Tonsil cancer w with lymph node involvement

Well, hello and welcome to the CSN H&N forum, as we say the place no one wants to be but they are in good company and help here.

Your doctors are right the cure rate for HPV+ is very high.

My guess is you are going to have a radical neck dissection since you have had lymph node involvement and I assume they are taking out your left tonsil also.

I know you are scared but try to work your way out of that mode and don't panic. It sounds like your doctors have a plan laid out for you and you will get through this and be cancer free because many of us on here have done it before you and are living proof it can be done and the treatment works.

At present your condition is good, well that's good, you are generally healthy and you will tolerate the treatment.

Don't weigh yourself down about the HPV it's a virus many of us have and don't know it and i understand can lay dormant, not active for long periods at a time.

They do have proven vaccines for it now and they recommend anyone get it to protect themselves. Here is a link on the vaccines

https://www.cancer.gov/about-cancer/causes-prevention/risk/infectious-agents/hpv-vaccine-fact-sheet

I know you are saying being positive is hard for you right now but I tell you positive is the only way to be. Make up your mind that you are going through this treatment and completing it and beating this and going on to live life without this trouble from now on. I had a nurse navigator for my first cancer and she sat me down and explained what was going to happen with my treatment and she gave me confidence like I am trying to do for you here. She said we are going to treat this cancer with radiation and chemotherapy and we are going in and we are getting that cancer out of there. A positive fighting strong mindset is as important as anything in this treatment.

I will tell you straightforwardly that this treatment is tough and it is hard on you so you just have to tough some of this to get through. The chemo can make you sick although there are a lot of good antinausea drugs they give you along with it nowadays. Between the chemo and rads, it will make you tired for sure but you will be ok. I don't know what you weigh but if you are not overweight now is the time to eat what you like in high calories and big quantities and put on some weight, you will need it down the road because you will not want to eat because of lack of taste or difficulty swallowing because of soreness and you will have to possibly eat even though you won't feel like it for a while and also fighting cancer requires a lot of calories. Have your doctors mentioned getting a feeding tube put in before you start treatment? My recommendation is if your doctors think you should have one get it. I am pro tube because it makes it so much easier if you have major issues and have trouble eating and taking meds for a while and it is only temporary till you get through this so keep that in mind. You may have pain but your doctors should give you adequate meds for when you do and if you have pain treat it regularly on a schedule and stay ahead of it, don't wait till you are in really bad pain and then take it to stay ahead of it so you make this journey as pain-free as possible.

Any meetings you go to take a notebook to write stuff down, you can't begin to remember all the details you will be exposed to that you want to remember. Always take a second person with you and luckily you are blessed to have a good wife to help you as 2 sets of ears are better than one. You may even want to video or sound record your doctor's meeting so you can play it back if you are not sure of something later on.

I am going to stop there, for now, please keep us updated on operations and treatments as you get into them and we can help you with suggestions to make this whole thing easier for you. Remember recovery from the treatment of this H&N cancer is the hard part especially. The treatment is pretty easy to start out with but it adds up and wears you down pretty good. Then when treatment is done it is a slow process of recovery as your body mends itself so think in terms of weeks and months not days and weeks. Although you will feel bad for a while you will hit a turning point and start feeling better again and it will just keep getting better from there on out.

All I have told you here is not to scare you but prepare you to be ready to face this challenge head-on and come out the other side a winner, cancer free. And I was wondering could you share a first name to connect to you?

So-Wishing You the Best

NEGU (Never Ever Give Up)

Take Care God Bless-Russ

Przemyslaw thanks for the updated info and a name. From reading your response I get the feeling that your doctor and medical team are very knowledgeable on this sort of thing and have already made you aware of many treatment factors as well as side effects. I too had the same treatment for my first cancer, throat cancer, and went the same route chemo and rads with no surgery. I was wondering are you getting treatment at a cancer center, a local hospital, or some other way. Also if you will be driving to treatments at some point you may not feel up to it so you may have to get some friends or family members to help you finish up. Thanks for keeping us updated.

Wishing You the Best

Take care, God Bless-Russ

Przemyslaw I can verify your doctor saying you are in a war, till you get your last treatment in and recover from the treatments to the point of starting to feel good again it will feel like a war you were in. You will feel that bad, although we have had people on here that tolerated the treatments well and were not hit as hard as others, hopefully, you will be one of them. But just prepare yourself for the worst and if it doesn't come to you, great!

