Hello all,

My name is Jen and I have recently been diagnosed with squamous cell carcinoma on my tongue. I thought it was a canker sore but it didn’t go away and just got bigger I noticed it around the first of April and I went to a doctor, dentist and finally an ENT who took the initial biopsy and told me it was cancer. He’s referring me to a surgeon at U of M hospital I know surgery is in my future it’s scheduled for June 20th idk what the follow up treatment will be or even how extensive the surgery will be as they took a second biopsy at my consultation appointment.

I am so scared. I’ve never had any health problems like this I’m 35 and I have 2 young kids I feel so overwhelmed I go from fine to tears in minutes. I just don’t know how to handle all this, I never saw it coming.

Any hope or encouragement would be greatly appreciated
-jen

Welcome to OCF, Jen! Im so sorry you have been recently diagnosed with oral cancer (OC). When I read your post, I was very similar with what I thought was a canker sore that just stayed there not getting worse or better. I was just thankful that at least it didnt hurt! I also had 2 children but mine (and myself) were older than you and your children. I was a single mom at 44 and my children were 15 and 17, old enough to do some things for themselves but they still were kids who always looked to me for helping make decisions. Try your best non to worry!!! Joining our family, we will do our very best to help you with info and support. Im including links at the bottom of this post that will be a huge help to someone just starting out.

Right after being diagnosed, most of us have felt like we were carrying the weight of the world on our shoulders. Running here and there for too many appointments while all the doctors are talking about things that are hard to understand much less the patients is able to pronounce correctly. Reading posts here and page thru the main OCF site is an important step to help you to learn about your illness. An educated patient makes for a strong advocate for themselves. Ive also found by learning more about OC, it helps make this easier due to having a much better understanding of what comes next and what is common for OC practices, recoveries, etc. Just remember everybody's different! You will see that mentioned many times here as well as hearing it from your doctors. Its true and being different is not always a bad thing

First I would suggest before doing surgery to go for a second opinion, hopefully at a Comprehensive Cancer Center (CCC). At a CCC the specialists will all get together for a tumor board meeting (patients and caregivers can attend and they should do their best to be there). By working with a team based approach, everyone is on the same page to create each patients individual treatment plan. This helps to simplify everything as well as being treated by top US doctors and their state of the art equipment and procedures. Plus you arent running here and there getting different bits of info you need to figure out yourself from several different doctors who arent communicating with each other.. Please take the time for a second opinion if at all possible!!! Surgeons cut while radiation oncologists will advise radiation for their patients. Just remember once its cut or been removed, it can never return back to its original state or functionality. You may only have one shot at getting this right so you really should consider going to the CCCs to at least hear what they have to say. At the CCCs all the OC specialists work together and are very experienced with treating thousands of OC patients each year. Its no comparison to a smaller local facility where they might see only one OC patient a month or maybe only a couple per year.

Although you may not feel like eating, I suggest you push yourself to start eating all your favorite foods including desserts. Your body needs at least 2500 calories and 48-64 oz of water when going thru cancer treatments and recovery. If you can push to take more in for example 3000 or 3500+ it helps to make whatever you are facing and needing to recover from easier. I'll apologize in advance if you read this over and over as you read thru posts, it really is that important!!! Most patients should continue taking in this much at least the first year (even better to do this right thru 2 years) post rads. After what we go thru fighting both the cancer and trying to heal our bodies we need extra calories to aid in our recovery. Having young children means you are probably already burning up quite alot of calories just doing your usual day to day mom/household duties. If possible try starting to increase your intake and have all your favorite as OC treatments can affect a patients ability to swallow, chew and sense of taste making it very challenging to hit the daily minimums.

