Got told today that I almost certainly have cancer
Hello group,
This is just a random chain of thought because I can't sleep.
I'm in my early 30s and I've been feeling sick the past couple of months and on Friday night, I realized that I couldn't eat solid food and that I have this large bleeding tumor thing under my tongue. On Saturday I went to the hospital and they took a tissue sample and told me to order a CT on Monday, gave me pain meds and antibiotics and sent me home, that I should come back in two weeks. On the referal slip for the CT they wrote 'suspected malignent tumor'. I went home, but on Monday I was a but shocked that I'm at home waiting two weeks and can't even eat.
So today I went to another ear nose mouth doctor and she told me she's 99% sure that I have cancer. I asked her if she could somehow clean the tumor and do something so I could eat and she said there's nothing she can do and she sent me to another hospital where I met with a professor who looked at me with a student of his, they took more samples and he said that he can't tell me I have cancer without the results but that he thinks I have cancer. We talked a bit and I told him that my aunt died of nonhodgkins lymphoma in her thirties, and he said I probably have the same thing but without the biopsy results he can't be sure. He said that I could gave some weird infection but he's pretty sure its cancer. He gave me some pain meds and ordered a PET scan and again sent me home.
Now I'm lying in bed waiting for the CT tomorrow and can't sleep. I already told my boss that I won't work much next two weeks, I don't feel like I can work very well when I can't eat, but I don't know what happens after the biopsy result, it's not like I'll get diagnosed and suddenly be able to eat again...
I'm not sure who I can talk to about this. I'm don't have a great relationship with my parents, ironically partly because my dad was an alchoholic for about 20 years after his sister died of the apparently same type of cancer I might have. I don't really want my grandparents to know either, my grandmother once told me that barying her own daughter was worse than death, I don't think she'd like hearing her grandson might have the same thing. I did talk to my sister and a close friend though. I also don't know what to say to my boss, I'm currently interim C suit without a long term contract and the board of directors already told me that they won't give me the deal I want without a long term commitment. I'm pretty sure they might question my long term prospects if I have cancer. Well I can at least wait for the biopsy results before telling anyone at work...
An hour ago I managed to eat some solid food by chewing on the side away from the tumor, but it is painfull and everything tastes grose, somehow the blood comming from the tumor tastes extremely foul. I've been drinking these vanilla flavored meal replacers but vanilla and foul blood isn't a great combo. I made myself a blueberry smoothy but I had to be firm with myself to finish it. I'm super hungry for some buger or fried food, but actually eating solid food is super tough. I also found that the toungue is really important for oral hygene and not being able to move ir without pain and blood oozing means my teeth feel really dirty.
It's all very weird, I rode my bike to the doctor today, I can keep up with trafic, but she says I could die soon if I don't get treatment. I feel tired and sick, but am still physically strong. I haven't lost weight. I don't know. At first I feared death, now I just fear postoperative pain if the cut half my toungue out. And I realky want a f--ing burger!
Comments
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Hello, liquiddiet, and welcome to the CSN H&N discussion forum.
We were all where you were in one way or another, something came up that was unusual, an errant lump, a sore neck, a sore on our tongue, I had that. We were all where you were too in a waiting period for a biopsy result that keeps us worried and hangin on the edge of our seats.
I know you are in a tough spot and it brings back memories for me. But what I came up with in my mind was, what is there is there and when the biopsy results come back we will deal with it or deal with maybe nothing. But in the meantime, I can't change it, I can't do a darn thing about it so I am just going to carry on with regular life the best I can. Of course, you can't get it all out of your head but don't let your mind wander and cancer thoughts take over your life. I know what I am telling you to do is not easy.
Also what I have found out from being on this forum and reading others and watching some videos and having cancer 3 times myself is..."It's Not Cancer Till They Say It's Cancer".
Because I have seen several cases on here where people were sure they had cancer and had all the symptoms, and from the explanation you would surely think Yes they must have cancer, only to get the biopsy and find it was not cancer after all. All the worry and frustration was not needed, but I know we can't get rid of it all.
