Looking for guidance
Hi everyone my name is Michael (content removed by CSN staff), I am from a small city in upstate New York and was recently diagnosed with a squamous cell on my tongue. Yesterday was my first visit with an ENT specialist at Upstate Cancer Center. I am looking for any guidance from anyone that has battled this type of cancer before because the emotional strain it has put on me is a lot to handle right now. Little bit of background, I am 27 years old, believe to be a healthy person. A few months back I bit my tongue really bad to the point where I should’ve gotten a stitch or two. After Christmas I went to a local Quickcare center where they took a culture and it came back positive for a gram negative bacterial infection. Since then I have seen an oral surgeon who performed a biopsy on my tongue, my dentist who has been a saving grace for me, my primary and now the ENT specialist. I am lost in life right now. I have a beautiful wife and son at home and just want to be okay for them. Any information would be greatly appreciated by any. Thank you.
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Michael all will be OK and you will get through this. I guess since they have a biopsy and have identified this as a squamous cell as most H&N cancers are, they are working on a plan for you. So by now you should have had a CT of the H&N area or have one planned and usually with what they call contrast, we leaman call it dye. Shows any cancer in the H&N area. You most likely will also be getting a PET scan which is a whole-body scan sometimes referred to as "eyes to thighs. This is also a contrast with a small amount of radioactive material. You will need to get the contrast and wait an hour to get the scan. Since you have cancer this shows or eliminates the possibility of cancer being anywhere else in the body so the docs know what they are dealing with. I have had a small spot on my tongue and it was removed surgically with clear margins and only losing a small amount of my tongue. No follow-up treatments like rads or chemo. Yours may be different though so please once you learn more of your plan post it here and we can possibly help you more.
You should not be lost in life with a beautiful wife and son, focus on them and eradicating this cancer and look ahead to the rest of your life.
Wishing you the best-Take care-God Bless-Russ
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Hi Russ, yes I do have both of those appointments scheduled for early next week, I do know of at least on lymph nodes that is enlarged but doctors believe there might be another as well. I should have added when I did speak with doctors yesterday, having it surgically removed would be the most affective followed up with radiation and chemotherapy. I will find more out next week at my next appointment when I meet with oncologists. Another problem I or we have ran into is my weight, I have lost nearly 55 pounds in total so far, and I was told I would need to gain some weight back before any surgery occurred.
I just wanted to say thank you to you Russ for reaching out to me. It has been a lot on me and my family both mentally and physically, but I am staying positive and looking forward. Thank you again.
Michael Ross
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No problem Michael if I can help in any way please ask. Always include your up-to-date details as to where you are at in your situation as it makes it easier and we can answer more directly. I am not going to speculate on your treatment options right now but please keep us updated when you find out more.
So if you need to gain weight for now don't worry about healthy because the point now is to get you prepared and through this cancer. Eat what you like and lots of it and after that eat some more. make it the highest fat item you can such as bacon, baked goods or whatever.
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 https://www.nestlenutritionstore.com/boost-very-high-calorie.html 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
I think this is from Debbiel0 on the forum.
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!
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
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Michael,
I am sorry to read that you have Tongue cancer, but I am glad that you found this site. I can't add much to what Russ has already covered, right on point as usual. When you find out more next week, we will be on standby to help answer your questions as you learn what your next steps are. You have age on your side which is helpful.
As Russ mentioned, don't be shy about putting some weight back on, once treatments start, you may lose what you gain now. Try to relax and please stay away from Dr. Google since a lot of the information out there is old.
My Best to You, Your Wife and Son
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Michael,
You got news that has devastated all of us on here - but there’s a wide variety of possibilities.
You’re young and healthy, with a beautiful family, and I sense a strong spirit - so you have huge advantages!
Try to stay calm, focus on your family - and fight whatever comes, head on!
Survivors like Marine, Russ and the rest of us, will give you all the support we can...
Hang in there, buddy - we hope you have the best possible outcome here!
MG
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I appreciate the response Marine and this is my first day using this site, I’m grateful for it already. And yes when I found a few weeks ago about this cell I Googled everything about it and it’s been destroying me ever since. I know I shouldn’t be doing it but I wasn’t given any idea of what it was hence me looking this up. So thank you.
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Just wanted to add, what I found out in the past few days. Had a pet scan Monday, had a ct scan Tuesday and met with a team of oncologists, doctors, and a reconstructive surgeon. Those doctors and oncologists had a meeting to discuss my case and a course of action. Got a phone call this morning, it is stage 3, it has only spread to lymph nodes and no other areas. Next week will possibly begin a chemotherapy treatment to shrink it before doing any type of surgery. Still in shock and looking for guidance. Didn’t think it was possible to cry this much at 27 years old. I know all cases are different but it is so hard for me.
