Hello,
My name is Kimberly. I am 49. I have a husband of 19 years and a teen daughter. I am scared. My tongue swelled up last week, went to a dr in nova while on a vacation / business trip with my husband. They just called me today, I was told it was superficial cancer. That was all he could say.
My daughter and I are alone here. My hubby is back in va working. I can't seem to sleep,eat or breathe. I quit smoking 20 years ago, don't drink and this came as a shock.
I honestly thought it was a food allergy. My dr here is sending me to a dr at upmc on Thursday. They said it's best to get another opinion. But the dr in va did two tests and sent them to 2 different labs.
Anyone in Pittsburgh? Can you recommend a family support group?
Thanks for reading my story.
Kimberly ann

KimberlyAnn, sorry to hear about your diagnosis. I'm sure you are quite stunned as most of us are when we hear the words, "you have cancer". The wide array of emotions can be overwhelming. Have you thought about seeking out an oncology psychiatrist as opposed to a group setting? I only ask this because they are trained to help process the barrage of emotions at initial diagnosis, especially. Also, they can help your daughter get past the initial shock.

This is SO hard but try not to worry. The unknown is so very scary because our minds naturally fill in the blanks. What you have been told so far is certainly concerning but it sounds like you are taking the proper steps. The other thing I remember is that it seemed like things were moving too slowly. Looking back at my experience and the shared experiences with the 6 people I have walked through treatment with, things just take time. At every step in this thing, every doc and every tech is doing their best to not make a mistake and that takes time. Find out what you are up against, your options and then act on that.

This board is a great place to vent, get advice and encouragement. Prayers headed your way.

Hi there... that was me three years ago. I have never smoked, I don't drink and have never done drugs. I thought mine was either irritation from a capped molar or allergies. Regardless, I heard the same words. And cancer - superficial or not - is scary. Can I recommend you be seen by an oral cancer specialist - ENT at a reputable CCC? I know superficial seems unimportant - but if not handled properly it could become a bigger issue than it needs to be.

I don't want to scare you further but knowledge is power so forewarned is forearmed when it comes to your health. Superficial cancers can still spread. The next steps should be a head, neck and chest CT, and physical examination of the nodes in your neck. It's highly unlikely if it's superficial that it has spread that far, however it is better to be safe than sorry.

This cancer can seed to the nodes and be undetected by a scan when they are still microscopic, so if it is determined that a small surgery is all you need to remove the cancer and surrounding tissue, that's great. But do keep an eye on your neck just in case something pops up.

Hugs and welcome... and you will get through this.

Hi KimberlyAnn,

Welcome to OCF! Very sorry you joined the group that nobody wants to be in.

I was 46 when I heard the news and had no risk factors. I was stage 1, and although I had a few bumps in the road, I'm still her 9 years later. Finding a local support for just head and neck cancer is hard. Some hospitals have them, but not too many. Seeking an oncology psychiatrist is a good idea (I wish I had). The American Cancer Society or the Cancer Support Community may have some general cancer support groups in your area. I have found that the support of the OCF forum is fantastic - it puts you in touch with folks all over the world you have already been in your shoes, plus it is available 24x7. We are here to help you and your family get through this.

UPMC is one of the top rated hospital for head and neck cancer and I'm glad to hear you are going there this week. In addition to the OCF Support Forum, the OCF main website pages have a lot of information on OC - read the info and make a list of questions to ask your doctor. I hope you have someone to go with you - have them take notes.

Wishing you the best!

I was diagnosed December 2012 and had most of my upper palate removed and now I have a hole directly into the sinus. I was clear nodes and did have radiation. I came through it all very well. I felt the same when I found out. I did get some Xanax to get me through until my surgery. I have not taken it for over a year, however, I was grateful when I had it when I needed it most. Some big decisions need to be made. I still cry sometimes when I allow myself to worry but I focus on living the best I can. Get through the treatment - that is step one. Start there and come back here for step 2 - Living with it.

Welcome to OCF Kimberley. This is the best place on earth to seek advice and information about oral cancers. Get as much information from your doctors and read here a lot so you can ask all the right questions.

Good luck,
Don

Kimberly, welcome to our family. You have found the very best online support group to help you get thru everything you are facing. We will help you with correct medical info and support.

Its never a bad idea to get a second opinion. When you decide on a treatment center, ask what support they offer. You should be able to easily join some family groups there.

Read and educate yourself about OC. An informed patient is a strong advocate for themselves. Knowledge is power. Too often the little things dont get discussed unless you ask about them.

Now is the time to focus on being proactive and doing things to prepare yourself and your family for your treatments. Eat everything you can, all your favorites. Dont be concerned about calories too much or weight gain. Its ok to gain a few pounds, you will probably be like the rest of us and lose whatever you gained. Depending on how you are treated, your sense of taste and/or swallowing and eating capabilities may be compromised for weeks, possibly a few months.

Get a full blood count done, make sure to have the doc include thyroid counts as well.

Visit your dentist and get a complete, thorough check up.

When you talk to friends and relatives about your illness and they offer their help, make sure to tell them you will let them know what they can do when the time comes. Write down their contact info in a notebook or address book. If the time comes where you need a hand, dont hesitate to call on your list of helpers. People really do want to pitch in but often they just dont know what to do to help. When you need help even for little things like picking your child up from school, grabbing a few items from the grocery store or even doing a load of laundry dont be afraid to ask for help. Thats one area I really struggled with! I was always overly independent so for me to ask people for help it was very out of character and took alot of courage. After doing it a couple times like anything it gets easier.

Most of all, try not to overdo it with worrying. I know its not easy to avoid worrying. But try to focus on the big picture, it is not helpful at all. When a patient worries excessively it causes them to get stressed which is not healthy or helpful. Its a challenge for most of us to get a handle on worrying, with alot of practice it can be done. I know you are going thru a wide range of emotions right now. Always remember here at OCF, its ok to vent or let off some steam. We completely understand everything you are going thru.

Best wishes with everything!



PS.... Heatherly, welcome to our group. Please make an Introductory post so we can all properly welcome you.

See if you have a local SPOHNC chapter. They helped me greatly. Btw, that's Support for People with Oral, Head and Neck Cancers.

UPMC has one.

http://www.spohnc.org/local_chapters.php