Adenocarcinoma in a branchial cleft cyst

jkinobay
jkinobay Member Posts: 298 Member
edited February 2023 in Head and Neck Cancer #1
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?
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  • jkinobay
    jkinobay Member Posts: 298 Member
    unknown said:

    This comment has been removed by the Moderator

    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
    soccerfreaks Member Posts: 2,788 Member
    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
    jkinobay Member Posts: 298 Member

    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.

    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.
  • vinny59
    vinny59 Member Posts: 1,036 Member
    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
    jkinobay Member Posts: 298 Member
    jkinobay said:

    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.

    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..............
  • jkinobay
    jkinobay Member Posts: 298 Member
    vinny59 said:

    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.

    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
    vinny59 Member Posts: 1,036 Member
    jkinobay said:

    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..............

    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
    jkinobay Member Posts: 298 Member
    vinny59 said:

    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......

    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
    vinny59 Member Posts: 1,036 Member
    jkinobay said:

    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.

    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
    jkinobay Member Posts: 298 Member
    vinny59 said:

    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.

    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
  • mcb2005
    mcb2005 Member Posts: 16 Member

    jkinobay, I saw your post about the branchial cleft cyst carcinoma. I was just informed that I have this also. The Doctor thinks we found it early. The squamous cell carcinoma is located inside the cyst. The cyst has not attached to my lymph node yet. I'm waiting for MD Anderson to set up my first appointment. Anby words of advice? What kind of treatment and how bad was it? I'm actually looking forward to having this cyst removed it's a pain. Appreciate any information. Thanks

  • jkinobay
    jkinobay Member Posts: 298 Member

    Well, the good news is they found it apparently very early. My hope and prayer is that it is the Primary and not a metastasis. That is the very first question you need to ask. In my case it was not the Primary and MD Anderson recommended looking at the tonsil and sure enough that is where the primary was. So, please keep that in mind. I think it is rare when the PRIMARY forms in a lymph node or branchial cleft cyst.

    The SECOND very important question you will want to ask is did the Biopsy determine if your Squamous Cell Carcinoma is HPV POSITVE? or NEGATIVE? Believe it or not HPV (Human Papilloma Virus) is the cause of the majority of HNC's in men and frequently in women. Also, this is the very same cancer that causes cervical cancer in women. So, don't mess around with it. Don't let them tell you that it is non-aggressive, slow-growing (which it is) but tell them to get it out immediately. The clock is running.


    Now, the great news is, as my very first Radiation Oncologist told me back in 2007, "If you have to have a cancer this is the one to have." Because SCC, especially HPV POSITVE responds well to treatment and has a significantly higher survival rate. I am one of the proud patients who can attest to that now 15+ years later. It was not fun. It was tough. I had 35 daily radiation treatments along with 7 weekly Cisplatin chemo treatments. It took me a year before I was back to what I call "the new normal". But I got there with the help of loved ones, friends and of course incredible medical professionals and amazing technologies. You will too.


    Unfortunately I am currently recuperating from a "new" cancer, also SCC, also in a tonsil..........but on the opposite side (left side in 2007, right side in 2022. This time I only had 30 radiation treatments and fortunately no chemo. But, I had to have the Radical Neck Dissection this past May which I am still having a tough time recuperating from. But, I'm getting there and looking forward to my "new normal" on the right side.

    I am currently NED (No Evidence of Disease) on either side which means my 15 year clock on the left is still running and my right side is approaching 6 months NED.

    Head up, think positive, find a medical professional team that has the experience and that you trust..........then, DO ABSOLUTELY EVERYTHING THEY TELL YOU TO. If you do that you will be fine. Survival rates are very encouraging.

    Please keep me posted on new developments as there are a lot of questions we here at the CSN can help you with. Most of which you haven't even thought of yet. But a quick, short list........

    1) Verify the Primary

    2) Verify HPV Pos or Neg

    3) If Radiation and/or chemo is indicated get to your Dentist immediately and ask them to give you a thorough checkup. Tell them of your cancer diagnosis and proposed treatments because after radiation and/or chemo dental work may be very difficult and even dangerous for a very long time due to very slow healing in the tissues in your mouth as they may be affected by the treatments.

    Like I said.............you can do this. It will not be fun or easy of course. But in the not too distant future you will be very proud of the fight you put up and the fact that you came through it as a SURVIVOR. Then, turn around and pay it forward by staying on here and helping other "NEWBIES" as they come into the fold.

    Keep me posted. Feel free to email me direct at jkinobay@yahoo.com . I will gladly help all I can. And there are amazing people here at the CSN who will gladly help you through this too.


    My thoughts and prayers for you

    Jim K

  • mcb2005
    mcb2005 Member Posts: 16 Member

    Thanks for the information. I have my biopsy report and I think it said that it was linked to HPV. Hoping this is the primary. I got lucky and have an appointment with MD Anderson on Monday February 20, 2023. Hoping that my Dr is good and they are able to help me. Hoping it’s not too invasive. I’ll let you know. Thank you.

  • jkinobay
    jkinobay Member Posts: 298 Member

    Think positive. If this is your first incidence of cancer and it sounds like you caught it very, very early, then let's hope for a diagnosis of TXN0M0 or no more than T1N0M0. Plus, believe it or not, you are young. If your health otherwise is good you should be able to fight this. Again, it won't be easy or fun but you have all the odds in your favor. MD Anderson is premiere provider, you are young, it is SCC and HPV Positive, plus you live in a time in history with incredible medical and technological advances. All, reasons to remain positive and confident. Please, keep me posted. I will be more than happy to pass along whatever advice I can from my two battles with SCC/HNC, radiation, chemo and recuperation. BTW, I'm soon to be 74. If I did it, I am confident you will be able to. Hang tough. JK

  • mcb2005
    mcb2005 Member Posts: 16 Member

    Well I’m here at MD Anderson. They found that it was not a branchial cleft cyst, it was my lymph node, this was the secondary spot. The initial spot was just like yours, my right tonsil. On the up side the PET scan was good other than my tonsil and the lymph node. Scheduled for an ultrasound and possible second biopsy of the node. Dr. shah told me that we caught it early, stage 1 and it is quite curable. They will be doing an ultrasound and possible biopsy of the node again tomorrow morning. They want to be sure. Monday they will tell me how they want to cure this. More than likely I’m looking at 6.5 weeks of radiation.