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Michael,
Thank you for taking the time to give us an update on your test results and upcoming treatment plan(s). On the subject of crying, I can say that I have done so myself when I was going thru treatments. I had a gut feeling I had cancer before the Doctor gave me the phone call to confirm my feelings. After Surgery and about the second week of Radiation, what I was holding in finally released. You are not the first nor will you be the last to shed tears thinking about what we all go thru.
I hope that your Doctors keep you as comfortable as possible, my Surgeon, and Radiation Oncologist were great. I was never in any real pain, some discomfort but no real pain. You will get thru this, and ask as many questions as you need to get the answers you require to ease your mind.
My Best to You, Your Family and Everyone Here
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Hi Ross,
Sorry that you are passing through this. I am 6 years off my last radiotherapy. I had a a very bumpy time. I am doing just fine now, except some Rt long term complications, I enjoy the life. There is a light at the end of the tunnel.
I just want to add nutrition recommendations: My main protein source was eggs. There were days that I had 4 eggs.
You will get through this.
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Hello Michael and thanks for the update. In my opinion, I think you have a pretty easily treated case here and they usually have very good success with lymph nodes. The key here is that the only place you have cancer is in your lymph nodes. That is actually great because it is not on your throat, tongue, or upper palate which would be harder to treat and have more complications. Many times you read cases on here where someone has cancer in another area of the head and neck and it has spread to the lymph nodes. Another key thing is that the cancer is hopefully encapsulated in the nodes meaning it has not spread beyond the nodes and into muscle and tissue. Many on here have had what they call a radical neck dissection including me. The doctors are very successful with this type of cancer and it looks like your docs have a plan worked out for you. Back in 2012-13, I had throat cancer and a large tumor in my throat and they did the same thing with me gave me chemotherapy to shrink the tumor before the main treatment plan was initiated. I would guess your docs are shrinking the cancer down and will probably do a radical neck dissection and then will want you to do some follow-up rads. I had the same thing done back in Sept. of 2019. I only had cancer in one lymph node but it was not encapsulated and had spread into adjoining tissue but I am guessing yours are all encapsulated. Then afterward I had 30 follow-up radiation treatments. You will get through this with no problem. Some of it may not be easy but many have had the same thing and it works out well. I can vouch for it as I am still here typing to you. So please continue to keep us updated and ask any questions you may have.
Wishing You The Best
Take Care-God Bless-Russ
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Ross,
As I always say to anyone who may get some radiation and chemo - EAT, EAT, EAT - ALL of your favorites and LOTS of them. It's almost impossible to describe loss-in-taste, and the mouth issues that can hinder eating, during treatment.
Almost everyone describes a significant loss of weight, as a sideline to treatment. So, if you can put on a few pounds, it would be to your advantage.
As far as the emotional aspects, it's impossible not to be upset ... ask "why me". I think all of us have been there.
You described yourself as young, fit and with a beautiful family. This may sound funny, but a positive attitude is crucial, to help not only yourself, but your loved ones through this. This doesn't mean you won't feel fear and depression ... but it may spare them, some unnecessary worry, if you're able to face it head on..
I'm already looking forward to the days after you've finished treatment, you're able to eat normally again, and then your first NED (No Evidence of Disease) follow up report.
I think you're going to get through this all, and be a source of strength and inspiration to your loved ones, and your fellow survivors on here!
Hang in there, bud,
Curt
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My mistake Ross you didn't miss speak. I went back to the beginning and read your opening post and I see there is a spot on your tongue, biopsied and confirmed. So with my last comment let me say I hope the tongue involvement is small and can be easily taken care of along with the lymph node involvement. Your cancer team and strong family will get you through this and any help we can provide support-wise is at your side. Keep us updated as you learn more about your treatment plan, we are here with support.
Take care-God Bless-Russ
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Michael
As stated above we have all been down that road scared s***less. I also had squamous on the base of my tongue and had surgery to remove part of my tongue, my epiglottis, uvula and a few lymph nodes. I didn't have chemo but had radiation which ended exactly twelve years ago yesterday. Like Russ said once they give you a game plan we can all chime in and reflect what to expect. It is a good idea to keep your weight up and if they are concerned once treatment starts they may suggest a feeding tube. I had one just after the surgery but they removed it a few weeks after. During radiation I did lose more weight 95 pounds overall. They did keep threatening me that they were going to put another feeding tube in. But I managed through and after it was all over I told the Physicians Assistant who kept threatening me "Nanny Nanny Po Po you didn't put another tube in" She laughed and said they could only do it if I consented but they wanted to keep the pressure on me to keep my weight on.
