Hi all,

I am Heidi, daughter in law to one of the bravest women I know. 6 yrs ago she was diagnosed with oral cancer, roof of her mouth and sinus (she nearly lost her good eye during surgery it had gone so far up). It took nearly 3 yrs for her dental implants to finally be placed well enough for her to learn to eat again (she was swallowing boost pretty much all that time with the occasional pureed food or pudding).

Then literally one week after she was given the all clear she started having trouble swallowing, lost 20 pounds within a few weeks, and was diagnosed with esophageal cancer.. a new primary. We moved her in with us as she was no longer able to care for herself (she is 84 now) and arranged for her to have a feeding tube placed as well as chemo and radiation. We are well acquainted with feeding tubes and central lines as my 8 yr old son has been on TPN nearly since birth as well as gt feeds of his own.

She has never been able to come off of the feeding tube, and though the esophageal and oral cancers remained clear (until now) she has had several bouts with skin cancer and bullous pimphergoid (as well as compression fracture of her spine).

Yesterday she was diagnosed again with a new primary oral cancer, this time just inside her lip. She is devastated as you can imagine. We are waiting on an appt with the radiation oncologist as her ENT felt that surgery was not a good option given how awful her mouth is already (she drools constantly, often has yeast that just wont go away, etc). We are going to talk to him about what would happen if she chose not to treat at this point, and what he would expect for her if she does treat. She got really sick during and after her esophageal treatment (carbo and taxol along with radiation) and I know does not want to get to that point again. She says she is already just waiting to die... miserable, though she tries not to show it much, she is not having very good quality of life except for having her grandkids around.

Anyway... I guess what I am looking for is any information about what happens if you dont treat, as in pain especially, discomfort, etc... I would imagine she would eventually end up with mets in various other places, lungs, liver, etc? Also information regarding just radiation... chemo is out, it made her way way too sick and I know she wont want to go that route again. I dont want to push her in any particular direction here, it needs to be her decision.

Thoughts or suggestions most appreciated...

Heidi

Hello Heidi, I am sorry to hear of her troubles with cancer. If it is caught early, she may only need a minor surgery to remove enough of the lesion and a safe margin. Left untreated, the long term progression of Oral SCC is not something I'd consider as an option. She may also be able to have radiation to the new area. Radiation to a smaller area may be well tolerated by her.

Hopefully she is being seen at a cancer center and is getting top notch advice. If in doubt, get another opinion.

Hello Heidi, I too am sorry to hear of your mother in law's problems with cancer. She sounds very brave, I am hoping this won't be so bad for her. You and her are in my thoughts and prayers. Take Care, Carol

Hello Heidi,

Welcome to The Oral Cancer Foundation. I'm sorry to hear of your Moms problems. You sound very educated about her condition.
It's a tough personal decision to make decideing to continue treatment or not. It's tough ay 55, I would imagime it's much tougher at 84. What Mark siad above may be true but the quality of life issues can be tough. She has survived for six years which is a great thing. I hope she makes the decision concidering all her options. I understand how she feels.

Best of Luck, Danny Boy

Thank you all for your good thoughts and support. Much appreciated. As much as I would like for her to try longer and work with the treatment, I can also well understand how hard she has fought and how tired she is of fighting.

When she had her first bout with the Oral cancer she lived in another state, and we had several crisis of our own to deal with (life and death stuff with our son). She had to cope alone, and though she did amazingly well with it, it really did tire her out. 3 yrs later when diagnosed with the esophageal, we had her move in with us for treatment, and learned more about the treatment they gave her for the oral. Apparently she never NEVER saw an oncologist for that... surgery only and no consults of any kind with onco. We were flabbergasted. And learning more about what the dental crew put her through with the implants and everything... it was truly ridiculous from our perspective.

I am thankful she is now here with us so that no matter what SHE decides to do, we can make sure she gets the best of care. We have a really good cancer care center, all under one roof (had she remained in California her care was to be at 3 different places, and she cannot drive so had to take taxi's everywhere). Here she can get care 5 minutes from our house, so less transportation needed and I can continue to take care of her AND my special needs son (we homeschool both my boys partially so that we can arrange schedules to meet our needs).

Anyway... I just wanted to thank you again for the support and welcome. Lots of things to weight out, and no matter what she decides, we will be there for her all the way.

Heidi

Well, we saw my MIL's (mother in law) regular oncologist yesterday, and he was surprised to hear the ENT felt surgery was not a good option. But, when we explained (and he called the ENT himself) he understood... given the location of the cancer, it would mean losing the corner of her mouth (stitching that part of the upper and lower lip together) thus making her mouth so small that she could no longer remove her prosthetic. Or put it in.. the idea of not having teeth for the rest of her life she found quite daunting, given she has trouble speaking sometimes WITH the prosthetic. Not to mention they said swallowing and drooling would be much more of an issue than they already are.

The good news (we will know more next monday when we see the radiation onco) is that they felt radiation would not be too awful for her. Apparently there is some kind of electron radiation they do that is not as deep or severe as before? And since she never had radiation with her first Oral cancer and her esophageal was low enough down she will likely still be a candidate for it.

She has agreed to do the radiation assuming all is well on monday. I think her spirits were MUCH lifted after our appt, she was smiling, and is back to her sweet self, enjoying the boys and laughing (a little). For some reason, the onco's smile reminded her of the Bob commercials (you know the ones!) and she didn't even hear much of what he said so I had to refresh it for her in the car on the way home.

She really is a dear lady... we joke when I fill her feeding bags for "mealtimes" and I make up menu's so she can at least pretend she is eating glorious foods like Chicken Divan, Quiche, and cheesecake.

Thanks again for the support, Heidi

That is great news Heidi! Radiation is very effective. It is very possible she will beat this cancer.

Take care