Pete,

Have you ever had your throat dilated?

I'm not sure exactly when it started, but my throat completely closed up last March, 17 months post Tx. I mean completely - no water, mashed potatoes, pudding, or ice cream - absolutely nothing. It all tried to go up into my nose or down into my lungs. I was admitted into the hospital, and that's when I met my gastroenterlogist. He dilated my throat and I was able to swallow that evening.

He said that the throat constriction can first start as long as 2 years post rad. He couldn't dilate me all the way in one shot because it was SO constricted (didn't want to tear it), so I had it done twice more, each a few weeks apart, until it was of "normal" size.

I was having trouble swallowing again lately, so I just had my esophogus dilated again (4th time) and again Blessed relief. It doesn't solve all my eating problems, because I still have tongue stub, dry mouth, and no teeth issues, but the difference is incredible.

It's no problem to have done, either. Mine is done in the Doc's office under anesthesia. Go to sleep, wake up, It's done. And that night you're swallowing like a champ. There is no sore throat or anything either. You feel just fine.

Lani

Lani, I've been considering doing just that, although I didn't realize the Gastro-Doc does the work -- Did you do a self-referral or was it done by your cancer Doc?

Pete,

I was admitted into the hospital because I couldn't swallow anything at all and needed to be fed and hydrated by IV. He just showed up at my bedside the next day, so I guess the hospital Doc-in-charge called him in.

Since then, my disability Medicare became effective. I chose Humana Gold (with Medicare) to manage my health care, so since then it's a referral from my Primary Care Provider - everything's supposed to go through her now.

That hasn't been a problem for me because she's very easy to get along with and doesn't question anything I need. Before I signed with Humana I made sure that they would have no problem with all cancer-related issues going through Shands too. That was a deal-breaker for me, and so far,so good.

I don't know, but probably ENTs would also do the procedure. Check with your PCP, or your cancer Doc should be able to help out, too, if you need a referral. Maybe you could just call on your own, though, if your insurance allows it. Gastroenterologists take care of the whole "gastro" thing top to bottom - esophogus, stomach, and on to that colonoscopy we're all supposed to get. (So if you go in to have your esophogus dilated, don't let them tell you to strip from the waist down.)

Do this. I promise you'll be thrilled with the results.

Lani

I have a call in to the nurse practitioner on my cancer team (Along with Dr Haakenslash and the Cutthroats; good name for the OCF official rock band!) to see. Rather get it done on this side of Puget Sound as it's more convenient for me.

This is a banner year for me, what with two CT, one PET and one MRI, cancer surgery, colonoscopy and enlarged prostate treatment later this month (I am pushing the extra stuf because I have already met my out-of-pocket for this year!). Might as well have my throat messed with on the inside as well as the outside...

Pete,

Well since you already had the colonoscopy, you'll get the throat done and you'll be clean & clear, through and through.

Lani

Yeah Pete, get the whole tuneup and be done with it.

I also had the PEG in and out about five times (once by Doc and the others by me), so even the middle of my system has been affected. Even had a couple of fillings done this week at gum line!

Pete...I love you comment. It made me laugh out loud. It does seem like a good idea at the time doesn't it?

Elem,

I wish your husband luck on his surgery. Let us know how it goes.

Suzanne

My husband has also decided to give up the fight after nine years and many surgeries and hospitalizations. He has fought with radiation and chemo. He has had a total glossectomy, he has a trach and can not speak. He has a feeding tube and now has difficulty hearing. He just wants to be comfortable and surrounded by his loved ones. Hospice has been wonderful and I feel we have made the right choice for us. It may not be right for everyone. He is resting comfortably in a hospital bed in our living room and not spending his days being prodded and poked.

It is a personal choice and no judgements should be made. No one said this was an easy choice. Watching my husband decline everyday is the hardest thing I have ever done. I was a nurse for 20 years working in Nursing Homes and I have seen families in pain no matter what final decisions they made.