Hi-
I wrote on Friday stressed about my biopsy. Well, it was confirmed that it is cancer again on the left front of tongue. First time was on right. Anyway I should get my MRI and pet done this week and then I'll go to ucsf or Stanford next week for the discussion of next steps.
My ENT is hopeful based on what he's seen. I just can't believe it. Ugh. I am stressed and feeling a little lost.
Ugh

Sorry for the news, and wished it was better. UCSF and Sanford are two good places to go to. Being in the front tongue is better, in terms for access, and hope whatever treatments are in store it's minimal, and a good sign your doctor is hopeful, and there always is no matter what. Good luck next week, and things will ultimately fall into place.

I'm sorry you are going through this again Lola. If its not bad enough the first time around. All the best for next week.

Lola, I am sorry to hear this. You are lucky that you have options for treating this. Get the scans done and you will then know what you are dealing with. Get yourself to a CCC and get a treatment plan from the tumour board. Then you can move forward and deal with this. I know the waiting is hard. Keep yourself busy and gather your support group around you.
Take care,
Tammy

i am so sorry that you are going through this again. Especially after having been clear for so long... ;o( the good news is treatments are always changing. So hopefully this road won't be so hard to travel and hopefully they'll have something else in mind that will help.
I always wonder if it is something we are eating, some kind of imbalance in our body, some dental filler they are using or exposure to something that causes this kind of thing to recur. I changed my diet big time after my diagnosis and treatment. I was a veg head before but wasn't the healthiest eater, and I now take vitamin d, b12 and circumen. I know the area where I had my tumor had been a problem area for some time. And two caps to my molars in that area which caused a major increase in pain.
I guess we'll never know so we do what we can and hope for the best. I am not sure if you smoke. I am assuming not... but I never smoked a day in my life, don't drink, and stay away from second hand smoke, so I have no idea.
Best of luck... and hugs. this is a great support group here.
The good news - if there is such a thing that includes the word CA is that there are a few here that have been through the same scenario. Pandora had a second primary tumor 3 years after her first and she is doing really well.

Lola, Im very sorry you are now part of the recurrence club!!! That really stinks!!! Ive been there and know how devastated you must feel about the cancer returning. Keep your chin up, there are plenty of us 2 and 3 timers still around. Most important with recurrences is getting the very best medical care at a top notch facility. That will give you the best chance for winning this round of OC. Glad to hear you are going for a second opinion.

Best wishes!!!

Thank you everyone for the support and kind words. They mean the world to me. Only this forum truly understands. I am so happy to hear that having a second recurrence (or even 3rd) is not a death sentance anymore.

Cheryl- I found your comments about the molars very interesting as well. The two areas I had the tumors, were areas where my molar kept scraping against my tongue (I was not lucky to had braces before the "C"). The first time was on my right tongue and the second tumor is exactly on the opposite side where I chew all the time. Just so odd.

I get my PET and my MRI on Friday. Anyone know if it makes a difference if the recurrence happens 7 years later vs. 3 or 4 years after 1st time of cancer?

I have so much running through my head. But I know that until it is staged, I can't do anything but wait. I am praying that it hasn't spread.

Lola, would this be classed as a new cancer, being you are 7 years out?
I'm also hoping that you have no spread. Thinking of you,
Tammy

Tammy, you know, I'm not sure if considered new or not. I did not even think about that. I will ask though. Good question. I'm assuming the MRI and PET will tell some of the story.
Thank you for the thoughts.

I am five years out from my second cancer. I was told that if I had a third cancer it would be considered new given the time between. This is not a trivial thing as I am led to believe that they would feel justified in bringing out all their weapons for a 'new' cancer. You will get through this, and we are here for you.

Hugs
Donna

Lola,
Many thoughts and prayers headed your way for strength, insight and peace tomorrow. Been there, done that and the waiting for test results is always the hardest. Please keep us posted. Love, Kris

Lola... I didn't have braces one of our other members had chronic irritation from braces. I have been concerned with the side I chew on as well. I had two molars there that were irritating my tongue so I had them filed down a bit and that has solved the problem. if I'm a little irritated there (crackers and such and chewing hard stuff can cause this - also spicy acidic foods as you may know) anyway when I'm a little irritated there is switch to soft non irritating foods for a few days until its gone.

This is considered a new primary for you - best of luck with everything thankfully they've caught it early hugs!

Dear Lola,

I am crushed to hear of your recurrence. It's frustrating to be so young, with no known risk factors, getting 7 years out, and then the rug gets pulled out from under you.

With my first battle with the beast, I was lucky that I had no nodal spread and didn't need rads/chemo. I enjoyed a little over a year of being "cancer free" and then the get the bad news of having it in my tonsil. The doctor was not expecting cancer at all because it would have been considered to be a totally different type of cancer. It's still a mystery, but the tumour was HPV negative!

Well, I went through the hellish rads and chemo...had everything thrown at me. It sucked, but I'm grateful to say that my first post-treatment scan showed NED! So, there is plenty of hope for treatment of recurrences. You are still young, so they can treat you aggressively. It seems like what you have here is very treatable, with a high cure rate, even though you don't know the staging.

Best wishes on getting rolling with an effective battle plan so you can look forward to life again.

One question, and I apologize if it's too personal. With the loss of your mother, do the doctors think there is any genetic link, especially since you seem to have no risk factors? Did you mom have risk factors. I'm very sorry you lost her to this disease, especially at such a young age.

With great care,
Kerri

Kerri to me it sounds like a spread to your tonsil ( a recurrence ) normally if tonsil is your first primary it's likely HPV, but sometimes it's just a spread from the initial site. And thankfully you are NED!!!!!

Kerri-
Yes, my doctors believe there is a genetic link. He even said "angry genes" because I have this new tongue tumor. My mom had no risk factors like me. She died at 33 and I was first diagnosed at 33. I will say the main thing that her doctors did wrong when she first noticed it was dismiss it. She had a cold sore/canker sore that didn't heal and the doctors kept telling her it was just a sore and it will go away. By the time tests were confirmed, the cancer had spread too too much. Back then, doctors couldn't fathom that tongue cancer could occur to women who didn't smoke or chew.

Thank you for your thoughts Kerri.

They still have a difficult time believing that people with no precursors for this disease can get it. I know because as you may not by my signature. I am a healthy fool. Most of the drs. and people I met during the treatment and dx process couldn't believe it when I matched none of the standard demographics for this disease, and YET there are a bunch of us here.

Hugs... I responded to your other post...

PS... genetics? NOPE. Mom died of lung cancer but other than that (she was a 3 + pack a day smoker from the age of 14) I have NO history of cancer in my family.

Thanks for sharing, Lola. We're here for you!