Please wish me luck!

I'm new and have gotten so much from what everyone has been saying. THANK YOU! It's fantastic to have a place where people with similar issues have posted their thoughts about this adventure we are on...

I have my first CT/PET scan in 2 1/2 hours... I'm trying to stay positive, but of course I'm concerned about what it will show. Just found put last Thursday morning that my biopsy came back with positive scc.. No one has mentioned a stage yet but he thought it was about the width of a quarter. . So, the games begin. That lovely news blew me away because I had convinced myself it was a bit tongue and nothing more... I was mad at myself for not having it checked sooner, because I noticed it back around Xmas, I think, and didn't think about it until it much, but it bothered me a bit when I moved my tongue in certain ways. I had a PAP scheduled with my GP so, I asked her to look and she said I should get to an oral surgeon and have a biopsy to make sure it's ok. As I mentioned ... It is not, so here we are...

Results of biopsy were followed by a scheduled appointment with my rheumatologist. I have RA or psoriatic arthritis and take Humira injected every 2 weeks... Well... No longer... Because now that I have cancer, that med can't be used... Drat. He replaced it with methotrexate... 6...2,5mg once a week, but that is on hold until I see other doctors.

Next came my Friday visit to an ENT. He examined me and did the tube down my nose and said the lesion on the side of my tongue near my molars appears to be caught early with no lymph involvement, but he wanted a CT/PET to be sure. So that's this morning... Followed by his other recommendation of a second opinion by a radiologist oncologist. That's this afternoon after the scan and I see the ENT again tomorrow. He thought that surgery would be my best option, but said of course he's biased because hes a surgeon. So we will see.

We live in Savannah, GA and I've been wondering about the Mayo Clinic in Jacksonville (about 2 1/2 hrs from here) as another option. Of course, the local doctor would be the most convenient, but I'm wondering with the arthritis, if the Mayo would have a better team approach...

So I'm off on this new adventure... With lots of turns and twists along the way... Thanks so much for your help and wisdom and support!!!


  • Laralyn
    Laralyn Member Posts: 532
    Hi, Suzyhok!
    I had my

    Hi, Suzyhok!

    I had my diagnosis PET a couple weeks ago, and I was nervous too. The test itself is easy. Waiting for results is the harder part, of course, but if you keep (mentally) busy, the time will pass.

    I'm praying you get good news but don't despair whatever the news. Staging for head and neck cancer is done the same way as other cancers but it means something totally different. Even if it's in a couple lymph nodes, it's normal for H&N because the nodes are so connected in the head region. I would bet good money the majority of the survivors on this board (and everywhere else, since this is a very treatable disease) had Stage IVa or higher. That's what I have. :-)

    One thing I kept telling myself as I went through the PET was: this is important for mapping where they need to treat. And that's 100% true! It's not about revealing some dark secret hiding in your body. It's shining a light on the places where doctors can help you, and it can help them catch it all the first time.

    Even if you don't go to the Mayo Clinic for treatment, consider going there for your second opinion. See if they recommend a different treatment plan. Ask how the doctor who will be treating you there compares to your local doctor (and do the research yourself, too). Ask how their equipment is better or different. Most important, ask if they know a H&N cancer specialist in your city. It's all valuable information, and will help you be an informed participant. Be sure to tell your current doctor that you want a second opinion and you're thinking Mayo Clinic. If he's the right doctor for you, he will be very open to a second opinion and may recommend a specific doctor or center. For example, my doctor encouraged the second opinion and steered me away from where I was going (UCSF) to a center where the head of radiation oncology is renowned for H&N cancer (Stanford). I got my second opinion, and she recommended the same treatment, said my doctor is great (Dr. Deepak Khuntia), and said their equipment was comparable. So I stayed closer to home but had the peace of mind that I wasn't compromising my outcome.

    I'll be thinking of you! :-)
  • stayingpositive
    stayingpositive Member Posts: 89
    Well Suzy looks like your off to a fast start, like Laralyn says the ct/pet scan is so the doctors can find the things they can help you with. Hope yours is a good result, and by all means if you feel you need a second opinion get one, your ENT sounds honest, mine didn't even ask me to see the oncologist first, mainly because his needle biopsy came back negative, but with my history of skin cancer removals he should have at least considered it. I would definatly talk to an onco first before the surgery, keep us posted, there will be folks comin' with lots of good info, hang in there! and...

    Stay Positive

  • Matt29
    Matt29 Member Posts: 62
    Second opnion
    HI I agree get the second opnion i was going to go to my local hospital and then decided on a second opnion i live in Eustis fl so i went to my local hospital first then went to MD Anderson for my second opinion i know Mayo clinic they are a great hospital in Jacksonville compare the equipment especially the way they deliver the radiation this is something big MD offers helo tomotherapy which is pin pointed to specific location where as the one at my local hospital is standard radiation so with MD less tissue damage they have one of two in the world i'm assuming the other one is in Houston and like everybody says keep your spirits up this is a very treatable beatable cancer i know that's easy to say but i'm 29 and got the news its hard at times i have a wife and a 5 month old.We are all here to help you through this we are in the same boat.
  • phrannie51
    phrannie51 Member Posts: 4,716
    Yes...a second opinion from a big Cancer Center
    is a good thing. They may tell you that where you are being treated is as good they can do...and the fact that it's only 2 1/2 hours away means you don't have to crawl on a plane and travel a thousand miles for that opinion (I live in the sticks, so a plane was my only way of getting anywhere).

    You can also do a switch and opt for surgery at the Mayo, and depending on what they have for radiation in Savannah, do the actual chemo and rads at home if their protocols are the same of similar.

    Wishing you luck, sending positive thoughts and a bucket load of prayers.

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Welcome Suzy...
    Great people here an awesome particpation...will be looking forward for more posts from you in the upcoming days.