have got some form of cancer. However what was weird to me is that I was 24 years old and as healthy as ox. I worked as a waiter for Quaker Steak and Lube Resteraunt in Downtown Sharon since I was able to work as a teenager. I have never worked in any mill or been exposed to chemicals. So for years now Ive always asked my self why.. and I came up with two logical answers. The Theory that I believe is my father is a proven agent orange exposed Vietnam Vet. This means that my dads DnA or something along that line has been altered and passed on to me. My whole life as a child I had Sinus problems and Dr's thought I had Asthma. I never treated for Asthma and played sports and learned to just deal with it. When My father was about 5 months in two his diagnosis and surgery for his cancer I had a lump form on the right side of my neck the size of one half of a NFl Football and my nose started bleeding all the time out of the blue. After makeing my way to pittsburgh and being correctly diagnosed by real doctors and not small town quacks.. (by the way they almost killed me) my first question was how did I get this type of rare cancer? My oncologist said,"Shawn somehow you came into contact with chemicals that caused this. See I thought I had got it from smokeing even though I had quit a year and a half before I had gotten sick.

Then It dawned on me that all of this has to be stemming from the Agent Orange Exposure that has plagued my poor father his whole life after the military and now its takeing my life. After reciveing Intense Chemotherapy and Radiation everyday I was lucky to make it out alive. Before my Sickness I was attending Penn State University at the local Shenango Campus in Sharon and I had needed a history class for that semester so I took Vietnam 101. I got involved with the course so I could learn and understand my father and the vietnamese People. I learned about Agent Orange and how it was used by the military to kill vegetation so the Viet Kong had no jungle to hide in or eat from. I seen video of how american soldiers doused eached other with it and sprayed each other. It was as if nobody knew it was like the most potent weed killer ever invented and it would harm you. I seen videos of the vegetaion before and after agent orange spraying..

I believe in my heart that Agent Orange is the answer to my question of why me and how did I get this at such a early age. The oncologist also said to me that Nasopharyngeal Cancer isnt common in young guys.. more of older men in that vietnam age bracket.. 55-68 years old..

My other idea of why is that I lived in front of a steel mill that had pvc chemicals leaked into the local river in the 80's.

Even though I am a cancer survivor my life is very hard to deal with. It seems that everday things are getting worse then the last. I try to get my spirit back that I had when I first started the fight for my life back..

The radiation and chemo affects are to much for me to deal with.. Loss of memory, feeling at the tip of my fingers, Teeth are literally rotting out of mouth as we speak because I have no saliva glands that work. My mucus gland in my throat make a waxy substance now instead of mucus and it slowely makes its way to my gag reflex every couple of days causeing me to make snorting sounds in attempts to hocker it up. If that dont work then I puke and Puke and puke.. once it falls on that gag reflex im screwed. Shitty part is im 28 years old and I havent made it to a check up for the cancer in two years. I have no F*@#ing Insurance (God BLess America) and I cant even pull the damn welfare card because my dad is compensated by the VA and im on his bank accounts in case he dies so he says... My credit is ruined from when I was sick I had to live off of credit cards and do all of my driveing and appts alone 74 miles away in pittsburgh! Ps thanks Cancer Society for the $200 dollars per fiscal year.. that was about a joke. I would be dead right now if I didnt have great insurance right when I got sick. I was finishing my last semester to recieve my degree at psu and just got hired by Mid wetern intermediate Unit Four (Non Profit Government Agency that Caters to School Districts Supposedly). I just got hired in and had a bout 2 sick days when I got the shock of my life! My dad was laying on his death bed still in ICU.. ok,, Im starting to tell ramble and tell portions of my terrible life stories.. sorry people!

Back to the point!

