How my Doctor Ruined Christmas

Marty36

I got some lousy news at the doctor yesterday. I have to have another surgery right after Christmas on my tongue to remove another area. The PET/CT scans showed no new areas of concern, but a tiny area that showed up on my post-surgery tests in June is still there. Recently, it's been sore and I was hoping it was just scar tissue or something. But my ENT thinks the nodule is growing and it needs to be removed. Not sure if it is cancerous--although I think he believes it is--but they want to remove the small area plus some more just to make sure they don't leave any potentially cancerous areas.

The area is only about 8mm and is on the edge of the area where there were clean margins when they removed a larger tumor via TORS. The area is accessible and the surgeon thinks it will be easy to remove. They will test it during surgery and then, if it is cancer, continue to remove a larger area--about the size of a quarter--to make sure they've gotten everything. The surgery is right after Christmas.

Up until this point, my treatment has gone so well. TORS surgery, neck dissection, 42 radiation treatments, 2 Cisplatin rounds over four months and feeling really well. Was able to go on vacation in Europe two months after finishing rads/chemo. Taste is back. No pain anytime (except for post-surgery). So it's hard to accept I may be back to the beginning. Not sure what else they will be able to do after that because radiation may not be an option again. I meet with the radiologist next week and then with my oncologist. For the first time since this all began, it's hard to focus on the positive no matter how well things have gone so far.

Daddisgrl

Marty; have you thought
Marty; have you thought about a 2nd opinion? You don't say where you're being treated; so I don't know if it's a larger university

Marty36

Daddisgrl said:

Marty; have you thought
Marty; have you thought about a 2nd opinion? You don't say where you're being treated; so I don't know if it's a larger university

I"m being treated at
I"m being treated at Georgetown. I have been contemplating a second opinion, although I want to talk to the rest of my team to gather their thoughts and see if there are other options. I only lost about 10% of my tongue through the first round the ENT said it wouldn't be that large this time since the area is so small and the area on the PET hasn't grown in six month.

It's just hard to know my life plans will be on hold, yet again. I was just at the point making plans and goals six to eight months, even a year out. Now everything is on hold, it seems.

longtermsurvivor

Man it is hard to focus
when things like this pop up. But, remember not to cross any bridge until you get there. If this is a recurrance, it may be as simple as simple excision, no other treatment required. Or brachytherapy. Shoot, there are a number of ways to skin this cat. And maybe, just maybe, it will be benign.

Nothing is ever over, until it is over. And the best part of this is, you are doing your part, which is to follow up timely, and listen to the advice you get.

BTW, I'm headed into IMRT soon. This will be my second time around with radiation. Not that unusual nowadays.


Pat

Hondo

Hi Marty
Sorry about the bad news but don't let it wreck your holidays, I know it is hard as I heard the same news three times about my C. You kicked its butt last time and you will kick its butt again. I agree that you might want to get a 2nd opinion before doing anything. As with a lot of my PET / CT scans would light up areas of the nasal but it was not C it was just inflammation and scar tissue.

Wishing you well
Hondo

sweetblood22

Marty
Sorry to read that you are going through this again. Hoping some how it will not ruin your Christmas, but some how, by some miracle, make it a more meaningful, Christmas with youband your family. I remember going through the process of getting diagnosed at this time of year in 2008.

Jimbo55

Marty
On the plus side, your doc's seem to be on top of things and have caught this early on.

It never hurts to get a 2nd or even a 3rd opinion. My first PET/CT scan at 6 months also showed a hot spot in the same area on my tongue. Surgery was recommended. The doctors I saw for 2nd opinions recommended a follow up MRI, which was clean. You might ask them to give you an MRI to confirm the cancer diagnosis.

I had lingering inflammation showing up on my PET/CT scans until my 1 year post treatment scan, which was finally clean. Hope everything works out well for you. Cheers.

Jimbo

jim and i

What a Bummer:(
This time of year is especially tough to have to worry about the outcome. I am praying for an enjoyable Christmas and a positive outcome from the surgery. As for planning ahead; it can be frustrating.

Debbie

Pam M

"Life's Not Fair"
First thought is "Bleep - I would think you'd DESERVE to not have this stress". But we all know that this all has nothing to do with what is deserved. I'm with the others on the better safe than sorry side - hoping that in January you're telling us that you're glad you had the "tissue" removed, even though it turned out to be nothing.

Marty36

Pam M said:

"Life's Not Fair"
First thought is "Bleep - I would think you'd DESERVE to not have this stress". But we all know that this all has nothing to do with what is deserved. I'm with the others on the better safe than sorry side - hoping that in January you're telling us that you're glad you had the "tissue" removed, even though it turned out to be nothing.

Thanks for your support
I'm in a much better place than I was a few days ago. I had a good visit with my radiological oncologist and he felt things looked really good. He supported the idea that the spot on the tongue is residual and could be a false positive, but removing it because it is sore makes sense. He felt it was very unlikely that radiation would be needed, which was a relief. I'm definitely in a "this is the final step" stage instead of the "we are starting all over" stage.

I have to start physical therapy for my neck which is very tight, as well as having some lymphadema. The resident was concerned it was a little late to be starting PT, but I've been going to a trainer at the gym and working on my range of motion, so hopefully that has helped.

Again, thanks for everyone's good thoughts.