Forget about other family members dying of cancer, it has no bearing on your situation no matter what they had. Right now concentrate on winning, no matter what this is say or YELL if you like, I am going to fight it and win, from a simple ulcer to possible cancer I am not going to let this get me down, no matter what this is I will prevail. Just to let you know there have been many advances in cancer treatment over the years especially in H&N, and that does not mean I agree that you have cancer that is just an informational thing.
Did I tell you on this forum Our Motto On Here is NEGU (Never Ever Give Up)
Your doctors are doing all the right things to treat you, getting the scans and biopsies as they should. Usually, once they have a suspicion they have you get a CT with contrast, then if it shows cancer or a strong possibility of cancer they order a biopsy and that is what tells the story. This bleeding lesion may or may not be cancer but the biopsy will tell the story then you can go from there.
Your last paragraph I looked at said "She says I could die soon if I don't get treatment". Of course, she is worried about you having trouble eating, you need to get this resolved no matter what it is you can't go on long term like this. No matter what it is you need to get this resolved and of course, you know that so forward you go and go with confidence you can get through this no matter what and you will no matter what it is. I and others are here to offer support and you can talk here or private message if you want. Also in the meantime, you may want to consider buying Boost VHC (Very High Calorie) to help maintain your weight.
So in the meantime keep your mind off it the best you can, and keep busy doing anything you can, maybe things around the house you have been putting off now may be a good time to do them.
Personally, I trusted in God and do every day and prayed a lot in these situations and you can't go wrong with God as your advocate.
I would also recommend you check out the Superthread at the top of the page there is loads of information in there with links and you will find it helpful.
Wishing You The Best
Take Care, God Bless
Russ
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Hi Russ,
I read a little bit of your story and it looks like you've survived a lot. I hope that you'll be OK.
Today I had the CT scan with the iodine and next Tuesday I get the PET CT and an MRI, so many tests! Next wednessday I get to visit the professor again and he will give me a diagnosis and a treatment plan. Things are both strangely fast and strangely slow.
I'm learning to chew and swallow on my left side. It's painfull but it's better than nothing. The bitter taste seems to be gone, which I guess means the antibiotics are helping. The professor told me though that just because the tumor is infected doesn't mean it aint cancer. He called me today just to ask if I was OK, which was nice.
Now I'm mostly worried about work. This is the second day of work I've missed and I haven't even started treatment yet! I don't know what to tell them.
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Hello, liquiddiet, do you have a first name I could use?
Thanks for checking out my history and yes I have had my share of it and considering what I went through I came through well and am doing amazingly well, thanks for your concern. I attribute coming through well to the amazing Blessings of God he has given me and Give Him all the Glory for where I am today. I tell people, but for the Grace of God, I would not be here before you.
OK, it looks like by next Tuesday you will have all your tests in and by Wednesday you will get your diagnosis and treatment plan. Very Good.
You say "Things are both strangely fast and strangely slow", I know what you mean, it is an odd phenomenon we have sometimes in our lives.
I am glad you can chew and swallow on the one side and get enough food in to sustain yourself, you gotta eat.
I guess the antibiotics could take away the bitter taste working on your affected area. The antibiotics work against something like this but once you are through the antibiotics run it may return. That is what they usually do to help. Also before your family doctor would send you to an ENT like in my first cancer, throat cancer, I had a sore throat and the family doctor gave me a round of antibiotics and after taking them my sore throat was gone but returned and I was given a different round of antibiotics and the same thing happened my sore throat returned so my family doctor said time for you to see an ENT.
That is great that they called you, a nice feeling that they are concerned for you and taking your case very seriously.
As far as work, just be honest with your employer, let them know what is going on. If you are going back to work now for a bit you don't have to tell them much or anything if you don't want but once you get your diagnosis and treatment plan I would take some time to sit down with the boss and update him/her on your situation and the fact that you may need some help and extra considerations till you get through this. I know from reading on here many people have very understanding employers who are willing to help their employees over difficult illnesses like cancer in any way they can.
