Got told today that I almost certainly have cancer

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

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

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

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

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...

https://www.mdanderson.org/cancerwise/squamous-cell-carcinoma-oral-cancer-survivor-half-of-my-tongue-is-gone--but-i-couldn-t-be-happier.h00-159302256.html

Jeannie Hopper...My advice to other patients: Focus on today...

https://www.mdanderson.org/cancerwise/oral-cancer-survivor-s-advice-to-other-patients---focus-on-today.h00-159303045.html

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)

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

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 dissection

Here 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 2

I 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

Liquiddiet , so glad you had your last radiation last Thursday.

Now you are in the thick of the aftermath of treatment and you are starting into recovery and healing.

It is a struggle and difficult when we near the end of treatment because the effects have built up over time and have quite an impact on our physical being.

And as you are experiencing with the state of your tongue your recovery has a way to go yet.

Unfortunately, this recovery is not a quick process and is measured in weeks and months but surprisingly, it goes by pretty quickly.

But for now you will have to deal with your tongue healing as best as you can forcing food through if needed and you can.

I did not have the situation you have but I had a time like most radiation folks that I lost all flavor but could still eat but with my taste gone it was miserable and you just force calories through as best you can.

You are in the very early stages of recovery, trust me you will get better and this will pass and will look like just a small period of time in your rear view mirror.

I assume you do not have a feeding tube.

I also assume you did not weigh a lot before treatment although you don’t say here but yes I can imagine the weight loss can put a strain and pressure on our body and joints in a way that was never done before the weight loss.

You will have follow-up checkups for sure, most H&N patients are followed for at least 5 years with occasional scans sometimes at least a CAT Scan each year of the H&N area and the chest because if there is any metastasis or missed cancer cells during treatment the first place they usually travel to is the lungs.

Usually your ENT is your front line protection and schedules follow up scans and appointments.

The first year you may be seen every 3 months then the second year every 6 months and then go to once a year it all depends on each individual case and your ENT.

I wish you the best in recovery and eating coming back soon and once the soreness gets less and taste comes back it will make a world of difference.

I will post some recipes and eating tips below here just use out of it what you can.

(NEGU) Never Ever Give Up

Take Care, God Bless,

Russ

liquiddiet Welcome

To the forum glad to have you.

I know what is in this first part you can't eat right now but you can use it later for weight gain, for now, there are other recipes and smoothies below you can use.

The 2 times I had substantial treatment for cancer I had a feeding tube and both times when it was finished it took a while to gain the weight back. I think now I am pushing to be a bit overweight but I found through my experience it is good to have a little reserve. To gain weight, for now, don't worry about any certain I recommend eating food that has a substantial amount of calories and or fat also. Like bacon and eggs, or sausage and eggs and or pancakes, waffles, etc. with lots of butter and syrup. Cheeses are good to add also such as cheese topping on a bowl of chili. Also after my last bout out of the hospital, I had lost a good bit of weight also and had a bit of trouble putting it back on so I purchased Boost VHC (Very High Calorie) and was drinking one in the morning with breakfast including trying to eat at least 3 meals a day of some size. This boost is 530 calories per 8 ounces serving and you can drink more than one a day till your weight picks up. This is a quick easy drink to pack in 530 calories. Usually, the Boost VHC is mostly available online unless you can find it locally mostly regular boost is in the stores. Here is a link showing the product made by Nestle    I bought it by the case on eBay but you can buy it online in many places like Walmart online etc.

Also eat a bunch of snacks like candy, cupcakes, peanut butter crackers, etc. you can fit one in anytime your sittin around. Also, nuts like peanuts, cashews, almonds, etc. have a lot of calories and are even good for ya.

Also here is a weight gain recipe that 2 ladies shared that I found a long time ago related to cancer and gaining weight afterward--

Deb,

So sorry I’ve taken so long to get that receipe for your dad! I checked with our nurses and here it is:

1 box (3.4oz) of instant pudding
3/4 cup half & half cream
1/2 cup of water
1 cup of carnation evaporated milk (use canned not powdered etc.)

Mix together in a bowl then mix with a mixer for one minute until it begins to thicken. This receipe makes 4 servings. We use it to help individual’s we serve who are under weight to assist in gaining weight. As you can see…it is very rich and full of calories etc. Let us know how your dad is doing!

Karen

• These Recipes and Tips Are From Debbiel0 on CSN H&N Section

And here is another communication shared recently with me by a lady on this forum concerning weight gain after cancer treatment and I am sure she would be glad if I would share it--

• Coffee cream ( 18%) 1 cup 480 calories
• Coconut milk 1/3 cup 150 calories
• Greek style yogurt 1 cup 270 cal
• 2 tbsp Ground Flax seed 100 cal
• 3 tbsp Hemp Hearts 170 cal
• 1 tsp nut butter 100 cal
• 1 tsp honey 100 cal
• banana 80 cal.

