All,

I've never had cancer before so this is very new for me. I thank you in advance for welcoming me into this forum. I have a complicated history, but quite frankly I was really surprised to find out it was cancer. I'm only 35 years old.

Back at the beginning of December, I woke up with a tooth abcess on my left upper mouth. I was told that I needed to have a root canal. At the meantime, I had a long term problem with my left back molar, where it needed to be pulled and was bothering me by scraping my tongue at the left base. Long story short, I had the root canal and tooth extraction done under general anesthesia. After that, I developed a complication with my tooth extraction and also developed oral thrush from the overuse of antibiotics. I thought that was the reason for the lesion on my tongue getting worse...but apparently that was not the case.

I live in California, but all of my family and friends live in Missouri. The first slight indication I received is that it could be cancer was at my last appointment with the oral surgeon in CA, the day before I left on my trip to visit St. Louis for Christmas. When I was in MO, the lesion on my tongue got progressively worse, so I had a biopsy there. On New Years Eve, whilst I was preparing to throw a huge party, my dentist called and advised me that the biopsy was cancerous.

I am posting here as I have filled in some of my close friends and family, and they have been really supportive, but I don't know what to expect. I'm really afraid and don't fully understand the journey ahead of me. The tongue lesion is about the size of a round nickel. I know that surgery, radiation, and chemo may be involved. I work at a small but very promising start up company in the SF Bay Area. I love my life, have a great husband and a condo, have three kitties, and my job is great. I don't know what to do.

As far as what caused it, I'm really not certain. I do have a history of drinking and smoking, but am still relatively young. I also have HPV which has caused cervix cancer scares in the past. I found an awesome E-Cig in MO called "Ovale" so I've been using that diligently, but it's tough.

I'm scheduled to see an ENT with Kaiser (an HMO in CA) this Friday. I hope they do have a sense of urgency. I don't want to die, but I can't afford care at Standford which is what my oral surgeon recommended.

I thought I would introduce myself and read up on other stories. It's been so hard to explain to my family, friends, and management at work. So, I just want to make some new friends and connect with others that are experiencing this as well.

Thanks so much for your time in reading this - if you got this far! :-)

Gina

Gina, welcome to OCF! So sorry you are facing a battle with oral cancer. Glad you have found this site to help you get thru it.

The best advice I can give you is to go to a top cancer center. It really can make a huge difference! Here is the list of NCI cancer centers.

http://oralcancerfoundation.org/resources/cancer_centers.htm

Nutrition will be a huge factor in how easily you get thru this. Every single day you will need 2500 calories and 48 oz of water, minimum! I know it sounds like its too much but this is the least you should be taking in. Your age will hopefully help you get thru it easier too.

Get a full blood count including thyroid. See your dentist and get fluoride trays made any teeth pulled which are not in good shape. Get your hearing checked.

Always take someone with you to doctor appointments. Read here and on the main OCF pages and educate yourself. Line up friends and family. Anyone who offers to help write down their name and number and tell them when the time comes you will contact them.

When in doubt ask questions. We are here to lean on for info and support.

Best wishes!

What type of cancer did the biopsy indicate. Have you been Staged? Just because you have vaginal (I assume) HPV doesn't mean that you could have oral HPV as there is no study that indicates it can travel throughout the body. Also if your cancer is located in the forward tongue then it's very UNLIKELY that HPV is the cause.

Sorry you have to be here but this site will prove to be worth it's weight in gold.

Keep us posted.

Gina, sorry to hear about your recent diagnosis, and having to join, but welcome. The first few weeks is like a hurrucance coming at you, but it will slow down. When you see an ENT, usually more tests will be ordered...a PET, CT or MRI, and an endoscopy under general anesthesia, along with usual pre-surgery work up, and biopsies taken of any suspicions, so the type, extent of the cancer, if there is any other involvement, can be determined, and tumor graded, staged, and if HPV is related or not. Based on the findings, it will be decided what treatments will be appropriate, but the lesion sounds fairly large being the size of a nickel, but the depth is just as important. Sometimes surgery is done first. You may be referred to see an MO and RO, at some point, Medical and Radiation Oncologist, if they will be involved with your treatment, as well as others, if needed, and maybe another ENT if beyond the scope or expertise of the doctor. Basically, you will need a multidisplinary team of professionals to treat this disease, and is why ChristineB recommended the NCI's list of Comprehensive Cancer Centers, in addition too, having another person present with you to write down what is said since most will be forgotten in the heat of the moment.

