So hee I am, two years out from the last time I had any known oral cancer (that is 2 years out from my surgery date, I did have rad and chemo after that despite having clean margins and nodes and that two year anniversary won
t be until the beginning of June. Two weeks ago I had a PET scan as part of normal follow-up (ordered by my ENT) and apparently it showed some "changes in the upper neck" from the one I had about 10 months ago. My ENT's nurse called and said he wants a chest CT and a neck MRI then when he looks over those I will hear more.
I'm trying not to panic. I have not asked to see a copy of the PET report because I figure it will just scare me more. I'm trying to remember that PETs are oversenstive and that about 4 weeks before I had the PET scan was when I had the surgery to remove the stent from my espohagus and maybe that caused the difference. Fortunately, I have an insanely busy work schedule for the next couple of weeks to distract me from this but I'm still so worried. I was finally feeling hopeful about eating well enough to get off the g-tube and looking forward to elebrating my 2 year anniversary. I don't know if I could handle learning that I'd had a recurrence.
Nelie
Nelie,
I am certainly not a Doctor, but based on your extensive treatment it seems unlikely that you have a recurrence. My doctors told me (at a stage III) that if I make it thru the 1st 1 1/2 years (next week w/scans)I am probably home free. It is a horrible and helpless feeling that you have, but have some faith in your docs. You are probably ok.
All my best,
Rob J.
Hi Nelie, I read your post and I want you to know I am thinking of you and hoping it is not cancer again. I certainly understand how you are feeling....Take Care, Carol
Nelie,
I hope and pray that the PET is just over sensitive as you say. I'm sure the CT/MRI will confirm that you are still cancer free.
Stay Strong
Tim
Nelie, You have been through so much and no matter what the probabilities are we are all just one Dr's. sentence away from being changed forever. Hoping your dr's serntence brings you joy and happiness which you have fought so hard for.
Always, Mark
Neilie,
You've heard this before and you've probably posted this before....it's not cancer until they say it is....we have all had anxious moments like this and the vast majority turn out to be nothing. You can't do anything about it now anyway so forget about it until the next scan. At least push it as far back in the brain as possible.
Nelie,
Like everyone else, I hope this turns out to be nothing serious. I know it's frustrating to hear something as vague as "changes in the upper neck" without any real context to put it in. I've periodically had to have scans of that area because of symptoms I've felt, but so far (thankfully) they've turned out to be stuff that could be dealt with by PT -- some cervical spine compression and stiffness that may be a long-term effect of radiation, but right now I put it in the nuisance category.
I hope you get some clarification soon and that it turns out to be good news.
Cathy
Nelie,
When will your ENT schedule the tests and results. The hardest part is the waiting and the what if?. David is right- it isn't cancer til they say it is. You have been through treatments that are horrible and complications with your esopaghus that seem to affect only a very small % on this board.You have gone through this as the stong suvivor you will continue to be. This sucks big time.
paula
CG to gil stage 4b Bot,rt tonsil, 2lymph nodes, dx 11/05 finished tx 3/06 35 IRMT, 5 chemo, clean scans 2/07, stricture of esopaghus
Paula, The tests are scheduled for Wednesday. That's the soonest they could get me in. It will be Wednesday morning so I'm hoping I'll hear something by a week from today. I kind of doubt it will be anything too definite though, since if he thinks it's cancr I'd imagine the next step is a biopsy. Yuck.
Fortunately, I am on a search committee for a faculty position at work and we're interviewing 5 candidates next week, along with all the other teaching, grading and committee meetings I have going on. This person we're hiring will be someone I work closely with for (hopefully) years and years, so I really want to give my full attention to the interview process and it will distract me some from thinking about the worst case here (and keep me hopeful about the future).