So what im trying to say to the Poster is I would Love to assist you and any other Nasopharyngeal Cancer Patients or Survivors that think they got ****ed by AGent Orange! You can call me or email me or message me on here! Shawn.starkey@gmail.com 724 931 1353. My father is in hopes to cure cancers and help with any research or anything.. Thanks

-Shawn Starkey

ST4RK3Y
Posts: 3
Joined: Jan 2009

Is their anymore Vietnam Veteran Children out their affected like me? I think the VA Should recognize us after all we are the seeds of these vets that have been doomed because of their mistakes in warfare!

chinaberry25
Posts: 8
Joined: Apr 2009

I am sorry to hear of your cancer at such a young age. My husband was In Country in 1970 and has cancer of the left tonsil. We have applied for Agent Orange but takes close to a year for approval. My husband has never smoked and has drank very little. We have just finished treatment and now if beginning to eat. He has gotten excellent care here in Albany, GA. The treatment is very rigid as you know. If you have to get cancer, the mouth is one of the worst places to have it. Was your cancer possibly related to HPV? This is a possible cause of it too. I know that you are bitter, so am I. I have tried to live my life as a good person and you see people every day that are bad people and nothing ever happens to them. But hopefully you will be able to maintain a healthy life in the future.

tiny69_70
Posts: 3
Joined: Jul 2011

My husband just finished treatments for tonsil cancer. He was in Vietnam 69-70. The VA decided not to check if it was related to HPV. I think they do not want to know that it was not. They might have to recognize it as another type of cancer caused by Agent Orange. He does not smoke and drank a very occasional beer, and so he does not fit the usual Tonsil Cancer profile either. If we can get enough people to band together and insist the VA recognize Agent Orange as the cause, our Veterans will get the help they need.

vietnamvetwife68
Posts: 9
Joined: Mar 2009

in Nam in 1968...He has been diagnosed for the third time with this. But this 3rd time it has spread to his lungs....He took chemo 3x, but has refused further treatment. He has just about given up..just started him on antideppressants and a food enhancer. they just started to kick in abfter 4 days.....Very little eating and drinking ...I just prayer that he continues to eat...he is awake about 4 -5 a day...not much time to eat...Just tell me what to do and I will do it!!!!!!!!!!!!!!! Any help is appreciated...........Thanks

Jack D
Posts: 2
Joined: Aug 2009

How is he now?

gysgtjd
Posts: 1
Joined: May 2009

My husband was told today that he has squamous cell cancer on his tonsil. He was Vietnam in 1966-1967 and then 1969-1970. He had heavy exposure to agent orange and receives the Agent Orange Report. Could Agent Orange have caused his cancer? He has not been to the VA yet but is receiving some VA compensation already. Thank you for any information you can provide.

dejohnso
Posts: 7
Joined: Jul 2009

My husband was diagnosed with squamous cell cancer of the tonsil with spread to base of tongue and lymph nodes several months ago as well. He was also a Vietnam vet from 1967-1968 and had heavy exposure to agent orange as well. He is in his fourth week of chemo and radiation and had the tonsils and one lymph node removed. If your husband has any pain soreness of the mouth and throat when in treatment ask the doctor about a prescription for Miracle Mouthwash - it is a true miracle and is about the only thing that helps allow him to eat. As to the disability - get the Agent Orange Exam through the Veterans Administration and file a claim as soon as possible because even though tonsil cancer is not on the presumptive list if it does become so in the future the claim will be retroactive. Also, contact Mary Burr Paxton at:

MPaxton@nas.edu
Mary Burr Paxton, PhD, DABT
Senior Program Officer
Population Health and Public Health Practice
Institute of Medicine
Keck 871, 500 Fifth St., NW
Washington, DC 20001
(202) 334-1731
fax: (202) 334-2939

She is involved with the Veterans and Agent Orange review done every two years by the Institute of Medicine - they are looking at tonsil cancer and need more information on veterans with this disease - so please pass this info on to anyone else. The most recent review stated that Tonsil cancer needs to be studied more - so hopefully if enough of us get information in to them the next one will come out with stats to support tonsil cancer being caused by Agent Orange.

royarogers
Posts: 6
Joined: Nov 2010

copy and repost this anywhere u can

http://www4.va.gov/vetapp09/files5/0940472.txtHaving

found that the Veteran had qualifying service in
Vietnam, exposure to herbicides, including Agent Orange, is
presumed. Under the regulations, service connection is
presumed with respiratory cancers, defined as lung, bronchus,
larynx, or trachea. However, throat, tongue, and tonsils are
not specifically on the list of presumptive diseases
associated with Agent Orange exposure under 38 C.F.R.
§ 3.309(e).

