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Squamous Cell Carcinoma of the tonsil

ddilley
Posts: 1
Joined: Mar 2003

I am a 61-year old male newly diagnosed with cancer of the tonsil. It is in situ and my doctor recommends surgery followed by radiation. The radiologist recommends chemo/radiation followed by neck resection. I am not sure which route to take.
The surgery will involve splitting my lower jaw, removing the tumor, rebuilding my throat with skin from the forearm and putting my jaw back together. I will have a Trach and feeding tube during my 10-14 days in the hospital (and possibly longer). This will be followed up by 7 weeks of daily radiation. Have any of you had this radical surgery followed by radiation?
The other treatment will be a combination of chemo and radiation followed by the neck resection.
Whichever procedure I decide to have done will take place at UC Davis Medical Center in Sacramento.
Thank you for any insight you can give regarding these procedures.

mah
Posts: 29
Joined: Mar 2003

My husband had squamous cell cancer in the tonsil. He had very radical surgery. His had spread to his jaw bone, the tongue, the soft pallet and the lymphnpdes in his neck. They removed the tumor and did a neck resection with muscle from his chest to rebuild his throat. They put a chain in to replace the jaw bone. He had the trach in for 5 months and could not eat by mouth. It is a very serious operation. He recovered very well considering. He did 6 weeks of radiation afterward. He refused to chemo. He was ok for about 2 years and the cancer returned in his lungs. He is now battling for his life. He now wishes he had taken the chemo also on the chance that it might have killed whatever cancer cells were left that could not be seen. At the time his lungs were clear of any cancer. His surgery was done at James Cancer Hospital in Columbus, OH. It is a very radical surgery, but with proper follow up it is well worth it if it saves your life. MA

maxcat40
Posts: 7
Joined: Sep 2002

Hi, I can't help with your decision, but I did want to let you know that I had proton beam radiation treatment at UC Davis in October and they were excellent. I know this isn't much, I guess I just wanted you to feel more at ease on where your getting treatment. Everyone was very kind and professional.

davecr's picture
davecr
Posts: 9
Joined: Nov 2002

I had SCC with the primary in my left tonsil which had spread to the lymph nodes in my neck. I was lucky in that the primary cancer was contained in the tonsil so a tonsilectomy was my first surgery. I opted for the combined chemo and radiation because the tumor in my neck was large and fast-growing. I had a neck dissection after the radiation where they removed many lymph nodes and the big muscle (sternocleidomastoid) on one side. The whole treatment took about 6 months and was very difficult. I lost about 45 pounds, went bald, and could eat only liquids because of the awful sores in my mouth. OK -- I know all that sounds scary but it was 2 years ago and I'm fine, now. I've gained back nost of the weight (I don't really need the last few pounds), my hair grew back and I'm coping well with the few remaining problems like low saliva production. Every cancer is different so no one can tell you exactly what to expect but the available treatments can work. The important thing is to get all the information you can, including second and third opinions, and get on with the treatment. Get emotional support from wherever you can find it -- I would not have made it through without my family.

Stay strong and good luck!

David
david@crispinfo.com

rjb999
Posts: 1
Joined: Dec 2003

David, your case sounds very similar to my recent diagnosis. It is encouraging to know that it is a battle that can be won. I go tomorrow for a PET scan to see if the cancer is anywhere else besides the tonsil remnant. How long ago did you say that you were first diagnosed and had surgery? I am so worried that I will be a burden to my family during my recovery period.

JRVK
Posts: 1
Joined: Feb 2004

I also had Squamous Cell Carcinoma of the tonsil. Was diagnosed in March, 2003. Had a PET scan and it was found that the cancer had not spread anywhere else but the edge of my tongue. I had seven weeks of radiation and 3 chemo treatments. They got all the cancer. I was on a feeding tube for about 3 months and then slowly started eating regular food and now I am eating a variety of food with no problem. My saliva is coming back slowly but a lack of it does hinder me from eating some things. My oncologist says I am doing very well at 6 months into recovery. I lost my self confidence and self esteem for a while but they are coming back. My oncologist says that is very common for cancer patients because they feel out of control. I prayed a lot and had a lot of prayers said for me and I do believe the prayers were heard. Believe in the power of prayer and believe in God to help you through this.

mpc6658
Posts: 1
Joined: May 2003

My message may find you after you have already elected y9ur course fo treatment. Similar to 'dave cr's comments, I too was dianosed with tonsil cancer which spread to the adjecent lymph node and muslce structure (stage3). I'm a 43 year old white male and a diagnoses that doe not fit my life style. I'll leave it at that - I have cancer, which is what I must know face. My diagnosis began with finding of an enlagered lymph node on the right side of my neck just beneath my jaw bone. With out this enlarged lymph noe, I had no outward (or inward) signs of having cancer, just caught up in work/familiy and the craziness of life. This discovery occurred in Nov. '02 and it has been a whrilwind of activities since. So I can fully understand where you are at right now.

