Hi, I'm new. I had surgery in January to right side of my tongue to remove a tumor. I've healed by the back portion of my tongue was still swollen after 4 months then on May 14 it shrunk to normal, and a lump showed up under my chin, I called Dr office, and explained. I said I was putting cold compress and ibuprofen, it shrunk from about size of nickel to a pea, but then last week another showed up next to it, about the size of a pea. I called to get an appt. right away. They took me in that day, did 2 biopsies and a CT scan. both showed positive with the same cancer cells as my tongue. I'm scheduled for ND on Monday AM. Scared and worried about what is next. Worried about the surgery, but more so about the radiation and the effects of the radiation. Will I definitely have to have radiation?

I'm so confused on how this works and travels in the body... so if I would have had the ND to begin with, the cells from the swelling in my tongue still would have dumped somewhere.... if my lymph-nodes had been gone where would the cancer cells have gone? I thought the Lynph-nodes were supposed to trap the bad cells and keep them from traveling throughout the body...??? They said they only saw C in the lymph-nodes on the CT scan. So does that mean I will not need Rad treatments, because it is not anywhere else???or that I will???, I'm getting mixed messages from the nurse. I think he is trying to be nice and spare me until after the surgery. But I'd really like to know.

Any advice or comments would be great, it's getting close and I'm getting more nervous each day.

Welcome to OCF! Im so sorry you are scared! Not knowing the future is always a bit unnerving. You have found the very best place to get info and support.

Only your doctors will be able to determine if you will need rads or not. Most patients will have a surgery and about 6-8 weeks later if they are doing rads it will start. I wont lie, its not easy, none of this is but it is doable and you can get thru this. We will be right here to help guide you thru this maze of medical jargon.

How it works is if the cancer cells have gone into the lymph nodes they will gradually go from the first node to the next and so on. Simply put, think of it like peas in a pod with the first one being rotten, soon the next one will be too. From what I understand, the lymph nodes are like the gateway to passing things thru the bloodstream where they eventually (if untreated) will go thru out the body. A neck dissection will take several nodes past what they find cancerous to ensure they get them all. Just like surgery taking much more tissue around where the cancer is. Honestly, for most of us the surgery is the easy part.

My suggestion is to right now focus on your intake. Eat all your favorite foods and then have dessert too. Dont worry about gaining weight, just eat!!! Make memories with your family and friends before your surgery and stay super busy. By being busy you wont worry so much. Worrying wont help, I know its hard but by focusing on other more positive things it really will help you to feel more at ease.

Good luck!!!

Hi there Christine explained it well. Ideally your should be treated at a CCC - this is where the drs. Have the most experience in dealing with this kind of cancer. Most drs who are experienced with oral tongue cancer remove a sample of nodes at the same time as the oral surgery. This is because they know there is a good chance that the cancer has already seeded to the nodes of the neck. Even a superficial cancer can do this - it depends on a lot of things - your own physiology, lifestyle, habits overall health And the aggressiveness the cancer. This type of cancer tends to be aggressive. At this point with two nodes involved I would want to go through with the surgery and then if your dr. tries to pat you on the head and say - your cured, I would suggest moving to a CCC if your not already at one. Ideally they will send you for rads and chemo. I had a fairly large tumor, but only one node involved - I had the full compliment of treatment and am grateful,
Btw this is a very common story we hear here about simple surgical removal and then later nodal involvement.

Re the neck dissection - you will have shoulder and arm weakness on the operative side. You will have to have physio to regain the strength - they normally cut a major muscle in your neck. It won't be pretty but it shouldn't be too painful (they cut the nerves too so you are essentially numb) from that point on there may be swelling on your face and neck in that area. Once you have a clean bill of health for a while lymphatic massage will help to rebuild those pathways that have been damaged by removal of the nodes (the swelling is lymph fluid build up)

Hopefully with two known nodes involved he will already have a radiation and medical oncologist appointment in the works for you. And hopefully he's removing more that 28 nodes.

