Hi all - my Mom has had oral cancer (squamous cell) for a little over 2 years now. Shes had technically 5 surgeries - 3 of them involved removing cancer. Her last two have been the biggest. Last year after surgery she was left with a hole in the roof of her mouth after a partial palatectomy/maxillectomy. She got a prosthesis but didnt wear it much because it caused a lot of pain. The dr's say she will probably always have the hole in the roof of her mouth.
Her most recent surgery was in January. They removed bone from her jaw and replaced it with a piece of her fibula bone from her leg. they removed all of her teeth on one side. they took a big piece of skin from her leg to try to cover where they placed the new bone but it didnt really attach. she obviously had the feeding tube put in and a tracheotomy. she still has the feeding tube but trach came out last month...probably should have left it in
they also installed a bar with 2 screws in the same place. recently it became infected. the dr kept telling us it was just infection and that it was normal. her skin on her cheek started to open up and created a small hole so that the infection 'stuff' could get out. again, they said this was okay. this went on for about a month. eventually the hole widened so much, the screw became completely visable. finally, they did a scan (i think she should have been doing them every month) and became concerned that it wasnt all just infection but that the cancer came back.
last wednesday she had a small surgery b/c they had to open her up in order to biopsy - she cant open her mouth wide enough. we were all hoping to god it was just infection but of course we have no luck, the cancer has returned for the 4th time in 2 years. we just have no words. im heartbroken. my heart literally feels so heavy. shes 59 years old. how many surgeries can one person have? she says shes will to go under theknife again. this time they think its moved to her tongue. i feel like her dr has been great through all of this but perhaps its time to pursue going to an actual cancer treatment hospital, such has the one in Texas or Maryland or NY. shes putting too much trust in this one surgeons hands and i feel like we need to explore other options. one person cant know everything. Shes been through SO much. She is so TOUGH. I feel like I would hide in the house and cry all of the time if I was her. The day after we found out cancer had returned, I awoke that morning to someone cutting the grass - I thought it was my stepdad but it was her. Out in the yard working like any other day. I just want to bring her some relief and peace. I want to bring her somewhere where we can receive the BEST care. Does anyone have any experience going to a cancer treatment center or know of anyone on this forum that i could talk to about it?
I know this is very long but I just need to vent and get it all out. Thanks for taking the time to read
