Hi Everyone, it's been quite some time since I've been on this forum. In March of 2010, I was diagnosed with squamous cell carcinoma on the left side of my tongue. I had the tumor removed that March with clean margins (no chemo or rads necessary). My PET scans before and after surgery showed no signs of cancer anywhere else, thank goodness. Since then I have been blissfully cancer free. A few months ago, I noticed a small lump on the left side of my neck. This Monday I went to see my ENT specialist to show her my lump. It's very difficult to find unless I'm putting a good amount of pressure on my finger tips. After I put her finger on the exact spot of the nodule, she told me that I should have a CT scan to be safe. She assured me that she's not too concerned about it, but given my medical history, we need to be careful. I'm a bit of a worry wort, and all of this is drudging up the old scary feelings from 2010. Is it likely that my cancer could have come back in my neck? My Doctor checked my tongue and said that everything there looked great. If anyone has any information, I would surely appreciate it.
Ashley, yes once we have had a run in with this disease we always worry.
Unfortunately anything is possible with this disease too. You have done the right thing in getting your ENT to check it out. Hope your CT is scheduled soon and that it turns out to be nothing. Better to be safe. I know this is worrying, but worrying won't change what is.
Let us know how you get on.
Tammy
Hi Ashley - I do hope you get that CT soon, the waiting is so bothersome. I wish anyone of us could say its not likely, however as Tammy mentioned, anything is possible. Hopefully you can follow your doctor and try not to be too concerned, yet be careful and move forward and check everything out. I believe most of us can relate to the worry. I'm in a waiting and worrying situation, however will not be able to get a CT til Aug. Everyday the worry creeps in and I tell myself there is nothing I can do about it (of course other than staying positive, keeping healthy, etc.) then I move on. Even if I must do that several times a day.
Wishing you all good results and will watch here to see what is happening with you.
Hi, Ashley
Sorry you have this awful period of waiting although it's all to the good that your doctor is being careful. I have experienced a recurrence after 4 years but it was not on the neck but once again in my mouth on the left side.
Two or 3 years after surgery there was some concern about a small lump in my neck which turned out to be a join in the veins/arteries from my surgery. This time two somewhat suspicious nodes were seen in my CT scan and my surgeon was sure they'd be malignant but no, they were clear. They are such a normal route for the cancer to go to that doctors check them very carefully, I guess.
Hope you get good news and in the meantime do what I always find hard to do and keep it in proportion. Learning how to deal with worry is something worth setting our minds to, isn't it.
Best wishes:)
You are in a good place Ashley. Your Dr. Is being super vigilant and I am the Queen of "sometimes a lump is just a Lump ". I have had many scares and while I wish I had all those days of worry back, I know they were completely normal and natural. If things should not be what you wish, you have a lot of Plan B's available. That was always very important to me - to know there WAS a plan B. It is not cancer until they say it is. Try not to let this evil beast steal the waiting days. We are here for you - keep us up to date. Hugs.
Donna
Everyone agrees that better safe than sorry. Lets hope this gets resolved quickly and in your favor.
Thank you so much for all of your kind replies. I can't tell you how comforting it is for me to know that I can come to this forum to receive advice and well wishes. I love that everyone is so honest. When I explain my situation to friend, family, or co-workers, they all say, "I'm sure it's nothing. Don't worry about it." Not worrying is much easier said than done, but I will do my best. My CT Scan is scheduled for June 6th. I will let ya know how it goes. Again, thanks so much for the support!
Hi Ashley,
As hard as it admittedly is, you can master this. It's hard, but like anything worth doing, it can be mastered by anyone with the application of diligent effort.
So, here's my take on how to calm your mind when you face a situation with one or more possible outcomes that could include significant pain and nausea, and even death (as learning what the CT scan says.)
It may sound hopeless, but it's not. But it will require effort on your part. Since we're dealing with cancer here, look at this effort as striking a blow at cancer by taking control of the one thing no one can take from you (without taking your life at the same time,) that being your own mind.
So here's the nitty-gritty on how to get from here to there, from mental turmoil and anguish, to mental calm.
First, identify what you already know about your situation and the variables involved, including any possible outcomes you can identify and rank them from "best" to "worst'
Identify the outcome that would have the least negative impact upon you and your family.
List the things you can do to affect that, things that would be most likely to cause that outcome to happen. IF there are any things that you CAN do, start at once to do them and put your energy into doing those things.