You should educate yourself (knowledge is power) I know it's terrifying but once you get past that then it enables you to ask questions and know If your treatment veers from the norm. At which point you can have an educated conversation with your dr about why and what.

Hugs - I know it's nerve wracking

Hi Scared:
Welcome to the family. I understand how you feel right now, so many questions, so many worries, so much to think about.

I expect you feel this way because you know very little about your cancer, what caused it, how it is treated, what will the side effects of radiation, or chemo, or both at the same time be. We all felt that way when we were standing in your shoes. Some of us worried about all of this a lot, others not so much.

In one way or another we found the forum and started asking questions, just like you are doing. We all had to be told, stop worrying so much. It is what it is, worrying about it won't make it go away any quicker or be any easier to handle. Worrying will raise your stress level and it can make you unable to sleep at night, especially if you are the type to worry when you are laying there in bed before going to sleep. That was me, for a few nights that's when I would worry. But, I also was usually very tired when I went to bed, so it became easy to say to myself, I'm tired, I'll worry about this tomorrow after I sleep tonight. And guess what, when tomorrow came, I would get up, get busy with all I needed to do that day, and never worry about it then either.

But, I suppose the biggest help this forum family provided was education about cancer, and it's treatment. They told me to not only read the forum posts made by others, but also to spend time on the OCF web pages, where a tremendous amount of information lives, much of it is stuff that will answer your questions. So, I'll tell you the same as they told me, go over there and start reading. With knowledge comes power; power over the worry that comes from lack of knowledge.

This is all so new for you right now. Spend a few hours of concentrated reading, you may be very amazed at how the worry will just go away.

take care, we will be here for you every step of the way.

Tony

Thankyou Cheryl. Thankyou Tony.

I'm trying to heal now, I have an appt with my dr for the results this Thursday.
I'm pretty sure he wants me to get radiation treatments.

Thankyou for responding and your support. Yes, I'm nervous and worried, and trying to keep it in check. It is hard.

I will read more on the sight to see if that can help me.

I've read some, but I cannot say I've read as much as I should, this came all of a sudden, I thought I was done with this after operation in January.

The news hits hard.

Take care. I will keep you posted.

Angela

Christine, thankyou as well. You responded the earliest, and I thought already responded to you, but I don't see it here. Thankyou. I appreciate the comments and the support. I'm trying to stay busy, yes, although this operation has left me in pain, I'm much more worried about the radiation treatments, the side effects of it and the results he will give me this week. holding my breath...

Sincerely,
Angela

What you want to know Thursday is the differentiation - (this tells you the aggressiveness) and how involved the nodes were. He should already have your appointments set up - start time should be within 5-6 weeks (healing time) between now and then you should meet with a dental oncologist (you may have to have teeth pulled) have a ct - have your mask made - meet with a medical oncologist, radiation oncologist, and a dietician, and have blood work done (this includes a TSH level (gives them a baseline normal for your thyroid which can poop out after radiation.
It's a lot to take in but time will fly - hugs!

I'm a a worrier, and it is hard to get to sleep at night. I don't think he explained he explained the differentiation but I will call and ask, the only good news he gave me, which I'm assuming is good, is that the cancer was contained in the lymphnodes, and that they were not capsulary isI think the term he used. He found cancer in 5 of the 14 lymphnodes he removed.He said there was no "extra nodal extentions" and that none of the nodes had burst, they were all contained. This is still confusing to me. I'm so upset I did not get the neck dissection in the first place with my tongue operation. That is what the other dr suggested. My dr is meeting with the tumer board on Tuesday to determine treatment, at first he told me radiation, now he is saying maybe cemo too.... so scared. can you tell me what it is like to get the radiaton? does it hurt during the treatment? or does just hurt after you get home? how painful is it. Does anyone know if proton radiation is better to do than the regular radiation? I know I have a lot of questions, but I have decisions to make fast, and I don't think I've been doing to well at that so far.

Please help.
Thank you,
Angela