I would mix all of the above into a shake for my husband. It makes about 3 - 3 1/2 cups and 1300 calories.. he would sip on it all day. Then we would make him soft eggs or oatmeal to top off the calories for the day. Jello or pudding and ice cream are also another easy foods to slide down.

Using coffee cream when making soups, or sauces, cooking oatmeal in it, using it for puddings. Is an easy way to boost calorie intake. The Hemp Hearts and ground Flax can be expensive. If you have access to Costco, they are reasonably priced there. ( at least in canada that is the way it is)

Use honey as much as you can in tea or coffee, or just in warm water.

I think the best advice I got from our nutritionist was to think outside the box and add cream or greek yogurt to what ever you can think of. Throw in a couple of tbsps of flax or hemp seeds to soups, your boost, hot cereal cooked in heavy cream. Mashed potatoes with heavy cream and lots of gooey gravy is always good too.

Hope some of these ideas help. Another well balanced change from boost is Soylent. I cant remember the calorie count, but it is a very good meal replacement.

I know I am kind of rambling... but hope some of these ideas help, or at least give you a variety. It is hard to get excited for a meal that is same as the last one!

Split pea soup and baked beans with honey are great for calories..

The flaxseed and hemo hearts dont change the taste all that much..just a way to sneak another 100 calories in. I had never ventured into that type of food either. My daughter in law is super healthy, and introduced me ( young ones, ya know!)

Almond butter or cashew butter is just another alternative to peanut butter. Change up the taste a bit.

I have a long list if food allergies, no dairy, no cheese, no chocolate, so finding calories was really tough for me. Example, geek yogurt can be up to 270 cal, my non dairy yogurt is 60 calories. So, when my husband was going thru his treatment it was actually fun for me to keep finding new things to make for him. Cheese is another good source of calories, melt it and add it to soup, potatoes.

Take care Russ. Maybe sit down and try to enjoy a slice of pumpkin pie with whipped cream!

Also Here Are A Few More Postings For Weight Gain From The Forum

Flyinhigh says:

High calorie

I use a powdered mix from GNC called 1340.  If you followed their mixing instructions and used 4 large scoops with water and you supposedly get 1340 calories.  I mix it half or third strength with 12 oz. of milk and figure I get 500-600 calories, plus a lot of protein.  You can try this and if you don't like it or can't tolerate it GNC will take it back and refund your money. It comes in vanilla, chocolate or strawberry(my favorite).

Grandmax4 says:

calorie

I used a drink called Scandishake, bought it through Amazon. It's really good, can't remember the calorie and protein, I made it with crushed ice and milk in a blender, delicious

Drivingdaisy says:

Drinks

Only drank Orgain, organic and small amount of natural sugar. Decided no more chemicals in My body. I just poured it in My feeding tube. I still drink it but the plant based. Became lactose intolerant.  Good stuff. I'm more of a naturalists but to each their own. Going on 4 yrs NED, so did something right.

Suzj says:

if you want to mix it up..

If you get the urge to mix it up, go with a high Protein Boost, mixed with a carnation instant breakfast, and a few scoops of Ice Cream - that'll up your calories

In Closing:

I too and most folks on here had trouble swallowing and getting some foods down but it will come just be patient but for now eat what goes down easiest with a high calorie count. You may have to add liquid as you eat whatever you prefer. Try donuts and coffee. Eat in small bites and be patient. With my 2 cancers and 2 radiations to this day, I am thankful I can still eat but it is just a slower process. but in your case, it will probably come back completely. get with your speech therapist and do your swallowing exercises. I assume you have had contact with a speech therapist on this journey because most of us have it is standard procedure in this Head & Neck cancer game. if not contact your doc and get one assigned to you.

Lastly I highly recommend that you Do Not have your PEG removed until you can have a stable weight or have some slight gain in weight going on but it is your choice. I know after my first cancer they would not remove my PEG tube until I could maintain a stable weight for 2 weeks.

Be patient and Eat, Eat, Eat.

I hope some of this rambling helps you in some way-Wishing You The Best-Take Care-God Bless-Russ

https://www.nestlenutritionstore.com/boost-very-high-calorie.html

Hi, Matt, thanks for the compliments, I hope you are doing well and it always brightens my day when I see you on the forum. Wishing You The Best

Take Care, God Bless

Russ

Glad to hear from you logan and see you on the discussion board.

Yes check the sky day or night and view God's handy work.

Agreed-life is good

-God is Good.

Glad you are enjoying it and making the most of it.

Take Care, God Bless

Russ