Anyone who offers their assistance when you tell them you have cancer, let them know what they can do to help when the time comes. Too often well-meaning friends and relatives want to help but they dont know what they can do. When going thru rads, may patients are not able to drive to their treatments so its a good idea if your treatment plan would include rads to line up at least 3 drivers who could alternate. Other small things that can mean alot to someone being treated for OC are... besides transportation for treatments also you may need help for doctors visits and things for your children or household, picking up prescriptions from the pharmacy, doing a load of laundry, walking the dog, cutting the grass, picking up your children for a day of fun or playdates at their house, taking the kids out to the playground or movies to give you a break, doing sleepovers so you can rest, rotating several people thru church or work to select a day and make a big dinner to share with your family (more on this later if you think this would be helpful) are just a few of the many things your helpers can do.

Office Dinner Exchange Program... At my office we had about 75 people who took a calendar and everyone who could wrote their name on the calendar with what they planned on making for the sharing dinner. So say my day was Thursday, on Wed evening I made a big pot of spaghetti and meatballs. Before we ever sat down to eat our dinner, I already put away a big disposable container of spaghetti, meatballs, along with a loaf of italian bread and extra sauce in a seperate container. If I had salad with dinner Id make a bigger one and put some away as well. The next morning I took the leftovers into work and put them away in the office fridge for the delivery person. There were 2 ladies who lived the closest to the sick woman so they would drop off the new dinner after work and pick up any containers from the previous nights dinner for the people wanted their containers back. There werent any dinners done on the weekends, that was leftover day or easy meal days for our sick friend. I signed up several times. I really enjoyed being able to help our friend by making her life easier and at the same time it relieved her worrying about what her family would eat when she was too sick to cook. This dinner exchange program also brought everyone in the office closer together as we were all working towards a common goal to help someone we all cared about during some of her hardest days.

Sorry about getting sidetracked!!! I tend to do that sometimes. Theres a million and one more tips I could pass along but I dont want to overwhelm you with TMI. so I'll quit while Im ahead. Stick with us and we will help you thru everything, its ok to lean on us we completely understand what you are going thru. We have been there ourselves and know what you are dealing with. Best wishes with everything!!!


Main OCF Site... Understanding section

NCI list of CCCs

US News Best Hospitals List

I say definitely have hope! They can do so much now. I am a year out from my last radiation treatment and I am now cancer free! It was a bumpy road but the destination is worth it. You can do it too!!!

Hi Jen
This is Hazel I am 10 month post radiotherapy for squamous cell cancer of the right tonsil and was found h p v 16+ .I am 62 if I can do it anyone can I am a wimp break a finger nail and I cry ,but 35 radiotherapy sessions and 2 chemotherapy sessions I found positive mental attitude got me there.
I echo Christines advise delegate delegate and then delegate some more. Don’t take it on yourself , if at all possible always have someone with you at meetings with consultant s get them to take notes, go with a list of questions write the answers down When you come out your brain will be a mush but if you have notes yiu can refer back to them.
Plus eat as much as you can as weight loss is a common theme , I lost Just I er 2 stones and am only 5 foot tall ,but in the week so leasing up to treatment I ate ice cream ,cream cakes in fact the higher the calories the better it’s one if the occasions that you can eat . Even if in the supermarket I find it strange no longer looking at How loan the calories are but weighing up in my mind has it got enough calories to be worth my time eating it, so low calorie food deffo not worth it.
Good luck
Keep in touch Hazel

Hi Jen. I’m Mokie and pretty much in the same boat as you are. I had severe panic attacks when I was diagnosed with SCC of the tongue on 20June. I have no immediate family where I live so I had occasional support by phone. It left many hours of downtime to read and think and fret about the unknown. I don’t know if you have a chosen faith, but I have found strength in my personal beliefs. This and the people on this support site have made it possible for me to get through this first phase of being diagnosed and on to my plan for surgery without being emotionally crippled. Hope can get some comfort soon Jen.

Hi Jen,

My Dad, who is 84 had reconstructive surgery due to squamous cell carcinoma in his right jaw and right before surgery it spread to his cheek. He had surgery at the UofMN almost 5 weeks ago. Feel free to contact me, if you want to know more about my fathers specifics.

Shirley