In order to ascertain whether cancer of the throat, tongue,
and tonsils were consistent with respiratory cancers, the
Board obtained an expert medical opinion in October 2009.
The examiner opined that:

[The Veteran] was diagnosed with T1N2bMx
squamous cell carcinoma, left tonsil and
left base of the tongue on October of
2004. The risk factors for this
condition is often related to exposure to
both alcohol and tobacco. Based on
records, [the Veteran] never smoked or
consumed alcohol.

In accordance with the medical
definition:
The respiratory system includes the
nostrils, nasopharynx, oral pharynx,
glottis, trachea, bronchi and
bronchioles.

Oropharynx (as part of the respiratory
system) includes base of the tongue, the
soft palate, tonsil and the side and back
wall of the throat.

Based on the medical definition, [the
Veteran's] squamous cell carcinoma of
left tonsil and base of the tongue is
part of the respiratory system and there
is no exposure to both tobacco and
alcohol that can attribute to his
malignancy.

Having determined that the tonsil and base of the tongue are
part of the respiratory system, service connection for this
disorder is presumed under 38 C.F.R. § 3.309(e).
Accordingly, his claim for presumptive service connection for
throat cancer and squamous cell carcinoma of the left tongue
base and tonsil is granted.

As provided for by the Veterans Claims Assistance Act of 2000
(VCAA), VA has a duty to notify and assist claimants in
substantiating a claim for VA benefits. 38 U.S.C.A. §§ 5100,
5102, 5103, 5103A, 5107, 5126 (West 2002 & Supp. 2009);
38 C.F.R. §§ 3.102, 3.156(a), 3.159, 3.326(a) (2009). In
this case, the Board is granting in full the benefit sought
on appeal. Accordingly, assuming, without deciding, that any
error was committed with respect to either the duty to notify
or the duty to assist, such error was harmless and need not
be further considered.

ORDER

Service connection for throat cancer and squamous cell
carcinoma of the left tongue base and tonsil, as a result of
exposure to herbicides, is granted.

____________________________________________
L. HOWELL
Veterans Law Judge, Board of Veterans' Appeals

Department of Veterans Affairs

kobri331
Posts: 1
Joined: Jul 2009

My brother-in-law served in VietNam. Recently treated for Nasopharengeal cancer. looking for info on the incidence of thid type of cancer in Vietnam veterans as this is a rare cancer for Americans. Grateful for any help. Thanks

Jack D
Posts: 2
Joined: Aug 2009

I'm a Viet Nam Vet(Army-68)and a 12 year survivor of this rare cancer plus prostate cancer, no history of either one in my rather large family. I have submitted a claim with the VA just recently. I do know of another former vet recently diagnosed with the same throat cancer and have advised him to file as well.

Barton14
Posts: 1
Joined: Aug 2009

My father served in Vietnam and has since been diagnosed with quite a few things as a result: Hepatitis C, Diabetes, 4 years ago beat Tonsil Cancer (thank god), and now has just been diagnosed with Nasopharyngeal Cancer...
My family and I have absolutely no doubt in our mind that Agent Orange is a direct factor(except hep C from an air inoculation gun) in my dads health now. My father was always a very healthy guy, and especially not a heavy smoker or drinker. How could he possibly get two of the rarest forms of cancer and it NOT be related to agent orange??- this is the most frustrating, glaring, obvious correlation. The VA has got to own up to this...and I plan on contacting Mary Burr Paxton (from the above post).
At this point I am of course more worried about him getting through the nasopharyngeal cancer. Can anyone give some insight into what they went through and what to expect and any suggestions? I also believe nutrition is vital and am strating him on a macrobiotic diet.
Any help is greatly appreciated!

