Hi Everyone,
I know some of you know we are going through this. Kevin had a spot on his PET that we are looking into. I know all about the false positives, I am just trying to find the patience and peace while we ride out this waiting period. Tomorrow we have an MRI at 10:30. Then we wait to see what they think of that. If they deem necessary, the biopsy will be Wed. So far the new ENT is saying he thinks we will not need a biopsy. He doesn't want to carve up his tongue for no reason. Thus the MRI.
I need to find peace if that is the decision that is made. It is not my tongue so I can't make the decision for Kevin. If anyone has had a second biopsy done in the same spot as radiation happened, how bad was it? Was it super invasive and was the recovery long? Maybe answers to those questions will help. The ENT used terms like hacking him up for no reason, and fileting his tongue for no reason.
Any input is appreciated.
I AM breathing Eric, just want to really make an informed decision. Even though the desision is not mine to make!!
Thanks,
Kathy

Where is the spot? His original tumor was BOT ? Why would they have to hack? A biopsy is just a small sampling and he's not previously had surgery. a biopsy precursor to potentially more invasive surgery - though if they do go in and remove what they see then they may even get clear margins. I haven't had a radiated area biopsied before but anyone who's had salvage surgery might be able to give you a heads up on the healing time, ultimately, you know your stuff, and with his original ct being clear, two months post treatment, and it not having been PET... I would think its likely been there all along and hopefully just healing or scar tissue, or inflammation... Hugs! God luck Tuesday.

Sounds like this spot if on his tongue. The ENT certainly has a way with words (NOT!). Anyway, dont panic over this. All too often a PET will light up and inflammation or scar tissue. Its happened to me. Ive found this especially true when its done closely after finishing rads.

Hope its nothing, best wishes!!!

Kathy, you are doing just fine my dear friend and I'm proud of you, Kevin is very lucky to have such an astute and caring caregiver!

You are doing everything right, the waiting game sucks and plays horrible tricks emotionally. My advice is to try and keep busy, like arts and crafts (underwater basket weaving is da bomb YO!), exercise, SEX!!! (my favorite!), games (can I get some Canasta up in here!) and whatever you can to get by until the results comeback.

All we can do is take one step at a time. Sometimes those are slow painful steps, and that's why we have each other to lean on for support and advice. Keep on keepin on my dear friend, we are with you and Kevin every step of the way!

Love ya Lady!

Eric

Hi Kathy,
I know that this is scary. Breathe. Take it one day at a time.

My Kris also had a BOT tumour treated with rads and chemo.
At his routine checkup and scope the ENT saw a new ulcer in the same place as his original tumour.
Kris then had this new ulcer biopsied under a general anaethetic. This caused him absolutely no problems. No pain, no bleeding. A biopsy only removes a small portion, it does not cut hugely into the tongue or carve it up. It is a simple procedure .
Kris also had a CT which showed a small local reoccurence at the same site of the original tumour. This together with the pathology of the biopsy was what was needed to decide the next option for treatment.

As nothing has been seen on Kevins scopes maybe thats why they want to wait until after the MRI. Should this show just healing inflammatory tissue, then a biopsy may not be needed.

All my fingers toes and legs crossed for you both.
Hugs to you,
Tammy

Hi Kathy,

The spot on the tongue is biopsied they only take a scrapping. I had that done to see if I had Cancer. There was nothing to it. The tongue is not carved up I don't know what your ENT is thinking saying that.

I only had a PET scan when I was first diagnosed. After surgery I had a CT Scan after 6 months, then once a year with contrast and without contrast from the waist to the head. My CT Scan in Oct. showed I have scar tissue and some inflammation wonder why your ENT didn't do a CT Scan.

My Surgeon told me he doesn't do PET Scans after the first, I never asked why but after reading on here I know why, false positives.

Hope all goes well.

Take care,
Connie

This spot is BOT again, but a little more in the middle of his tongue. The first was on the right side.
Thank you soooo much for your responses.
Will be in touch when we hear something.
Love you guys and am so thankful to have this site. Thank you Brian!!

Short answer: NOPE
When my MRI indicated the cancer had come back in the same spot (BOT) that had been radiated the first time, my surgeon insisted on a biopsy before considering salvage surgery. I went into the hospital that morning, strolled out that afternoon, nursed a sore throat for a day and was back to "normal". Good thing too, as those were the last three weeks I would eat or drink, unbeknownst to me.
Keeping fingers crossed that Kevin's MRI is good
Charm

Thank you Charm...I think. ;o)
MRI is done. Waiting for the phone call. Sigh.....
Yes Eric, I'm breathing. ;o)

Inflammation!!!!! Not doing a biopsy as of now. Will check another MRI in 3 months. Phew!!!

Thank heavens! Glad to hear the good news!

Congrats Kathy! So glad it turned out to be nothing serious. Just another false positive PET. Those darn things can scare a person to death!

Great News.....

Take care,
Connie

Wonderful news Kathy...now you can breathe!
Cheers
Gabriele

Absolutely fantastic news.
Now, enjoy your lives.
Tammy

That's so awesome! Hugs!

Thanks everyone. We now know what a false positive feels like! Maybe next time we will be more able to remain calm....doubtful, but maybe!! Thanks again for the support. Onward we go...

Wooooooooo hooooooo!!! This makes me so happy!

YEAH!! I am so glad to read that. I was goint to tell you I had a Hot PET scan, and a visible area that was causing apain. We were all worried about it being cancer again. I did have the surgery to remove that portion, and it was necrosis, not cancer. The PET that was HOT was the inflammation from the area around it.