Hello my name is Cindy. I am the wife of Graywolf who joined this forum the other day. We were told 3 wks ago that he has mouth cancer. He will be going to get a MRI in the morning and A biospy on the 26th. He was told that it is in the bottom of his mouth and in two lymph nodes and possibly in his jaw. We have so many questions about what he will be going though . I can not figure out why they are doing the MRI before they do the biospy. How does the Dr know it is cancer just by looking at it? I really think I am in denial that my husband has cancer. My sister is a breast cancer survior and I thank the Lord for that everyday. I have tried to hand over all my worries about my husband to the lord but I need to talk out my fears and questions here with people like everyone here that has gone though what my husband and I are going to go though. One of the lymph nodes have gotten bigger and he is saying he feels like he has the flu. I want him to see the Dr about this and talk to her. I have always heard that once you find out you have cancer it seems to progress even faster. Is this true? To me the Dr's are not moveing fast enough, but I also know deep down that they are doing what all needs to be done before they acually take the cancer out. I"m just scared. Thank you for listening to me. Cindy E

First of all welcome to the family. Many here have been though your exact situation as a caregiver, and will be posting to your questions as they come up...and there will be many as you go through this process. Try not to lose perspective on the fact that this cancer is very survivable with the proper treatment. You are about to begin a fight, but it is a fight, that with the proper help, you can win. This is a safe place to question, vent, yell, and find unconditional support. It is populated by many caring people.

So, to some of your questions. Cancer moves at it's own speed. Whether you know about it or not, does not alter it's biological imperative to reproduce and grow. It will likely neither speed up nor slow down because you know or do not know about it. It would not be unlikely for your husband to feel weak and develop flu like symptoms as a by-product of this disease. As with all symptoms that are new, your doctor should be informed of them. Make notes about what your husband is feeling, and when it begins or ends. It is important that in the craziness of all that you will be going through, to keep good records of things, and that includes making notes at the doctors appointments. It is very easy to misinterpret, or not hear completely what is being said in the shock of the moment. A bound notepad diary is a good companion to track everything, and lets you keep it all in one place. Doctor

Hi Cindy,
The scariest times for me were in the early phase, before treatment began. The uncertainty and fear were hard to deal with. I turned it over to the Lord also and he put doctors and counselors into my life to help me get through it. Before I started treatment I had the following tests: Biopsy, PET scan, MRI, CT, audiology (hearing) test, kidney function testing and numerous other blood workups. It took over a month for all of the workups and they gave me high priority based on the disease. It was over a month before treatment started. I had a stage III, SCC, right tonsil. You're lucky you found us early -many don't discover the site until they're done with treatment. I too, had fear that the cancer would move faster now that it was discovered but remember that FEAR means "False Evidence Appearing Real". If the doctors thought that were true they would be moving faster. Breath deep, relax, take it one day at a time. I was a caregiver for my Dad who had Lymphoma and now I'm the patient so now I'm wearing both hats. Keep coming back -we're here to help.

Cindy, I totally agree with Brian and Gary that you are very lucky to have found this forum so early to seek help from.I was in despair when the doctor broke me the news on 27/9/01 but the only information I could get was through reading a lot of books . The waiting period was barely tolerable but there were tests to keep you busy. Like Gary, I had ultrasound with biopsy ,MRI , CT scan and chest X-ray for diagnosis.There were a series of medical appointments like going to the dentist to have teeth checked,pulled (if necessary) and cleaned, moulding a mask for radiation, blood tests and kidney test for chemo.
I also pushed my oncologist for early treatment but since there were a lot of patients queuing up and the preparation did really take some time, I had my first treatment on 1/11/01. In fact before I started my treatment, I was still working as usual but had to get my sick leave once treatment started.On the day when I received the bad news, I could not sleep for a single second and had to rely on sleeping pills for almost a year. I don't know if it is true or not but my doctors told me that head and neck cancers are more treatable. Even though I am of a very advanced stage, they never gave me up and thank GOD, the ultrasound scanning tests I had last week showed that I am cancer free. Hope my story will give you and your husband some idea of what you may expect. Take care,

Karen stage 4 tonsil cancer diagnosed in 9/01.

