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New Diagnosis

lyolan1
Posts: 95
Joined: Jul 2009

I am a 48 yr old male. After many tests it was determined that I have a Branchial Cyst with some abnormal cell growth. I will be meeting with the surgeon in Boston on Thursday to discuss treatment options. I am very scared. What is the surgery like? What is it like to be on radiation and chemotherapy? What is the prognosis long term?

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jkinobay
Posts: 245
Joined: May 2007

First off, slow down and take a deep breath. I am sorry that you have had to enter the world of cancer fighters, but now that you have you will need to put the diagnosis behind you and proceed with deliberation and resolve. It sounds to me like your diagnosis is very early and with that on your side you can beat this thing. There are many experienced survivors on this message board that will attest to that.

What you describe is a textbook example of how we all started. An abnormal growth with swelling, or throat pain, etc. I started out with a golfball sized growth that appeared in about 6 weeks under my left jawbone. I had an MRI that indicated benign cyst. But the first Pathology diagnosis in 5-07 was Adenocarcinoma in a Bronchial Cleft Cyst. A second opinion though at MD Anderson in Houston indicated that it was not a cyst but a lymph node, and it was not Adenocrcinoma (rare, aggressive) but Squamous Cell Carcinoma (very common and not aggressive). Since then I have learned that over 90% of Bronchial Cleft Cyst diagnosis' are misleading, that in fact it is more likely to be lymph nodes.

One of the main reasons it is important to distinguish between the two is that if it is a cyst it can be the primary site but may not be. If it is a lymph node it is likely not to be the primary site. Meaning, the first order of business is to determine the primary site and from that design surgery and treatment options.

In my case, the "Bronchial Cleft Cyst" surgery was a piece of cake. It took about an hour, was done as an outpatient, and I was in a motel eating a normal meal that night. I had about a 2 inch incision on my neck just below my left jawbone. The surgeon "tucked" the incision in a wrinkle so it is hardly noticeable. I had slight pain and stiffness but overall it was no big deal. After the second opinion though they said the most likely primary site was a tonsil so I had a tonsillectomy/adenoidectomy (at age 57, not fun) and sure enough the left tonsil (commonly same side as the cyst/node cancer) was in bad shape. Caught very early though and with 35 daily radiation treatments and once a week chemo I am now almost 2 years cancer free.

As for treatments, there are a lot of options. So, pick a Team that you trust which might include your ENT surgeon, a Chemo Oncologist and a Radiation Oncologist if it leads to that.

Keep us posted as you progress because there is a lot of experience here on this board. There are also many many previous posts that will address everything you are about to experience.

God Bless...................and I'll watch for an update after Thursday.

JK

lyolan1
Posts: 95
Joined: Jul 2009

Hi JK, Thanks for getting back to me. Since the diagnosis I have been reading up on the disease/illness. Your case sounds earily similar to mine. Although my lump is not as big as a golf ball, I can feel it when I shave in the morning. I had one of those scopes down my throat, nose, stomach... the Dr. said that everything looks and feels fine. I feel fine for that matter, no pain. I hope that you are right about being caught in time or better yet a missed diagnosis. I own a Landscape Contracting Business in a tough economy. We are doing O.K., holding our own. What Scares the hell out of me is that the overhead of just opening the doors is astounding, my wife makes good money as a teacher, but she cannot pay the mortgage and bills on her salary. I was glad to hear that your surgery was easy. They also want to take out my left tonsil. The Dr. was thinking that they would remove the tonsil at the same time as the cyst and biopsy the other areas in my neck. How many days do you think I will have to miss if they remove the tonsil at the same time? I have a good crew of men that can cover for me for a while, however, I am the one who sells the projects and does the layouts. I cannot hand off that part to the crew. AS a time line, I have my consult on thursday, surgery next week, then radiation. How debilitating is the radiation? I know that I sound crazy and controlling but I have (2) kids and a wife to consider. Alex.

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jkinobay
Posts: 245
Joined: May 2007

Since you apparently are younger (48) and physically active in your work I would think your recovery from the surgery will go well. Everyone is different. Depending on your general health you may bounce back very quickly. I have an office job and never had to miss any work except 2-3 days for surgeries. Physical exertion/fatigue might be an issue but you should be able to point your finger and manage your employees just fine.

