Hi everyone! About 3 weeks ago I had a bump (lump, zit looking bump) removed from my lower lip by my dermatologist. She calls me today to tell me the biopsy was cancerous! What a shocker! I couldn't work the rest of the day! She is working on referring me to an ENT and will call me tomorrow. I may be a little pre-mature posting.
I have enjoyed reading the stories posted here. I hope to have good news. I pray for all of you here. You are doing a great service to all who suffer from this disease.
Frank
Welcome Frank...stay with us and we will help you thru this.
Deb
Welcome, Frank, from another Louisianan. I am from Alexandria, and there are several other bayou folks on this forum.
No, you are NOT premature to post. You are worried, and rightfully so, and whatever comfort, and assurance we can give you, we are ready to give.
I hope that you can get to see the ENT tomorrow, or else you will have an anxious weekend. If that's the case, write to us here, and then go and tune in the LSU-Alabama game. THAT should take your mind off your troubles for a while.
Seriously, please stay in touch and never feel that your problems are not serious enough to need the comfort and advice offered here. We grieve when someone has a terrible situation, and we rejoice when it turns out that someone was mistaken and doesn't have cancer, or finds that they are cancer-free after treatment.
...and in between, we know exactly what you are feeling at each step of the way, even now. You will be fine. Try to put yourself into "neutral" on the subject, since there is nothing at all that you can do now.
Write whenever you are worried. There will be someone here who has the same problem.
You can also use the search feature.
You can also start a new thread, using a more specific subject line....like "Anybody else have cancer on their lip?" ..something like that...and see who answers.
Good luck. I hope you get to see someone tomorrow, and I hope you get good news. If so, let us know, and if not, then let us know that too, and let us walk with you on the journey.
XO--Colleen
Thanks Deb & Colleen! Nice to know that I am not alone. I slept well last night but of course am worried about the possibility of a grim future. I am getting ready to go to work now. Hopefully, I can see someone today. Colleen, I will try to put myself in neutral on this so that it doesn't eat away at living my life today and this weekend. Thanks for your support!
Geaux Tigers!!!!!
Hot boudin
Cold koosh-koosh
Comon Tigers
Pooosh, Pooosh, Pooosh
LSU - Class of '78
Okay guys, it's a cajun thing most ya'll wouldn't understand
Hang in there Frank, you're not pre-mature in posting. We've all been there at some point!
Let us know after "the call"
Kevin
OK Kevin,
Your cheers are as weird as Texas A&M's...hullaballoo canek canek, etc...or however you spell it...we aren't alumi, only parents. Deb
When LSU beats BAMA this weekend you'll see/hear a lot of crazy cajun cheers
The nurse called this afternoon. I have an appointment Tuesday at 2pm. I'll keep you posted. Any suggestions on getting your mind off this stuff?
Try to stay busy doing something, anything that will keep your mind occupied. For me, my hobbies kept me occupied.
So many connections....Aren't they great....Frank and I are neighbors, and Kevin and I share Memphis AND LSU. I am a native of Memphis (went to grades 1-9 on the Memphis State (U. of Mfs. now) campus, in walking distance of my house. I went to college in N.O., at Tulane ("A-one, a-two, a helluva hullabaloo, a hullaballo ray-ray, ....etc." I was a Tulane cheerleader for three years, but I didn't help them win any!) I have two sons who went to LSU in BR, and three who attended LSU Med. Sch., one in N.O. and two in S'port. (and one who didn't give LSU a whack at him.)
Frank...seriously, you can't change a thing by worrying yourself sick. Your spot is not going to change or worsen by Tuesday. It is what it is, and whatever it is, you will face it and deal with it. Yes, it might change what you had planned to do for the next few weeks or months, but you can handle that. YOu CAN handle whatever is coming. And you'll have all the company you want.
