Hello Everyone,

My name is Katy and my Mom was just diagnosed with Oral Cancer. We're not sure what stage it is yet, but doctors think that it is either stage III or IV. She had an infected tooth for 2 years and did not get it checked out by a dentist until Fall of 2011. He thought she had leukoplakia, but my Mom thought she was okay so did not get it checked out. Later on, in February, she developed a large lump on the right side of her neck (lymph node). She had also had a sore in her mouth, and it was progressively getting worse. We just found out last week that it is squamous cell carcinoma with possible mets to lymph and lung. My Mom is only 48 years old and is not a smoker, drinker, and does not have HPV.

On top of all of this, I recently moved across the country away from her (husband is in military) and I am 8 months pregnant. This is my first pregnancy, and I've been dealing with health problems of my own. It hurts me to not be by her side at this time, I just want her to be healthy. She has lost lots of weight and I am very concerned. Her and I are extremely close-she is my best friend. I am lucky to have found this forum and I look forward to talking with all of you. Thank you for reading my post, and please pray for my Mom to heal.

Hello, i�m sorry for your mom. The oonly advise i can do is to run to get treatment as soon as possible. I was really resilient and insisted a lot with tons of doctors that presumed it was impossible that i had oral cancer so young. But I had. Please ask your mom to go as fast as she can to a cancer center. And good luck, praying for everything to be fine with your family.

Welcome to OCF! Im so sorry to read of your mothers cancer. It is a very stressful time for you to be going thru this with her. I know being far away will make you worry even more. For your own health, please try your very best to stay busy so you dont make yourself more upset about her situation. Im so glad you found this site to help you both get thru this. OCF is full of important info and kind, caring members to help you both.

There are quite a few members who have had no known cause for their cancer. At this time no matter what caused it, the treatments are the same. The only cures are surgery and radiation with or without chemo. The best thing she can do is to go to a large comprehensive cancer center (CCC). This is where a whole team of specialists will work on her own individual case and see many oral cancer patients every year. It will give her the best chances of a full recovery. Even if she already has seen some doctors, a second opinion at a CCC is a very good idea.

http://oralcancerfoundation.org/resources/index.htm#centers

If she is already losing weight, she will need to turn that around right away to help build her up before any treatments. Her daily intake should be a minimum of 2500 calories and 48 oz water. I cant stress this enough, especially if she is already losing weight. Many of us have had success with Carnation Very High Calorie. It has 560 calories per 8 oz can. It can be easily ordered thru the Amazon link (the green box on the main forum pages). A case runs about $48 with free S&H. Her doctors may talk to her about a feeding tube. This is a highly debated subject here with each side giving arguments both for it and against it. Im one who thinks its an important tool to help the patient get thru this easier. She will still need to swallow water daily to help her retain that function.

Prior to beginning any radiation treatments she should do a few things to prepare. She should be seeing a dentist to get flouride trays made and any teeth removed which arent in the best shape. She will also need to get a hearing test done and also a full blood count including thyroid.

Feel free to ask any questions and we will help you. Your mother may want to also join OCF herself so she can learn about her illness. Best wishes with everything!

I'm so sorry to hear what your mom is going through... Has she been scanned? I gather since she has a definitive dx of cancer that she has been biopsied. They can't tell for sure the extent of the involvement without a scan. Hopefully it's localized to the nodes, and her mouth. I too had no precursors including the HPV negative situation. Christine's right the cause at this point is unimportant. I know she doesn't live near you but you in fact have one of the best hospitals in your area - md Anderson. Make sure she gets to a ccc - and quickly things should go into hyperdrive at this point if they dont tell her to push to get them moving. And yes on the nutrition! Though tell her not to load up on junk calories - make them healthful as they will help her fight. Hugs! And do try to relax pregnancy is always a stressful time.

Thank you all for your kind words and responses. I really appreciate all of the advice, as this is a very new situation for me. You all seem to have been through quite a lot with this disease, and I hope all of you are doing better.

She did have a biopsy of the lesion on her tongue and it came back positive for squamous cell. She is having an MRI and CT scan this week to check for mets. She has quite a large lump on the right side of her neck (how we knew something was wrong). She is currently being seen at Boston University Medical Center, which I hear is excellent with oral cancer surgery and treatments. Also, my Dad is a physician, so that helps as well.

We are really hoping that it is just localized to her lymph nodes. She has been complaining of chest pain and shortness of breath, so we are concerned that it could have already spread. My Mom has always been in shape; she exercises more than an hour every day. Doctor said she has that on her side. She also has changed her diet drastically. She is now a vegan and is eating very well. She lost about 30-40 pounds since December and is now trying to put it back on. I will get the Carnation for her, thank you for the advice. I think she drinks muscle milk right now for calories. The doctors haven't talked to her much about treatment yet, as she has not had the scans. I'm hoping they will do the surgery asap. It is very difficult to not be with her, as I am her only family besides my Dad.

Thank you all for listening, and I will take your advice and make sure that they get the ball rolling on this as soon as possible.

I wish I had more time to write as I'm sneaking in a post while I'm at work, I unfortunately know how you are feeling as my mom was handed a similar diagnosis last August. My mom had her surgery at Boston Medical as well, they are excellent! Who is she seeing? I know most of the oral surgical team at BMC from my mom's surgery, the SICU there is fantastic as well and I can't say enough about all of the nurses there either. My mom's team included Dr. Salama, Dr. Jalisi, fellow Dr. Nadershaw, and 5th year surgical resident Dr. Helal. They are all fantastic at what they do as well as compassionate. Dr. Salama's nurse practitioner Maryann is amazing as well and actually became a good friend of my mom's. She is in good hands. Make sure she gets her treatments at Dana Farber or Brigham, my mom decided to stay w/ her breast cancer oncologist who was more local to her in the suburbs and I'm afraid that made a bit of difference in her outcome...

Feel free to ask as many questions as you have!!!

Hi there again. From a fellow veg head, tell her to buy a good vegan protein mix and start making herself a shake in the morning that has a lot of protein and fresh fruits etc... She'll needs to get her protein up to help make it through surgery and treatments. Hopefully the shortness of breath is not related to the cancer being in her lungs, but rather exhaustion related to having cancer. I too was a veg head and worked out once a day 6 times a week. It does help to be in shape going into this whole thing. It's also fantastic your dad is a dr. this will help immensely because he probably has contacts, and most importantly can advocate for your mom. Hugs... let us know what is going on. ;o)

Hey, Katy, so sorry what your mom is going through. I was 63 when I was diagnosed and mine was stage IV. I was very healthy, too. In fact the last time I had been hospitalized was 1979 when my son was born. I also never smoked in my life, was a light social drinker and was negative for HPV. The most important thing, of course, is to get treatment as soon as possible, and to eat, eat, eat. Keep us posted and remember that we are all here for you. Her good health should help her, and the fact that your dad is a doctor should also help. I am nearly three years out and am cancer free!

Boston Medical is good however if you need a second or want to be sure your mom gets the best medical care available anywhere...Mass Gen is the option. It's ranked #2 in Ear Nose & Throat, 7th in Cancer Care and #5 in rehabilitation "Nationally". Literally Mass Gen is one of THE best medical facilities in the country.

Just a thought.

Eric

Great point, Eric. Mass General is a great hospital as well. Can't really go wrong in Boston. We were never patient enough for the time it would take to get the 2nd opinion though, it was just too aggressive to waste any time.

LD, it definitely helps that your dad is a physician. It's always wise to get a copy of your records and send them out to a few different docs that your dad may have connections with.

Let us know how things are going!