Canker sore becomes Cancer after PET scan

jk11

In October of last year I had a PET scan because of a high CEA blood test reading.  I had a canker sore at the time.  Within days I had an extremely sore tongue.  Saw my regular doctor, referred to an ENT, saw him several times, medicine prescribed, nothing helped.  By January 2014 I was so weary of hurting and nothing working, I wrote a long letter to my regular doctor telling him all that I had experienced.  He referred me to a surgeon.  I saw the surgeon on January 29; he said he was sure it was cancer.  Surgery was on February 3, 2014.  I was better for several months but was concerned about a sore spot on the tongue just behind where the cancer was removed.  My surgeon had me wait a month; by then it was larger and was told it had to come out.  He did not think it was cancer, only scar tissue.  However, the sugery on August 8 showed it was indeed cancer.  I still have some swelling but seem to be getting somewhat better.  My belief is that the PET scan caused the cancer by leaking the radioactive tracer out through the canker sore and affecting the whole left side of my tongue. (also minor soreness to my throat, gums, cheek, lymph node under my left jaw, nerve pain to my left ear)  The other symptoms subsided after surgery but my tongue is still not well.  All three doctors I have seen tell me there is no possibility that the PET scan caused the cancer.  But, the PET scan taken when all I had was a canker sore was negative.  I have read that the radio-active tracer is a Flourine-18 and one of the exposure routes can be through a wound.  Has anyone out there had an experience where they thought that the PET scan actually made them worse.  I can find nothing online about that side effect from a PET scan

JK11

debbiejeanne

damn, JK, I hate to hear it

damn, JK, I hate to hear it is cancer.  guess it doesn't really matter where it came from, it is cancer, period.  how do they plan to treat it?  I really doubt it was the PET as many, many of us have PETs.  but weirder stuff has happened.  I hope they have a plan of attack in place soon and you are on your way to being cancer free.  please let us know when you do.

God bless you,

dj

wmc

Welcome to the H&N Group

Welcome to the group and sorry you need to be here. I dought that the PET can spread the cancer. If it could, my lungs and all my lymph galnds would be covered with it, and I'm not. You have a better chance of it spredding on it's own. In some cases when they open you up and the air hits the cancer it can spread, but you have to have it very bad first, and it was starting to spread on it's own. This has been used for about 5 decades.

Are you having this done local, or are you going to a large Medical center that is Nationally ranked? It does make a big differance when you are seen by a tumor board. They deal with this everyday, and a local Dr doesn't.

Best of luck

CivilMatt

BEWARE OF PET?

JK 11,

Welcome to the H&N forum, so sorry you find yourself here.

If PET leakage caused your cancer, yours is the first I ever heard of.  For me it was my tongue, no pain, just given away by a lump on my neck.

If you continue treatment I wish you the best of luck!

Matt

jk11

debbiejeanne said:

damn, JK, I hate to hear it

damn, JK, I hate to hear it is cancer.  guess it doesn't really matter where it came from, it is cancer, period.  how do they plan to treat it?  I really doubt it was the PET as many, many of us have PETs.  but weirder stuff has happened.  I hope they have a plan of attack in place soon and you are on your way to being cancer free.  please let us know when you do.

God bless you,

dj

Canker sore becomes cancer after PET scan

debbejeanne, thanks for responding.  When I went for my followup visit after surgery, he told me that since I have had two surgeries, the next step would be radiation.  This is what scares me so because I think the radioactive tracer in the PET scan caused the cancer.  I know that everyone tells me differently but my symptoms started about a week after the scan; I know if I hadn't had that canker sore at the time, I would not even think that way.  My tongue (two weeks after surgery) is feeling somewhat better but it looks terrible--redness, white bumps all over the left side.  God bless you too,

jk

 

jk11

wmc said:

Welcome to the H&N Group

Welcome to the group and sorry you need to be here. I dought that the PET can spread the cancer. If it could, my lungs and all my lymph galnds would be covered with it, and I'm not. You have a better chance of it spredding on it's own. In some cases when they open you up and the air hits the cancer it can spread, but you have to have it very bad first, and it was starting to spread on it's own. This has been used for about 5 decades.