What else have you had in the way of diagnostics? PET scan? MRI? I am wondering how/why they have prescribed radiation treatments before Pathology of the mass and/or tonsil. In my case the tonsil looked fine too in May and June but when a second opinion Pathologist said it was lymph nodes, not cyst and squamous cell carcinoma that tested positive for HPV 16, they knew there would very likely be a problem in the tonsil area. And, sure enough in July 07 they did a laryngoscopy and a tonsillectomy and the left tonsil was malignant. Not saying this will be your case but time is of the essence. I am glad they are taking the tonsil too because that may prove to be the critical path item that saved your life. It was for me.

When you talk to your ENT surgeon ask if he/she can have the Pathologist screen your samples for HPV. I know it sounds crazy but they have determined that more and more HNC's (Head and Neck Cancers)are linked to HPV and believe it or not, that is a good thing because they respond to treatment much better than HPV negative cancers. The 5 year survival rate for HPV positive cancers can be significantly higher depending on timing, treatment and extent.

As for the effects of radiation, I am assuming they will prescribe IMRT which is much less invasive and damaging to "good" tissues but very effective on "bad" tissues. The goal is to wipe out the cancer cells and try to preserve saliva glands as much as possible. You might ask if a complimentary once a week chemo might be in order. Most of us had that and it proved to be extra effective. Everyone is different and responds differently. Fatigue will likely be an issue but if you stay ahead of hydration/nutrition and stay active/exercise, it should be manageable.

Other thoughts:

**For the IMRT, in my case after the surgery they did a CT scan to "map" out a treatment program. This took about 2 weeks. The treatments were once a day, as near the exact same time each day as possible, for 35 days (5/week). For the treatments to be most effective, you will likely have to use a Mask. Mine was made of a pliable porous plastic that is heated and molded to your head and neck for use in each treatment. It will fit very tightly and when in place will be clipped down to the table such that each "shot" is precise and within 1/2MM of the target. I also had a mouthpiece laser lineup device which I had to bite down on for each treatment. Do whatever it takes to deal with the mask and the dental fitting. Many people don't have any problems. The treatments are usually less than 20 minutes each including set up time. But for me I became claustraphobic for the first time in my life. They cut eye holes for me which helped. But, I also took a low dose anti-anxiety med (Ativan) about 30 minutes before each treatment. I also learned to mentally go "somewhere else" during each treatment (fishing, grandkids,etc). I also counted the seconds duration of each of the 12 IMRT "shot" positions and using that constantly reminded myself that I was that much closer to the end. Again, you have to do this so do whatever it takes.

**if they want you to have a feeding tube DO IT. You may never need it but very likely could and the procedure is much harder on you if you wait until you really need it and your health has declined. You may experience difficulty swallowing for awhile or you may lose your appetite, so get the tube if they recommend it. I have a previous post for PEG Tube 101 too that I will try to find for you.

**hydration and nutrition are essential. Depending on your specific treatments, you may dehydrate much easier during treatments and for about 6 weeks after treatments. In order for your body to fight all of this and recover you have to focus on these two items.

**dental issues. I'm sure your ENT will want you to get a checkup from a qualified Dentist that has HNC experience. If you have any dental issues at all they need to be resolved before treatments. Radiation may have a significant impact on your oral health and post-treatment dental issues could arise.

**skin treatment. Ask your Radiologist to recommend a preventative skincare. There are many and different people have different experiences but most of them seem to be very helpful. For me, it was Emu Oil. I never had more than a minor sunburn effect. I used it liberally for 2 weeks before treatments and all during. BE SURE THOUGH not to use anything just before a treatment. Your skin needs to be clean and oil free during the session. Again, there are many products and your Rad. will have his preference.

**oral hygiene. Very important and can be challenging. I will look back at my previous posts and send you Oral Hygiene 101 that was put together for me by my Dentist who fortunately had 13 yr. experience treating HNC patients at the VA in Tucson. Thanks to him I never had a serious mouth problem like yeast infection, sores, bleeding, etc.

**Support/Caregiver. Check in your area for a Head and Neck Cancer support group. If there is one join it now. I assume your wife will be your primary support at home. Get her involved in every aspect. Get a notebook and take notes at every appointment. Ask questions until you understand. Put together an Oncology team that you trust then do exactly what they say. Keep copies of everything (bloodwork, Pathology reports, diagnosis', etc.)

