hi!
I am new to this. My mom in bangalore, india was diagnosed with scc right side of tongue stageII/III in feb. went through surgery, removed right lymph nodes and salivary gland and then went through 71/2 weeks of radiation. It finished in june. After 2 months she started getting pain in her left side and her left ear and left side of tonsil/lymphnode started selling. Dr. said tonsil infection and gave her 2weeks of antibiotics. Nothing helped. In the night times the pain is more. she went to her oncologist. He found a small lump like thing on her left side of tongue and prescribed higher dose of antibiotics for another 2 weeks. after 2 weeks he found that lump has decreased and told her to come after 2 weeks. That was yesterday. Yesterday he said that the lump is still there, but small so he needs to do biopsy. I am so scared. As she already went through radiation on her right side and it was very hard, I am scared for her chances.

She is a nonsmoker, non-drinker, no tobacco. She is 68 years old.

Please help, anybody, please.

sincerely,
swati.

Swati,



First breath, don't let fear overcome you as that helps with nothing. We have a saying on these boards that its NOT cancer until a biopsy says it is so we have to wait for the results. Until the results come get mentally and emotionally prepared to support your mom if it is a recurrence and take every opportunity to let her know how much you care.

None of us are guaranteed our next breath so be sure to enjoy every moment without letting fear and worry steal whatever joy you have in the time you are blessed with. One step at a time, that's the only way to move forward.

Keep your chin up

Eric

Agreed, if it's still there it needs to be biopsied. Did she have a CT scan? MRI? I'm assuming so. This cancer can sometimes jump sides. They should scan her as well. I know she's been through a lot. They can still operate to remove the spot. Some of it could also be related to the radiation. There is a spray radius despite the fact that it is focused, it's not always confined to the focus area. My hair thinned out all the way up to my crown on one side. despite the fact that the radiation was aimed at my tongue and neck! Also The affects of the radiation can last a long time. I have had tender spots on my tongue on the good side all along. They get better they get worse. They are not solid lumps more like areas of irritation related to the radiation. They are easing now, and I'm almost 6 months out. Good luck - I hope it's nothing.

Hi Swati, I would agree with Cheryl and Eric. My father had developed a sore on his right tongue 3 months after radiotherapy (for his left tongue) and it was bothering us. We consulted the doctor and he adviced Biopsy but I was reluctant for another biopsy and asked for PET/CT first and if required, follow up it with biopsy if something suspicious comes up. Thankfully, it came all clear.

Hi!

I got the biopsy report today. They say it is cancer again. I am very scared. Does she have any chances?

Please advise.

sincerely,
swati

Swat,

I am currently starting treatment for a second time. They say I have a chance and you will find a number of people in this site who have battled this disease more than once and survived.

Given that her second occurance looks small I would think they could treat her succesfully. We will all be praying for you here and best of luck.

Remeber to take this one day at a time. there is always hope and medical science has come a long way in treatin recurrance of oral cancer so keep your chin up.

Hi Kelly,

Thanks. It's just that she is in India and I am in U.S. I am begging her to come here, but with no insurance, my parents don't want to come.
I know I just have to keep hope, but kind of getting hopeless. the new one, it's only few cells, it seems, came after just 21/2 months of radiation.
Is total tongue removal only choice

please advise,
swati

I am very sorry to read of your mother's recurrence. Of course she still has a chance. I am not very familiar with health care options in other countries. I can only tell you that a recurrence needs to be handled quickly and with the best medical professionals. I know here in the US there are many top doctors and cancer centers where she could get treated.

I have had oral cancer 3 times and luckily gotten thru it. Do NOT give up hope. Did the doctors suggest your mother needing a total removal of her tongue? Many times with surgeries a doctor will determine things like that when he is in there and taking frozen sections to view clean margins.

Please reread what Eric wrote about letting cancer steal away your time. Stay positive!!! When people get upset its difficult to think clearly.

Best wishes to your mother!

