hello, i m Hanima from Gujarat, India. We found out that my father has squamous cell carcinomas (tongue), in june. He had a habbit to chew tobacco from time to time. when he first started to feel sore tongue he checked it up to a doc. who was a total douche bag as he told my father that he has ulcer and not cancer. He started taking pills but after a few fights with me & bleeding from mouth, he agreed to check again and went to another reputed doc who then told him that he is suffering from tongue cancer and is in almost 3rd stage. so he started doing radiotherapy, since the start of the therapy he has blood vomited 3 times. I seriously don't know which stage he is in as other docs from south India whom we consulted by sending our reports say that it is still in its early stage & is curable. everyone is just confusing us. Also because he bleed through mouth ENT docs operated him & attached a vent pipe in his throat & a pipe through his nose to stomach for liquid food... I am terrified & concerne about my father please help me know which he is at if any one of you have been to this situation.

Hanima;
I too had squamous cell carcinoma which had spread to a lymph node. They never did find a primary tumor. I underwent chemo and radiation. For your father, if there are no involved lymph nodes or tumors in the lungs I would tend to agree with the docs in that is was caught early. Not sure why they passed the nasal gastric tube. Was he unable to swallow? Same with the tracheostomy. Was the bleeding so severe that he had trouble breathing? I wish that I could help more but everyone is different. The important thing is that you find a doc that you and your father are comfortable with. Don't be afraid to seek additional opinions, as you already have. Good luck and blessings to you and your father.

thank you Richard,
the ENT docs said my father might have problem in the future regarding breathing & that it might block the lungs. and yes he did have trouble swallowing.

Richard,
how are you now and is your cancer cured? did you go through surgery? does it look ugly? are you able to talk? i am sorry but I have too many questions to ask before I convince my father which doctor to believe.

Welcome to OCF. Everyone is different as you will quickly learn around here. Stage is important but I have seen some Stage I patients die while other Stage IV patients survive. I have been both, the last time I was Stage IV and I got thru it. So you see that your fathers Stage will not determine his fate.

Radiation for oral cancer patients can be very difficult. Nutrition and hydration are hard to get when its hard to swallow and things dont taste right. The nasal tube will help him to keep up with his required daily intake amounts. Around here we speak directly from experience. Your father needs 2500 calories and 48 oz of water every single day. It sounds like its alot but his body will be working overtime fighting not just the cancer but trying to rebuild itself. If he doesnt take this in he will have a much harder time getting thru this.

As far as the nausea goes, ask the doctor for anti-nausea meds like zofran and compazine to help him feel better. Once nausea hits its pretty hard to take in enough as whatever he throws up needs to be put back in. If necessary there are suppositories with some anti-nausea meds. Try to give the meds around the clock as once it gets away from you and he begins to throw up its almost impossible to get ahead of it.

Wishing you both all the best with everything!

thank you Christine!!!! for the advice.. I'll keep up with it. just wanted to ask you do you need surgery even after radiations. my dad has had 12 sessions of them. and did you ever bleed?? not like blood in saliva but pure blood pouring out. it is terrifying to watch dad go through this. but i am glad i joined this foundation. it helps me keep faith. and be brave in front of him. Thanx alot and I hope that u'll help me in future too.

Hello Hanima I am a newbie here and like you I am supporting my husband and his family. My mother-in-law was diagnosed with tongue cancer in Jan 2008 and she had a partial glossectomy of her right side of the tongue. My sister-in-law told me that the after surgery was frightening since Joyce would cough out blood. Unfortunately they did not do radiation and did not treat the cancer aggressively that is the mistake. BTW I am in the USA while Joyce is in the Philippines. We do not have hospitals devoted to cancer alone. May 2012 she noticed a lesion on her gums which was diagnosed as SCC after the CT Scan they would more cancer on her lower jaw bone. Therefore she is having a mandible dissection followed by 33 sessions of radiation. The sad part is that she is very thin now less than 100 lbs. Another big frustration for me is that the technology here is so far from what they have in the Philippines. Questions are also not being asked.

I wish you the best Hanima and I pray for the complete recovery of your father. You are blessed to be with him. Our elderly parents are 20,000 miles away

Dear Ina.... i totally understand the pain your family must be going through.... my father too has lost weight, he used to be really fat and chubby. last night he fell on the floor while returning to his bed from the bathroom. his legs are not strong enough to hold on to. the concern in India is that the economy is so poor due corruption that even a single surgery would cost middle class families like mine, a fortune. and still the cure is not assured.... keeping all that aside, i just want my father to get well just like you wish to see your mother in law. give her my wishes,I shall pray for you both. take care. & thank you!!!

Sometimes a little blood when mixed with saliva can look like alot more than it really is. You should mention the bleeding to your fathers doctor.