Check out this guy, he always inspires me with his cancer story and is brutally honest about what he went through and he has work friends and other friends and he said I tried to push them away but they wouldn't go away...
Let us know your diagnosis when you get it, please.
Also just wondering where you are getting treatment, are you at a major hospital?
Do you have an ENT assigned to you, usually an ENT is your frontline guy guiding your treatment and whom you go to for post-follow-up monitoring. I see mine every 6 months.
Do you have any trouble swallowing?
When you see your doctor next ask if they are going to assign a speech therapist to help in your case and monitor you, they are all things head and neck such as breathing, swallowing, etc.
I am still holding out hope that you in fact do not have cancer and until a biopsy confirms you have cancer there could be many other things this could be. Remember "It's Not Cancer Till They Say It's Cancer"
Wishing You The Best
Take Care, God Bless
Russ
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Hi Russ,
my name is Tim. The professor I'm refering to is an ENT doctor. I'm extremely fortunate to have him, some people don't like having the professors because they have students, but he was exremely carefull in looking me over and him showing the tumor to his student only means he and his student (who is also a doctor actualy) got a really good look. I'm at a big hospital and probably the best for this type of thing in the city because they have PET and other things on site. They also had two nurses in the halway just running back and forth schedulibg things and such and they were all kind to me. I feel pretty confident about that side of things. Unfortunately right now I cannot work much, I feel just really tired and angry from not eating the way I'm used to. I'm going to a psychotherapist tomorrow and will ask her about the anger.
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Very well Tim, good to know you.
Hopefully, the psychotherapist can help you sort things out and you can develop a strong fighting attitude to challenge and conquer anything you are about to face.
Stay strong, trust in God!
Wishing You The Best
Take Care, God Bless
Russ
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I can eat now, it is painfull but I can eat! I was frightened by this uncertain diagnosis, but now I have accepted that death is an inevitable possibility. I started eating again on wednessday and felt pure joy. I talked to my boss and he didn't fire me. I feel so happy to have accepted my mortality at such a young age (I turned 33 last week). So many people fail to accept death even when they're 80. I know that I may live or may die and if I die I will no longer feel any fear. Fear is like money, you cannot take it with you to the grave. I feel exhausted, I went to have a nap 3 times today and its only 4pm, but I feel so happy to have reached this place of peace and acceptance, and I feel so happy to be able to eat.
I do wonder what they will tell me on wednesday though.
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Tim, I am so glad you can eat now to maintain your weight and you will feel better.
The diagnosis you received of Possible cancer is familiar to all of us on here. I think we all take life for granted and go from day to day but when a health situation like this arises it makes us pay attention.
You received what we term a "Wake Up Call"
Many of us if not all on here have had it and it suddenly makes you feel different about so many things. Suddenly as you have found things are not taken for granted anymore. The days are appreciated more and cherished. Small things suddenly are important and have greater meaning. You have talked to your boss about your situation and found understanding and compassion where you were not sure before if that was the case. So you see the possibility of cancer has already opened a new dialog and appreciation of life and other people for you. You have found others do care.
Life is actually short and measured in the context of time, the Bible says...
"Whereas ye know not what shall be on the morrow. For what is your life? It is even a vapor, that appeareth for a little time, and then vanisheth away."
"So teach us to number our days, that we may apply our hearts unto wisdom."
You suddenly now realize in real time how cherished life is.
Many people say this is the best thing that ever happened to them. It made them completely reevaluate their life and more importantly where they would spend their eternal destiny
I am glad you have gotten to a place where you have calmed your fears and found a feeling of peace.
So Wednesday you will find the results of your tests and I am holding out hope that there is no cancer just something else that is easily managed.
Remember, "It's Not Cancer Till They Say It's Cancer".
Your new lease on life reminds me of a fellow who got a lease on life and went on the make several movies about it , a fellow named Kewn Curtis and I will post one below, a good watch even if you don't have cancer.
