Thanks, Connie.
We have practically the same dx and treatment so far. How long ago was your surgery? May I ask your age?
Kerri

Thanks so much. I'm a ball of anxiety.

Kerri,

I had my surgery 2 years ago April. I've had one CT Scan last year it said some activity but not Cancer in the jaw area. I've had checkups every 4 months. I've been wondering what some activity means, my surgeon didn't seem to be concerned about it who knows.

I know we have just about the same dx and treatment. Mine started in Dec and by the time said and done I had surgery in April.

After reading your post it set me back thinking what if's. My CT Scan is Sept 22nd sitting on pins and needles thinking about it. I'm 64.

I hope all goes well for you. If I were you I'd have the biopsy real soon, not wait.

Take care I hope all goes well for you. Keep us posted.

Connie

Thanks for sharing, Connie. I guess it's going to be a long five years from inital diagnosis to cure. Supposedly, with my initial surgery and staging, I have an 80%+ cure rate. So, I am wondering if it is just my luck to have something "new" on my CT just 4 months post-op. I know what it's like sitting on pins and needles. I'm sorry you are going through that right now. I'm also sorry if my posts have dug up some deep-seated anxiety. Just remember that each year your scans are clear, the chances of it recurring are less and less. When I was biopsied, I knew it what it was deep down. I am a health professional and sometimes that's worse when you know too much. So, pending my biopsy and for the time thereafter, I went to the OCF website and it terrified me. It was so overwhelming and I felt like I already had a death sentence. When I finally got my results, my worst fears were confirmed. The oral surgeon said it could be a list of 20 things and cancer was on the bottom of the list, yet it was cancer. It was only when I saw my surgeon the very next day that I felt somewhat better when he put his hand on my shoulder and said "This is very treatable.". After all was done with my surgery/hospitalization, I met with my medical oncologist again. She said there's a small chance it could come back, but if it does, it's very treatable. She did not recommend rad/chemo since my nodes were clear.

So, here I am...feels like a bad dream. I wish I could wake up.

I wish for you to have clean scans coming forth. Let's keep each other posted of the plans/results.

Take good care,
Kerri

Hi there Kerri.

I am glad they weren't worried about the new "possible" spot. Glad you have a great medical team and they give you hope by not saying things that aren't necessary,

My docs told me I only have a 50% chance of living to see 30 when I was diagnosed at 25. I try not to think about that now that I am 27 and a year and a half past diagnosis without a "clear" scan yet.

Anxiety is the worst. I have told my doc I don't want a PET every 3 months, but that I will do them once or twice a year...cuz they always make me so anxious because of all the activity that still shows up. Even if it was on my past one and they biopsied it before and it was just inflamed tissue, it still makes me anxious...I just want a clear one already!

I am glad you had your healthy baby boy! Hopefully someday I get to experience being a mother. Docs say I shouldn't try until I have had 5 years of clear scans, which I haven't had one yet, so it's getting more and more discouraging. Some have said I should never attempt having children because the increased estrogen during pregnancy could turn any micro cancer cells into full blown again, I don't like hearing this, but it might end up being. I know I could maybe adopt someday and I do have time, but hopefully the one adoption agent I talked to was just having a bad day and telling me lies when she said I couldn't adopt because of my cancer.

Anyways...not trying to steal the light from you....Not always great to say, but it's nice to run into younger people on here, especially when they were able to have a child...gives me some hope.

Hope you continue to have no worries and no recurrence!

You said you are a health professional...what do you do?

I was in LPN school when I got diagnosed and had to withdraw and now am starting all over again, hopefully someday i will finally be done with school and cancer doesn't ruin it for me again!

Hey there Kerri. I'm in agreement with a few people here - I wouldn't wait.. I'd push for the biopsy ASAP. Not because I think it could be cancer - it could very well be nothing - infection? Inflammation? However for your peace of mind.

I was 3.5 weeks post op when I had my follow up ct (baseline scan for radiation) I knew at that point radiation was on the table for me - as I'd had perineural involvement and minor ece in my one positive node - my dr. Said in my opinion you're cured - this is insurance - so i agreed - I sounded very much like you when I was diagnosed.. I wanted it out immediately! Anyway I started my rads on a Friday had my weekly appointment scheduled on the Monday to see my rads guy. Asked him about my scan results he said if there is anything to note I would have (that didn't sit well with me - I know he sees a lot of patients but my belief is when you walk into that room you need to know exactly what's up with your patient. He sent a fellow to go get my results - freaked me out a bit with my chest CT (it was nothing which I came to realize later - but he's very bad with people - unlike my surgeon) once I relax about the chest ct somewhat- I asked about the head and neck - he said - it's just a baseline scan - again that didn't sit well with me but I let it go because I was still traumatized by the earlier chest ct. Went home called my nurse practitioner - asked her some questions. She said he wanted to see me the next day. Well when I got there he told me he was changing my radiation plan! I had already started, they would put the new plan in place on the Friday. Apparently it is quite rare for them to do this. However I had a 3 mm node highlight on my opposite side. I was told it was likely not cancer based on placement (and the fact that i had been in mexico 3 days before the scan meant i could possibly have picked up something ) but they knew i wanted this treated aggressively, I didn't want it biopsied - I wanted it gone so I agreed to the change and am glad I did, I'll never know if it was cancer or not. It's gone now. That's all I care about. The Drs. However did tell me that the small nodes don't excite them... ???? Okay well they sure as heck excite me!