So....get busy. The weather is perfect. Go to Avery Island (article in our paper today...a great outing)....or Lafayette to eat at Prejean's....or the Lake Charles casinos...or go for a swamp tour in the Atchafalaya basin or Lake Martin (a GREAT trip...ask me about it)...work in the yard....plant pansies (It's time for them and snapdragons)...rake the first leaves.....cut and trim like crazy ("slash and burn"!)....go to a movie if you can find a decent one.....and don't miss that game....kick-off at 4:00, with pre=game before that...and other good ones after that, into the evening.
Tuesday will get here just as fast, whether or not you worry yourself sick over it. And it will be here before you know it.
Talk with whoever will talk with you about your feelings. Don't bury them...Be open, so that they can be part of this journey with you, even if the journey lasts only until Tuesday.
You're gonna be fine. Talk to us anytime.
XO--COlleen
OK, I have to chime in here - not sure of everyone's ages, but my cousin, Chris Rich, is an orthopedic surgeon in Alexandria (Colleen!) AND he played football for LSU in the days of Charles Alexander! Do any of y'all remember him?
Hi Frank -
My husband had a cancer on his lip in April, but it was "in situ" meaning it was shallow and all the "margins" were clear - in other words, they take a chunk of lip and if it is clear of cancer surrounding the actual lesion, then you just let it heal and watch it like a hawk. Unfortunately, he just had another biopsy and we are awaiting the results. It was near the original site. He has had several oral cancers (see signature, below) and we are hoping this biopsy will be negative. His was sun damage. Did your dermatologist say it was from sun damage? Let us know how Tuesday goes, and if you have any questions, please feel free to email us. Warmly, JaneP
Frank---just enjoy your weekend--as everyone says,
worrying isn't going to change a thing, you'll deal with whatever happens next and you'll get through it!
Don't deplete your energies and resources at this point worrying about it--there are loads of scenarios and changes along the way.
Was the song ever big in America? 'Don't worry, be happy'?? It's a good motto!
Drink and eat as much as you can this weekend in case you have to 'build yourself up' for treatment--and just to enjoy the drinking and eating anyway !
And tell your loved ones you love them--just cos you do, NOT because you've got cancer!
We're all here, Tuesday will come and it will go--then there's the rest of your life!
And you can be sure there'll be one!!
Brenda
Hi Frank, and welcome to OCF! We're all here for you...looking forward to getting to know you better...
Lois & Buzz in NC
Me2--Yes, we do know Chris Rich quite well. My husband is a physician here, and our son is an orthopaedic surgeon as well. Chris tried to get our son to come back here, but he preferred to stay on the Northshore of Lake Ponchartrain, in Mandeville. Our nephew practices Ortho. with Chris. ....small world......His clinic is filled with his LSU memorabilia.
Well I Can add my 2 sense ..But not anything about the south ...Cus I have only been down there once about 20 years or more ago ..to south carolina !! BUT I WOULD LOVE TO COME !!! IT is COLD HERE IN NY right now.
ANyhow
Frank..
I don't think it is ever to premature once you hear those words. And trying to keep busy is your best bet ..of course sometimes easier said then done I know. However we are all here , and as you can see .. all hours of the night .. I dont sleep well so I am on and off here all night some nights. you will find alot of answers and even more friends and support on here..We will be waiting with you to hear how you make out on Tues !!
Shar
Thank you all for your supporting words! I went to see my son's high school football game last night. (They won by the way.) The most amazing thing was that some things that usually bother me didn't seem to matter. All of a sudden traffic to the stadiun didn't seem so bad, parking didn't seem so bad, etc. I did enjoy the game, but "it" was still in the back of my mind.
I slept well last night. I find that things are starting to hurt now. My arm has a pain, my back has a pain, my lower leg and ankle has a pain. I think I am making myself sick. I am sure that's what it is. I believe the brain is a powerful organ. I just have to convince it that I feel great and can do everything and anything I want to do. I am going to head outside to cut the grass and clean up the yard a little. Then by 4pm, I'll be in my chair for the Tigers Game.
Once again, thank you all! I have been so blessed to have found this site.