Ken Curtis-Quote-
Many people who get diagnosed with advanced cancer surprisingly, actually come to say, cancer is the best thing that ever happened to me. They call it their wake-up call and they say that the blessings far outweigh the pain. I can personally say that the three and a half years since I got my diagnosis have been good years. And I have to say even in some ways my best years, because I savor each day so much more. I treasure family and friends I used to take for granted. And it’s good not to have to prove anything to anyone. Right now all I need to do is discern, what does God want me to do and then do it joyfully.
https://www.youtube.com/watch?v=c98ddwbVE_g
Wishing You The Best
Take Care, God Bless
Russ
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Hi, unfortunately I have scc. Next week they will remove a quarter of my tongue and my lymph nodes. I woll have radiation therapy. Apparently treatment will take 4 months if everything goes according to plan, but I'll be unable to eat for up to a year (not sure yet what that means). I may never be able to speak again and that scares me.
I thought that I had accepted the possibility of death, but I am still afraid.
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Well, liquid, your treatment plan is not all that unusual, there are many people who have gone through similar treatments as what you are facing and come out the other side cancer free and living life. So you are getting surgery and radiation.
I think some of this is just an estimate such as treatment recovery time, not eating for up to a year, and not speaking again. I have found that many times it is up to the individual as far as the time estimate and predictions of outcome. They give you worst case but you will do well just stay inspired and move forward not negative and sit idle.
Quit Thinking of Death...
Choose Life...
Stop depressing yourself and be positive, it goes a lot farther and you feel much better.
Say things like "I am going to beat this, no cancer diagnosis is going to get me down.
I am going to post several ladies below here that will show you that once you think positively and put your mind to it you will be amazed at what you can do and feel positive about it.
By the way, make sure your care team includes a speech therapist, they are invaluable in the head and neck experience...
Ladies That Inspire, Truly Amazing Gals.........
Also along the way in my travels, I have come across three amazing ladies who have had glossectomy and one has also had a laryngectomy on top of it. I will post links to their stories below and I think you will find these ladies inspiring, amazing, and enjoying life, I hope it helps you or others who read this posting.
Kate Brown...
https://www.ucsfhealth.org/patient-stories/kate-brown
Jeannie Hopper...
Jeannie Hopper...My advice to other patients: Focus on today...
And then there is Sonya...
HI! I'M SONYA...the Glossectomy Girl
Check out her web site, up at the top you can click on subjects or view dropdowns of subjects such as a Blog, vocalization, nutrition, etc. An amazing active woman.
https://www.glossectomygirl.com/about
I hope this helps
Take Care, God Bless
Russ
Our Motto On Here is NEGU (Never Ever Give Up)
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So just a quick update. I had surgery on Thursday morning. The days after the surgery, were , horrible. No other way to put it. Worst part was the nose feeding tube. Every time I swallowed it hurt, constant torture.
About half my tongue is very swollen and partially paralized. I can talk a little, which is good. But it's hard.
This morning I was able to drink tea and nutridrink, so they removed the feeding tube. I am so relieved! I believe I will survive. In about 8 days I'll get the lymph node biopsy results. Then the oncology, department will create the radiation treetement plan. Apparently the surgeon couldn't see any,morphelogical changes to the lymph nodes, so maybe they are negative!
I never expected the post op to be so hard, but I'm here and I'm healing!
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Liquid, thanks for checking in.
I am glad your surgery is completed and successful.
I think most of us would say post-surgery or treatment is a difficult time, to say the least.
There is a great disruption in there with the surgery and the body reacts to it.
The nose feeding tube is certainly not pleasant but in other short-term a helper and a lifesaver. I had one for a short time and I agree they are very uncomfortable. Surprisingly after mine was in a couple of days I didn't really notice it as far as feeling it, just this tube coming out of my nose that gets in the way of everything. So I am glad for you that you had it removed and didn't have it very long.
