Waiting Game

stevenl

Hi everyone,

Went to see my ENT yesterday, he gave me the results of my scan and scoped me with one of those new scopes with the camera. He explained that it was a sugar scan and how the whole thing worked. He put it on a number system for me saying that when the results come back as a 10 or 11, that is probably cancer. When it comes back as 1 or 2 it is not cancer. He said I came in at a 5 in the right tonsil area.

So he wants to do more biopsies of the right base of tongue and right oropharnyx. He also said after he scoped me that he didn't see anything unusual and that he thought there was less than 10% chance anything was there. At least he said that and it helped my mental state a lot.

Does anyone think I should be worried? Or was the scan done too early? I pray everything will be fine. Last rad = April 9th, scan May 27th.

I have the biopsies on Monday. So the waiting game begins again.

Best to all,
Steve

Glenna M

Too soon...
Hi Steve,

I am 8 and a half months post treatment and will be having my 3rd CT scan in July but have not had a PET scan yet. My scans have been coming back good and I am still in remission so I'm not worried about having the PET done yet. I personally think they did your scan too soon but I'm no doctor ;-) this is just my opinion, for what it's worth.

I wouldn't worry too much yet, especially since you are having a biopsy Monday. My ENT did a biopsy about 4 months ago because he kept seeing swelling in my larynx and was concerned that the cancer may have invaded the tissue of my larynx. Scared the h*ll out of me but I feel so much better having had another biopsy and now know definitely that what he was seeing was just swelling not cancer.

Please try to relax (easier said than done, I know) and enjoy your weekend. I will be praying for good results for you.

Take care and stay strong, Glenna

D Lewis

My experience
I am four weeks out from treatment today. Stanford said that they wanted to scope at six weeks, would consider doing an MRI at eight weeks out, but that they do not want to do a PET-CT until the three month point.

Deb

Pumakitty

D Lewis said:

My experience
I am four weeks out from treatment today. Stanford said that they wanted to scope at six weeks, would consider doing an MRI at eight weeks out, but that they do not want to do a PET-CT until the three month point.

Deb

Deb
Thanks

You answered some of my questions also. My dad should finish up on the 25th and I was wondering about a time frame for tests also.

MarineE5

No sooner than 3 months
Hi Steve,

I echo what others have said in the past, scans any earlier then 3 months can cause a false positive. I was fortunate to have a Surgeon and Radiation Oncologist that were believers of that. But, I guess some Doctors work differently then others.

I know that we go through all the surgery, then treatments in hopes we are free of any reoccurance. The stress level meter gets pegged when we hear anything other then " All Clear "

I Pray that it is the early scan test that is a false reading. I know when my brother had his prostate removed, he had to have blood work done after that. The Surgeon had him get some blood work done before 3 months. It came back high even after the surgery. I mentioned to him that he should not get radiation until a second blood work was done in another 3 months. His radiation oncologist agreed and the results were good on the second PSA level. He then went into the wait and watch part of keeping an eye on the PSA levels after the surgery.

My Best to You and Everyone Here

Skiffin16

My Vote is Too Early
My vote is that it's probably too early for the best results at this point....

CajunEagle

Pumakitty said:

Deb
Thanks

You answered some of my questions also. My dad should finish up on the 25th and I was wondering about a time frame for tests also.

Pet scan
I finished up June 8th of 2009......had my 1st Pet Scan on Sept. 9th, of 2009. Almost exactly 3 months (totally negative and no "hot spots"). Steve's was way, way too soon in my opinion.

Larry

Hondo

Hi Steve
There is a lot of scar tissue still there and sometime it will show up as cancer or give a false positive. As in my case the PET scan and the biopsies showed positive but there was nothing there. That is when the doctors at MD Anderson told me that the old cancer scar tissue can still show up or light up as cancer. I know it is hard not to worry so just hang in there and keep praying, you are still on my pray list.

Take care

Skiffin16

Hondo said:

Hi Steve
There is a lot of scar tissue still there and sometime it will show up as cancer or give a false positive. As in my case the PET scan and the biopsies showed positive but there was nothing there. That is when the doctors at MD Anderson told me that the old cancer scar tissue can still show up or light up as cancer. I know it is hard not to worry so just hang in there and keep praying, you are still on my pray list.