If there are none, realize that there is nothing you can do, and put the matter out of your mind. This will take considerable effort, but here's the trick for that:
Watch your thoughts. When your mind starts to wander into forbidden territory (useless speculation about what unknown terrors you might encounter;) mentally speak to your mind as if it were a 5 year-old boy. Mentally issue yourself a stern rebuke and say "Stop that!" and mean it.
Then direct your mind to a completely different aspect of your life and keep it there.
Rinse and repeat as often as necessary
If you think that might make you feel silly; don't you think "silly" is preferable to "terrified?" No, I didn't think so either.
Seriously, this works, and will probably prove one of the most valuable lessons you can learn and one of the most valuable skills you can master! What you are doing in "(meta-)programming your mind, and I repeat, it works and it's not that difficult to master. But it does take serious work (practice). Do it!
OK, now going into the meeting. Despite all the effort you put into identifying the least undesirable outcome, DO NOT attach to that, or any outcome.
Why not? Because that requires investment of emotional capital in that particular outcome. That outcome may indeed prove to be THE outcome, but it is equally likely that another outcome will be THE outcome.
You cannot lose that level of emotional capital without paying a very large price, and if you go in attached to the outcome that does not happen, your emotional price will be greatly increased by the crushing mental pain and suffering that results from the disappointment.
Realize fully that the Rolling Stones were right, "you don't always get what you want�"
The outcome you get is not always pretty, but it's always going to be the Outcome you do get. By the techniques above, you can avoid the suffering (mental anguish) that comes from fear before the event, and the similar suffering that disappointment brings after the event.
If you have not attachment to any outcome, even the worst thing you hear is nothing more that. Just information, and no matter how unpleasant, it is useful info when you see it clearly without your vision obscured by fear.
Putting that into perspective, no one here would be here if we did not have a disease in which one of the outcomes is always Death.
And putting that tasty little tidbit into perspective, that's the same situation everyone on earth faces. Life is uncertain, but it can be enhanced greatly when you can eliminate un-necessary fear and mental anguish.
When you do not attach to any particular outcome, you avoid entirely any disappointment. No expectation, nothing to be disappointed about.
This is important because the outcome will always be what it will be, no matter how badly you want it to be something else, and no matter how badly you want to avoid it being whatever the outcome actually is.
That's a major win all the way around, in my opinion.
Hey - well everyone here gave you great advice. I know this cancer is a bugger and can pop up in anytime and anywhere, but I would say that usually the nodes are a secondary location. So unless there is a primary hiding somewhere (I'm assuming you go for regular check ups) then chances are it's nothing. Often there is a recurrence in the nodes but usually this is within the first few months to 2 years, so i'd say this far out - not likely unless there's a small tumor somewhere else (unfortunately the fact that you didn't have rads and chemo from the outset does up the odds a bit). I'm not saying it never happens but - not likely - did you have a neck dissection too initially? If so maybe it's a clamp or clip or stitch? I look like Frankenstein on the inside - my dr said - oh yeah I used a lot of clamps!! I can actually feel and see a BIG ONE inside my incision line.
I went for a panoramic set of X-rays of my jaw for some dental work I am considering and the girl who took them looked at them and said she wanted to do them again... There was something that looked like scatter all over my left jaw area, I laughed and to her they were staples holding my face together (I kid you not) over 60 - 100 that I could see... Scary weird! anyway hugs and most importantly good luck!
That's interesting, Cheryl. That's what one of my false alarms was all about. A canula or something which was used when the reconstructive surgeon joined the blood vessels from my graft to my neck. One surgeon (who didn't do the surgery) was very suspicious of it and send me to have FNA under ultrasound but they couldn't even find the node. Then I happened to see the original surgeon who explained what it was all about. It was a definite lump once the doctor put my finger on it but even I couldn't find it again easily.
My gut feeling was that it was nothing and I was proved right. Didn't stop me worrying though not just because of my own life but because of all the responsibilities I had at that time. Not knowing if you are going to have to drop everything and have treatment is disturbing enough without being faced with your mortality yet again.
Best wishes
Thank you so much. Your post made me feel so much better and put my mind at ease a bit. I truly appreciate it!
Hi Everyone,
I got my test results back today and everything looks good! No signs of cancer. Thank you so much everyone for your kind and thoughtful responses. I can't tell you how much it meant to me to read your posts. I'm so grateful that the Oral Cancer Foundation has this forum. Thanks again!
Excellent news!!! Congrats
Congrats!
Be vigilant. You are your best doctor. Examine your mouth frequently and if ANYTHING seems odd, head to the ENT straightaway.
NED.....Terrific!!!!!!!!!