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need your help and opinion

joannaw81
Posts: 95
Joined: Sep 2011

Hello. Some of you may know my mom's story. My mom had total of 3 surgies for head and neck cancer since 11/2010 plus radiation, no chemio. Anyway after the last surgery in March of 2012 here is the list of what happend:
4/12 MRI post surgury to see if any cancer is left over- something showed but Dr. thinks it is scars post surgury which did not heal yet
5/12 biopsy of that spot came back negative
6/12 PET scan to follow up-something still shows there, Dr. thinks it is post biopsy infection
9/12 CT scan-something still showes there, it is not bigger or smaller, mom doesn't have any sympthoms
10/12-schedules for PET scan, denied by insurance, doctor wants to do another biopsy...
what should we do? wait another 6 weeks or do another biopsy.
This is so hard, with my mom's history it's really tough to think that it is nothing that sowes up there (scar tissue etc) what is your opinion on this?
Thank you so much for you answers. Please know that I'm always thinking about all of you and keep you in my prayers.

katenorwood
Posts: 1737
Joined: May 2012

Hey there,
I was told that even if they biopsy, they may only get scar tissue and miss the reoccurrance if it is just showing up. You need to continue to trust your doctors or get a second opinion. If your Mom is symptom free, and the suspecious site isn't growing (changing) I would hold off on the biopsy....unless they can do a precise one. Tech., is advancing so quickly. Ask, and continue to ask until you are o.k. with the answers. Will be sending prayers for your Mother ! Katie

ratface's picture
ratface
Posts: 1209
Joined: Aug 2009

of the denied scan, it may take another six weeks and at least you don't lose an addtional six weeks appealing down the road. Nothing lost but a little time and phone aggravation.

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

What's the worst that could happen? And if they say yes - what a relief.

Tim6003's picture
Tim6003
Posts: 1489
Joined: Nov 2011

Get the biopsy ( but not a needle aspiration biopsy - it can miss any cancer bc of too small a sample) ..and if they have a scan for guidance...why would they not be able to get right in on the spot.

Appeal the denial...work it HARD. Call and even ask for the doctor who approved the denial to speak to you directly.

My humble opinion....be aggressive and get to the bottom of it ...nobody is a better advocate than you!

I am no doctor just sharing my opinion...

Best, and keep us posted.

Tim

Skiffin16's picture
Skiffin16
Posts: 8024
Joined: Sep 2009

I too would press for a bigger biopsy, that's the only way to definitively determine cancer that I'm aware.

But even from what you say, it's almost hard to suggest that for now.

As for the PET, at somewhere between $4,000 - $8,000 and just havinf one 4 months along with everything else showing negative for cancer, and no signs of growth...it's not really warranted.

Trust your MD's and or get another opinion.

Stay pro-active on monitoring it, but it could just be scar tissue.

When they say something is there, what exactly are they seeing to cause concern?

Best,
John

joannaw81
Posts: 95
Joined: Sep 2011

On the scans there is a dark spot that looks like a tumor,it's not really big however they can't feel it with palpation. In May my mom had a biopsy in 6 different places under general anastesia and it was negative although the doctor did say that he might have miss it. Anyway her doctor is away on vacation, we have an appointment on 11/7/12, we will go ahead with the biopsy once we see him. I'm just so worried. The only thing makes me wonder that if it has been there since April would it not grow, would she have still no sympthoms, before when she had cancer there was always a pain in the throat, ear etc. I think we should do biopsy just to be sure but my mom is not really up for it, she is just tired of everything and I understand her. I will try to talk her into it.

joannaw81
Posts: 95
Joined: Sep 2011

On the scans there is a dark spot that looks like a tumor,it's not really big and they can't feel it with palpation. It also light up on the PET but she was soon after surgury so it might have been inflammation. In May my mom had a biopsy in 6 different places under general anastesia and it was negative although the doctor did say that he might have miss it. Anyway her doctor is away on vacation, we have an appointment on 11/7/12, we will go ahead with the biopsy once we see him. I'm just so worried. The only thing makes me wonder that if it has been there since April would it not grow, would she have still no sympthoms, before when she had cancer there was always a pain in the throat, ear etc. I think we should do biopsy just to be sure but my mom is not really up for it, she is just tired of everything and I understand her. I will try to talk her into it.

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