Tonsil cancer

OK...I have stage 4 melanoma...lost my mom to cervical cancer, my son to desmoplastic small round cell sarcoma and now my brother called and said his ENT doc found cancer in his tonsil and so he is going to start 6-8 weeks of radiation...anybody know what he is going to experience getting so much radiation to his tonsil area?? Anyone even had tonsil cancer? It's pretty rare I read...any recent stats on it? My brother had a CT of the neck area and nothing showed up...not even the place on his tonsil....go figure...

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Hello, My husband was just diagnosed with Tonsil cancer& lymph node involvement.. It has been such a long drawn out ordeal and gets very stressful... You will have to go read my post.. they are too long to re-type.. They do say this is rare however treatable and cureable if caught early. ALso depending if the tumor is HPV positive also has a better outcome.. You will learn alot just reading and will learn alot from your personal experience. All cancer is different. I have been taking it day by day. I am sorry for your Loss and what you are going through.. Its not a walk in the park but can be BEAT. We have not been through the radiation yet, just tonsillectomy and neck dissection, waiting on path to start radiation. His cancer is HPV positive as well.. Much love & prayers to you and your brother

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Everyone is different with the type, stage, grade, location, size of tumor, medical condition, age, doctor, and even hospitals. Treatment options are different depending in stage, grade. I think I said that lol, but they are surgery, radiation, and chemo for the 123 knockout punch. There re more variations to it, combinationd, but Chemo is rarely done alone, usually with radiation, and does not cure tonil cancer, but makes radiation work better. Only surgery and radiation is curative.

CT scans, PET scans, MRI and FNAB are not 100 petecent accurate. The loosest is a irect biopsy. I recently had a lymph node tumor pots don FNAB, MRI didn't pick it up, but PET scan I'd, Each have gir uses,and used together for a linical diagnosis.

There are lots of statistics. Some are old, and few are based on HPV, which changed things as fr as statistics, somewhat, but not in treatment choices yet.

If you know the stage, and grade you can find out more. If you have any more questions ask. There is much more, but one thing I can say, not to scare you, but you only have one shot at this really, so give it everything you have.

I had stage 4 SCC of the tonsil as primary, base of tongue, valleculla, and three bilateral lymph nodes. Then a few more local mestastes, and neck muscle. I'm on my 3rd recurrence, and having surgery on Friday for a renegade lymph node.

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Thanks! I have stage 4 melanoma and my stats weren't great...lol in 2009 I was given 6-9 months and now its 3 years later and I am NED...but I had to work for it-in a trial...having my brother dx'ed just scared me to death. Don't know the type of cancer yet or the stage, however my brother said the CT was clear when they did the head and neck. I don't know if they will do PET's or MRI's...I got a bone scans, MRI's, PET's CT's, ultrasounds x rays...I should be glowing in the dark..he went to a yokel local ENT and I want him to go to Cleveland Clinic in Ohio. I just know you don't want some hick doc calling the shots, 'specially if he is in an early stage and it can be treated in such a way as it may not return...

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Congratulation to you for your NED. I'm in NYC, but Cleveland Clinic is one of the best hospitals in the country in many fields. Actually number 9 in cancer, and number 8 in ENT. Tonsil cancet is not something to mess around with, it's treatable, but the neck is complicated, and involves many vital structures. Chemo you can get anywhere, and most follow gold standard treatments, but an ENT in a teaching hospital, with H&N cancer surgery experience is better. Statistics also show that patients treated in a larger teaching hospital have a better outcome. Not saying there are not good rural doctors, and may be more cautious, , have more time, but the arger institutions have the support system, and set the standards. They should do a PET to see if there are any distant metasteses. Ok, mayb he needs convining to show this is not a sore thoat, and is serious...there is a 70-80 percent chance of a 5 year survival overall in esrly stage 1 and 2. If there is a local metasteses half that, so it's 35-40 perect. If there is another node on opposite side half that, so it's less than 20 perecnt. HPV seems promising, , and changes the stats maybe 20 percent, but studies are not fully known, and treatment is the same for now. Stats are stats, and just made to b broken. It does not say the age, medical conditions involved, contributing factord etc, so the chances are very good for a full recovery.

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Sorry for the typos. These are just general stats, some maybe better, some worse, but it's an attention getter for sure, it did get mine. Each person is different, and responds different. No doctor ever told me what my chances were, and i never asked them, not wanting to hear it officially maybe or be told they can't say for sure, but Dr google got the best of me, and searched them out. I'm the type that's wants to know the good, the bad and the ugly so I know my enemy, and can proceed from there It is actually a battle, and hope to win the war.

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My younger sister is a four and ahalf year survivor of cancer on the tonsil.