  • jkinobay
    jkinobay Member Posts: 298 Member
    edited February 2023 #18

    This may sound strange, but other than the fact that you have cancer most of what you report is actually very good news. YOU DON'T HAVE ADENOCARCINOMA (one of the rarest and most difficult to treat) YOU HAVE SQUAMOUS CELL CARCINOMA (one of the most common, least aggressive, responds well to treatment, very high 5year survival rate). PLUS, it sounds like it is HPV Positive (HPV 16?) which means it responds well to treatment. So, all in all, you have a very good prognosis in my non-medical-professional opinion. So, celebrate that as you buckle up for a bit of a bumpy ride.

    For comparison, in 2007 I had 35 daily IMRT (radiation) treatments and 7 weekly CISPLATIN (chemo) treatments. Then, in 2022 I had 30 daily IMRT and fortunately no chemo.

    My suggestions for the short term:

    1) Investigate dental care ASAP. Including preventative measures for mouth/throat care that will really help.

    2) If daily radiation treatments are indicated order some 100% Pure Virgin EMU OIL. You can find it at AMAZON ( https://www.amazon.com/dp/B01IB3PN3Q?ref=nb_sb_ss_w_as-reorder-t1_k2_1_3&amp=&crid=V2GYYDOWKMWG&amp=&sprefix=emu ) . I was tipped off to it's miraculous effects for radiation patients in 2007. IT REALLY WORKS. Start using it at least 2 weeks before treatments begin. Your Oncologist can show you the area that will be treated and start applying small amounts of EMU Oil twice a day, every day. It will help prevent the sunburn-like affect that many patients have. In my case I never had even redness much less painful sores as many report. VERY IMPORTANT: MAKE SURE YOUR SKIN IS OIL-FREE, CLEAN, AND DRY AS YOU GO IN FOR EACH TREATMENT. In other words, on treatment days only use the oil after the treatment.

    3) Prepare yourself for the making of your radiation treatment mask. There are many informative videos available. For example ( https://www.youtube.com/watch?v=IL5udOUqexg ). It will take getting used to but think of it as one of the most valuable tools in your treatment toolbox because it makes sure your treatments are applied in the exact locations specified every time. Accuracy of less than .5mm is very important so as to minimize damage to non-cancerous tissues and to focus the radiation only on the cancerous tissues. If clautraphobia is at all a problem for you, OWN IT and tell your Oncologist. They can prescribe an anti-anxiety med that will get you through it. For me it was ATIVAN (Lorazepam). I took 1 mg. one hour before each treatment and the treatments went by much faster. Most likely your time in the mask will be short, maybe 20-30 minutes or less. But, very important that you do whatever it takes to get through each and every treatment EXACTLY as prescribed. You are in a fight for your life.

    4) DIET: if CHEMOTHERAPY is indicated talk to your Oncologist about your particular health in terms of weight and general health concerns. As treatments progress you will have increasing difficulty short term for eating, swallowing, drinking, etc. In my case in 2007 I had to have a PEG (feeding tube) placed which helped me maintain hydration and nutrition levels which are very important in your treatment/healing prognosis. Depending on the extent of any surgery and/or the treatment profiles you will lose weight, GUARANTEED. SO, keep that in mind. Trust your Oncologist and follow their advice.

    This is just a start and I am here for any further tips/suggestions you may need. Please, feel free to contact me anytime. Like I said, it won't be fun, it won't be easy, but the alternative in unacceptable. YOU HAVE TO GET THIS DONE and DONE ASAP.

    Jim

  • jkinobay
    jkinobay Member Posts: 298 Member

    I failed to mention surgery. If no further surgery is indicated, GREAT. But if so, please let me know and I can offer tips/advice/suggestions. In my case(s), in 2007 I had just the minor removal of the lymph node and a tonsillectomy/adenoidectomy. But, in 2022 I had TORS (robotic) tonsillectomy and RND (Radical Neck Dissection). If either of these is indicated I can help you with further information to consider.

    Stay positive my friend.

  • wbcgaruss
    wbcgaruss Member Posts: 2,260 Member

    mcb2005, I must say you have certainly been blessed to have a guy like Jim helping you through this situation, someone who has experience with the same cancer. And Jim congrats to you for doing all you can to help a fellow cancer mate to get through this difficult situation. I have always said this forum is quite an amazing thing and a wonderful blessing for many.

    Take care, God Bless All-Russ

  • jkinobay
    jkinobay Member Posts: 298 Member

    Thank you for the kind comment. I remember back in 2007 when I was EXACTLY where MCB2005 is today. Only, I didn't know enough to not be scared, to remain positive. So, I joined the CSN and got immediate support and infinite resources from members long gone now.......soccerfreaks, Hawvet, Vinny59, Theresa, and many others. So, it is my pleasure and unfortunate honor to pay back by helping whomever I can. Like you, IT IS WHAT WE DO.

    MBC2005 is going to be OK. I'm confident of that. He is in the right place at the right time to receive the very latest in healthcare.

    Thanks again................stay well, my friend.