Dear all,


Thank you all so much for all the support. Right now they are going to remove her teeth as the radiation damaged the gums. The problem in India is that we can't tell the doctors anything. They do what they want. I am telling my father to get a CAt scan done, but the oncologist says it's not necessary. I have not able to sleep in nights. Can't get leave from job to see mom as I went in may/june. So feel guilty and upset all th times.
Thanks to you guys, I can vent my feeling out.

Yhanks again

swati

There is something called FMLA which would grant you time off to care for a sick family member. You are allowed up to 12 weeks per year. The only stipulation is that you have worked a full time job and have been with the employer for at least 1 year. If you have 11 months and 29 days, you dont qualify. Thats how strict it is. So if you used FMLA in May and June for 8 weeks, you still have at least another 4 weeks left. This is a nationwide law so you really could go as they cannot deny you and must hold your job.

Hi Swati, I also happen to be a caregiver to my father who has just completed treatment for his recurrence. He had his treatment here in RGCI, New Delhi.

With doctors, you have to be very clear as to what you are asking to convince them. Since your mother had a recurrence in tongue, total glossectomy seems to be the only choice that doctors have. Doctors may not be looking for CT scan as they are not suspecting any mets to nodes (since the new one is small). Once the surgery is over, probably they will look at re-radiation with chemo.

And, I would suggest that you visit your mother as being there it puts you in more difficult situation. Whatever the stats says, early recurrence are also curable. Only doctors have to put more efforts to work out a feasible treatment plan.

All the best, we all are there to help.

Dear Christine,

Thank you so much for the info about FMLA. I have worked for this dr. for 5+ years.
I want to ask anybody who has gone thru total tongue removal about the quality of life. Can the tongue be reconstructed. How about eating and speaking.
For my mum, her onco had done needle biopsy and one lab in India said cancer. the onco wanted a 2nd opinion and sent it to different hospital. The 2nd lab says need to do wedge biopsy. Now my mum's onco is not there in the clinic due to festival holiday in India.
I am so frustrated and depressed at the callous way my mum is being treated. She doesn't want to go to different onco as she is very comfortable and other onco's in the hospital won't touch her case as her Dr. is a senior one in the hospital.
Does anybody know about visitor's insurance. I desperately want to get her here as I am not happy with the way she is being treated in india. it's been 2months nearly she has pain.

I know too many questions. Please help.

Miss Kate is the one to ask she's been through a total glossectomy. And she's An amazing woman she'll probably pop in soon. There are a few people who can answer questions because they've also been through it. I wish i could answer your inurance question but I'm in canada. Good luck! And take care! Hope everything goes okay with your mother's treatment and you get it all sorted out!

Hi Swati, your apprehensions about not getting good treatment is misplaced. I am not sure which hospital your mom is getting treatment, I hope it is a cancer speciality hospital. In India, onco surgeons do have expertise in reconstruction of total or near glossectomy with techniques like dynamic flaps etc.

Needle biospy is not as reliable as wedge biopsy and it is a good idea to have a second opinion. You would need to push other onco in his team to have that biospy done as quickly as possible as any incisional biospy result will take a week (approx). Take his onco's number and give him a call where ever he is.

thanks for the info. Right at this minute my father is waiting for 2 hours to talk to her onco in bangalore. He has show the second opinion report that says wedge biopsy needed. the onco says her teeth are bad they have to BE REMOVED. The dentist says her teeth are fine and they are strong, neck pain and shooting pains in the ear are due to the lump in her tongue, so get the lump removed. The onco just now met my father and said get the teeth removed. Now my poor father is running to the dentist.

Wanted to know if worst comes to the worst, what is the life after tongue removal. how do patients communicate and eat.

please advise,
swati

She may not need a full tongue removal - depending on size and location she may only need a partial. Regardless of this life is okay will either a full or partial. There are people here who've had both. She may have to work on figuring out what works for her in terms of eating but eating and speaking are possible. I think personally it's best for you to be here if you can - older people -especially if they are not familiar with the medical establishment tend to fall into the old mind set of dr know best. Often they do but sometimes they need to be made to look for alternatives - you could advocate for her easier in person rather than trying to push your dad to. good luck!

...also, before having all the teeth removed, you may want your mother to have a second opinion from an oncology dentist in case her dentist doesn't formally treat oncology patients.