I know this is all so overwhelming to you right now......an avalanche of worry and mystery about your future. Take each issue head on and one at a time and you will do very well. If you want to email me direct please do (jkinobay@gmail.com). And, of course stay plugged in here at the CSN.........a wealth of experience and supporting,caring folks. Those of us a bit further down the path on which you are just embarking will gladly help you make the journey.

God Bless..................keep us posted. JK

PS: The Internet is a powerful tool. GOOGLE everything (IMRT, HPV16 Positive Cancer, etc.)

jkinobay's picture
jkinobay
Posts: 245
Joined: May 2007

Should you need it, go to an old post of mine. Cut and paste in your browser

http://csn.cancer.org/node/156880

lyolan1
Posts: 95
Joined: Jul 2009

Hi JK, Thanks for getting back to me. I will bust ass to get through this. I like having a thorough understanding of my condition and options. My wife and sister are going with me to Boston Eye and Ear. We will have our notebooks in hand. One of the best things in life I have learned is that we are never alone, unless we choose to be. I have two really great kids and a wonderful wife. I will be able to withstand the treatments with their help. I have a couple of big projects that are ready to move. I need to get them started before surgery. I will keep you posted when I get back from Boston. I will get back to you Thursday pm-Friday am. Alex. I will google the sites you requested in the mean time.

lyolan1
Posts: 95
Joined: Jul 2009

Hi JK, I hope that all is well with you. I appreciate you responding to my fears and concerns. I saw the DR. yesterday. His Opinion is that it is not a Branchial Cyst but a swollen Lymph Node. I have my PET scan next Thursday. However, his belief at this time is that I have HPV Squamous Cell Carcinoma. He does not know where it is comming from at this time. I decided to go ahead with a neck disection and a biopsy of all (4) spots it could be comming from. If he finds it on my tongue, then he feels he will not remove my tonsils. If the PET scan does not reveal anything then the tonsils come out. The feeling is that it is a good thing that it is HPV SCC. Is the prognosis good for a cure? I read a little on the HPV virus last night. On my way home, I was thinking that you never get rid of a virus, they are forever? Does that mean that this could re-emerge again? How come my wife never tested positive for HPV in her PAP Smears? I know that you are not a Dr. Have you heard these questions asked before? Life certainly has a lot of ways to make you feel humble and insignificant. The treatment looks tough. Rather than have my kids hear about it from town gossip, I let them know that I am sick and I will get better after a long tratment regimen. My son took it hardest. I will keep you posted.

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jkinobay
Posts: 245
Joined: May 2007

M.D. Anderson's (reknowned Cancer Hospital in Houston) top research Pathologists looked at my slides and samples. They made the diagnosis second opinion that saved my life. They said the fact that the lymph node was HPV positive usually (more than 90% of the time) points to Waldeyer's Ring which is the tonsil portion of the palate. So, my bet is that is where the primary is. Great news is that the PET is a miracle tool and should tell them exactly what is where.

I have asked, and in some cases been asked all of the questions you raise. Please go to a previous post ( http://csn.cancer.org/node/158416 ) and read my comments and those of others.
To your questions, my Doc said HPV does not show on a PAP smear, only "irregular growth", which would then prompt further testing. You are correct in saying virus's stay with you forever. My Doc's said that many, many people have HPV and take it to their grave without ever knowing it. HPV 16 and 18 are the leading cause of Cervical Cancer in women. For a man the Cervix is the neck. What causes it? Nobody knows but they do know that HPV cancer of the throat is caused by either 1) oral sex or 2) by direct exposure in the birth canal passed from your mother, or 3) exposure in the Uterous as a fetus. Mine came from my biological Mother who had abandoned me as an infant and I later found out she was arrested for prostitution several times during the 9 mos. she carried me. Is it likely she was not practicing safe sex?

To your question of remerging, I have never found info that suggests a high probability due to it being HPV positive. Obviously other factors can cause a recurrence but I don't think HPV is high on that list. And, again, HPV positive HNC's are highly successful at being treated.

Again, I know it is difficult to imagine right now, but if the diagnosis stands of HPV Positive SCC then 5 year survival rates rise to among the highest of all cancers. The road will be rough but it is doable. The alternative unacceptable.

Keep the questions coming..............and feel free to email me ( jkinobay@gmail.com ).

JK

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jkinobay
Posts: 245
Joined: May 2007

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