Hi There,

I'm probably posting too soon since I have not had an official diagnosis yet. I had a suspicious spot on the side of my tongue and it was removed and sent out for biopsy yesterday. The oral surgeon also took out a wide margin so if it comes back positive as cancer he will have excised the whole thing. I won't get the results back for a week and I think this is going to be the longest week of my life.

I'm hoping that is will be nothing but the surgeon really didn't give me any other ideas of what it might be and only talked cancer. Of course at the end he told me to not loose any sleep over it. How do you do that exactly?

I'm surprised with the amount of pain from the surgery, I didn't think it would hurt this much.

Thanks for listening!

Dawn

Hi Dawn and good luck on your biopsy!!

I'm sure hoping it's nothing, too, Dawn. I sleep too good to teach anyone else. All I can say is try to relax and keep busy.

Hope its nothing! My experience was similar, except for the wider margin during biopsy. If it does turn out to be positive, you should probably get a second opinion from an ENT to make sure they took enough. I was told the protocol is 1 cm of clean tissue on all sides. My biopsy did get it all with clean margins, but I still had to go in and have a much larger area removed under a general, while they did frozen section pathology during surgery to confirm it was all clear. And on top of that, the tissue was sent out for post-surgical pathology to confirm it.

What part of WA are you in? I'm in King County on the Eastside.

Dawn, welcome to OCF! Hopefully you will not need our group but we are here and ready to help you if you do.

Not worrying so much is a learned skill. Practice by allowing yourself only a limited amount of time like 5 minutes to ponder the situation and then force yourself to "change the channel" and go do something positive or productive. Staying super busy helps as does doing activities that require lots of concentration like an interesting book or learning something new. With practice you can get a handle on constantly thinking "what if". Remind yourself as often as necessary... worrying wont change anything, not a test result or ever bring about anything positive.

Hang in there! We will be here to help get you thru this.

Thank you for all of the responses. I'm trying to keep myself busy doing other things. It will help next week when I go back to work.

KitKat, I did have to go under general anesthesia for my excision. I think he was wanting to go aggressive at first. I'm hoping that worked. My next question is what do I do if it does come back cancer? Do I demand a scan or weight for their suggestions? I'm not sure what the standard protocol is.

I'm in Silverdale, Washington, which is Kitsap County, the other side of the sound from you.

Hi Dawn

If it comes back with cancer you won't have to demand anything. A biopsy is the comprehensive way to diagnose these cancers, and the surgeon will know the next step to take. Best to let the medical investigation run its course. I know it will be a long week, take some solace knowing you are on the right course to diagnose and treat the problem.

[quote=DawnH]
KitKat, I did have to go under general anesthesia for my excision. I think he was wanting to go aggressive at first. I'm hoping that worked. My next question is what do I do if it does come back cancer? Do I demand a scan or weight for their suggestions? I'm not sure what the standard protocol is.[/quote]

Oh, I see. That's a really interesting approach! Do you know how large your initial lesion was? Mine was only 3 mm, but had some mild dysplasia in the tissue surrounding it, but the biopsy itself still had clean margins. The actual surgery took, as I mentioned, 1cm more tissue on all sides, all of which was clean. Additionally, prior to the surgery, I had a full set of head, neck and chest CT scans, which were examined by the radiologist and my surgeon to see if there was any visible evidence that the cancer had spread to any nodes.

Due to the very small size of my lesion, and visual indication that it had not spread (according to the scans), it was determined that I would not have a neck dissection, because the research shows that it's unlikely that it had started to spread at that stage. So instead, I will have follow-up exams by my ENT every 2 months for a couple of years, then every 3 months out to 5 years after that. After 5 years, I'm not sure of the plan yet - either once per year or every 6 months, I assume. Of course this is provided I don't have any further problems prior to that.

Last week, I also went to Seattle Cancer Care Alliance for a consultation with one of their specialists, who concurred with my doctor's plan. The only difference is that he's recommending follow-up CT scans at 6 months and a year to make sure things still look the same, which my own doctor had not settled on yet for certain (we were still discussing).

So, depending on things, this would be the best case scenario for you. But depending on your pathology, you may have additional work to be done at this time. It is possible that they will also want to do a neck dissection to see if there is any node involvement. And depending on what they find, there could also be radiation treatment, etc. But of course that's for the doctors to determine based on the results of all further testing. I will keep my fingers crossed that instead of this route, your situation is just like my own. Or better yet, hat there is absolutely no evidence of disease in the tissue that was removed!

My husband lived in Silverdale when we met over 20 years ago, where he was a Sonar Tech on the USS Ohio.