Nelie
Nellie, Want you to know I'm thinking of you. Always keep that hope for the future. We all have to. Sounds like you'll be keeping yourself busy. Try not to dwell too much on the scans until you hear what's actually going on. I know it's hard, been there myself, as alot of people here have. Wishing you a good report. Take care.... Linda
Nelie, Just wanted to let you know I am thinking of you, hoping for everything to come out "all clear". Frankly, if you had surgery 4 weeks prior to the PET scan, I would be IMMENSELY surprised if it did NOT show some new hot spots, i.e., where the surgery is healing. That's what PETs do, they show hypernormal healing/metabolic activity.
Best wishes,
Andrea
Andrea, thanks for the wishes. The thing about the surgery is it wasn't a cutting stuff open surgery, it was a stretching stuff open surgery, although there was some bleeding, so presumably some raw flesh somehwere when they removed the stent (the advantage of having a g tube is they can see this because the bood goes into the stomach). I really have no idea if the "upper neck" area that is lighting up is close to the esophagus or not. My ENT knows I had that surgery and I assume he might be less concerned if it was the esophagus lighting up.
Nelie
The "not knowing" is the hard part right now. That's what always drives me nuts. It seems like we've all been through so darn much, that "knowing" the facts gives us a starting place to work from, a battle line to fight from.
I would try to get a copy of that scan and look through it. At least then, you would have a general idea of the area of concern.
Hold fast,
Andrea
Nelie,
I am so sorry you are going through this waiting game we all have to do. I am thinking of you.
I hope it will turn out to be something that they just want to look at closer to make sure all is well.
It could be scare tissue. I know that will show up on a scan.
Take care, Thinking of you
Diane
Well, I'm still up in the air. I had the neck MRI and chest CT yesterday and my ENT called right after (he must have been in the hospital--if I recall correctly, Wed. is his surgery day) to tell me that he was leaving the results of the chest CT up to my medical oncologist to look at (because apparently the PET had shown activity in nodes in the chest near my armpits but bilaterally which would not be consistent with a breast cancer recurrence OR oral cancer recurrence--he didn't say what showed up on the chest CT--arghh. I just HAD an appointment with my MO and now I have to call his office and ask about those results. I'm tired of this part time job called "patient".)
BUT, I'm not out of the woods with the ENT either because the PET showed some "activity in the upper neck" and the MRI showed a place on hte base of my tongue which looks "abnormal". The he said, as if he was looking at it as we were speaking "but I see this was on your last MRI as well" (I assumed he meant the one I had a year and 1/2 ago, when I was only three months out of treatment, but now I'm wodering if he could see it on the mistakenly-given, head and brain MRI I had a month ago.) Anyway, he said "that suggests it could just be something anatomical that's not normal".
But he wanted me to come in anyway, as soon as possible for a really thorough exam with a scope. I last ahd one of those 3 months ago and I remember at the time he said the base of my tongue looked good but he was actually looking more to see if I had another stricture, so maybe he could have missed something? So I'm going in Monday.
Anyway, from his tone I kind of got the impression he doesn't think this is likely to be a recurrence but just wants to double-check with the scope. I hope that isn't just me in denial. Well, maybe it's better if I am. I do know there is some possibility of bad news so I made the appt. for a time my husband could be with me. But I'm hopeful this will turn out to be a false alarm.
Nelie
Nelie,
Hang in there. I have been and still am where you are with these damn scans. I realize their importance but they are just as rinky dink as the barbaric Tx we all must endure. Rindy dink meaning one would have thought that by now medical science would have developed more sophisticated methods to find and kill cancer. Well at least we don't have to put up with leeches and maggots. I hope saying that doesn't give any oncologist any ideas.
Nelie, you are welcome in my tree on the island any time you care to join me [Helen may be there also, and Cindy, so you will not lack for loving arms] I know this "sucks", as my 15 yr. old grandson would say. Amy
Nelie.....I'll be thinking of you especially tomorrow as you go to have your scope exam. I sure do hope that you come away with logical, healthy explanations for these scan findings. Please let us know!
