Hi everyone, just have a few questions about the pet scan and wondering if anyone can help.
My mother just had surgery on her tongue 2 1/2 weeks ago. Got clean margins. Stage 1 or 2. Not exactly sure on staging. The patho report says T1 tumor. But the ENT Dr. that did surgery told my dad it was a stage 2. ???
Meets with the RO about 4 wks post surgery. In April. Had a CT of neck and was normal.
She will be having radiation soon.
Do they do the pet scan before radiation starts?
And how soon can it be done after surgery?

So far we know she is going to have radiation.
Chemo has not been mentioned.
I'm just wondering with a stage 2 and this is a reoccurance that maybe she might need chemo?
Any suggestions from anyone would be greatly appreciated.
My mom is 70 and in otherwise good health.
Had SCC on right lateral tongue in 1986 and 1988.
Surgery both times. Been fine until 2003 another surgery on tongue for dysplasia.
Now 3 years later SCC back again had 1/2 of tongue removed.
The patho stated ulcerated moderately well differntiated keratinizing squamous carcinoma.

I will be asking the RO all of these questions when we go see him. I am just wondering if anyone see's this as being a very aggressive cancer. I just want to make sure we do the right treatment so this does not come back again.

I read a lot of people on here getting chemo and radiation for stage 2.
Thanks for any input you might have.


Michelle

Michelle,

I am one of those people (Stage II with chemo and rad) but I'm also not a doctor so take what I say here for what it's worth. I got mixed opinions about the need for chemo along with radiation. Even the doctor at a top CCC who recommended the chemo acknowledged it was an aggressive recommendation given my stage. He recommended it because there were some features of my tumor (most notably perineural involvement) that indicated a worse prognosis even though it was Stage II and after doing my own reading up on it and talking to my medical oncologist here who knows his stuff pretty well, it seemed like a good bet that adding chemo would improve my chances of not having a recurrence.

My personal logic after reading here about what I could expect when going through treatment was also that radiation alone was likely to make me feel miserable and if I was going to be miserable anyway, why not add chemo on top of that if it might help?

It seems to me that in your mother's case, because it is a recurrence, there might be an argument to be made for having chemo but I'm guessing it's one of those things where even experts could disagree. Still, you only get one shot at using radiation to wipe out the cancer and the chemo helps it be more effective. Is your mother being treated at a CCC? If not, I'd certainly recommend you get a second opinion from one and it can't hurt, even if she is at a CCC, to get a second opinion from another.

Nelie

There is not a direct correlation between the "T" number and the staging. There are more detailed explanation on the TMN system and staging elsewhere on the site.

The PET scan should have been done in the initial workup before they did anything.

PET scans done soon after surgery and/or radiation will often show false positives due to increased uptake in scar tissue.

Her staging is on the fence for radiation and chemo See http://www.nccn.org/professionals/physician_gls/PDF/head-and-neck.pdf ORPH-2

Radiation and chemo is a pretty brutal treatment for a 70 year old.

Actually I think it's on the fence for chemo but not radiation, or am I confused (very possible)? Those guidelines seem pretty clear that if there's a locoregional recurrence and no prior radaition, the patient should have radiation. Or does this not count as a recurrence because her first SCC was so long ago?

Nelie

Nelie,
you are correct if this is in fact a recurrence (see ADV-2). But is it a recurrence? The original tumor was cured in 1988. Making her a 5 year survivor before any other issues, like dysplasia. So does ORPH-2 apply or ADV-2? These are question to ask the doctor.

I need to disclaim here once again, that none of us are doctors. We only share our experience, strength and hope and whatever limited knowledge we have. Please DO NOT MAKE medical decisions based solely on what you read here. The forums goal is to arm the patient/caregivers with knowledge to be their own advocate and subsequently explore and discover all of the treatment choices available to them that will give them the highest chance of survival.

It sounds more like an academic discussion since evidently the decision to go ahead with radiation has already been made. The original post was requesting input.

To answer one of the original posters questions, in my personal opinion and observation, tongue cancers appear to be the most aggressive type. I asked my H&N surgeon about this and he stated it was the nature the fibrosity of tongue tissue, making it more difficult to treat.

