Hi, I'm Kendra... I'm new to all of this...this site and cancer.

My father was recently diagnosed with cancer. They found it in his tongue and we're currently looking into seeing where else it may be. But, I must say... I personally am losing my wits.

I'm a twenty year old college student in Springfield, Massachusetts. I took a few weeks off from school to stay with my father who is in Chesapeake, Va. He found out about the cancer about three weeks ago. He started to roll over and play dead, which frustrated me. I was lost and hurt, I wasn't ready to lose my dad. He came to Massachusetts to tell his family of his condition. Luckily, a few of his closer family members knocked some sense into him and he is agreeing to seek treatment.


He is scared of losing part of his tongue and going through all of the treatment and still coming out losing in the end.

I'm trying so hard to be his strength. I'm still young and have never lost a close family member. (Several close friends but not a family member.) The thought of what my father is going to have to go through and the fact he will never be the same kills me.

But, it's hard. I'm sure everyone who reads this understands how hard it is to deal with it. I don't even know what stage it is yet because we're waiting for the scans. But my god... it's hard being in the dark. It's hard dealing with it. I cry nearly every day because of it. Even as I write this, I'm crying. I'm scared of not knowing what is to come.. and how his life and my life will change.

So... I guess I need to know what is the best thing to do to continue to be his strength but not lose myself either.

PS... he still smokes his cigarettes and will not listen to me that he needs to give up... any recommendations?

He really should quit the smoking, it will help with the recovery process/prognosis. One thing you will hear a lot is to get 2nd opinions. Surgery should not be a fore gone conclusion. I'm not a Dr and would never pretend to be one so I give advice based on my experience. There are lots of folks around this web site that didn't have surgery, and lots that did, I didn't. I chose radiation with concurrent chemo for my base of tongue cancer. I did have a neck dissection surgery to remove lymphnodes and 1 was positive for SCC. It's a personal choice that your Dad will have to make in consultation with his Dr. I chose no surgery after a great deal of reading on the National Cancer Institute site and the NCCN Site below:

www.nccn.org/professionals/physician_gls/PDF/head-and-neck.pdf

There really is no right or wrong decision just what your Dad feels comortable with. But I strongly encourage a 2nd opinion from a CCC or and NCI listed facility.

Kendra,

We all know what you're going through. Try to remain as calm as possible, especially around your dad. It will only help. Tell him that there are many people who have been through what he is embarking upon and there here to tell their story. Encourage him to ask questions.

As has been said, you have come to the best possible place to get the kind of help this site offers.

By asking questions you will become more aware of this type of cancer, it's treatments and long term outlook. Do not hestitate to ask or use the search engine. I'm positive everything you want to know has been discussed before and will freely be discussed again.

There are members who have posted thousands and thousands of responses. There are members here that post based upon their own experiences and members who have acquired a tremendious wealth of knowledge about Oral Cancer.

The more you learn the better equipped you will be to help your dad deal with this ugly desease.

Hi Kendra,

It is hard, but never more so than in the beginning stage that you are at now. You are not alone. Everything is scarey and uncertain at this point but you are already recognizing your own need to survive this experience, which is a big plus. You cannot make decisions for him - like whether to smoke or seek/comply with treatments and it's good to deal with that right up front. Offer support, love, opinions, research information for him but don't lose yourself in this process. You have a life that you also need to continue to live or you won't be able to help anyone. We all make choices throughout our lives, some good and some bad, but we can only take responsibility for what we do and not another person.

These are big adjustments for both of you and you should be prepared to experience a range of emotions - anger, fear, denial, taking it out on everyone around us to name a few. If you go to the home page of this website you will find tons of information on this disease that may help you put things in perspective.

Pace yourself for a long haul as that is what fighting cancer is. It's still a disease that none of us ever want to hear we have even with all the progress that has been made in treatment options and improved survival rates. Please keep reminding yourself that people do survive, and that although life will not be the same for either of you, there is a new normal that we can learn to adjust to.

I think we've all done our share of crying and that probably will continue as time goes on. It tends to hit you at the weirdest possible moments when you don't expect it. The good news is that it DOES get better, and the human spirit is capable of incredible adaptation.

I see from your other posts that insurance and finishing the diagnostic work up is also an issue so I'm sure that is complicating things. Following up with social workers on programs in Virginia for uninsured patients, short term disability etc. will help you sort that all out. Again your Dad also needs to take responsiibility for some of this so you can return to college. Does he have any family or friends down there that can help? Is he eligible for state medical assistance?

In the end none of us have any guarantees about whether treatments will work but we have reasonable expectations and hope based on the experience of others. There are frustrating side effects and rehabilitation with all these treatments and your Dad will need to commit to whatever he picks as his new job. This is about survival and that's the first choice he has to make.

Please let us know how it's going and ask the rest of the family or his friends to also help so that this doesn't fall on you alone.