Well, the exam went well. My ENT said everything looks fine. he thinks what showed up on the MRI was that my uvula was swollen/inflamed from radiation. It was there on my first MRI a year and 1/2 ago as well, so really likely not to be cancer since it hasn't changed in that time. He said the base of my tongue looks good.
He thinks the chest CT was also clear but wants to have my MO double check that report just to be sure since what showed up on the PET would be related to the breast cancer if it was related to anything. I'm not too worried about that since I just had a checkup with my MO and the breast surgeon and a clean mammogram.
So I am two years cancer free. Yay!!
And he (the ENT) is going to find out how to order a bougie for me to learn how to use (hopefully) to stretch my own throat. He pointed out that is I can learn how to do it I'll be quite a hit with small children..quite a little party trick
Anyway, thank you, all, for the support. I think I'll sleep well tonight.
Nelie
Hi Nellie,
I'm so glad to hear this news and I think you'll sleep well tonight too. Jack has a hot spot that shows up on the shoulder opposite his neck dissection and the bottom line they've come up with is that he's left handed and using it more now that he's back to work full time. Go figure with these PET scans.
Regards JoAnne
Hooray-Hooray for Nelie!!
WOHOOOOOOO !!!! Good news !! NOW go get some well needed and well deserved rest !
Nelie,
This is great news - I'm glad you were able to get a better explanation of the scan results.
And - congratulations on reaching the 2-year mark! I hope you keep on seeing improvement.
Cathy
Nelie,
I am so happy for you!
Mark
Nelie -
Glad to hear your relief! Sleep well AND wake up smiling - can't beat that! Warmly, JaneP
Nelie,
That is GREAT news. Time for 'a long winter's nap'. Then go celebrate that two year anniversary.
Take care,
Eileen
Awesome news
WTG Nelie. I'm sure you had a peaceful, restful night last night. So glad all is well.
Steve
Awesome news Nellie.
Minnie
Awesome news.. Wishing you no new procedures, tests, stress or scares !
Paula
Nelie,
I join in with the others.... Happy for the good news!
take care,
Diane
OK. I'm bringing this back because at my last appointment with my MO, a couple of weeks ago, he mentioned that he had looked over the MRI which I had following the questionable PET and he didn't see anything to worry about, especially since my ENT had thoroughly examined me with a scope and, 4 weeks before that PET with the worrisome results, I had had surgery to remove the stent in my throat where the doctor had to be using some sort of scope to see down there and would certainly have mentioned it if he saw anything looking like cancer (I hope this is true. the surgeon helping me get my esophagus open is at another hospital and is not treating me for cancer but does see other patients with esophageal cancer all the time and would presumably recognize something amiss if he saw it in his travels down my throat).
So after this discussion I got up the courage to finally ask my MO (who is good at taking time to exaplin detailed medical results) what the PET report had said exactly (I hadn't asked before because I was afraid it would scare me more). It turns out that there were three areas one around the base of my tongue and two around lymph node areas in which there was "marginal" activation. What my MO said is there is a range of uptake in a PET scan where it's clear nothong unusual is there, then there is a range where it's clear there's something that should be investiagted further. And in between is this "marginal" range where no one knows exactly what is going on. But the scary thing of course, is that this marginal activation was around where a recurrence would be likely to happen.
He reassured me again saying that MRIs were not really the best at detecting early tongue cancer recurrences but the visual exam with a scope WAS and I'd had a bunch of that lately and gotten the all clear (however, when I saw my ENT he had said he felt relieved because the MO had checked the MRI and found nothing to worry about so it seems they both are placing a lot of weight on the other's way of checking things).
Anyway, I'd like to celebrate my upcoming 2 year anniversary of the end of treatment (in a couple of weeks) but I'm still a little worried by the PET results, I'm thinking maybe I should wait 6 more months or something to be sure it was nothing. Sigh.
Nelie
Does anyone ever stop worrying about recurrence?I am sorry you have to carry this burden Nelie it should now be a time for looking forwards and i bet all you can think about is what happened before.Good Luck
LIZ