deesecalvin
Posts: 2
Joined: Feb 2010

My dr said this was rare cancer to get unless I was Asian...I'm not. But I was in Viet Nam from 1967-68 and was exposed to agent orange. He knows this is the cause of my cancer, but can't prove it. No cancer in my family history.

jeroamem4
Posts: 1
Joined: Nov 2009

Hi,
I just found your posts here today while doing research on agent orange and tonsillar cancer. My husband served in Viet Nam in the early 70's and five years ago was diagnosed with a stage 4 tonsillar cancer. His appeals to the VA have been denied, but a hearing is scheduled next month and I am trying to amass as much info as possible. He has an American Legion officer representing him. I have printed out all of the posts connected to this board, and will be studying them. My husband has an appointment with his ENT this week to discuss the subject of agent orange exposure and tonsil cancer. Thank you for posting the info about a decision made by the VA awarding benefits for this cancer previously. If you have any new information regarding this type of cancer, I would appreciate it if you could post it. Thank you for all your efforts in this matter. You seem to have worked tirelessly and researched a great deal.

My husband has never smoked, done recreational drugs, used oral tobacco, or used alcohol heavily. There is no family history of cancer. He also has had prostrate cancer. He served in An Thoi and we found a web site with several posts of vets with tonsillar cancer that had served there as well. My husband said this was a very small base and so found the reported cases of tonsillar cancer very interesting.

Thanks again. I appreciate the info presented herein and any new info that you may have.
God Bless you.

HAWVET's picture
HAWVET
Posts: 318
Joined: Apr 2006

Hello Jeroamem4

I am leaving for an extended trip this evening so I cannot spend much time researching, but your husband has interesting cases. My memory is sort of failing, but I am curious why your husband did not include prostate cancer. I believe it was later recognized as one of those cancers associated with Agent Orange. As such, it can now be included in claims and will most likely be approved. Click on the below link:

http://www1.va.gov/opa/pressrel/pressrelease.cfm?id=1796

Your American Legion rep should have known this unless he was unaware that he had prostate cancer. Check with him on the possibility of amending the claim.

As for tonsillar cancer, I am not too familiar of the chances. Since you are seeing an ENT, ask him to give a statement that in his/her opinion, that the cancer may have been associated with exposure to Agent Orange. The DAV has a good statement recommendation, but I do not have time to look it up today.

In many of the cancers, it had been determined that there are insufficient number to make a ruling, yet I firmly believe that the numbers of those serving in Vietnam has a higher percentage rate as compared to the rest of the population. The information of his comrades in An Thoi reflects that. If you check the VA web site on appeal cases, you will also find increasing numbers.

Best of luck

dragnphly
Posts: 1
Joined: Dec 2009

My father was diagnosed with NPC in 1988--after a long 2 year battle he passed in 1990. Few treatments were successful then. He served in the Air Force at NKP Thailand '70-71, I believe. My uncle attempted a claim with the military. At the time we were told Dad's cancer was due to his smoking. He flew Search and Rescue missions over Vietnam (A-1 Sandy's) and was exposed to Agent Orange.

Hope this is helpful in your continuing research. Best of luck.

Hondo's picture
Hondo
Posts: 5927
Joined: Apr 2009

I am not a vet but my friend next door is and does have problem from Agent Orange. I got NPC in 2003 and could not figure out how. My doctors told me that the only way I could have gotten NPC was if I lived in Hong Kong somewhere, I told them never been to Hong Kong but did do a lot of work in Africa. I am wondering now if possibility this could be something I got from my friend next door. It is funny that only he and I are suffering from almost the same problems although he does not have NPC, his doctors can’t figure out exactly what his problem is but the poor guy can’t walk straight with out falling down.

I am normally on the Head and Neck Cancer site here on CSN but will monitor this site as well, Thanks for all the info and help.

deesecalvin
Posts: 2
Joined: Feb 2010

I was Army Infantry from '67-68 and was in contact with agent orange. I was diagnosed with Nasopharyngeal cancer in 1993. I had radiation treatments which left me with no saliva glands. One side of my neck was burned because of the radiation treatments. Then in 2002 my cancer came back on the other side of my neck. I had surgery, radiation and chemo. I have been clear of cancer since. VA does not recognize this type of cancer as being caused by agent orange, but I know it was. It's sad how we can serve our country but when we need them they turn the other way....