Frank, isn't it funny that until you are in a house alone, you don't hear its creaks and groans....how the floors shift and the wind comes through under the door, and the heater groans a bit.....You know that it does those things all the time, but you don't notice them. That's the same with these bodies of ours. Once we have our attention turned to them, we start to feel all of these creaks and groans, and of course we wonder which ones are important and which ones are just normal body quirks. This is one of the legacies of this disease. It makes you doubt what you know. It also makes you pay attention, and that's not a bad thing.
I'll be in my chair at 4:00 too. Geaux Tigers!
XO
Oooohh my Prejean's..... Colleen....now you've done it.... Only one better may have been Hymel's in Henderson.
Hang in there Frank, we're pullin for ya buddy!
Frank,
You are in the right place and I echo others who agree you are not premature in posting. This site, the people who are here and the content will all become very useful to you. I have not had Oral cancer but have fought the fight. I am here because it is the best place for me in my profession to be of use for people who have questions related to Oral Cancer. This site is also one of the only sites regarding OC that is moderated on a regular basis by knowledgeable individuals who will, always with respect, add, correct or on some occasions ban the snake oil supporters.
Brian, in my short time here, has chimed in on many occasions in order to maintain the integrity of the site he founded.
My thoughts and prayers are with you.
Please keep us posted.
You are not alone!!
Mike
I ate at Prejean's in Lafayette a couple of months ago. It was a little touristy, with the Cajun band and the stuffed alligator, but the Redfish, with a little Ponchatrain sauce was awesome. Plus, Cajuns have to be some of the friendliest people in the USA, and I love those accents. I could not have eaten nor tasted that wonderful Cajun food 3 years ago...but the swallowing function improved and the taste buds came back...just can't handle the spicy Cajun stuff...no Tabasco sauce for me.
Today Texas was playing so badly against Okla. State that I turned the game off and was watching your LSU Tigers and other stuff. I flipped back on and UT was tied 35 to 35 and won the game! Let's hope LSU will get it back together now in the second half and put Bama away.
Wishing good health and recovery to you all...
Danny G.
Frank
I have read some of your post ... and in some ways you remind me of a dear freind ..that I met on here that is NO longer with us . I don't know why that is . But you do , and i don't know if anyone else see's it ....but I can tell you That I look forward to reading your post and your upbeat spirit..Stay with us and we will help pyou through this !
Shar
OMG here you all go again,talking a foreign language!!!It is so frustrating for us Brits,lol.
Perhaps an anglo american translation service can be added to the search engine facility lol.
soo....what is ponchatrain sauce,and who are LSU?
forgive my ignorance.
liz
Liz
Mushy Peas, Toad in the hole, spotted dick, black pudding, parkin.
I think food is the most difficult translation especially between USA and Brit's. LOL
Anyway like you I have no idea what the sauce and LSU are.
Sunshine.. love and hugs
Leicester
Hull KR, MAn Utd, Spurs, Five NAtions, Formula One--there, got our own back on the sport front too!!
Worst thing I ever did in California was ask for 'country gravy' which was on the menu--conjured up the Bisto adverts!--It was white and runny and ---YUK!!!!!!
Brenda
Wow. So many replies. Well LSU finally pulled it off! They beat Alabama. For you Brits on here, LSU is Louisiana State University. They played football (American Football) Against the University of Alabama yesterday afternoon. Now the coach of Alabama used to be the coach of the Louisiana State University football team. His taking the job at Alabama did not sit well with LSU fans. Last night's game was the revenge the LSU fans were looking for.
As far as Pontchartrain sauce...I'll let someone else handle that one.
Well I think I slept well last night. I feel ok this morning. I woke up a couple of times tossing and turning. I have tried to stay busy to keep my mind off of things. It seems to be working. The best part of my day seems to be when I log on here. I enjoy reading and sharing with all of you.
I am curious... how did you all know you had this disease? What signs did yo have that made you get it checked out?
Well, now that my yard work is done, I'll have to find something to keep me busy. I guess I'll watch the Saints play Jacksonville. (For our British friends, The New Orleans Saints is a professional American football team).
