Hiya!

My name's Jo. I'm forty and I have polymorphous low-grade adenocarcinoma (or, rather, HAD that diagnosis!). Nine days ago I had a 1 x 2 cm lesion removed from the right side of my soft palate, along with most of my soft palate and a truly shocking amount of my hard palate, and one tooth. And my uvula. And I'm sure I've forgotten something there, though I'm fairly sure the surgeon left my brain alone.

Ironically, I work as a surgical ICU RN at a huge academic medical center. Two of our areas of expertise are head and neck cancers and neurosurgery; we also have a NCI-recognized CCC center. The guy who did my surgery is one of the few people to have seen hundreds of PLGAs over his career.

Which brings me to this question: today was my first follow-up appointment with the surgeon. My PET, MRI, and lymph biopsies were all clear--we knew that going in to surgery--and he was very aggressive about the resection. He got excellent margins, better than a centimeter each way. He told me that he'd run it by the head/neck oncology guys and the tumor conference this week, but that in his opinion, I would not need radiation. His exact words were, "We'll see what the conference says, but if it were my head, I wouldn't radiate. The side effects would be much worse than any extra certainty you'd get."

The tumor itself only flared at 3.8 on the PET, and though there was some perivascular and perineural involvement in the first biopsy specimen, that specimen was taken from the center of the lesion. The final diagnosis from path is low-grade, period.

I would like to avoid radiation, frankly. I'm terrified of it, mostly because I see the worst-case scenarios over and over at work. Besides the stomatitis and the esophagitis and all that, though, is the feeling that if I can, I'd like to put my head and neck through as little trauma as possible. I know that this type of tumor can recur, but it'd be slim chances, what with the small size of it and the good margins.

Anybody got any experience with this sort of thing? I'd be interested in hearing your take on this.

And boy do I wish I'd found this form six weeks ago, when I was first diagnosed.

Hi Johanne,

Please see my response to post to Newly diagnosed from cyndie52. All I can advise it what my sister's experience was. My personal feeling it do what you can to remove every cancer cell in your body. This is an aggressive cancer, and any reoccurence is not good. Hit it with everything you can at the start. My sister was concerned with the after affects and quality of life with going through the radiation. She lost the battle, perhaps by delaying the radiation, no one will know. I just know I miss her deeply and no one will replace the hole in my heart. Everyone needs to decide the quality to life they will accept.....my best wishes to you.

Nancy, thank you so much for responding.

I am so very sorry for your loss. My sister has been a huge source of strength and humor for me through these last couple of months; I don't know what I would do without her. I can't imagine the depth of your grief; please know I'm thinking about you.

J

Hi Jo -
My husband didn't have the same type of cancer you did, but just let me give you his story. His SC cancerS were on the cheeks, gums, and one in situ on the lip. He lost a bit of jaw and 3 teeth along the way. As yours was, the pathology report showed clear margins, well differentiated, and following neck dissection (with the first cancer), nodes were clear. Because they were all caught very early, surgery was his only treatment each time - never had rads/chemo. He has had good (certainly not perfect) check-ups since then (one dysplasia biopsy recently). I know most people in here have had radiation, but I just wanted to give you my husband's story too. Had any of these reports showed a higher stage, lack of clear margins, etc., he would have gone thru treatment. Hope your consultation goes well for you - please let us know : )

Jo,

Wow, you won the lottery, only not the lottery anyone would really want to win (sorry favorite quote from a friend of mine referring to my cancer). I say that because as you know, less then 1% of all cancer's diagnosed in the US are salivary and only 5% of those are found in the minor salivary glands. But that doesn't mean you're not lucky...in a way...remember this is all relative.

Most of the feedback you will get on these boards will be from Squamus Cell survivors or caregivers, there are a few MEC survivors here as well (Esikon is the only one that comes to mind at the moment) so they will have a tendancy to give advice from their experience. It's not an apples to apples comparison however as the cancers are totally different. SCC and MEC are much more agressive then PLGA.

Normally I dislike medical professionals and the stupid stuff that they say to patients. I do like that your Dr put himself in your shoes by saying "if it were my head" I wouldn't do radiation. Wow, hope that not all Dr's are insensative dumb asses!

As a SCC survivor that had radiation, it was brutal and I wouldn't wish it on an enemy. The after effects are harsh and many you'll have to live with for the rest of you life, however long that is. I would do it all over again if put in the same situation to extend my life though.

In my opinion, you've done everything right as far as your course of action. You've gotten the best medical care available to give you the best advice and the best chance at survival. If you trust this Dr, I would take his advice. If you don't trust in your medical team, or there is a better program out there, then get a second opinion.