Regards JoAnne

Dear Kendra,

I'm sorry for the position that you're in with your Dad. It's hard and it's going to get harder for the forseeable future, but you have to hang in there and try your best to be strong. When cancer strikes, it doesn't only affect the patient, it also affects the caregivers and loved ones who support the patient. I have been my Aunt's cancer buddy for the last three and half years, and along the way, I've learned some very valuable lessons through my Aunt's experience with this disease and from the fine people on this board who you'll undoubtably be hearing from soon.

The most important thing is what Tim commented on above. Make sure, be pushy if you have to, that your Dad is treated at a facility that deals only with cancer. Regular hospitals just won't do it in this case. ALWAYS get a second opinion and a third if you're not happy and comfortable with the second doctor's opinions and plan of attack.
Really important, DO NOT ALLOW your Dad to make compromises planning his care or during his care. My Aunt's doctors made the awful mistake of cowering to her demands and she's suffering for it. Yes, there are choices to be made for base of the tongue cancer, traditionally it's either surgery followed by radiation -or- radiation with concurrent chemotherapy. People from this board will add their comments (I'm hoping) as to the succees of either of their choices in their particular case. My Aunt foolishly choose surgery WITHOUT radiation to follow. That mistake is costing her her life. NO COMPROMISES. He does have the right to choose one treatment plan over the other, but please do not allow to skip portions of that treatment plan.

My Aunt smoked before and after her surgery. The worse her prognosis got, the more she smoked.
The good folks here might correct me on this statistic, but I remember reading in this board's posts that continuing to smoke post treatment will increase a patient's risk of recurrence to 80%. I know that quitting smoking is a hard thing to do, but it's something he HAS to do to survive this in the long run.

And for you..... you must do what you're heart tells you to do. Instead of talking about what you should do, I'll talk about myself. I promised my Aunt, one of my favorite people in the world, that I would be there for her every step of the way. We talked for literally hundreds of hours throughout this ordeal. I found solice in prayer. I spent quiet time alone to regain my emotional strength and my composure.
I kept myself informed and up to date so I could contribute by answering her questions factually and intelligently. I was strong, compassionate and positive thinking when speaking to her or in her presence. I felt scared from time to time when alone, but I NEVER let her see that. What gave my Aunt courage (at times) was my promise to her to walk this journey with her "no matter what". It's been hard, damned damned hard but reassuring patients that they are not alone can make a big difference. This is a win-able battle but both you and your Dad have to be strong and cooperative.

ALL of these things MAKE A DIFFERENCE. The facility, the not bargaining with the doctors, the quitting smoking.
My Aunt thought she could out run this disease, out smart this disease.......and win. No one can.
This is serious business. My Aunt will be passing into the hands of our Lord soon. You are on square one of the game board right now. Read, research, ask the smart questions, get explanations, talk to patients, talk to doctors, find out--- then, make wisest choice
you can with your Father for his care. Don't waste time, don't wait. Every day, every week counts.

My prayers are with you as you begin this journey with your Dad. Be strong, you CAN do it! Everyone is here for you and at your disposal. If you need to talk privately, write me any time.

I would ask his doctors to have a conversation with him about his smoking. There are Rx strength nicotine replacement therapies like inhalers and nose sprays that will get him over the withdrawls. Truth is that those that continue to smoke during and after treatments have very poor long term outcomes. He has to come to terms with this since his survival may weigh on it. If he will not listen to you, hopefully his doctors will put it to him in a manner that is non negociable. They may even be unaware that he is still smoking. You should have a private conversation about this with the doctors.

I really want to thank you all for the responses thus far. When I read all of them last night, they touched me deeply. It's good knowing there are people out there that do care and do know what it's like. Thank you all again. I need strength and so does my father.

Some notes about our situation.. my father lives in VA by himself. His family is in Massachusetts. When we visited in Mass, he was given plenty of places to stay and plenty of help up there. But, he wanted to get the scan done in VA and see how bad things are before he made a drastic move up north. His family is more than willing to help up there. So, I took time off from school to get him through this process and to help him by providing research, answers, support and to maybe help him move back up North.

Our first appointment is Tuesday, November 13th. His bioposy has already been done and everything. His dentist discovered the cancer and another dentist did the bioposy. Now, thanks to help from Leslie B (she's around this board! :-) ), we have a place that would take him. I have also been in touch with the VA social services and what not.. they're weird about medicaid but none the less, the application process is beginning. Thank you for everyone providing help in that area as well.

I really do appreciate everyone's support and advice. Like I said above, I am new to all of this... so knowing there's people out there to help and provie support, helps. Thank you all so very much.

I also informed my father of this bulletin board and he really needs support.. so don't be surprised if he gets involved. I'm hoping he will. But, we shall soon see.

AS for the smoking...well... maybe the doctor can twist his arm and provide options to help him quit.

Thank you again everyone. My heart has been touched by the care you have shown.

Tuesday, Nov. 14th. Oops.

Kendra,

It sounds like you are moving in a positive direction now. Hang in there.

Kendra,
I wish your dad much success as he begins the treatment processes. I will mention to you though that stopping smoking soon did not become an issue with me as treatments progressed, particularly radiation therapy. I was a 30 plus year smoker and I have not touched nor had any desire to do so since my initial diagnosis and rad treatments beginning in October.