Have a great day!
Frank
For me Frank, I sort of 'knew' from day 1, back in January.
I just woke up one morning with a numb bit on my lower lip--it hadn't gone away by the next day so I 'Googled' it. Being a 57 year old smoker and drinker , I just 'ticked all the boxes'
I went to the doc who said he had no idea, go see a dentist, went to dentist who was very young, but very thorough--full exam and X-Rays and immediate referral to Maxiolfacial surgeon.
The wonderful British Health Service meant it was April before I finally got to hospital, and then had to wait 3 weeks for 'urgent' MRI.
As it turns out, the wait probably didn't make any difference prognosis-wise, but oh boy, did my jaw hurt and look ugly for the 4 weeks before biopsy!
Brenda
I knew the moment i set eyes on Robins ulcer it was going to be bad news.
It just didnt look like anything that should have been there,and the white base just brought back things i learned in nursing school.
BRENFRAN....wash your mouth out.If we are talking british football at least make it a yorkshire team!!!!!!!
Frank - I kind of just knew that the ulcer on my tongue was cancer, even though at first several doctors kept telling me they thought it was not anything bad (which delayed my diagnosis as even though deep down, I knew, I really didn't want to acknowledge it) I am a nurse, though, and an ulcer on the side of my tongue that wouldn't go away was a pretty classic sign...so I finally said let's stop messing around, and just do the biopsy!!
Okay I'll do the Pontchartrain sauce.
It is a sauce developed by Mr. Don Landry of Don's Seafood Restaurant that started in Baton Rouge back in the '60s. The Landry Family is known for their chain of Landry's Seafood Restaurants here in the US but unfortunately when they went to franchise most of the dishes lost the zing of the recipe's that Mr Don or his bothers (Pat, Jean, and Hymel) had in their cooking. It is primarily a wine/butter sauce with lots of garlic and several peppers thrown in, and in some cases lump crabmeat. Great on broiled or grilled fish
Cest Bon !!!!
I knew I had this someplace:
Mr Don's Pontchartrain Sauce
1 sweet onion (softball size), peeled and chopped fine
1 cup Chardonnay wine
1 tablespoon butter (no margarine or any substitutions)
1 tablespoon flour
1 cup chicken stock
1/4 cup mushrooms, chopped fine
1 small green pepper, seeded and chopped fine
4 garlic cloves, minced
1/2 cup butter, chopped into 1 tablespoon pieces (no margarine or any substitutions)
salt or black pepper or cayenne pepper or tarragon
1. Cook the Chardonnay and the onion together over a low fire until the wine is reduced and the onion is very soft.
2. Melt 1 tablespoon of butter in another heavy saucepan over medium heat.
3. Add the flour and whisk until blended.
4. Add the stock a little at a time, whisking constantly until blended and thickened.
5. Add the mushrooms, green pepper and garlic. Cover and simmer down until the vegetables are soft.
6. Remove from heat and add 1/2 cup of butter pieces until melted.
7. Add to the Chardonnay (which should now be reduced to a glaze) mixture.
8. Blend well over very low heat.
9. Season to taste with salt (may not be needed), black pepper, cayenne, and tarragon.
To relate this to our discussion of cancer, you will note that this sauce does not have to be spicey. I, myself, cannot tolerate much spice, but I do enjoy good flavors. You can add any seafood you wish...shrimp, crawfish, crab....or a combo.
Thanks, Kevin. We ate sev. times at what I thought was the original Don's in Lafayette, LA, many, many years ago. I agree that Don's newer restaurants aren't the same, and that Landry's restaurants are a very poor representation of Cajun food.
I didn't know about the Landry family and Hymel's. That'll be next on my list.
You asked how we knew we had cancer....
Mine was on my gums, starting on the outside of a rear upper molar, where most of us get chewing injuries or aphthus ulcers. I complained of a tender area and an earache at my dental checkup. My dentist did not give it much attention. His notes say, "note some pocketing."
Six months later, I complained again, and he said that he "notes some pocketing" again and this time he cauterized the area! eek!
