Dear everyone,
My name is Tisana C and my father who has always been my one and only inspiration in life, he raised me by himself. My father had a stage 4 oral cancer. He had gone through a 10-hours-long operation to remove the cancerous part of his tongue and replaced his old tongue (cancerous part) with flesh derived from his chest. However, the tongue is starting to get paler. The doctor suspects that the body might rejects the new organ (the tongue's replacement). Now we're waiting to see if his body will accept the newly replaced tongue. I am very worried that he might have to go through 8-10 hours of surgery again. Please kindly suggest if anyone was in the same situation and what should I do?
He is not going to be able to cope with removal of the entire tongue for sure. His profession had always required the use of his tongue as he had to talk and give speeches all the time as a university professor, a human, animal and environmental rights activist (Chairman of many environmental foundation such as and also a chairman of an orphanage for asylum seekers and stateless peoples, a former democratically elected senator. He has also been very moody after the surgery and has been trying to speak.
However, he has just gone through a surgery but he hasn't realized, and the doctor hasn't told him about his tongue going pale and they might have to remove it and re-do the surgery again.(however the cancerous part has been removed)
If anyone has ever been through the surgery and faced the same situation please share some opinions. Your opinions are highly appreciated.
Kind regards
Tisana C.
Welcome to OCF, Tisana! Im sorry to read about what your father is currently going thru. Hes lucky to have you there with him. Im sure this isnt easy for either of you. When was your fathers partial glossectomy (part of tongue removed)? Is he still in the hospital?
Our online public forum consists up of oral cancer (OC) patients/survivors and their caregivers. We're all just regular people without medical degrees or years of medical school. We relay what we have learned first hand by going thru some very difficult days and/or treatments ourselves. Our small nonprofit organization is based in the US. The majority of OCFs members are also in the US. We do have many members from all over the world. My knowledge is limited to primarily how things are done here in the US. This may or may not be the same or even similar to where you or other members reading this are from. One noticeable difference already is your father had tissue for his new tongue taken from his chest. Here in the US (Im pretty sure in Canada as well) its usually done with the tissue salvaged for the new tongue comes from the inner forearm, the area between the elbow and wrist. Its very rare to see anyone that had tissue taken from their chest, Ive only seen 2, maybe 3 others over the 12+ years Ive been here.
One important thing to understand, unfortunately, comparing patients does NOT work. Its never an equal comparison. For example, you can have 10 patients who "on paper" appear identical, so much so they could be interchanged. There are soooo many variables when it comes to each individual patient that comparing patients to each other is not ever an equal comparison. Even if every one of the 10 patients is the same age, sex, blood type, same size/location/stage/type/color/etc tumor, they all live in the same neighborhood, have the same allergies, same number and ages of children, ethnicity, heritage, even their parents are all from the same town, work in the same job at the same location, are originally from the same place, all work the same shift/number of hours per week/same employer and anything else you can think of that makes people different from each other. All these things add up to be very similar people but they are NOT! Every single one is still an individual with their own DNA, who will always react to medication, treatments, tests in their own unique way... ALWAYS!!! Im explaining this so its easier to understand just how difficult it is to compare your fathers current situation to other OC patients who had a partial glossectomy and were facing a possible rejection of the transplanted tissue.
Im very sorry to say, I dont think there is anything you can do to make a difference in your fathers condition. When someone's body rejects something, it could be due to all kinds of different things going on. I doubt even the most experienced doctors could pinpoint exactly what went wrong that caused the rejection. To me Im thinking if the tongue is looking pale, maybe its not getting enough blood flow. Surgeries are very complex!!! Teeny tiny blood vessels, nerves, and a great many others things play a part in first eliminating the cancer removal and transplanting tissue from one place to create a new tongue. Here in the US, its anywhere from 8-10 hours in the OR as well, then usually 7-10 days in the hospital. Sometimes the first few days after the surgery the patient is kept in the ICU for more hands on attention from the medical team. Some patients will be kept asleep in a medically induced coma for the first couple days after surgery. I suggest having a long talk with your fathers doctors and ask why they have not told your father the bad news of a possible complication and what their thoughts are about the tongues pale color. Hopefully it will not come to that but if it does your father will need your help to learn how to best communicate if he is unable to speak clearly.
Theres a few things that might be useful for your father. Theres always sign language and speech therapy to help your father communicate easier. He could use a dry erase board to write what he wants to say, as well as text or email. As far as speech therapy goes, check with his doctor to see if thats something he could begin right away as the earlier speech therapy starts the more successful your father will be at it. That should also help him feel more positive like he's doing something to help himself. You may want to ask his doctor about mental health professionals availability at that location. Your father has been thru so much already and it sounds like he may have a long road ahead. Many OC patients find they need some help to handle the mental issues, depression, etc that comes along with a cancer diagnosis. He is NOT alone with his feelings, a great many here have needed anxiety/anti-depressant meds and/or a therapist on a temporary basis. Another tool that could help is Apps (for ipads) that enable someone to type and the app will speak whatever was typed. Its called "Speak It". I had a good friend who used this when cancer made it necessary to remove her voice box. She was able to make phone calls and talk to anyone she wanted with typing, it looked very easy to operate.
Im sorry if I havent been able to give you more help. Read both here and on the main OCF site about glossectomies and/or OC or any of the numerous topics that could be helpful for you and your father. Best wishes to you both!!!