Hi Everyone:

First of all, to Karen-I have been following your story and am thrilled to hear your follow-up scans are clear. Dave is going for his CT in a few weeks and I am scared because I don't do lack of control well but your news is helping today.

To Cindy-welcome and try hard to breathe. As you can see from my message above, fear is real and very overpowering but in can also be a mobilizing force. My fiance, Dave, was diagnosed with tonsil cancer in 9/02 and we are just now emerging from the treatment blur that has been the last several months. Being shocked and overwhelmed is part of the process at the beginning and wanting to be in denial is protective when you feel you and someone you love is suddenly threatened. I am with Brian and the rest of the gang-carry a notebook, ask for repetition, learn to say you didn't get something and ask again(as often as you need to until it makes sense), get as many opinions as you need to feel comfortable with your choices,and remember to "drive your own bus". The folks you will meet will have medical, surgical, and radiation skill, but you and and your husband need to feel most in control of the process and outcome.

The forum here was pivotal for me as a support during Dave's acute treatment phase. You are in the company of very compassionate people who have walked in your shoes.

In answer to one of your technical questions, some oral cancers have a fairly characteristic appearance which raises the index of suspicion for practitioners on exam. A biopsy is the only confirmative diagnostic tool but is usually taken in conjunction with appearance of the lesion(s) and the presence of other risk factors and/or lymph node involvement.

Take it one step at a time...

Best,

Kim

Cindy, Welcome to the Forum. I know how you feel. My husband was diagnosed with squamous cell carcinoma at the base of the tongue (stage III/IV) back in August 2002. Like you, I was filled with anxiety, fear, anger and tons of questions. My husband has completed his treatments - the last being a modified radical neck dissection on 2/6/03. There is so much to absorb when confronting an illness like this - and to be honest, it IS a very tough battle - and the treatments your husband will be going through can be rough with the side effects, but as Brian stated....this IS winnable. As you have gathered from the many posts here - there are survivors of all kinds of different oral cancers and many are still doing well after years of completing their treatments. So don't give up hope! I think you will find this Forum to be filled with many helpful and caring people. We look to each other for help and moral support - and we caregivers certainly need that too. Please let us know how your husband is doing and my best wishes to you both for. success in this journey.

KCDC.... So glad to see you back after your sabatical from the boards. I'm glad to hear that things continue to improve with Dave. Dave is a living example of OCF's mascot "Survivor" 's quote!!
[img]http://www.oralcancerfoundation.org/board_images/tshirt_example.jpg[/img] T-shirt link

Dear Cindy, Like all the others who answered your posting, I would like to welcome you. I also want to tell you that many of us have survived (as caregivers and patients). My husband was diagnosed with tonsil cancer in June of this year, he also had lymph node involvement.
At first I couldn't even think straight. And then we got caught up in the every day issues involved in treatment and some how just did it. I look back now and wonder how I did it. I continued working the entire time. My husband had chemo and radiation which lasted until the beginning of Sept and then he had a modified radical neck disectomy in October. He has been in remission ever since and feeling better and stronger every day. We are going on a ten camping trip to San Diego in May . Just keep your eye on the light of the tunnel. This board has been great. Every question and concern I have had has been answered, sometime I didn't even have to ask the question because some one else did. Good luck LM

Hi Cindy & Graywolf, having just gone through diagnosis, fact finding then treatment I can appreciate the place you guys are in - overwhelming & confusing are words that spring to mind. You are at the very least a partner with your docs in the process(or as Kim my partner likes to say - "You have to drive your own bus sometimes." I agree with Brian's sage advice regarding diagnosis and that it does take time which can seem for ever to get test results or information back. You are well within bounds to ask your docs about approx. dates and schedules of when things are expected to happen. If I can answer any of your questions regarding oral cancer and give my 10 cents let me know - if not I'm sure there are plenty of others with like experiences to yours on the boards willing to do so. Take care, good luck and stay in touch.
Dave