Adenocarcinoma in a branchial cleft cyst

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 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 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

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

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

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