He did not have me return, nor did he consider that it might be serious.
Two months later, I felt an odd area on my palate, near that tooth. I looked myself, and it was very, very clear to me that something was not right! I could see that this area of concern on the outside (cheek) of the gums had spread along the gumline, and that it was also appearing now on the inside gumline, spreading the other direction, and that it had spread onto the hard palate. The areas were not terrible-looking...red, angry, with some speckles that sometimes were more obvious than at others. The area on the palate was round-ish, a little raised, but essentially flat.
I returned to the dentist, and can you believe this??? He STILL did not consider that it could be cancer! He CAUTERIZED it again, gave me an antibiotic, and sent me on my way, again without any sort of suggestion to return.
I did return the next day, insisted on being seen, and he eventually came out of his office, did not look inside my mouth but sent me downt he block to the periodontist (gum disease dentist) still insisting that this was periodontal disease.
The perio. immediately knew that it was cancer and sent me across the street (small town) to the oral surgeon, who also knew that it was cancer and immediately took an excisional biopsy.
The rest is history.
It is very obvious that my dentist did not know enough to recognize the cancer, even when it was classic and right in front of his face. He also was notnotnot up to date on the current mindset of watching for improvement in oral lesions and then doing biopsies sooner, rather than later.
And I was not informed either....not informed enough to insist....insist....on a return visit in a week to be certain that his treatment was being successful. THAT is a message that we must get out to the public.
So I, like so many others here, went undiagnosed for far too long, and of course it affected the extent of my surgery.
I am very fortunate--so far--to be cancer-free at nearly two years. But if I do turn up with some metastasis, I will feel that it was because it had so much time to travel undetected.
So far, so good.
BTW--I have not, of course, returned to that dentist, nor have we spoken. I had wanted a face-to-face with him, but I haven't been able to bring myself to do it. I might have to settle for writing him a letter. At least that way I can be certain to say what I wish to say.
He fell down on his duty. I should have been able to presume a certain level of proficiency in the professional care he offered to me, and his offense against me was clearly "a failure to diagnose." He failed to diagnose my cancer.....failed to even consider it out of either ignorance or arrogance. I don't know which.
What's done is done, and I don't choose to dwell on the negative feelings that thinking about him bring out for me. I am doing well, in spite of his inadequate treatment of me, and I thank God every day for that.
Are dentists requires to check for this in a routine exam? I haven't been to the dentist in many years. I think that this disease would get people to their 6 month check up with bells on! I know the rest of my family will keep their appointments at the dentist. Especially my 16 year old son!
You know the silly part about my situation... I debated which doctor to go to. It was on my lip so is that for the dermatologist? Dentist? GP? Oral Surgeon? It seems like it took me a few days to decide on a doctor once I finally decided taht I should have this thing checked out. I chose the dermatologist. I arrived for my appointment and had it removed. It was so routine. Then as of Thursday my life has appeared to change.
BTW - any idea why my dermatologist is sending me to an ENT? Is an ENT better equipped to handle these things? I guess the real question I am asking is should I be seeing a different type of doctor? An oncologist? An oral surgeon?
Thanks!
Frank......I don't know what the best type of dr. would be. If I were you, I'd go on Tuesday and see what that dr. says. There is an overlap of surgeries done by different specialties. Most people seem to have their surgeries done by ENT's, often at a comprehensive cancer center. Plastic Surgeons also do cancer work on an area such as the lip. I have a friend from this forum ("Splenda") who had her oral surgery done in New Orleans by an ENT surgeon. Now the entire Head and Neck department at LSU-NO has moved to Baton Rouge. You can ask Splenda to tell you what she knows about those doctors.
My surgery was done at LSU in Shreveport, because I was told that "the man" was there. He is an oral and maxillofacial surgeon. He has both an MD and a DDS degree. He was able to do my extensive surgery without any incision on the outside of my face. I understand that many ENT's do this surgery by using a long incision that allows them better visualization.