I cant tell you enough about good nutrition and hydration. This is more important than you realize. It will help him to feel better and make it easier to stand up to the difficult treatments.

Being a caregiver is not an easy task. It takes alot of courage to appear to be brave while you are scared and worried. This forum will help you both thru this. Moral support is important for not just the patient. Some patients need anti anxiety medication to help get them thru and they arent alone, some caregivers need it too. That goes to show you haw hard it is for both sides. I always call caregivers angels as they are selfless and watch over the patient while putting on a brave smiling face. It cant be easy to manage the home, bills, groceries, cooking, cleaning, working and then also to transport the patient and put their needs first while watching them deteriorate slowly before their eyes. Its more than any one person should have to deal with. Dont be afraid to ask friends and relatives for help to give you a break once in a while. Take a few minutes each day to collect your thoughts and take a deep breath. It doesnt have to be anything like an all day trip to a spa, just take a walk around the block or sit on the porch for 10 minutes and relax. Caregivers need care too.

Wishing you both all the best!

Hello again, Our situation is the same financially. In fact, the hospitalization of Mom is minimal since they are taking into consideration the funds available. In the Philippines your hospital services are pre-paid and they will NOT hesistate to send you home if the funds are not sufficient. Truthfully it breaks my heart. Also there are some test that have not been done due to cost, to be specific the PET Scan. They had to forgo of this test since it will cost $2000. I will include you and your father in my prayers. God bless to you for being your Dad's angel. Ina

Assalamualaikum,hello, its 4:30 in the morning in India, and my father is in the bathroom, he has gone really weak. although we have been giving him 2-3 glass of protein milk every two hours. he is not able to sit straight on the seat, hence I had to put a long stool in front for him to bend over & support his arms. I also had to hold him to bathroom,with a stick in his other arm. A lot of things happened yesterday. We are supposed to change his tracheostomy daily at home by ourselves, so there we were @ 4 pm ready to put the alternate tracheostomy tube in my father's neck,when i found that the tube is not going inside, although it has gone inside w/o much effort in the past. so i try to put the previous one which caused a bit of scratch on his neck. We immediately took him to the hospital & they said the hole somehow has shrunk a bit & hence they put a 6mm ID tube instead of 7.5mm ID tube that we used. this time they also put a hole in the tube so that DAD can talk. although he has not tried to talk yet. but hope he speaks soon.allah hafeez!!!

Hi Hanima,

My dad had his jaw bone removed and a skin graft in January 2010 and he was in a critical state for almost a month before he started to get better. It was very difficult to watch, so I understand how you feel. Its very traumatic, but keep the faith! My father had a trach tube, a stomach feeding tube, and blood drainage tubes coming out of the sides of his neck. His face was unrecognizable. But after 3 weeks, he started to heal. They were going to put him in a nursing home during his recovery, but said that if I was willing to learn how to care for him then I could. So he came to my home for 2 mos while I cleaned his trach tube, his skin graft, gave him insulin shots, and changed his feeding bag. It was a lot of work, but I knew I was doing the right thing. He got to see his family including grandkids every day in a comfortable environment. All of the care he needed was very unsettling for me, but looking back, I feel much stronger for it. I saw him in such a down state and then I saw him recover. It takes patience, but just know that you are not alone and we are all thinking about you and your father. With your love and support, your father is going to get through this.

Thank you! S.P Ang,

Glad to know about your father's will to live!!!! My DAD is pretty scared of the surgery, he is afraid he will not be able to talk ever. past few days, he is been having mood swings. I m curious but i have faith too. he has become stubborn. he has refused to take any fruit juices because it gives him cold and it causes choke up in the trach tube. if we force him even a lil bit to atleast have milk every now n then he gets hyper and his head starts to ache. so i have been finding ways to convince him to have his diet. he is not able to pee since my last post. I wont say that i m exhausted or tired of serving my dad, i m tired to see him through all this. I seriously want him to recover as quickly as possible. and S.P Ang I do have a question, is ur father able to talk properly? does his face look normal? Its embarrassing to say but my father is a lil bit looks conscious too.... thank you guys for helping me out of this... its hard but i m in for a long run....

You can definitely tell that my dad had something done on the side of his face. There is a bit of scarring because of his skin graft and previous surgeries. But you know, in pictures you can't really tell - kind of strange. His talking was affected; he is harder to understand. And he has not really eaten solids since the surgery. His attitude is amazing though and I think that helps tremendously. He blends EVERYTHING and drinks it - he seriously is back to his original, healthy weight and he works out daily. He will blend fish with potatoes and broccoli and then add some ice cream for fat. I don't know how he does it. So yes, you can tell by looking at his face and by talking to him, and that was hard for all of us at first. But he is so positive and determined that I rarely even think about those other things anymore. It doesn't happen overnight, so patience is key. Eventually you adjust to a new normal.