Please try not to worry... And good luck.

Kerri,

Keep you chin up I know it's easier said than done.

One thing sticks out my surgeon said, my tumor was growing outward and not inward. He has a very soft voice I barely heard him. I don't know if that makes a difference. Coming out of surgery a nurse was standing next to me she said, the inside of your cheeks and mouth were a mess, that I heard loud and clear. My surgeon never mentioned it, what did I know back then about Oral cancer "0". I do have scar tissue in my tongue, do you? It feels like a little lump and has been there since surgery.

I also have scar tissue around my incision do you? I massage the area to try and break it up, not sure if it breaks up or not, that's just me and it feels a lot better after a massage.

I know how you feel thinking about it all the time. There is never a day that goes by I think it's back for some strange reason or another.

You jumped on this right away and I'm sure you have great Dr.'s seeing you're in the medical field, you are in the know.

I hope everything turns out for the good for you and your family.

Take care and keep us posted.

Connie

Hi, Everyone.
I had my lymph node excised yesterday and the preliminary path report from the frozen section is that it is benign! Lets hope the final result is the same. I'll keep you all posted.
Thanks for all of the love & support.

xo,
Kerri

Kerri,

Excellent news!!!!! Keeping my fingers crossed for you on the final result. Keep us posted.

Take care,
Connie

Hi, Beth.
I'm sorry it's taken me so long to reply to your post. I had to stay off the forum for a while because as much support as I was getting, I found myself feeling more anxious and depressed about my prognosis.

I'm also so sorry that someone so young has to go through this. I didn't have any of the risk factors, but I did have to go through IVF to have my second child, I got pregnant right away, and then BAM...I had cancer. My surgeon told me that he has had a handful of pregnant women come to him for the very same diagnosis and that they have done well overall. So, even though there is such a small cohort of patients that were diagnosed while pregnant, I wouldn't be surprised if someday they find out that tongue cancer can be fueled by estrogen, just like some breast cancers. When I spoke to my OB just after I delivered my son, I asked her what she thought about birth control pills and HRT in the future for me. I said I wasn't comfortable taking any hormonal treatments because right now there isn't enough scientific evidence that there is a correlation, and she agreed. We just don't know now, but we may know in the future.

Did you have any risk factors for this disease? How did you find out you had it? If someone said to me a year ago "I have tongue cancer", I wouldn't have thought it was potentially so deadly. It's so scary how deadly it is if now caught early and it spreads so quickly. I still can't believe this is my life. You must feel the same way sometimes. I really hope that you start getting some clear scans and that the docs are wrong about your prognosis. Second opinions are also a good idea.

As far as wanting to have children, it's a tough subject. Are you in a committed relationship with a person who wants to have children with you? If that's the case, can he/she accept the fact/responsibility of possibly being a single parent? There are so many factors to consider aside from whether or not you should try for your own biological child or to adopt. I wish I had some answers for you. I think talking to a counselor to help sort out your feelings and goals would be a good start. It's so hard and I'm so sorry. For now, if you're feeling well enough, perhaps you could volunteer to work with children in a nearby children's hospital, or at a school, church, YMCA, etc. Sometimes working with children can at least give you that "fix" and feeling of joy that you may be looking for. I know it's not the same at all, but it might give you some fufillment.

I am a physical therapist and work in an outpatient/orthopaedic setting. I haven't worked since my diagnosis and surgery in March. My speech and strength/endurance aren't where they need to be in order to return to work. Hopefully, you can re-enroll in LPN school and focus on that.

Thank you so much for reaching out to me. You seem like a genuinely friendly person and I hope your next scan is clean. I hope that for all of us, no matter how old we are, the thought of dying is terrifying...especially after enduring such awful treatment. I'm going to be doing an Oral Cancer Awareness walk in a few weeks. It seems like a small group, but some of my friends are going to join me. I am grateful for that.

I hope to chat soon and that you can get some relief and peace in your head...that's what I need most in order to function.

xoxo,
Kerri