See what they say on Tuesday, and then let us know. Between Splenda and me, we can tell you about the facilities in our state.
Depending on what sort of cancer it is, you will then be better prepared to make decisions. M.D.Anderson is not far from you, and might be well worth going for a consultation, again depending on what you find out on Tuesday.
There are lots of options, and plenty of people who can help you, once you know what you are dealing with.
Thanks Colleen!
I know it seems like I am rambling, but I am just thinking of all options and outcomes.
Well, at least we had a good football weekend in the state. The Tigers and Saints both won. My son's high school team is in the playoffs and have their first round game at home this week against Leesville. Looks to be a good game.
I am back to work this morning. I feel good. Nothing seems to be hurting this morning. None of the joint aches and pains woke up with me this morning.
Have a great day everybody!
Hi Brits,
A little help from a northener who knows just a little more than you.
Ponchatrain is a lake and I doubt that they make a sauce from the water. Actually, for all I know it may be a city, town or an area, too.
LSU is Louisiana State University. I think I got that one right.
I'm sure some southern folk will be around soon to straighten me out and this should hold you over till then.
Jerry
Thanks Jerry! You almost got it right.
Ponchartrain is a sauce. (See recipe above in this post). It is also a Lake. No, the water is not used in the sauce.
All -- Tomorrow is the day. I see the ENT and hopefully find out what I have. I had a good day today. I was able to get my work done without too much distraction. My wife is comming with me in the event that I can't function as a rational adult.
It's not knowing that's the worst part. I know you all have been through it. I thank you all for allowing me to ramble on about it. It seems theraputic.
I keep hoping that this is a test that I must pass to do something greater with my life. Is this a sign? I know it's not a punishment - I don't believe God does that.
I must tell you all that I am scared right now. I feel like I should be eating Superfoods to combat cancer! Something like this puts things in perspective.
Thanks for all of your support! I will check-in tomorrow.
I knew I had the big C before I was diagnosed. My teeth started breaking off and my tongue hurt so bad it was hard to eat. I had a scope done on my esophagus and the Dr had already made an appt. for me before I came to. I'm glad I asked him to check my tongue before he put me to sleep. have a great day all.
Good luck tomorrow FRANK !!
As far as How I knew.... I think I just did . I had a sore that didnt heal and try to Ignore it , but in my heart I knew and maybe thats why . although it didnt seem like It could be ..because I met no risk fatcrs . I had my GP, My dentist and Oral surgeon All tell me NO WAY and the biospy comes back ..when they called me 2 days later I knew for sure ..... I will be thinking of you tomorrow !
Shar
Thanks for the encouraging words. The day is here. I hope we get some information today. The unknown is driving me crazy.
I slept well last night. I am at work now trying to get a few things done before my appointment.
Please keep me in your thoughts and prayers today. Thanks!
Well I am back from the ENT and Hospital...
Went in today at 2pm and was seen rather quickly. They did not seem to be busy. I sat in the chair in the exam room waited anxiously. They already had the information from my dermatologist. He looked at my lip and had a hard time finding the location of the original lump that was removed. He gave me a mirror so I could help him find it. He looked in my nose, down my throat, in my mouth, and felt my neck. He said that he did not think that there was anything to be worried about. I smiled and repeated to him the nothing to worry about phrase in the form of a question. He could tell I was confused and concerned.
It appears that the original removal healed so well that he thinks that the growth may have been taken with the original cut. Is that possible that the dermatologist got it all by luck with one fell swoop?
Anyway, tomorrow he is going to do a leison removal? Did I say that right? Basically he explained that he will cut into the area and have it biopsied. If there is cancer, then he cuts again and has that biopsied. He made it sound that he will cut and biopsy until there is no cancer found. He seems to think that the cutting will be minimal.
He also has me scheduled for a PET scan. I am sure you all have heard of this. Something with dye and scanning the area of the head and neck. He warned me that the PET returns a lot of false positives. He said that if there is cancer on the left side of my face and it returns something on the right side of my face then it's probably nothing to worry about. Does this sound right to you?