Sometimes a doctor will over-treat because he or she prefers to err on the side of caution. But, often, a doctor will be unnecessarily aggressive in treating or suggesting things like teeth removal because he or she doesn't have the benefit of seeing a wide variety of situations and nuances with patients. They don't see as many cases as would be seen by a doctor at a Comprehensive Cancer Center.

Probable reason for teeth extraction could be that post your mother's first radiotherapy, she may be having limited mouth opening (trismus) and glossectomy is a open mouth procedure and it may be difficult to reach the tongue in current setting. Second reason could be that they are also planning re-radiation and the teeth that are already in bad shape may not be able to survive another onslaught.

Sandy is right about second opinion from oncology dentist as a normal dentist may not be able to assess it correctly in light of previous treatment and planned treatment.

What is the outcome on having wedge biopsy? Is your mom's onco ok about it? Has your father been able to get the details of treatment that is being planned?

And yes, you can read about Miss Kate here: http://www.ucsfhealth.org/patients/brown_kate/index.html

This should answer few of your queries.

Hi all!

Sorry for the quietness on my part. Two weeks back, my mom's ear pain got so worse that she had to be admitted in the hospital. They are giving her morphine injs.to control her pain. They at first thought it is some kind of nerve pain, but last sat., they did 2nd bipsy and it came as positive of squampus cell carcinoma. now it is in the middle of her tongue and it might be spreading to the bottom also. The drs in india are still debating about the surgery as it no longer in the edge.
I don't know what their decision going to be.
Thank you christine, for sharing your experience, when I read all your experiences I kind of ok, otherwise I had almost become suicidal. The thing is I am overcome with guilt as two months back, when my mom was fine I told her to drink aloe vera juice to boost her immunity system. After two days, she got thraot pain and after seven days of drinking aloe vera juice, she got the lump on her tongue. Although she stopped after seven days, the pain in her ear started and since then has steadily gone worse. My mom blames me for her condition and I am overcome with guilt.

thank you all for being with me, all of you.

swati(sue)

Thank you for the kate's website. It is very helpfull. Mom's onco did a wedge biopsy sat, 10-30-11 and the results came yesterday as positive recurrence. It is in the middle of the tongue. She just finished 37 sittings of radiation on june 12th. The onco still hasn't given his opinon what he is going to do. No CAT scan has been done yet. Just waiting and it is torture for us so far away.

thank you fo being here with us, eeshwar, helps me a lot.

swati

Hi Sue.

I had never heard of aleo vera juice so I did some quick research on the net and EVENTUALLY I found some negative side effects, but basically is is a well known herbal remedy. Most of the side effects are about it being a laxative, or having a different coloured urine while taking it and prolonged use could result in a higher risk of colon cancer. NO WHERE does it say ANYTHING about oral cancer. NO WHERE.

I feel so badly for you. You had ONLY the BEST of intentions when you recommended that she try this, are now feeling guilty for something that no doubt was going to happen regardless of what your Mom ingested. Who knows how clear the margins were before? And she only drank it for seven daYS?? Ridiculous, IMHO, to think that would cause a recurrance. Good Lord if that was the case I am sure we would see hundreds of thousands of internet articles about the extreme danger of 7 days of aloe vera juice!! You say your Mom is angry at you - but perhaps she is just upset with the situation?? You do need to talk to your Mom, explain how you feel and the fact that her recurrance was not caused by this juice. I'm sure in time she will come to her senses and realize that. Perhaps you could even be in on a conference call / skype with her and her oncologists next time she goes for a visit?? You could then explain your concern directly to the oncologist at the same time as participating in the treatment plan.

Hugs to you. Let this guilt go. Its not your fault.

Donna

Swati - the alo Vera juice don't cause a recurrence - it may have highlighted the problem - by bringing it to her attention, but likely - it was the there growing all along. Hugs try not to worry too much.