You can always get a 2nd opinion, and suggest you do, and to start keeping your own file with copies of any and all reports for your surgeries, biopsies, payhology, blood tests, including the CD's, x-rays for future reference. I heard of Kaiser, and may want to see if any of your doctors are US News Report's Best Doctor's list, if you are unable to go to Stanford.

The other things often not considered, and may not be necessary, but how you will sustain your future finances, medical, and employment, if you are unable to work or need extended time off? You may want to see what your employments benefits are, and any city, state and federal benefits available, before needing them. The social worker at the hospital can assist with this if needed.

Good luck with everything.

Thank you Christine - it's nice to virtually meet you! I've read some of your other posts on here and it sounds like you've been through a lot. I really appreciate your advice. The 2,500 calorie thing will definitely be a challenge, I don't think I clear 1,500 on a good day. I've never been a big eater and now it's really painful to even try and chew. But, I'll try...

Sadly, my husband is one of the best Indian chefs in the Bay Area! :-( But I think spicy food should be avoided for awhile.

Hi David,

Thanks for your reply! I'm looking at the biopsy report right now and it indicates "invasive squamous cell carcinoma". It's on the left side of my tongue, towards the back. I don't know if that means "BOT". I'm really going to have to figure out this auto-signature thing! :-)

Thanks again,
Gina

Great to meet you Paul, thanks for your advice! I am seeing an ENT on Friday, so I suppose we will take it from there. My dentist seemed a little bit nervous about Kaiser because they are an HMO, but there are some conveniences about being in a network. And it's inexpensive, a lot of procedures are covered with a very modest co-pay. My boss talked to HR yesterday and said that she would try and ensure that my finances are covered as much as possible, so that is good news. Instead of having to take a leave of absence, I can work from home as long as I can talk and type. She also said she would give me projects that don't require travel until we know more information. If my speech is affected though after surgery, I will need to take a leave of absence as I do have a lot of direct interaction from clients. So, we will play it by ear. I just wish I had some sort of schedule, what to expect and when...like a project plan! But, it sounds like with having a whole team to treat you, it's pretty hard to know everything in advance.

Gina, there are ways of boosting the calories without actually eating more in terms of volume. For example, add skim milk powder to whole milk to make fortified milk and then use the fortified milk to make smoothiies. Try to eat a lot ( I told people I was fattening up my husband) prior to treatment and eat all your favorite foods to your heart's desire. I tried very hard to keep my husband at 2000 calories a day and still, he lost weight in the course of the treatment. I totally agree with Christine that you need as much energy as you can find to fight the cancer and to help the body repair itself. Hydration is vital, it can make the difference between a feel-good day and a crappy day.

Hi Gina,
My husband is a Kaiser member, but was treated out of the system because Kaiser in our area does not support that level of therapy. I think your area may support more sophisticated treatment, but I'm not sure. In any case, if you get your local Kaiser book out, or look it up online, there will be a process for getting a second opinion, which is never a bad idea, regardless of where you will ultimately be treated.

When you see the ENT, bring a list of questions to ask the doctor and write down the answers. If you have a notebook, you can staple everyone's cards to it so you won't lose them.

I would also suggest that you look at the NCCN treatment guidelines on this site NCCN Treatment Guidelines - print the ones for oral tongue and oropharyngeal (base of tongue) since we don't know which it is and bring them with you. These guidelines constitute a project plan for treatment - but what we don't know is exactly what type / location your lesion is, as well as the exact stage. They are NOT fun to look at, but will give you a general idea of the possibilities. it will also impress the ENT; the more that you and your doctors think of yourselves as partners in this fight, the better.

Best wishes - this is a heck of a way to start the new year.
Maria

Thanks everyone! I haven't seen an ENT yet but the link is very helpful. I should know more tomorrow once I have my appointment and hopefully be more specific about what I'm facing.