If any of this sounds wierd, please let me know. I'll ask more questions before the procedure tomorrow at 11am.
After the appointment we drove to the surgical center for EKG, CBC, and urine test. I also pre-admitted for the surgery. I assume as long as these things come out ok, my procedure is a go.
If everything comes out ok with these two procedures, would I be crazy to get at 2nd opinion just to be sure? Maybe a dentist to look and give me an opinion?
I feel a little better now that I made it through today but will be glad once this is over tomorrow!
Thanks for all of your support! I'll update again tomorrow.
For me that is what they did on my tongue they removed the lesion and biopsied it, then called me 2 days later to have me come in , I was supose to come back in 2 weeks , they werent suspecting cancer at ALL ,,they kept saying NO WAY DON"T EVEN THINK IT >>NOT EVEN POSSIBLE . BOY were they WRONG HUH !!
A PET scan reminds me of a CT or an MRI only Not loud like a MRI and it take about 45 min or so in machine I have only had one so I may be mistaken ..someine else may answer better on that subject , But I also had a full body scan . I have heard of false positive , specially after surgery or radiation .
I wish you the Best and WAIT to hear !!! Holding you in thought !!
SHar
Thanks Shar!
I'll keep you posted.
[quote] If everything comes out ok with these two procedures, would I be crazy to get at 2nd opinion just to be sure? Maybe a dentist to look and give me an opinion? [/quote]I do not think anyone would call you crazy for getting a second opinion simply due to the large amount of missed diagnosis. However the PET scan should tell a bigger story.
I sit here tonight with a load off my shoulders. The biopsy of the larger section of my lip showed no cancer. I am now stiched up and in a little discomfort. I go for followup on Tuesday.
I asked him about doing the PET scan today. He said he didn't think I needed one but if I wanted one, he would do it. I told him I'm all for doing it for my peace of mind.
He told me that either the dermatologist got it all when she cut it or the pathologist "over diagnosed" it. Either way, I think that's good news.
I will let you know what happens Tuesday.
God Bless!
I missed updating Tuesday.
Saw the ENT. Final pathology report says no cancer in tissue he took from my lip. He asked me if I still wanted to do the PET. He seemed to think that it was unnecessary.
I told him, I would feel better if we did it. So I am scheduled for a PET today at 8am.
Now for the million dollar question...
What happens after this test? I am scheduled to get the results the week after Thanksgiving. I know this test gives a lot of false positives. What is the next step if spots show up? How will they rule out a true hot spot and a false positive?
Thanks!
Hey, Frank- just one question- you have seen several different Docs during all of this-but I don't recall reading if they are affiliated with a major cancer center. If PET turns out to have any questionable areas, I would want to go to the nearest CCC for a final evaluation. { and keep getting looked at by someone very good for the next few years]. Amy in the Ozarks
When my son's PET showed areas of concern, they followed up with a CT scan. When a later CT scan was troublesome, they followed up with a PET. As far as I understand, the PET often shows false activity in areas of inflammation. The CT sometimes lights up in areas of scar tissue.
Things sound like they're going good!
Jam --
I have not been seen at a CCC. I think the closest would be MD Anderson.
Hey Frank - LSU N.O. has a CCC
http://www.medschool.lsuhsc.edu/cancer_center/patient_care.asp MD Anderson is certainly one of the premier centers tho.
Kevin
You just can't beat a CCC as I found out. Best you go to one near you.
Thanks Kevin and Jim!
Is LSU NO back open from Katrina?
Ok...
So I go to the ENT's office to p/u copies of medical records for the insurance company that the ENT had ready for me. I ask the receptionist for the records and she hands me an envelope.
Now, follow this, my follow up appointment to get the results of my PET was scheduled for 12/4. I was told after the PET that the radiologist would have them read by the afternoon of the test. I asked for an earlier appointment since the results were probably in. She told me they did not get them yet but did move my appointment to 11/26.
I get home and am curious about my records thus far. I open the envelope and begin looking through the forms. Well I guess you already know what was included in the records...