The first decision, an operation is the most difficult, but may also be the most significant in saving your life. In January I had my right tonsil removed for biopsy, followed 2-weeks to the date by a radical neck dissection to remove the lymph nodes and muscle structure on the right side. Both operations wented very smoothly and the recover time was exactly as the doctors stated. In your case, a radical jaw, I have heard quite positive results. Reconstruction surgery will be more difficult to heal, but the benefits are that the cancer they have found will be removed, bettering you survival rate. Combine this along with both Musclur and Speech pysical therapy should also be considered. I too am on a feeding tube, a pain, but you'll learn to need them once you can no longer swallow...more on this later. I would recommend you have the standard tests; Blood tests, CT-scan, X-rays and PET test. In my case the PET test showed additional areas of cancer growth not visibe on the either tests. This should be part of your diagnosise/treatment planning phase. Since my cancer was beyond the original site, I was also given the option of both chemo/radiation treatments. I agreed with the treatment plan, Chemo 1x per week, and 32 Radiation treatments. During Chemo I was administered Cisplatin, along with anti-nausea drugs, steriods, etc. My radition consisted on multiple passes which took upwards of 45 minutes + to complete. I am now in my 7th week of treatent, just completed my Chemo and have 2 more Radiation visits. Almost done with this phase. Ohhh... I call them phases, the first is having cancer - dealing with it emotionally and mentally. Followed by diagnosis/treatment planning - complete confusion unless your willing to do some reading and read some web-sites. Phase three is treament, in my case, following the first week, 90% of food intake by mouth stops and you resort to tube feedings. I'll have to let you know where the later Phases goes.

Issues -
Chemo/Radiation - skin burning, sore throat, reduced fod intake, sleeping disorders, 'constant pain' in the throart area.

All of these can be releived if you tell the doctor!!! I used to take on vitamin each day - pre cancer, now I have the most medication in my family of five.

Surgery -
Appearence - get over it....you are alive!!!!
Physical mobility - loss of body/muscle movement - get into a physical therapy course following surgery healing time to identify what needs work - your surgeon should have a good feeling for what was removed/damaged. Then return after cancer treatment- I could not manage both during treatment.

Limitation -
Understand that you will have limitations, accept them, compensate as needed for them. But never let them get beat you!

Lifestyle -

As treatment progresses you will be 'very fatigued'. It is hard to explain, but, there will be days when you can't even get out of bed or the rocking chair. Let your body be the judge!
In my case, the day after Chemo I feel great (thaks to the drugs they give you), but the 2nd and 3rd day after treatment - I can barely move.

Okay ....enough for know...hope this little bit helped!

ahartt
Posts: 3
Joined: May 2003

ddilley,
Check out proton therapy prior to surgery. If your cancer is relatively contained you could be a good candidate. Proton therapy radiation is less destructive. Here's the Loma Linda site: http://www.llu.edu/proton/index.html

A friend of mine is a physicist at Los Alamos labs in NM and he introduced me to this option. Proton therapy is not widely available/known because each center costs about $100M to build. Loma Linda was the first. Mass General just opened theirs about 1-2 years ago and MD Anderson broke ground this month (to be operational in late 2004). It's worth a call. The nurses at LLU are very helpful...they will ask you to send copies of all transcribed reports (xrays, scans, biopsies, etc) and a doctor will evalaute your case. Its fast and free. My friend would be mroe than happy to speak with you if you would like to know more.
Amy

GeneRice
Posts: 1
Joined: Sep 2003

My DR. From M.D. Anderson said there wouldn't be any thing to remove after radiation and Cemo. and I am a stage 3-4 SCC on the Left Tonsil involving the 1st lymph node. Have you any ideas how you got this cancer?
Looking to the future,
Gene Rice
Grice3333@aol.com

robh
Posts: 8
Joined: Oct 2003

Gene,

I am a 41yo male with that was just diagnosed with the SCC. Lump on my neck and swollen tonsil. Doctor did surgury 09/02 to remove lump and found that my tonsil was the primary cancer site. I have stage pT1pN2B Pm0. Wich is stage IVA. I am going for the neck resection Wed 09/08. I was told by the path report that the cancer did not leave the inked margins on the tonsil so it looks like they got it all. I will be consulting with University of Chicago, Northwestern, Highland Park (Kellog), and Evanston hospital to determain the best course of action for Chemo,Rad. I have a wonderful Surgen/ENT from Highland Park. I would strongly recomend him. For the other treatments I will consult others for piece of mind however. I have 4 children under the age of ten and another on the way. Death is not an option for me!!!!!!!

I know this will be a long road but I am ready. My doc says I have better then average odds.You must keep a positive outlook and firmly beleive that this is nothing more then a setback. I hope everything works out for you.
If any other survivors could give me advise I would greatly appreciate it.

Thanks,
Robert Hamilton

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