3 1/2 years ago I was - after a year of trying to find out why my tongue was so painful - diagnosed with oral cancer. In April 2004 I had a partial glossectomy and 32 radiation treatments. At the time, they said that one lymph node showed a microscopic involvement therefore the radiation was required. I worked hard at putting aside all my anger at the incompetence I encountered while trying to find out what was wrong, and after 9 months I went back to work. In time, I even quit sticking my fingers in my mouth every twenty minutes. Shortly after my treatment, I told myself that I had "worked through" all the mortality issues surrounding cancer and that I was prepared to face whatever came my way. Now I realize how much I was deluding myself!!!!

This spring I started getting severe tongue pain on the other side of my mouth. I again started the ping pong doctor visits and eventually had a biopsy at the end of June which came back as a non cancerous irritation. This was followed by more dentists visits, visits with radiation oncology and my g.p. There HAD to be a reason and treatment for my tongue pain. This path led me back to my surgeon who, in August, said the area had changed significantly - time for a serious indepth biopsy under general anesthesia. This was done on Thursday and I get the results on Sept 24th. Surgeon said MRI was clear so if it is there it is "likely" on the surface, but the area did look - in his words - suspicious.

No, it is not easier the 2nd time around. I still struggle with the why me question. Yes, I used to smoke. Millions of people smoke however and do not get this. And yes, I used to drink but only socially and have, since my surgery 3 years ago become basically an abstainer. My alcohol intake is limited to maybe 10 drinks / beer a YEAR.

And no, turns out i didn't work through the mortality issues the first time. That gut wrenching fear. I read all of your posts and what you have been through and I don't know whether to post in the special WHINERS section, or the Survivors section or the Anger and Fear section. I admire so many of you. I lurk and read what you have been through, and I truly AM grateful for the last 3 1/2 years. I am grateful for so many things - our healthcare system which makes it possible for me to get full care at no cost, grateful for my supportive family and friends, grateful to have gotten to be this age with two wonderful kids. So many people have not been as fortunate.

So why the panic at a recurrance. Why am I having a hard time getting my head around the idea that cancer may be - for alot of us - a chronic disease. I feel lost.

I also feel embarassed at even telling family or friends what is going on. They went above and beyond the first time. How much can one tax them? And if it comes back negative, how seriously will people take me if the next time I go through this same panic scenario.

Help me get my head back on straight!!

Donna

Donna....You could be any one of us. I feel like my words will be exactly like yours if I have a recurrence. I hope you know that here, at least, you don't have to be a hero......You don't have to apologize for expressing your deepest fears. Yes, there are many here who are very brave indeed, but that doesn't mean that they don't have the same fears. There comes a point where you do what you have to do, but it doesn't mean that you aren't terrified. And no, you don't have to go to the Whiner's Corner. It's not whining. It's sharing. And it's being honest, both with yourself and with us.

Keep talking!

Donna,
Hang in there. I've seen alot of people here go through something similar and it comes back negative.
I'd say for the friends and family, you should do what's best for YOU. If it helps to tell them, then do it, that's what family and friends are for. But you're also not under any obligation to tell people what's going on until you are ready to. I think it's normal to feel totally scared and lost, and Colleen is right, you are sharing and being honest.
Melissa

Donna,

Your words describe how I am feeling right now as well - all of your points hit home. I have a node that the needle biopsy came back atypical and my doctor wants to do a 2nd neck dissection. That is scheduled for this Tuesday and I was getting my head wrapped around that pretty good. I got a phone call yesterday from my nurse telling me that my doctor was being wheeled into the OR due to a detached retina and no one knows if he'll ever operate again; definitely not this Tuesday. I am devastated - I have a great doctor-paient relationship with this doctor. He's 4 years older than me, we have kids the same age, my husband and I can talk to him more as a friend than a doctor. I feel so bad for him as he is a very talented and compassionate doctor. Anyway, they have given me a couple of opinions on another surgeon and I have a huge decision to make. I don't know how to pick a new doctor that doesn't know me or hasn't been there with me the past 3 1/2 years.

All that to say, I think your feelings are totally justified because I feel the same way and we both can't be wrong! If you are in the WHINERS club, then so am I and I must be President! Take care, keep sharing and we'll work through this.

Pam

Well, we could call it "Whiners United"!, Most of us have something that is not right in our lives, it's called the human condition, I think.
Donna, if it were me, I would be raising hell to get those results long before the 24th, I mean like camping on someone's doorstep! As for family and friends, they will be ready to go that extra mile whenever- not just once- should you need them. AS for those "mortality issues", well some of us never get them worked out-we dream of leisure retirement years with our significant others, we want to live to see grandkids grown, we want to finish all the dreams and projects. It rarely happens. What is most important is the day to day of our lives- are we doing that as well as we can? Hope to hear good news from you soon.
Amy in the Ozarks
Pam, you are gonna get through this.

Pam, is it possible for you to ask your "old" doctor for his opinion on who you should see now that he won't be able to treat you? I'm sure he knows the other docs, and since you trust him so much his opinion would probably work well for you.
Minnie

I can relate, actually I think we all can. I think and have thought that alot of the times we are diagnosed at late stages is because of all the "ping-pong" appts we go to. This Dr says one thing and that Dr says another! I know for me, I came to Johns Hopkins from the Mayo Clinic! I mean come on! Mayo is outstanding but still could not diagnosis me correctly. And Mayo is one of the top hospitals in the world. I am currently at Johns Hopkins waiting to see if the cancer has now spread and if the tumor is even operable! How frusturating! I say to myself just breathe, just breathe....

Hi everyone,

We met this afternoon with an associate of my doctor - remember he's out with a detached retina - anyway, my doc gave me 2 options on referrels and we are choosing his associate. He was personable and I liked him so the surgery is still a go for tomorrow afternoon. They will take a tissue sample and send down for biopsy, then know whether to proceed with a 2nd neck dissection. He did say he would be limited on what he could safely get to and remove - won't know till he gets in there and there's still a chance it's a benign neuroma (sp?) but if it's not, then we can look at chemo and drug therapy, but I cannot have any more radiation. I know it's not cancer, till the pathology says it is, but I have to admit, I'm scared tonight - as we all are. I'll post results when I get home

Pam

Pam, I am holding my breath as long as you ae. Amy

Donna,

Sign me up, I as well qualify for the "Whiners Club."

My post in the General Board, "Friday sucked...", I believe puts me there. I got good news. I'm so sorry to hear about your news. I have added you to my prayers and thoughts.

The people who love you will be there as many times as you need them. Not letting them know will only stress you out and cause worries that you don't need.

Just my opinion.

I'm here for you and praying for you.

Love and hugs.

Mike