Take care

Ditto
Same here Steve, Power of Prayer....you have mine as well.

micktissue

Less than 7 weeks WTF?
Hey Steve. Did your Dr say why he wanted the PET at the 7 weeks mark (actually 1 day less than 7 weeks)? As others have noted, the standard is 12 weeks, and I think for the main reason you are still healing and false positives might happen more often.

Hang in there man.

Mick

rmkbrad

Hi Steve
I have my PET next week which will be 6.5 weeks out for my neck, the radiologiest said not to expect a clean scan that I would be still healing. She also told me that it will give them a good idea how the treatment went. Stay stong and prayer are with ya.

Brad

Greg53

rmkbrad said:

Hi Steve
I have my PET next week which will be 6.5 weeks out for my neck, the radiologiest said not to expect a clean scan that I would be still healing. She also told me that it will give them a good idea how the treatment went. Stay stong and prayer are with ya.

Brad

PET kinda early
Steve,

After all the discussion on here previously about what is too early or not, I asked all 3 of my doc's what was the correct protocol in their opinion. They said 3 months was the earliest you should have a PET. If you remember I had my first CTscan about same time as you. They say they do this one at 6 weeks to get a baseline for the remaining scans. My CT came back clear, but I don't know if that means anything. My first PET is scheduled for 3 months out. Don't know if that helps or not, but that's what my team of doc's told me.
Good luck!
Greg

Kimba1505

Greg53 said:

PET kinda early
Steve,

After all the discussion on here previously about what is too early or not, I asked all 3 of my doc's what was the correct protocol in their opinion. They said 3 months was the earliest you should have a PET. If you remember I had my first CTscan about same time as you. They say they do this one at 6 weeks to get a baseline for the remaining scans. My CT came back clear, but I don't know if that means anything. My first PET is scheduled for 3 months out. Don't know if that helps or not, but that's what my team of doc's told me.
Good luck!
Greg

Support, but no input.
Steve, I want to respond to let you know I am with you in your pursuit of this matter. I will leave the feedback and input to those more experienced than me. My two cents is that doctors cover their a**es...and he/she would not throw out 10% carelessly. Deep breaths.
Kim

Kent Cass

Kimba1505 said:

Support, but no input.
Steve, I want to respond to let you know I am with you in your pursuit of this matter. I will leave the feedback and input to those more experienced than me. My two cents is that doctors cover their a**es...and he/she would not throw out 10% carelessly. Deep breaths.
Kim

Too Early
Has to be, Steve. My first Pet Scan was 2 1/2-months after my last rad, and the CT was done minutes after the PS. Results were "something may have shown" under my tongue. My ENT was so concerned- that he didn't think I needed my next PS/CT until 8-months later!!! Yep- said he wasn't concerned with what might have "shown." And that PS/CT of 8-months later: got the results mid-April, and all was clean...Anything that supposedly shows only a few months after treatment must be held highly-suspect, and likely should only be monitored to see if there is a change in it's size. I think it very unlikely that you have anything to worry about, Steve. I got the impression from my ENT that any PS/CT done to the area that gets the treatment should not be done for a minimum of 6-months after the end of treatment.


Believe

kcass

debbiejeanne

steve, i also had a pet too
steve, i also had a pet too soon and it came back positive (falsely). I think your scan was probably also done to early and you have nothing to worry about, altho I know you will worry. Try not to let your thots run away with you. I really think all will be fine. You are in my prayers.
God Bless you friend,
debbie

santa6

Too Early
I'm not a doctor either, but from what I've learned and experienced your scan was too soon. I had a PET at just about 3 months out and we had a false positive. I'm seeing 4 Drs at the James Center at OSU and the lead, who is an ENT/Oncologist/surgeon doesn't even believe in PETs. Mine was prescribed by the Medical oncologist - now we have switched to MRIs. The PET can show pickup for 100 reasons other than cancer - they're expensive and prone to false positives. Our plan is to do MRIs every 3 months for first two years and probably one PET every 12 months. Then MRIs for every 6 months for another two years, then once per year thereafter.

I wouldn't be worried at all at this point.