During my first cancer of the throat, the tumor was very large and they wanted to shrink it down before starting my treatment regimen of 35 radiation treatments with chemo beginning, middle, and at the end. So for a week at a time, I went into the hospital and had 5 days of 24-hour chemo treatment. Then a break for my blood count to come back up and another week of the same. It did shrink the tumor and they started the regular plan.

These plans for many H&N cancers are pretty standard it seems with 6 or 7 weeks of radiation and varying doses of chemo.

So in all as far as chemo I had Cisplatin, Taxotere, and Fluorouracil (5FU), and at least 2 of them are known to cause hair loss Taxotere, and Fluorouracil (5FU). I can tell you when it was all said and done there was not a hair left on my body anywhere. The funny part is my pubic hair went first. And post treatment it was many months till I needed to shave again, just didn't grow at all.

I know you will do well I believe you have a good medical team and a great attitude which means a lot.

Take care, God Bless-Russ

Hi! I had tonsil cancer in my left tonsil and lymph node just like you. Also like you, I didn't feel different (for the most part) except for a lump in my neck, which turned out to be the lymph node. I say "for the most part" because I did actually have migraines every couple of days for a few weeks before the lymph node became apparent. For me, migraines often come before illness but not as frequently as they were occurring at that time. The only time they have ever occurred at that frequency was when I was pregnant, so I was confused.

I was 45 years old when diagnosed and went through about 5 months of total treatments. Afterwards I had a clear PET scan and have been cancer-free for almost 4 years now and plan on staying that way! So, take heart and do your best to keep a positive attitude. It is one of the highest rates of successfully treated cancers, which is something to hold onto!

For treatment, I had a neck dissection (surgery, but it sounds like you aren't having that) and both tonsils removed. Then I had chemo and radiation. Everyone's exact treatment plan is a little different because everyone's exact situation is a little different. They look at each case and decide what is best for that individual. It sounds like your doctors are likewise tailoring your treatment to be the best fit for you and your situation.

Regarding side effects, for me it was the side effects of the radiation that caused more difficulties, especially long term. The chemo wasn't fun either, but the combo was particularly challenging. I won't lie, it isn't pleasant but we all get through it and you will too!

For me, the way I stayed positive was by realizing: 1. This is temporary and it will make me better; and, 2. This isn't the worst thing I've ever lived through. I know that sounds crazy, but I lived through many years of childhood abuse and having to go through what I went through as a child was worse than enduring the side-effects of treatments, no matter how difficult. Both experiences (the abuse and the cancer treatments) broke me down physically but the abuse also broke me down psychologically and was designed to harm me. The treatments were designed to harm the cancer, not me. They helped to heal my body of the sickness that invaded it. This made it worth the temporary physical suffering. It is mental suffering that is hardest to heal from. I seriously hope you were not abused and so that part of what I say does not relate to you. I say it here anyway because it is good to keep in mind that this is temporary and even if tough, will help you get better in the long run.

For specific advice, I offer the following:

1. Keep reminding yourself that treatments and the side effects are temporary and only physical. It will be over soon and you will be cancer free!
2. When food starts tasting bad, I highly recommend drinking smoothies with lots of healthy, high calorie ingredients. Consult a nutritionist if you need to. Get a good blender - a Vitamix if you can afford it. It is the best money I ever spent and still use it daily to make fruit and vegetable smoothies.
3. If you end up needing a stomach tube, don't let it make you feel bad. Some need one, some don't. No need to fight it if you need it though. It is SO much easier if you need it. I resisted because I didn't want another surgery, but I couldn't even drink water at one point because my mouth hurt so bad. Once I had the stomach tube put in, it was such a huge relief to be able to bypass my mouth! lol!
4. Stay positive and keep reaching out on this forum. There are such good folks here. I was on frequently when I was going through everything and it was helpful to hear other's experiences.
5. Be careful not to read posts that are negative or that don't relate directly to your experience. I was very frightened by one individual's experience and it made me more fearful than I already was. Stick to what it is relevant (people going through similar things at similar times or people who have been through this and are offering positive encouragement).
6. I just want to say again, don't be afraid, you will get through this and be cancer-free!

:)

I love to hear that people have great lives! That is how the world SHOULD be!!! I have every confidence that you will get that life back after this is over! I'm rooting for you!

Don't eat yucky things now. Plenty of time for that when it comes. You won't need stamina to endure it because you will have no choice. The stomach tube was only necessary for me because I developed mouth sores that made it literally impossible to put anything in my mouth, even water. But most people don't get those sores that bad, and you probably won't either. Definitely don't worry about it now. You probably won't need it anyway.

Spend these next few days eating all your favorite foods in massive quantities! This is a great time to eat as much as you want without worrying about gaining too much weight!

All the best! 😊