HAWVET's picture
HAWVET
Posts: 318
Joined: Apr 2006

ReeseCalvin, thank you for your response. First some background. VA makes a determination on the effects of Agent Orange through the biennual update by the Institute of Medicine (IOM), the latest being Agent Orange Update 2008. That update added a couple more illnesses. NPC was not one of them. Nasopharyngeal Cancer (NPC) had been and continue to be in Category 3, whereby it was determined that there is inadequate/insufficient evidence to determine whether an association existed with Agent Orange.

Someone above made reference to the IOM and how to contact Ms Mary Burr Paxton. She was the chief administrator with the IOM when the committee last met to discuss issues for the updates. I had already submitted testimony to her in December 2007 prior to the release of update 2008. I do not think that is really the answer and was trying to determine the best way to approach our concern.

As a result of these updates and after Update 2002, the VA entered into the Federal Register in May 2003 excluding NPC as having a positive relationship. The VA determined that presumption of service connection based on exposure to herbicides used in Vietnam was not warranted. This is completely different from you saying the "VA does not recognize this type of cancer....". With that "not warranted" phrase, it does not mean a claim cannot be submitted.

BUT, the majority is disapproved. There are at least 10 cases that have been approved by the VA, so the approval/disapproval depends on information in your application. I submitted an application with the VA in 2002 and my claim was disapproved. Unfortunately, after some extensive research, I gained a lot of information. If I had to do it again, I would probably handle it differently. There are VA or other veteran related physicians who state that Agent Orange most likely was the cause of the veteran's cancer.

It is not necessary to prove that you were in contact with Agent Orange, There is a clause that anyone who served in Vietnam is presumed to be exposed to Agent Orange, no matter what your assignment.

I started this thread a year and a half ago and you can see that there is hardly any response. If you look at the incidence rate, there is probably about one case per 100,000 in the general population. There are at least a 100 cases and possibly more in the less than three million who served in country. This figure alone would reflect that Vietnam veterans were contracting NPC at a rate of 3 plus per 100,000.

I wanted to formulate a plan of action. With the lack of response, I had decided not to pursue it any further. I have since changed my mind and decided to possibly find a way to re-open my case or have the VA relook the possible relationship with Agent Orange. It is a difficult road, but I will give it one last shot and hopefully, open the door to other veterans who had NPC.

MarineE5
Posts: 762
Joined: Dec 2005

HAWVET,

I have been following this thread for a little bit. I called Ms. Paxton as her name was mentioned on another site or post. Although I didn't have the same cancer as you, I had Base of Tongue cancer and the person posting said to call Ms.Paxton if you had Tonsil cancer so she could add you to a list to be presented to a board in the near future.

Long story short, I called her and told her about my cancer and she basically brushed me off and seemed unconcerned about me being a Vietnam Vet with Head and Neck cancer. Needless to say, I was very disappointed.

I am going to be sending you a private message in the very near future.

WELCOME HOME

My Best to You and Everyone Here

HAWVET's picture
HAWVET
Posts: 318
Joined: Apr 2006

MarineE5

I understand your frustration after your contact with Ms. Paxton. I had corresponded with her by email and sent her a three pages testimony. After some more investigation, I have concluded that it will be difficult for them to take input from us veterans. My testimony was probably just briefly noted without any action.

By law, the Institute of Medicine (IOM-Ms Paxton's organization) is the agency responsible and provides recommendations to the VA via the Agent Orange updates. I have not yet determined what should be done for them to reopen studies of the relationships of cancers/diseases and Agent Orange.

There was a congressman who introduced legislation for NPC, but I think it was a token introduction to appease the individual. It would have been very difficult to get it approved.

In the meantime, I have sought advice from VA's regional office to check how I can re-open my case. Thanks for the private message and will be responding shortly.