You are on the way to recovery and the swelling in your tongue will go down quicker than you think. Thankfully you can talk so that concern is off your mind. You will be able to do much better once the swelling goes down.
I had a small part of my tongue removed so I have a good idea what you are going through but mine was not as severe, it was done as an outpatient and I came home.
Praying the lymph nodes are negative, but they may still want you to do some mild radiation to wipe up any errant cells left over from the surgery that are too small to be seen. If your care team recommends follow-up radiation I would urge you to take it, they deal with these cases every day and know what's best. Whatever it takes you want to make this a one-shot deal, you don't want to revisit this again.
As far as post-op being so hard I think it is because they are cutting a vital area and of course, the swelling adds a lot to it.
As far as cancer treatment I think for most of us it is the hardest thing we ever did in our life.
Heal on liquid to a full cancer-free recovery.
I celebrate your progress.
NEGU (Never Ever Give Up)
Wishing You the Best
Take care, God Bless
Russ
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I'm now three weeks post surgery and have to admit I'm feeling down. I thought I'd be working by now but I'm still so tired. I have a burst of energy around noon and feel good but by 2-3pm I just have to lie down. I'm alowed to eat now which would be amazing, but it's a real struggle. I can talk now, it's noticible that I talk weird but I speek way better than I expected. My surgeoun told me that when he cut open my tongue he saw the main artery and nerve sheeth just past where he made the incision, and he said I'm extremely lucky that those weren't cut and if they had,been I wouldn't be able to eat normally. I don't feel very lucky though. I keep reading online about people who had kneck dusections and went home the next day and to work in a week or two. I don't understand why it's taking me so long.… They are planning the radiation therapy now, and I feel a bit demotivated. I still have bleeding in my throat and tongue incision isn't closed yet. It seems as soon as I stop bleeding they're gonna put me in the microwave and zap me. The prospect of radiation therapy isn't exactly a great motivation to heal. Tomorrow I have physical therapy. I have to regain movement in my kneck. Then I'll lose it again when they give me radiation therapy. Like that game with the mole and the hammer. The faster I get up the faster they'll strike me down...
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Tim, so glad you are continuing to move on and heal post-surgery. I think it is normal to feel down during cancer treatment, in fact maybe up and down at times, but the good news is to feel up about the fact your procedures are moving along and you are one step closer to cancer-free. Tired is normal in this process also. But you will have days with lots of energy also or at least increased stamina. You are eating, good news, a bit of a struggle and that is understandable but stick with it and eat all you can, it will get better. You are speaking more good news. I hope your surgeon would have a very good idea where the main artery and nerve is and be sure and miss them. Hopefully, he was planning that. As far as being back to work in 2 weeks and the other cases you read about on the internet after getting a neck dissection each person's case is different because each body is different, each person's cancer is different as far as the size and spread of it, sometimes there are complications, there are many factors playing into it and why each case is different and doesn't compare to the other one. So maybe your recovery may be a bit longer than others but also shorter than some others also. I did find this very short video…
How long is recovery from neck dissection? (Michael Stadler, MD)Also, here is a link to a previous discussion on this board…
healing after neck dissectionHere are some exercises you can do at home following Neck Dissection Surgery…
Physiotherapy Following Neck Dissection Surgery Part 1 Physiotherapy Following Neck Dissection Surgery Part 2I know sometimes the treatment we receive can be a bit confusing but consider your tongue and lymph nodes as part of your plan, the surgical part, and yes they probably are waiting for you to get pretty well healed up before radiation starts which is part of the overall plan to get you to cancer-free. The second part of the plan, radiation, is used as a wipe-up operation to get anything missed on the cellular level that can't be seen without a microscope, thus the surgeon can't see them but radiation wipes them out.
Please keep in mind that recovery from H&N treatment is a slow process taking weeks and months, up to a year or more. This is total recovery time. Certainly not quick but will get rid of your cancer and you can move on with life. Just hang in there you will be surprised how fast things go and you will be done with treatment before you know it.
Wishing You The Best Tim
Take Care, God Bless
Russ
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