She has said that she might not be with us but for getting a second opinion
at Mass General Hospital and deciding to have treatment their instead of at
the local hospital South of Boston.

Her cancer was caught very early. She was told to follow the protocal to the
letter and they would cure her. She had no surgery. They put a feeding tube
into her right in the very begining.

I believe that she had chemo and 35 radiation treatments. It took a very heavy
toll on her. She has said that she was unable to get food or drink into her in
any way at all during the treatment period. She landed in hospital for eleven
days, now remembering onlythree days.

The most important thing is that she is now a four and a half year survivor of
cancer on the tonsil. She says that a second or third opinion is vital to survival.
Following the protocal to the letter, regardless of how one feels or thinks, is
also vital. And lastly, maintaining a totally positive attitude can help create a
positive outcome.

As a way of "paying it forward" she produced a small, short but helpful
brochure titled "Patient to Patient, Survivor to Survivor, Thoughts on cancer
survivorship: Diagnosis, Treatment & Recovery". You can see it, and enlarge
it if necessary, at the "Cancer" Page on my business website at
http://www.BestDryCleanersFL.com/Cancer.aspx. Feel free to copy the
brochure if you like.

Much good luck on your and your brothers journey as a survivor.

Gene

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Sending thoughts and prayers.

Ronda

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"Pretty rare" no not any more sorry to say. My husband had tonsil cancer, metastasized to brain, all over facial area, jaw, and neck....down to lungs and later kidney and spine. The diagnosing docs treated him very badly early on, as did his oncologist so he avoided treatment for a while, which is why it got so bad. He is doing well now, 3+ years later but still has mets in right lung. Everything else is gone, but the tonsil was the focal center for radiation, that area now suffering from radiation necrosis so he is about a week into hyperbaric oxygen treatments. This is hoped to stop and heal the necrosis, but also create pathways for his infusion of Erbitux to reach the lung tissue better.

Peace.

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I was diagnosed with stage 4 tonsil cancer - hpv positive. I had the neck disection (including removing about 17 lymph nodes) and stomach tube incerted at the same time. 7 weeks of radiation (5 days a week) and 5 rounds of chemo (once a week with the radiation). I got very very sick (17 days in the hospital), lost 38 pounds, and worked very very hard at learning to swallow again. The stomach tube was removed in April 2011. That said, it was a long hard road, I had a great outlook and support the whole time, now, physically I feel great. I was diagnosed in September 2010 and completed treatment in December 2010. The recovery from the treatment is intense but a full recovery is possible. I recommend keeping a personal journal with treatments, feelings, side effects, pain levels, everything he is going through. It helped me answer doctors questions and keep things in perspective, it also helped me see the progress I was making on a 'bad' recovery day. The treatment you just do, the recovery from the treatment is the hardest and biggest fight of your life.

I guess my point is that not everyone has a drastically altered life after tonsil cancer. Be stong and work hard!

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My borther agreed to second opinion and has app't today at 4:30 at Cleveland Clinic. They are in the top 10 so I can rest a wee bit now!!

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Good to hear. That is a good hospital, and 2nd opinions are good, too. I will be curious what they come up with. Good luck.

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I am anxiously waiting...I am expecting that they will schedule him more scans and a biopsy. He said he really didn't know the ENT he went thru, so I think he might just stay with Cleveland Clinic...

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They took a lymph fluid sample to see if they can get some cells. Told him if they couldn't they would take a small sample of tissue. They told him they wouldn't remove any more than neccessary . He is going to continue to be treated at Cleveland Clinic. Yay!! He says he likes them. They talked about PET scans etc and he will hopefully get some results on Tuesday.

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Glad to hear they at moving on this. Good luck to you and your brother!

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Hi, LynnLuc, I am so sorry for your losses, but congrats on the NED. You've been through so much, and it's amazing that you are doing so well. Best wishes!!!!

I am here because of my DH's throat cancer. He had radiation for 7 weeks, originally combined with chemo but he couldn't handle the side effects of the two treatments together, so the chemo was stopped. It was added originally to give the radiation a boost, but the "boost" increased the side effects as well, so, ergo no chemo.

I am a little concerned because his original dx included one lymph node, and the chemo would have been able to deal with that (metastasis?) better than radiation alone. But his most recent can is clear, so we are grateful.

He still has issues with saliva (not enough, if any) and regaining weight, but his energy level has improved a ton. He should be eating even more, now that the activity level has increased, but it's not happening right now due to lack of saliva and lack of taste & appetite. I remind him to drink an extra Boost or Ensure - however, I only mention it once then stay out of it. I'm not going to assume the micromanager role.

Anyway, glad you are moving on things. If you can travel, the Mass Eye & Ear Infirmary in Boston is tops for head and neck surgeries.

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