Welcome back!

HAWVET

Marvin25
Posts: 1
Joined: Apr 2013

My father reasonly died from nasopharyngeal cancer and I filed a claim on my mother's behalf.  My father was on the agent orange register for heart condition.  However, the nasopharyngel cancer is not in the respiratory system the claim was immediately denied. his canceer was through the nasal and logged in the back of his neck.  How can I get additional information to file an appeal with the VA

MarineE5
Posts: 762
Joined: Dec 2005

Marvin25,

I am guessing that you used a Veteran's Service Officer with a Military Organization. If you have, you may want to help them by researching the VA's site and looking at the Board of Appeals rulings for each year. It can take a little bit of an effort, but you will see which cases are approved and denied. Read those that are approved, even if the nasopharyngeal cancer is not on the Agent Orange register, Service connection may be approved by case and "Expert Opinions" in favor of the Veteran.

My Best to You, Your Mom, and Everyone Here

HAWVET's picture
HAWVET
Posts: 318
Joined: Apr 2006

Marvin25,

Am assuming the claim has been denied and you are now in the process of appealing the claim.  I think I read just about all nasopharyngeal cases at the VA site and my guess is less than 10 percent are approved on appeal.  The key to the approval process was locating a doctor who will place on paper that Agent Orange cannot be ruled out as being the cause of the cancer.

VA appeals website:  http://www.index.va.gov/search/va/bva.html

Here are three cases that were approved.

VA Citation Nr 0216265, decision date 11/13/02

VA Citation Nr 0303647, decision date 03/04/03

VA Citation Nr 0601099, decision date 01/13/06

I had a listing of a few more and as recent as last year, but it has been so long that my claim documents are not as well organized at this time.

When on site, do not place the word "Cancer" in the Search blank area.  Just type in the word "nasopharyngeal" and those cases would go to the top.  The cases would give you a general idea on why and how they were approved.

My case was disapproved and I had a very bad service officer.  I could not located a doctor who would provide me that statement.  I was not too concerned since I am drawing retirement pay after 30 years of service.  Plus, I have disability payment based on some other issues.

There is one case (think there were two) that was approved when the doctor stated that you cannot exclude the pharyngeal from being part of the respiratory system.

Wishing you the very best.

GC64
Posts: 2
Joined: Jun 2012

I read your comment about your Dad.  My husband died in 1992 from NPC.  I am in the process of an appeal right now. My husband was stationed in Thailand, and they only approve cases were the vet was a MP, working in the perimeter.  In my case the physician no longer lives, and the cancer treatment center of America, destroyes all records after 7 years.  I am sure to fight a losing battle, but there is always a little hope.   

letalane
Posts: 1
Joined: Oct 2010

My father served in Vietnam and actually died of metastatic cancer after being diagnosed with nasopharyngeal carcinoma. This was 23 years ago. My sisters and I are now fighting for accrued benefits from VA for service related disability leading to death. We have all of his medical records and just looking at them shows that the physicians from VA and any other doctors he saw for his symptoms didn't have a clue as to what was going on or how to treat what was happening. My father was 35 years old when he died and he too became a diabetic that we have discovered through some research was exclusively developed in those exposed to the chemicals during the vietnam war. I ended up in this forum doing research in hopes of finding concrete facts and documentation to send back to VA to support our claim. I would greatly appreciate any information that anyone has on the disease and what the VA is doing about.

MarineE5
Posts: 762
Joined: Dec 2005

letalane,

First, let me say that I am sorry to hear that your Dad died at such an early age.

Secondly, if you haven't already done so, you should locate a local Service Officer to help you with your claim. A Service Officer is a person that has been trained to know what the VA is looking for in the paperwork. The Service Officer is with the local Military Organzations such as the Vietnam Veterans of America, Veterans of Foreign Wars, Disabled Veteran of America, etc.

As you mentioned, your Dad became Diabetic and that is on the list of persumed connections to Agent Orange. Your Service Officer or you can search the VA site ( va.gov ) and look for the Board of Appeals rulings over the years and see which cases have been granted or denied and see what it takes to win your case. Most of the cases that I saw that were granted service connection to Agent Orange had a Service Officer or a Lawyer involved. I have seen a few cases that the person won on their own.