Are you having this done local, or are you going to a large Medical center that is Nationally ranked? It does make a big differance when you are seen by a tumor board. They deal with this everyday, and a local Dr doesn't.

Best of luck

Canker sore becomes cancer after PET scan

wmc Hello and thanks for your input.  So far everyone has told me the same thing.  I just can't get over the fact that when I had the PET scan I was feeling great, not problems, even forgot that I had this one little canker sore.  I think I got it from eating too many tomatoes; we had a bumper crop in our yard and I had been eating them for two meals a day.  Within a week or so I suddenly had all kinds of thi

 

ngs wrong in my mouth and could not get food down.  Had to wait to see my Dr. then wait to see an ENT and what he prescribed did nothing; I just kept getting worse.  By the time my Dr. sent me to the surgeon, four months had passed and he said immediately that he was pretty sure it was cancer.

Since I had my second surgery two weeks ago today, the surgeon tells me the next step will probably be radiation.  That scares me because I can't seem to get over the idea that it started with the PET scan.  I am a non-smoker, rarely drink anything alcoholic, my weight is good and I work out at a gym 3 times a week.  The surgeon is part of an ENT surgical group in a large hospital in St. Louis.

Thanks for your encouragement; best of luck to you also.

jk

wmc

jk11 said:

Canker sore becomes cancer after PET scan

wmc Hello and thanks for your input.  So far everyone has told me the same thing.  I just can't get over the fact that when I had the PET scan I was feeling great, not problems, even forgot that I had this one little canker sore.  I think I got it from eating too many tomatoes; we had a bumper crop in our yard and I had been eating them for two meals a day.  Within a week or so I suddenly had all kinds of thi

 

ngs wrong in my mouth and could not get food down.  Had to wait to see my Dr. then wait to see an ENT and what he prescribed did nothing; I just kept getting worse.  By the time my Dr. sent me to the surgeon, four months had passed and he said immediately that he was pretty sure it was cancer.

Since I had my second surgery two weeks ago today, the surgeon tells me the next step will probably be radiation.  That scares me because I can't seem to get over the idea that it started with the PET scan.  I am a non-smoker, rarely drink anything alcoholic, my weight is good and I work out at a gym 3 times a week.  The surgeon is part of an ENT surgical group in a large hospital in St. Louis.

Thanks for your encouragement; best of luck to you also.

jk

Food for thought..no pun intended

There are a few thinge cancer does like. Any food that is acidic, tomatos are very high in acid to the point just the juice driping off tomatoes will eat cement. This I have seen at a tomato inspecting station. In one month it ate the cement and only the rock was left in a 12" circle where it driped. So hold off the tomatoes for a long time. And the second is sugar. It is atracted to glucose. Please do not be afread of radiation Tx. It is not plesent but it does cure, thats CURE, cancer and often you will also have Chemo. It is a rough road to go down, but you will get to the end of the tunnel and then you will see the light is strong. You can and will get through this just fine. This group will help and suport you on your jorney.

Bill

phrannie51

I'm leaning with others in the group....

 you had a high CEA reading to begin with, then you had a PET scan that didn't show anything....Tumors have to be big enough for a scan to read, and yours probably wasn't...but again the CEA reading was high.  You took medicines that did nothing to help (like so many of us did), and of course the surgery, which in my mind would help cancer start spreading.   SCC is a slow growing cancer....that's why even going a few months only has it growing next to the orginal lesion....I don't think the PET scan caused your cancer, just that it was too small to be seen by the scan.....cancer sores go away, no matter how many tomatoes a person eat....they don't last for months. 

Radiation is the true killer of cancer cells.....chemo sets those little suckers up for the ultimate "blow in the head" by the radiation.  Set your fears aside, and go for a total kill of all cancer cells.  Treatment isn't a picnic, for sure.....but you're hearing from those of us who entered one end of the tunnel.....scared as hell, and came out the other side knowing we did all we could to beat this thing.  You will do it too.....and be glad you did!!

p