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Adenocarcinoma in a branchial cleft cyst

jkinobay's picture
jkinobay
Posts: 247
Joined: May 2007

Age 57 Male. Recently had branchial cleft cyst removed. Pathologist found minute trace of adenocarcinoma in interior lining. No sign of abnormal cells in lymph nodes, exterior of cyst or the stump of the cyst. Has anyone had or heard of a similar situation?

jkinobay's picture
jkinobay
Posts: 247
Joined: May 2007

Thanks for the nav tip. I had already tried that and in fact tried it again just now. The problem is that my cancer is apparently extremely rare and there so far are no other references out there or reports from other survivors. So, I just put it up broadly hoping someone might know someone who knows someone............well you get the idea.

Thanks again for your tip.............JKinobay

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

I am not familiar with your particular diagnosis, sir, but I am a head and neck cancer survivor (15 hour surgery to replace half of tongue with tissue and nerves from arm, along with removal of neck lymph nodes)and I can tell you after spending much time on this site that cancer, regardless of location and severity, shares some characteristics from survivor to survivor (and you are a survivor).

I would recommend spending some time in the chat room talking to people who have experienced various cancers.

Beyond that, feel free to contact me directly on my email at this site. I would be more than happy to talk with you about what I know about cancer.

In any event, let's hope that you have nothing to worry about.

Take care.

jkinobay's picture
jkinobay
Posts: 247
Joined: May 2007

Thanks for the reply soccerfreaks. As luck might have it there are a couple of research pathologists at MD Anderson in Houston who supposedly have some experience with my particular situation. As it stands right now I can only find mention of 5 other cases in the world where the cancer originated in a branchial cleft cyst. All others "seemed" to have originated there but turned out to have metastasized there from the lungs or thyroid gland. So, my Pathologist is sending my slides and blocks (whatever they are) to the experts at MDA. Crossing my fingers and praying profusely for a concurring opinion within the next week or so. I'll post the results here when I get them. Thanks again, stay well.

jkinobay's picture
jkinobay
Posts: 247
Joined: May 2007

Well, soccerfreaks, sometimes the second opinion is not what you wanted. The Path. in Houston looked at slides and blocks and think mine was not the primary but rather it metastasized from the tonsil area. They found HPV 16 in the tissue which they say came from that area. So, the ENT wants to put me under and run the scopes to look around and possibly do a tonsillectomy and biopsy anything else suspicious, probably in the next 2 weeks or so. This gettin old ain't for sissies. Stay well..............

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

Hi,In November I had a branchial cleft cyst removed from the left side of my neck.I never smoked a day in my life,my doctor said the chances of this being cancer was one in a hundred. You know were this is going,I was diagnosed with squamous cell carcinoma.One lymph node was invoved.I had biopsies of various parts of my tongue and throat and my left tosill was removed,revealing a occult primary.I went through six weeks of radiation and chemo therapy.It did not metastasized anywere else.Did they schedule you for a P.E.T. scan yet? I,m 47 years old. When you recieve your results please let me know! I will be more then happy to share any information with you.

jkinobay's picture
jkinobay
Posts: 247
Joined: May 2007

Thanks for the reply vinny59. You probably noticed in my previous post back to soccerfreaks that the Path in Houston thinks my BCC was not the primary site, but rather it metastazized to the BCC from a tonsil or that area. My ENT wants me back in for a scoping and possible tonsillectomy. I'll keep you posted. FYI, I am 58, I was a smoker but quit almost 25 years ago. I also drink alcohol which can be a factor. Tell me about your chemo and radiation. Likely I will have to go that route if they find more cancer in the throat area. How are you doing now? BTW, have not had a PET but depending on the scope results I will probably get one. Did yours show anything? Stay well..............

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

My chemo was done in the hospital for four weeks. I was recieving the radiation everyday for six weeks.I was one week in the hospital and two weeks out. The chemo was rough but not as bad as I expected. I suggest eating alot before for your treatment dates because you will lose wieght. I dropped 30lbs. but I didn't need a feeding tube. My taste buds finally started to come back. Chemo does make you sick and the radiation screws with your taste buds but there is no pain from the radiation. My neck area did burn but they had lotion that helps with that. Also I made sure I listened to my doctor when he said to gargle every hour with baking soda and salt, It helped keep mouth sores away.I still see my cancer doctors on a regular basis for now, but the cancer is gone. I can tell you that time heals alot, so keep the faith. Its never as bad as you think. My P.E.T. scan came back negative after the surgery. Stay positive!!! Talk to you soon......

jkinobay's picture
jkinobay
Posts: 247
Joined: May 2007

Vinny59, very encouraging and thank you so much. For me next step is 7/25, general anesthesia, go in with scope, biopsy anything suspicious, if nothing suspicious remove tonsils for biopsy. I am hoping/praying they don't find anything anywhere and that for now I can avoid rad/chemo and do frequent monitoring with scan, phys exams, etc. A long shot maybe but if they don't find anything on this expedition I don't want to race to radical treatment. I'll keep you posted and thanks again. Stay well. BY THE WAY, did you have mild or moderate sinus problems before the cyst appeared or any of the surgeries? That is what started all of this for me. For over a year I have had a very mild sinus drainage just aggravating enough to occasionally plug my ears. Two ENTs, an allergy specialist and my PCP-a DO all said everything looked fine. Tested for 10 allergies all negative. Tried Flonase, Astelin and Nasonex. Some relief and over time seems to be improving but I am now suspicious that my sinus problem is tied to my cancer problem. My branchial cleft cyst appeared in about 2 months time and was a big as a golf ball when removed in May. Anyyay, your thoughts? Thanks again.

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

Hi, I never really had any sinus problems before this. My branchial cleft cyst appeared out of no where and grew to the size of a egg.

jkinobay's picture
jkinobay
Posts: 247
Joined: May 2007

ENT removed the tonsil 7/25, still recuping from that. At the age of 58 not easy but I'm improving steadily. While in there he scoped everything else including the esophageaous and found nothing suspicious. He only removed the "bad" tonsil saying that would be easier on me. He did remove the adenoids and they were clear. He said he could not quite get all the cancer at the base of the tonsil but that he was confident that today's radiation techniques have a very high chance of eliminating this particular form of cancer (squamous cell carcinoma). So, off to the oncologist next week and see what program he suggests. ANYBODY EVER HEARD OF DR. RICHARD ROSENBERG IN TUCSON, AZ.? That is who I have been referred to saying he is "the best". So, Vinny59, dust off your notes cause I'm going to need your guidance. I am a chicken with pain but am not ready to hang up my spurs. Normally very positive but to be honest since this heaping helping of bad news it is very difficult to remain positive. Your thoughts? JKINOBAY

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