My Best to You and Your Sisters

hank4569
Posts: 3
Joined: Oct 2010

letalane: A vietnam vet (bluewater navy) came into my office about a month ago on a matter having to do with his father. He takes care of his elderly father. This man's (not the father) whole right side of his face has been removed. The skull, the right eye, right jaw hinge, upper right half of palate were all removed. His body rejected a prothsethis attempt. Reconstructive surgery failed. He can't get a job. It's not that he lacks skills, but I believe his disfigurement prevents hiring. He filed in 1984 (denied), re-opened in 1985 (denied) and re-opened in 2008 (denied). I have never represented anyone in a VA case, but I took a look at his records. I deal with government agencies in the course of my work. I think sometimes the tendency of laypersons representing themselves or loved ones is to be outraged (rightly so) when faced with government logic. I agree with the gentleman who referred you to a representative of a Veteran's organization or an attorney skilled in these matters. Good luck.

GC64
Posts: 2
Joined: Jun 2012

My husband passed away in 1992. He also had Nasopharyngeal Carcinoma. Maybe if more had been known about this cancer, the cancer would have been detected earlier, and he could have gotten treatment. He died at 39 yrs of age. I have just found out that his base in Thailand was added to the registry in 2010, and have filed a claim in March. We (and his doctor) always thought it was just a cronic sinus infection. There have been cases that have been approved, it just takes time. I have a service officer to help me, and she seems to think that we could win this on an appeal. If there is anything I can help you with let me know. traudel@bellsouth.net I know it has been a couple of yrs since you posted this, maybe you check in at times.

alsa412
Posts: 1
Joined: Apr 2013

Hello,  I realize you posted to this site over 2 years ago but I am wondering what the results were with your claim.  My husband died in 1993 of the same cancer as your father and I am just now filing a claim.  I know it will be a longshot because he died so long ago and because he was bluewater Navy on an aircraft carrier off the coast of VN.  I do remember him saying that he used to flyover the Vietnam jungles and spray Agent Orange.  He was there 1965-1967.

mcb121et2
Posts: 1
Joined: Nov 2010

I am in the middle of appeal for cancer of left tonsil. Diagnosed in August 2009 and currently cancer free. It was stage 4 so I have low probablility of survival for long. I was rejected of course for agent orange connection. I was in DaNang from 1969-70. I am trying to get the connection to service through my diabetes disability, but I fear it will go down the tube too. I haven't gotten on the agent orange registry, but will be immediately.
I had my evaluation yesterday and the Dr said he has to find a report that connects diabetes to tonsil cancer, but I think I can see some reports of connection to it raising the likelihood of getting cancer. And I sent a letter from my Dr stating that my diabetes caused my immune system to be compromised and increasing my chances to get cancer.
Anyway the VA says I am disabled, granted me a pension, but my SS disability is too much to get that.
I had 5 rounds of chemo and 35 radiation treatments, and had a peg tube installed and just drank water while in treatment. Anyway I'll try to keep up with what's happening, and I am represented by a DAV service officer.

MarineE5
Posts: 762
Joined: Dec 2005

MCB,

Don't give up hope on the VA. You have a Service Officer and that is a good thing. Some of the things you mentioned have me confused so if you would, could you send me a private message by using the CSN Email up in the top left hand Box above. Send it to MarineE5.

Also, hopefully HAWVET will read you post as well, he is a bit more informed then I am about certain things.

tiny69_70
Posts: 3
Joined: Jul 2011

My husband was in Vietnam 1969-1970 and was just diagnosed with Tonsil cancr. He is on the Agen Orange Registry. He too was rejected for Agent Orange.

tiny69_70
Posts: 3
Joined: Jul 2011

My husband served in Vietnam and was just diagnosed with Tonsil cancer.

MarineE5
Posts: 762
Joined: Dec 2005

Tiny,

I sent you a private message

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