Update from 8/29/14 post

Kritter

donfoo said:

Unusual case

Hi,

In your case with an uncommon/rare cancer, do seek at least a second opinion from a specialist cancer center like MD Anderson or one near you. Make sure your case is reviewed by their tumor board. If there is an option, you might still consider switching to a CCC.

Personally, I support cancer treatment at local facilities fully except for unusual cases which I believe should be handled by doctors who treat oral cancer everyday as those centers collectively have far more experience with handling unusual or complicated cases as your. Good luck, Don

Case

Hi,

The hospital I am going to is known for cancer treatment. I am not a big fan of really large hospitals as I have several people I have met recently on my trips for tests.. etc..and friends that went there and several chose to be treated at the hospital I am going to. Just because they are bigger doesn't mean they are better. (( This is just my opinion and not wanting to cause a stir.)) But I feel a smaller hospital with highly educated Doctors creates a more one on one atmosphere and a closer connection with the Doctor, as he isn't overbooked with patients. So like you.. I support treatment at local facilities IF Doctors are as experienced in their field as the Doctors woring in larger facilities are.

Kritter 

Kritter

Duggie88 said:

Kritter

I had stage 4, full neck dissection, feeding tube (through the nose), and a tracheotomy.  I also had to have teeth removed before radiation and the again afterwards because of the radiation. Sounds like you have a lot on your plate but I feel confident with all the fine people on this site there will be many hands extended to walk you through anything.

You had concerns with breathing during surgery which shouldn’t be an issue because they will most likely give you a breathing tube during the procedure. You will wake up and will never know it was there.

Stay positive, practice swallowing, keep hydrated, and don’t hesitate asking questions here and with your health care team.

Thoughts and prayers

      Jeff

Full plate

People like you give me hope!.. I am getting the PEG in the morning. They are concerned I am already losing weight and with teeth being pulled might cause more weight loss. But everything tastes the same.. no taste at all anymore. Can't smell it either, so I just go for the * pretty food*.. on the menu.

I am trying to be upbeat, but some days.. it is hard to keep smiling. As they say .. * smiling on the outside and crying on the inside *.. 

Thank you so much for the kind words and sending prayers to you as well.

Kritter

Kritter

katenorwood said:

Hello Kritter !

I didn't have the peg, but my brother did.  He did well with it.  And it sounds like your doctors are spot on with things.  Try not to over think the lymph node thing.  My brother had several involved, and after tx's they've resolved.  Your doing the right thing by writing down info. given to you.  Is someone else going to your appointments with you ?  Sometimes it's good to have another set of ears along for the ride.  Thoughts and prayers your direction !  Katie

As usual didn't read all the posts.  Glad to hear your hubby is beside you in this crappy walk.

Spot on

Katie, I have a great team of very caring Doctors. Getting the PEG in the moring so will see how it goes. I may not need it for awhile but they wanted it in place in case I do. I would rather have it now, than them try later when my throat gets too sore. Everytime i have an appt, someone is with me, I also have a good support team of family and friends. 

I hope things are going well for you also.. Sending Prayers your way.. Kritter

Kritter

donfoo said:

IMPT

You mentioned MD Anderson. Has IMPT been discussed? I would at least inquire if this is an option for you as it might offer better outcomes and less side effects.  http://www.proton-therapy.org/intensity_modulated.html

IMPT ?

They really haven't discussed this with me yet, as they are waiting on the new PET scan, and MRI. But the Trilogy machine they will be using supports the IMRT, and says that it is capable of destroying cancer cells while it minimizes damage to healthy tissue. I will check the link you sent on IMPT.. thanks for the info, I have never heard of this. That was so kind of you. 

Kritter

Hondo

Hi Kritter

Don’t worry about the PEG Tube it’s not that bad. If you have a choice ask for a Mic- Key Lower profile button, best PEG tube you can get.

I had a C in one lymph node right close to my Carotid Artery, no surgery doc did only radiation. Hope this and what others are telling you will make you feel better. God bless

 

Tim Hondo

TracyLynn72

PEG

The PEG tube had me terrified....for no reason.  I was a nervous mess going to get mine and it truly was no big deal.  I KNOW that it saved my life.  The doctors said that my rad onc had let me go too long and that I was showing signs of malnourishment and was totally dehydrated.  Even the removal months later was nothing at all!  I'm so sorry for all that you are going through...I remember the emotions and fear so well.  I kept a journal through my whole cancer journey and read parts of it time to time.  I'm almost a year and a half out of tx and in some ways it feels like YEARS ago, and others it seems like last week.  We are a family here and are cheering you on the whole way!

 

My friend had a rare MEC tumor in her sinuses.  She is 2 years cancer free now!  My prayers are with you and your family