There are far worse things in life than being disfigured. Most patients think they look far worse than they do in reality after any type of facial surgery for OC. Your father will adapt to whatever happens, there isnt much of a choice. Some patients will need professional people to speak with to get past any dramatic change in their appearance. The saying "looks arent everything" really is very true. So much better to be alive and not look the best than to not get thru this due to vanity.

Speaking as someone who is now disfigured, its not always easy to live disfigured but I have adjusted. After walking around for over a year with people staring at me every place I went I became almost immune to the stares and whispers behind my back. I am still the same person inside even if I dont look so great on the outside. I know who I am and thats all that matters. I have dealt with this better than most. I hope your father wont go thru what I have but if he does, then he may want to talk with me or another survivor who has walked this path.

Best wishes!!!

One more thing...as I mentioned, my dad had a stomach tube to eat for about 4-5 months. Perhaps you can inquire about this for your father. He does need nutrition so if he is having a difficult time, I would talk to his doctor. Keep the faith Hanima! We are all in this together. Share my dad's story with your father and let him know that he can get through this. I know its difficult and discouraging, but take it one hour at a time, one day at a time. My dad took a lot of walks during his recovery...even with his trach tube and stomach tube. The key is not to let the condition define your existence. Building strength is so important and it helps to fight depression, so make sure he moves around a little bit everyday (of course, check with his doctor about this first...but if they say its OK, then its important to help him move around).

Hello Hamina,

I found this beautiful poem and I thought of you. Hope the best for father and for you for being a very loving child.

A Father's Love
You were the man who loved me first
The one who sat me on your knee.
You kissed my cuts and gave me hugs
And built that house up in the tree.
Even when you scolded me
You let me know your love
You told me all I need to know
About the stars above.
Thank you dad for all you did
And for loving me.
You showed me just how special
A fathers love can be.

thank you so much Ina.... I m overwhelmd... i think of all u guys wen m wid dad. i've been nothing but stronger since i have joined....all thanx to u guys.... now my sister wants to join too... Its 9 pm in India... dad's sleeping... today he cried 2 times in front of me saying he is not strong enuf to go through all this.. i tried to comfort him but he shunned me. also a family friend gave us a cancer specialist's no. in another city. gotta get an apppointment with him. he works at sterlin hospital. they have a branch here too. but this dr. is well known for surgeries.. So i am praying he says that the chances are good. gonna go to the oncologist who gave radiations to my dad. gonna ask him to refer an MRI scan. wanna be sure how much therapy worked.
CHRISTINE... thank you... i totally agree with u. looks are not imp. my dads lyf is. i hope he gets it.....
ANG.... i told my dad about ur dad. i think he did get a bit stronger but still he wanted me to ask u if u had to do suction of ur dad's trach tube??? did he suffer pain???

I had to clean my dad's trach tube daily. It wasn't by suction. My dad had one that had an insert which could be removed and cleaned and then put back in. It didn't hurt him to remove it. He would gag a little bit if it touched the sides of his throat, so I would say it was a little annoying for him - but no pain. Then I would clean the insert in the kitchen and reinsert it. It sounds maybe a little different from the kind your dad has. Also, my dad couldn't talk for the first month after surgery, but he talks all the time now! He used a white board to write to us during that time. My dad was definitely on a lot of pain medication though...morphine...strong stuff. In fact, he was on a lot of different meds at the time. One would offset the other. I had to mash it up and give it to him through his feeding tube. Tell your dad that my dad says to hang in there and that it won't always be this bad. He says to take one day at a time...just remember to breathe. There is enough love and support to get him through this. The body is more resilient than I think many people appreciate. The will to live is incredible - no one and nothing can take that from you unless you let it happen. I see that in my dad and in so many of the posters on this site. Incredible people...

Ang... the trach tube my dad has is also like that i have an alternate tube to replace wen i take the insert to clean. but the tube tends to choke up every hour... and it hurts him wen i change it n now days it hurts during suction too. tell ur dad i said thanks. ma dad's still sleeping i'll read him ur dad's msg wen he wakes up.

Hanima,

It would be helpful to all of us if you added a Signature Line so we know better how to respond to your forthcoming questions.

Hi Hanima, sorry you had to be here and unfortunately, I am also not too active these days.

Doctors in India are not too forthcoming talking to patients and caregiver about their condition. Few questions to understand the real situation:

1. Does you father have some swelling on his neck?

2. Did doctor say anything about surgery?

3. How many cycles of radiation has been planned?

4. Is it being given with Chemotherapy?

5. Is your father covered under some insurance?

Usually Radiotherapy and Chemotherapy are considered palliative treatment with objective of improving the situation e.g. reducing tumor size or providing pain relief.

I'll share my email address and phone number on PM. If you can send me the reports, will try to help you understand the situation.