I DESPARATELY NEED YOUR KNOWLEDGE - PLEASE HELP ME

PET Results
At this point I wouldn't worry unnecessarily. There is varying opinions between my doctors on how soon to do a PET scan after treatment.

My treatment was completed June 18th 2009. My oncologist setup and had me do a PET scan the latter part of August. For me the results were clean with no signs of activity or cancer.

My ENT feels this is too soon having the chance of residual junk for better words left over from healing and the effects or damage incurred from radiation.

I believe the "normal" period is probably somewhere between 4 - 6 months post treatment from most that I've read on this forum.

So that being said, there probably is a good chance that what he is telling you is true and correct.

John

False Positive
Deb,

Two and a half years post-treatment and I still lite up the scan. All my docs now write it off as scar tissue. Your're fine. Enjoy your good health, Rich.

debbiejeanne said:

Thank You
John, Donna, Rich,
Thank you so much for your replies!!!! What each of you said makes very good sense and I do feel better. The ENT scoped me today and he didn't see anything but said my throat is still very swollen. He also scheduled me for a biopsy for next Wednesday at 2:30. Sooo, I will still be a little worried until that is over but I also know that God always takes good care of me. It sure is great having friends here who know what I'm feeling and unstand what I'm asking. Thank you again!!!
God Bless You,
Debbie

Similar results
Hi Debbie, I also had SCC of the larynx (voice box) and finished my rads in August'09, after that I had targeted rads for the NSCLC in my left lung which I finished in Sept.'09. My ENT is still seeing swelling and some abnormalities on my larynx so he did another biopsy to make sure the cancer hadn't invaded the tissue of the larynx. Biopsy came back clean so I am still being monitored by my ENT each month. I would say the swelling after such a short period of time is normal.

Please try not to worry too much (easier said than done until you get the biopsy results, I'm sure you will get good results and find out that it is only scar tissue.

Take care and let us know what your tests results are.

Glenna

Glenna M said:

Similar results
Hi Debbie, I also had SCC of the larynx (voice box) and finished my rads in August'09, after that I had targeted rads for the NSCLC in my left lung which I finished in Sept.'09. My ENT is still seeing swelling and some abnormalities on my larynx so he did another biopsy to make sure the cancer hadn't invaded the tissue of the larynx. Biopsy came back clean so I am still being monitored by my ENT each month. I would say the swelling after such a short period of time is normal.

Please try not to worry too much (easier said than done until you get the biopsy results, I'm sure you will get good results and find out that it is only scar tissue.

Take care and let us know what your tests results are.

Glenna

Me too
Hi Deb, I finished chemo and rads for BOT SCC back in October. Had first PET middle of December. Sure enough, PET showed uptake at BOT and in right tonsil. Needless to say, I was a little worked up. ENT can see nor feel anything, all looks good. CT scan normal as well. He confered with another Doc and together thay agreed that it was inflammation from rads. These areas surely received a huge amount as tumor on BOT was on right side. I am sure that my next PET will be better as this tissue will have had more time to recover. ENT appt. this morning and Doc said I am doing great. Once again, looks and feels good and he sees no reason to do anything except be vigilant. My oncologist says this of my ENT: He has never met anyone who hates cancer as much ENT does. I'm glad he's on my team. I'll go back again in month, do whatever he says. Another PET in April to be cautious. I have learned PET is not the be all do all but needs to be evaluated with all the other pieces of information that Doc's have gathered. Good luck tomorrow, keep us posted.

Mike

Hi Debbie
Like everyone is saying don’t get stressed out over it, I am 4 ½ years past my last treatment and every PET scan I do is also lit up in the same place. The Doctors at MD Anderson believe it to be left over scar tissue.

Take Cane and God be with you tomorrow when you see your ENT

debbiejeanne said:

thank you
Thank you, Hondo!!!!!!!!!!!!!!!

PS Results
My first post-treatment PS was 3 months after, as your's was. Could be on the mark- too soon, and maybe your Dr. is right. My Oto said he wasn't concerned with the radiology findings- that something may have shown under my tongue. He didn't say anything about residual rads, but did say the area in question is an area of false positives. You mention the 35 rads- did you also get chemo?

Debbie- rest easy. You've just completed treatment. The likelihood of anything showing so soon after treatment really is very small, and unlikely as a true positive. If anything, I would be suspect of the Drs., and PS "interpretation", if they say it is a definite true positive. The odds are overwhelming that anything which may have shown is nothing more than a false.

Believe.

kcass

frank10g said:

Do I have to?
friends,
Do I have to have a PET scan after finishing treatment ? My doctor told me 6 weeks post treatment is the soonest I can have one but since it will give my body more radiation, a CT scan is probably enough. It is up to me. What is your advice?
Thanks,
Frank

Hi Frank. My Doc says 12
Hi Frank. My Doc says 12 weeks after last treatment is the soonest. 6 weeks seems way too soon by that standard. PET is the 'gold standard' for checking for mets, so not sure what your Doc is thinking.

Best,

Mick

frank10g said:

Do I have to?
friends,
Do I have to have a PET scan after finishing treatment ? My doctor told me 6 weeks post treatment is the soonest I can have one but since it will give my body more radiation, a CT scan is probably enough. It is up to me. What is your advice?
Thanks,
Frank

Hi Frank


I agree with Mick 6 weeks sounds way too soon your body is still cooking. I did a CT right after chemo was finish, but the PET was 12 weeks after.


Take care my friend

debbiejeanne said:

Kent, no, I didn't have chemo, thank God. You know what I don't understand, if the PS is so unreliable, why is it being used? I read on several different rooms here how wrong the scans are. Well, we're talking cancer so why are docs using a tool that can take our life if it is wrong????? I don't understand why anyone in power like a doc would use this scan.
Anyway, Kent, thank you for your post. I love my new family so much!!!

God Bless Us All,
Debbie

PET Reliability
Debbie, I believe the PET to be highly reliable. Again, it's just another tool, it should be used with knowledge and experience. I don't think anything probably is as good as hands on experience and knowledge inconjunction with such tools. It does lite up primarily as a result of high celluar activity in the tissues (it measures and looks at a lot of things other than just glucose). The tracer they put in you effects many things.

It lites up from high celluar activity which is characteristic of cancer. But it doesn't mean that everything that lites up is cancer. When I had my first, it lit up in the areas that I had cancer, but it also lit up in my lower stomach becasue I was having a bout with diverticulitus at that time also.

But anyways, due to the damage by radiation and the healing process the PET can pick up all of that stuff going on as well. That's why it's better or more reliable given time to get done "cooking" as HONDO says. Your body is still undergoing changes, healing, damage, scarring, etc..

From what my ENT says between the chemo and mainly the radiation, that my throat will have swelling, irritation, and a lot of diffrent changes for a good year after I finished the radiation.

JG