Maybe Brian can weigh in on this since he has VASTLY more knowledge than me..

I'm definitely not a doctor (pretty sure I said that before)but definitely curious anyway about the answer of whether a doctor would consider this a recurrence or not when it's well past 5 years since the original cancer.

As for whether the treatment (rad and chemo) is too brutal for a 70 year old, I may be a bit biased on this. My grandfather, who was a heart surgeon himself, at age 81 or 82 had open heart surgery to have a valve replacement--the kind of surgery where they ice your body temp down really low then stop your heart for a while (if I'm remembering right it was like 20 minutes or something!) then start everything back up again. He was in relatively good health (especially for an 80 year old) going in to it, but even so he recovered remarkably quickly, and lived to age 98 which he never would have done without that surgery and I think they were 17 or so pretty good years for him.

My mother and father both turn 70 this year and my mother (my grandfather's daughter) is also in pretty good health for someone that age and if she had oral cancer (God forbid), I would still be supporting aggressive treatment for her on the theory that it could quite possibly give her another decade or two of good life ahead of her and a maybe a death that is because of soemthing else not quite so nasty.

I think I am someone who has had a harder time with the after-treatment effects of chemo and radiation than many people here but even if I never get better than I am now (and I will still get better) and have to live with swallowing so bad I need a feeding tube, a voice that gets hoarse easily, and a body that still gets tired more easily than normal, it is worth it to me if it gives me a decade or two (or hopefully even more in my case) of cancer-free life.

I just don't think this is a disease you want to die of at any age.

But that's a judgment every person has to make for themselves I think--the risks and hardship of treatment vs. the risk this nasty disease comes back and takes you to your grave.

Nelie

I am not versed well enough to tell you which guidelines this should follow. But I do have questions. Of course protocols in 88 were different than now. But having a surgical only solution is in this case one that appears to have worked, more than a decade cancer free. I, as most of you know, am not fond of single modality treatments, particularly surgical. It is hard to believe though that any micro-mets would be sustained for more than a decade without manifesting themselves

When I mentioned brutal, I had IMRT, was 55 yrs old, in very good physical condition, mental attitude and spiritual program going into this. I was totally disabled for almost 2 years. The Cisplatin, I am sure, made it 1,000 times worse (they had to shorten my protocol by one treatment), maybe the rad by itself would have been far more tolerable, I can only speculate. Danny Boy had basically the same treatment and cruised through it. We all respond differently to treatment.

My father lived to 92 before he died of non-Hodgkins lymphoma. He decided that he didn't want to go through chemo at his age and took very little pain meds because he wanted to stay in the now. He had multiple other medical issues as well but was viably healthy and active well into his late 80's. Married and outlived 2 wives (my mother, who had multiple bouts with cancer - even melanoma, who died of a heart attack at 68 and my step mother (former smoker - who smoked the magic number - 25 years) who died of lung cancer in her early 70's). I had a sister who also died of lung cancer when she was 47.

Life by it's very nature is a terminal illness. Even though I appear to have been fortunate to have a "complete response" to treatment, I don't in any way, shape, form, or means, translate this into having the same life expectency of a normal person. I assume that the rigors of the treatment or some distant metastesis, will take their toll eventually but today I have to do what is in front of me to be done. It's not up to me, but what I do with it is.

Thank you all for your responses. This gives me a lot to think about.
I am going with my mother to see the RO. I already have a list of questions for him.
I am going to make sure she does get a full body work up like Brian suggested.
Like I said before my mother has not smoked a day in her life.
She had been cancer free about 15 years. Until 3 years ago in 2003. I found her patho report from her surgery and this is what it said.
High-grade dysplasia/carcinoma-in-situ-arising in backround of mild to moderate squamous dysplasia.
2.0x1.9x.3 cm I was wondering if she should have received radiation in 2003.
My mom is 70 and in pretty good health. She lost about 9lbs in 2 weeks just from the surgery.
She is starting to eat more things but she takes small bites. I couldn't imagine if she did have to have chemo. I agree that would be a pretty brutal treatment for her.
Thanks again for all the information.
Take care everyone Michelle