One thing I can warn you on right now. After a PET Scan don't play hide and go seek with the kids after dark. You tend to glow with the radioactive juice they [put in you and the kids will find you every time.
Like I have told many on here and other sites, if I can do it anybody can. And after you've completed, you can tell me I was right.
Seriously, you will get through this, it will just seem a little overwhelming at times because you heard those words that we all dread.
Jeff
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Update: just wanted to say thank you to everyone who has commented on my post and given me hope. Went back to the doctors today and it has upgraded to stage 4a because it has involved lymph nodes. Still no spreading elsewhere just the nodes. Monday April 4th I begin a 9 week chemotherapy treatment, with 1 treatment every 3 weeks for a total of 3 treatments to try and shrink the cell before doing any type of surgery. I will continue to post my journey on here. Lots of tears shed in the last couple weeks but I need to get better because of my family. Thank y’all from the bottom of my heart.
one day at a time
Michael Ross
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Dear ,
Please don't think of cancer too much. nowadays its easy to live with cancer.
I had same kind of cancer in 2019 October...having age of 73 years !!
You are young and can fight it. .you can do it.
I'm sure you will enjoy life with your family.
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Hey Mike,
You're going to be alright. I too had Stage 4a cancer because mine originated in the tonsil and migrated to the nearest esophageal wall and then into the closest lymph node. I just had my first CT scan yesterday after surgery to remove the tonsil and lymph node, plus 33 treatments of 7000rad radiation plus 6 rounds of chemo, 3 Cisplatin and 3 Carboplatin/Taxol. I was going deaf from the Cisplatin so I pulled out at 3 treatments and my hearing is still plagued with tinnitus but it will get better in time. I just keep telling myself I spent too much time at Ozzy Osborne and Metallica concerts. One of the first things you need to do is to secure food for you to drink or put in a nasogastric feeding tube. I used Kate Farms organic meal replacements. MD Anderson gave me a huge sample of those (I couldn't believe how generous they were). I consumed 2500-3000 cals until I couldn't swallow anymore, then had the nasal tube inserted and was back to proper nutrition during the fight.
You can do this one of two ways, give up and cry all the time about your situation or see this as a great wake up call to change your life, the foods you eat, the things you think, etc. If you are lifelong victim (not saying you or anyone is) stop that crap ASAP. You are the master of your destiny. This is a chance to make friends with the cancer, tell it it's not welcome and to thank it for giving you the opportunity to change your life. So many people I've met at MD Anderson (all patients I ran into) just kept saying over and over how they were victims when, sorry to say, they created this situation long ago and the cancer is here now to collect its dues.
We live in a toxic world. Our devices, food stuffs (factory food is horrendous), the water we drink, the thoughts we have thanks to a horrid media machine that programs you to be a victim, has created this epidemic of cancer.
You are going to be just fine. Be positive. Look at this as a way to get friends and family to pray for you, send you loving thoughts, etc.
I could hear over and over a few words and a recurring phrase in my head while in the worst of states during my battle and that was "soft", "soften" as well as "balance" and "balance your life Graham". I was a daily drinker for the last 25 years. I would drink alcohol everyday, beer, wine, tequila etc. Wouldn't drink too much but it was EVERY DAMN DAY. I could hear the impressions from spirits around me that my previous behavior created the setting for the cancer.
Reach out to me for suggestions of meds and over the counter solutions to alleviate the side effects of radiation and chemo treatment. The doctors at MD Anderson yesterday were simply stunned at how good I looked in my follow ups. They were utterly shocked and remarked I was one of the best healers they'd ever seen in their 30 years of treating head and neck patients. The bulk of any fight is in your mind and how you look at the opportunity.
A former member here, a woman near my age (late 40s) left the boards due to harassment and proselytizing she experienced. She had had enough, so don't allow anyone to persuade you from your beliefs or harass you. God aka, Source Energy, the giver of life, etc...works through us all in different ways. I wish you the best in your journey and never hesitate to DM me directly as I have a list of proven solutions for fighting this aggressive cancer.
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Thank you so much for the response my journey has literally just started. This is my first post since arriving at the hospital to receive induction chemo, actually I just had a feeding tube installed about 3 hours ago. Still in quite of a pain but with the weight I’ve already lost I needed some nutrition. I appreciate the comment and will let you know if I have any questions. Thank you again my friend.
Michael Ross
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