I think the ear pain may eventually subside. It may be the aftermath of it all. As long as the drs. are aware of it it should be okay. It may have damaged or interfered with a nerve. I had ear pain prior to my hemiglossectomy and since then I feel very little since all the nerves were damaged during the surgery. I also had perineural involvement so that may also have had something to do with it since the pain radiated along my chin to my ear.

try not to worry for now. Just keep mentioning it if it doesn't clear up. Take care.

Thank you dear cheryl,

her cancer diagnosis is so interlinked with ear pai. When there was a lump on the right side of the tongue last year, doctors kept on misdiagnosing it as a infection, till the ear pain started in feb of this year. Now it is on the left side of the tongue. I just hope the doctors in India know what they are doing. The thing is there are too many suffering and too few drs. oncos to take care, so they don't take care of the old patients.

sincerely,
swati

I don't know how to explain this,
My mom (64) was diagnosed with oral cancer in 2006. stage 1, Got surgery and removed after 3 months. doc was inexperienced in cancer issues. didn't removed completely and didn't suggested chemo or radiotherapy. Actually he was a General surgeon not oncologist. this was the biggest mistake we made. He was our relative so had to rely on him for medical purposes. Thats how it works in developing countries. and I was abroad for my masters.
the cancer reappeared after 1 year with swollen lymph nodes. Again surgery and all lymph removed. This time he suggested radiotherapy. after 2 dozes of therapy, mom started to vomit a lot and hence had to postpone the treatment. Mom's immune system became so weak that she contracted Gastroenteritis (stomach problem). She became very weak. I can remember how she collapsed in my arms because of weakness. Then she was on bed. My father left everything and devoted his whole time for my mom. he took care of her 24/7. I arranged a famous oncologist specialist in the city where I work (different from my home town). The doc was famous for completely eradicating the cancer virus through his specially developed techniques (i met his successful former patients who were absolutely fine even after 6 years with just 1 year of treatment). But for my mom, he said that its quite late now. Had we been to him within 1 year, then he might help in much better way. However he started chemotherapy doze. after second doze, my mom become very weak. The chemotherapy doze was mighty expensive. one doze cost 60,000 pakistani rupees and she was suppose to be given 2 per month. I was literary dried out of bucks and we were considering all option to arrange money for next chemo doze. I can remember when my mom called me and wrote on a piece of paper (she couldnt speak) that she has some few hundred rupees in bank, I can take that for her treatment.
I said her don't worry mom, we will take care of that, when you get better, you can buy me a mobile phone with that, you know I have an old mobile set. She smiled and said ok.

One night before her third doze, I was chatting with my dad and he was telling me how his relatives ( his brother and sisters) are initiating property dispute and saying him to vaccate the old family house, and not even considering the time through which we are passing right now. My mom listened all this and then she had a severe heart attack. We took her to hospital. The hospital guys thought she again might have stomach problem and tried to treat that. But she slowly counted her last breath and expired in July 2008.
I was finished after she was dead. But then i recounted how i spend the best days with her when she was ill. How emotionally I supported my father and siblings. How we were connected together.

Now I develop a mission in my life to fight for hi-quality free universal health care system. And also for an employment system which allows you to spend quality time with your parents and family especially when they are in need.

I am sorry I may dissapoint you all. but I recon that I spend the best part of my life with my mom. I cant forget that. Her memories strengthen my soul to struggle for my mission.
I am completing higher studies in UK and lets see where life takes me. I am just living for my mission, may be I cant achieve it during my lifetime, but I am fighting for it.
AG

[quote=swati1]so they don't take care of the old patients.[/quote]

Swati, this is something that I would disagree with you. Private setup in India are as good as what you get in States. Though, I have to admit that the Onco are not comfortable discussing the real situation as frankly as patients in India are also not very accomodating.

Hi Mimosa,

I cried when I read your post. thank you so much for sharing your story. i will support you in your mission, but I don't know where and how to start. Right now mom is back in home after more than 1/2 of her tongue removal. The onco had kept saying it is not cancer. the tumour as cancerous and quite big. 2.5*2*3. And to think that the onco had missed it for 3 months. Mom was going to him every week plus hospitalized under his care for 2 weeks. I think in India there is no accountability, that's why the doctors think they are gods and get away with murder. Now also the onco is saying to meet him after a week and no rad or chemo, but he will treat the cancer with medicines. I don't know whether india has invented a miracle drug for cancer, because I haven't heard of any medicine which cures cancer.
sorry for venting it out, but I am truly disgusted with the system.

swati

Hi eesawar,

No disrespect to you. You were extremely lucky to have a good onco.
In our case, we are having rotten experience.
Mom had just finished 37 rounds of radiation in june 12th. the onco had said no recurrence in august. Mom got pain in throat and ear pain in august end. rushed to onco, he said infection, although he felt a lump in the middle tongue. he treated for 2 weeks with antibiotics. the ear pain increased, so did the lump, he then did needle biopsy. it came suspicious cancer cells. instead of taking action immediately, he said 2nd opinion. 2nd opinion from HCG, bangalore said do wedge biopsy. the onco delayed saying he wants to take it slow. My poor father was running around with my mother to dr. to dr. after 2weeks the pain became so unbearable, that my mother used to scream in agony. my father rushed her to the onco. the onco admitted her in his hospital for 12days and kept on giving morphine injections twice a day for 12 days. the lump was big, he said the ear pain is due to some nerve pain. My father begged him to do the biopsy. in the end he did it. The biopsy results came after 3days and it came positive. the onco discharged mom from the hospital and told them to come after 5 dyas. my brother rushed from california to india 2 weeks back and he took mom to the onco again. then the onco said that there is tumour, but he is not sure whether it is cancer or not, but surgery is must. my mom went thru surgery last monday and lost 1/2 of her tongue, including the tip. the 'small tumour' turned out to be 2.5*2*3 cm scc. the onco didnot come to see my parents for 5 days, and even when he came, he said he hasn't seen the report. Today my mother is dischareged. She obviously can't speak. The onco has asked my parents to come after a week. he says radiation can't be given, chemo can't be given, he will treat the cancer with medicines.
Eeswar, can you please tell me has India invented some new miracle cancer drug which I am unawae of.
The onco is supposed to be the best and most experienced in bangalore. I am so tired and frustrated. I can't sleep, nor eat nor relax. I am scared to face the nights and dread mornings.
swati

Hi Swati, I understand your frustration but probably your mother is being treated in a wrong hospital under a wrong onco. A good CCC does not work the way you are mentioning. My father had agressive treatment both the times and even at this point of time his onco is suspecting another recurrence but he says it is too early to conclude and he explained me very correctly why he is waiting to 3 months to be over before a biopsy or PET/MRI.

Now regarding Onco's decision not to do Chemo and/or Radiation, it is always better to get a second opinion even if your mother has to travel to Delhi (RGCI) or Mumbai (Tata Memorial). At my end, I can offer to accompany your parents in case they plan a trip to Delhi.

The miracle cancer drug may be immunotherapy but this is not the only option that he should be looking at. There is still scope for unilateral radiotherapy as Amit's mom is getting.

Amit's Thread: http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=143054&page=1

eeshwar,
I think you are an angel. I emailed your post to my brother. if it's ok with you he will contact you directly. his name is is nagesh. That's so nice of you. I spoke to my brother today morning. she had an appt. today. he said no treatment or u.s trip till next 6 months. i had given up on good people in the world till i registered in this post. i appreciate your help/ support so much.
thanks
swati