Hi,

I am a 47 yr. old female recently diagnosed with Polymorphous Low grade Adenocarcinoma (PLGA), stage IV with lymph node, bone and peri-neural involvement. I underwent an 11hr. surgery for a radial arm free-flap excision and reconstruction of my hard palate. I lost three teeth and jaw bone, stripped maxillary sinus (bone was eroded) and some permanent nerve damage from surgery. Currently half way through 33 treatments of IMRT. The doctors tell me this is an indolent cancer and even though it metastisized, they still classify it as low grade and are aiming for cure. I would love to hear from anyone who has experience with this very rare type of oral cancer.

Welcome to OCF! Im very sorry to read about the rare type of cancer you were diagnosed with. Ive sent you a private message (PM) with some info and a link to review. This will help you quickly learn the ins and outs of our site. I may not have had your exact type of cancer but I have been thru similar treatments and understand what patients go thru with rads.

Im sure you read thru all the replies and posts dedicated to PLGA. Unfortunately there are not many. Oral cancer is rare enough but you have one of the rarest of the rare diseases. Finding someone with the same diagnosis is not going to be easy. Even if you dont run into anyone here who has PLGA, we do understand what you are going thru and are very helpful with info and support about treatments and recovery. One thing to remember that no 2 patients are ever truly alike even if they are the same age, their tumors are in the same location, same size, same stage, same sex, height and weight those 2 patients still are NOT at all alike. Everybody is different is very true when it comes to cancer patients!! Every patient will have a slightly different experience and have different reactions to radiation, chemo, medications,they will even have different timelines with milestones and recovery. That said, Im sure you will find our site to be of some help. We are all in this together and help one another to get thru some of the scariest and most difficult days, weeks and months of our lives.

Being half way thru rads, you may be starting to develop difficulty in swallowing and eating. This is one of the biggest hurdles we go thru and Im sure we can help you to get thru it.

Hang in there !!!