That being said, if I were in your shoes, with your cancer and with top rated cancer program, I would pass on radiation. If I were speaking to a SCC patient, I would tell them to zap the hell out of it.

Welcome to OCF, glad you found us, sorry you had to.

Eric

Hi Jo- Sorry you are going through all this! I am also an ICU nurse in an adult med-surg unit. We don't see much of this at all in our unit, though, unless the patient is there for some other problem. I certainly don't blame you for not wanting the radiation-- thank goodness your CA is low grade! I'm not familiar with your type of cancer. I have high grade mucoepidermoid CA. My case has been discussed by two different tumor boards-- one at Shands Jax and one at Moffitt Cancer Center, where I opted to have my surgery. Even though I am apparently stage 1, because MEC is so agressive and mine was high grade, both tumor boards recommended radiation for me. I have to admit I dread it, but I don't feel it would be wise not to do it. Since you are at a CCC, I'd wait and see what the full tumor board has to say about it and go with that. How fortunate you are that your surgeon has dealt with so much of your type of cancer!!

Good luck to you!

Lostpassword, thank you for telling me about your husband. It makes me feel better to know that not everybody gets radiation no matter what.

And you *bet* I'll let you know what the itty-bitty tumor committee says. Thanks!

Eric, thanks. In a couple of days of lurking and reading, I noticed that there were a bunch of SCC and MEC survivors here; I sort of hoped that maybe I'd bring one other lonely PLGAer out of the woodwork.

You're so right that I've won the statistical lottery from the get-go. I mean, thirty-six thousand salivary gland cancers in this country in a year, and I get the one that's a stub on Wikipedia. (Looks around for pianos falling from the sky.) So far, I've also won the Doctor Lottery and the Care Team Lottery--except for the snippy person who complained that I wasn't answering her phone calls. Um...'cause I gots no mouth at the moment? Could that be why?

Thanks for your take on this. I'm going to wait for the tumor guys and gals to get back to me, and then take some time to think it over.

Hi, Susan! *waves from over her cup of coffee* It's nice to see another ICU geek here.

Thanks for responding, and I will be sending good thoughts *hard* in your direction. When do you start radiation?

Welcome aboard our slow freight train to hell and back. I'm not one of the lucky ones as most posters here aren't and it's been a long slow journey. I sure can't add to what's been said by the others but dio want to wish you nothing but the best and I pray the Dr got it all and you won't need rads, chemo or seed implants. Lost teeth, most of my tongue, taste buds, except for the 1st food in, and lots of weight. I think the only thing I wouldn't do over is the implants. It is 24/7 pain and wishing. LOL Oh for even a piece of good old bacon. Get em girl and show this stuff you are the boss.

Jim, thank you.

I've seen the "not-so-lucky" folks in my work; as I said, we do a lot of radical neck dissections and surgeries for oral cancer. I've watched people get worse, then slowly (slooooowly) better, and I've never been more thankful for a particular diagnosis than I was with this one. Talk about getting what my sister calls "the p*ssy cancer"!

I do intend to kick Lieutenant Lumpy's butt (that's what I called him before he was evicted) and send all the strength I can spare back to you guys. Thank you all for your warm and supportive welcome.

Johanne, you sure gave me a smile and chuckle with the "p*ssy" name.

Jo,

Imagine that... I don't have your same cancer, but I literally just texted someone about my own lack of enthusiasm for rad/chemo.

Last month, 9/15, I had about 75% of my tongue carved out (clear margins)and reconstructed from my left forearm. Skin graft from leg. 50 nodes pulled and checked - all negative. But, there was one under my old tongue that was positive.

Because of that one, I'm up for nine weeks of Cisplatin(sp?) with concurrent radiation (30x). Both of which I'm dreading. I feel like it's going to be slow and painful. If it were up to me, I'd quit now and be cool with it. I'm down with the scars (had a major car accident a while back 150+ stitches in my face), I can eat most what I want (except for that damn tortilla chip last week - lesson learned!), my sharkbite (arm) isn't bad and I can speak (mostly) and swallow.

Fifteenth of this month (November)I start treatments. Had my "mask" made last Friday. Had "chemo class" last Wednesday. Was told that I'm borderline anemic and will likely need transfusions and to go in for hydration as well.

While I can't necessarily offer the experience you're looking for, I can tell you that you're not alone at this point (physically or mentally) and that if you'd ever like to talk about this I'm just a PM away.

I wish you well and hope for the best!

Scott