That's right, THE PET report! So I am asking for some interpretation...
Neck: No evidence of hypermetabolic activity. Normal physiologic activity is identified.
Thorax: No evidence of abnormal hypermetabolic activity or suspicious nodule. There is a 2.9cm soft tissue density just left lateral to the AP window. This demonstrates borderline hypermetabolic activity of SUV 2.5 and is non-specific.
Abdomen/Pelvis: There is no evidence of abnormal hypermetabolic activity. Normal physiologic activity is identified.
So my interpretation is that I seem to be clear of oral cancer but now am concerned of something in my lungs? The radiologist writes in the "impression" section of the report, "...further evaluation with a dedicated enhanced CT of the thorax may be helpful as well as close follow-up. A non-hypermetabolic metastatic focus is felt much less likely in this location." Any idea what that means?
I now think I need to look into getting to the cancer center to check this out as I believe this is now out of my ENT's realm of expertise.
Could this be lung cancer? I don't know. You guys have been so helpful these last few weeks. Can anyone shed some light on this? Thanks!
Frank, one of the most incredibly frustrating things about this experience is the ongoing "hurry up and wait". It is astonishing to me that when one is dealing with one of the most deadly diseases in the world, waiting for test results (or being able to get a timely appointment for ANYTHING) seems to be business as usual. I know that most cancer centers and oncologists are buried with patients. This stuff (in all forms) seems to be epidemic. Getting your oncologist's nurse to return a call seems like a major accomplishment.
Re: question about lung cancer....my oncologists told me that a common site for metastisis from oral cancer is the lungs. However, though this is not a typical thing, I believe that keeping on top of the situation, including demanding timely appointments with the doctors and tests (PET/CT) is extremely important. You have to be your own advocate and understand that there are thousands of other cancer patients fighting for those resources.
And, I would definitely travel to a true center of excellence such as M.D. Anderson in Houston, regardless of inconvenience.
Frank: Take a deep breath....one of the experts will be along shortly to give you an understandable explanation of your scan results. The only thing that I will say is that my personal research on the topic of PET scans leads me to believe that they are NOT always to be believed!
Don't freak...it doesn't help....obviously, further tests are warranted. Try to concentrate of the positive results which appear to confirm the absence of oral cancer.
Keep us posted as to your progress, and know that we're all thinking of you during this trying time!
Lois & Buzz in NC
Frank, This is the reason that patients should not receive their reports without professional interpretation and guidance. I guess it was an accident for you to get it then. HOWEVER, you DID receive it, and it was their fault that you did, so now I would call tomorrow and insist on a consultation to explain them and to ask the ENT for direction. I think that you need to go ahead and get the CT scan and hear the analysis.
OR....you can call MDAnderson and ask their advice. Ask if you should go ahead and get the CT locally (or in N.O.) or if it would be better to come there and begin a workup, beginning with the PET scan and letting them do the CT.
I am told that LSU's head and neck department has moved totally to Baton Rouge. You can check with Splenda on this forum about that. She lives in Madisonville, close to Covington on the North Shore of Lake Ponchartrain. I went to her prosthodontist in BR, and he told me that his business has really picked up now that the H and N Department has moved there.
My surgery was done at LSU in Shreveport. I went to MDA for some second opinions after my surgery, but they agreed that my treatment was appropriate.
If I have more cancer, I will go to MDAnderson for sure. It is not far from you in Houma. I just had a minor surgical (not cancer-related) procedure done in Houston this past week, and the drive is nothing much.
With LSU in disarray, I would go to MDA and know that I had gotten the best advice.
Thanks for the replies.
I am much calmer now than the 1st time. I think you realize how much you take for granted. I have found that this experience has changed my outlook on things. The little things don't seem to bother me like before.
I think I will keep my appointment with the ENT on Tuesday and will see what he says. That will give me a couple of days to research MD Anderson and see what they say.
I believe Thibodaux Regional Hospital here has a cancer center. Since all my tests were done there, that may be a good place to start.
Thanks again to all!