Thanks Donna and Kelly,

you are both blessing. I just feel so bad. It's good to take it out. Appreciate all the hugs. I just feel helpless against this dreadful disease. I wish there is some cure some hope somewhere.
I will update you of mom's condition, dad is the only link between us. Mom has been discharged from hospital as her onco doesn't know what to do. He sen message thru his assistant that they should come after 5days, and he will decide on the procedure. I just hope he doen't remove the whole tongue. I am very worried and you guys are my lifethread now.

Thank you, thank you so much,

swati

Swati,
Your mom is just looking for a reason for the recurrence, and probably she is not thinking too clearly at this point. There is no way a few days of aloe vera could cause cancer in her mouth. If I am reading this correctly she did not have any surgery on her tongue the first time? So her primary was not removed, although radiated. For oral tongue cancer, which your mom has, the preferred treatment is surgical removement of the lesion, then radiation and chemo if needs be. So this was cancer that was not taken care of by the radiation. If I am reading this wrong, please excuse me.

Anyway, my hope is you will find an oncologist who knows exactly what to do, which will certainly include some form of glossectomy. Keep in touch.
Best,
Anne

Sue, please do not be so hard on yourself. Your mother should know better than to point the blame finger your way. Anything you have done and suggested she try was to help her. There is no way that aloe vera juice caused your mother's recurrence. It is just something unfortunate that happened. Do not let this get to you!

I have seen many people go thru radiation only to have another round of oral cancer a few months later. It happened to me also. All it takes is for one teeny tiny cell to have hidden from the radiation to cause a recurrence. There is nothing you or your mother did to change this from happening.

Some people focus on what caused their cancer and never stop looking for an answer as to why they got sick. For many patients, there is no known cause for oral cancer. Some patients will try to figure out what went wrong in their body to cause their illness. Sometimes its just a person is predisposed to become a cancer patient and possibly their weak spot was in their throat. Thats just my way of looking at things.

I know you are very upset about the recurrence. Just going thru treatments once is enough to make all of us oral cancer patients fearful of getting it again. Try to stay positive, we are here to help support both you and your mother. I know being a caregiver is a very difficult job! Patients can show their emotions while a caregiver must cheerfully try to help even when the patient gets stubborn and moody. I think caregivers are very special people, they are angels!!! At least with a recurrence you already know the medical jargon, have the doctors lined up and know roughly what to expect with testing, medications, etc. Dont forget we are here for you, its ok to lean on us.

Best wishes!

Thank you dear christine and anne for being so kind. Mom had surgery to remove the tumuor. The onco said he had removed it completely, but I read the path report after surgery and it says that the margins are JUST clear of the tumuour. Mom had radiation for 71/2 weeks and it was a scary experience.

Thank you guys for being here, you give me courage and hope to go by the days otherwise I was getting suicidal.

Thank you.

swati

hi Guys,

My brother flew to india from california on wed and he got mom's cat scan done, forcefully. the tumour is in left side of the tounge in the middle layers and it is 2.5cm/2cm/3cm. it is pretty big, and mom's onco was delaying things by not doing cat scan or wedge biopsy. Now he is ready to do the 2nd time surgery, but as the tumour is in center of the tongue till left lateral margin, it is going to be tricky he says. Thank good ness, my brother is there to oversee things. i have told my brother to scan the cat report so I can share more details with you all, but I think he is worried to share the complete information with me, knowing my mental state.
i shared Miss kate' website with brother so he can get more information.
I will update you all about the ct report once he tells me more. right now he also is focussing on the surgery.

thanks again for being here with me. Youcan all call me sue.

sue

Hi Sue,

Your mother is fortunate that you and your brother are attentive and assertive advocates! It is frustrating to have to push hard for something that you know is needed.

I hope you are able to feel a little more relaxed now that your brother is in India with your mom. If at all possible, please try to distract yourself with other thoughts or do things to keep your mind busy. I would hate to see you wear yourself out with worry.

Sending wishes for your mom to receive the best care possible. And, I hope that you and your brother can rest a little easier knowing that she will have surgery soon to remove the tumor.

Take care,

Sandy
xoxox

It's great your mom now has someone present who can advocate for her - hopefully the urgery will go well. Please to let us know how she's doing... Take care..

Hi!,
My mom had surgey on monday, they removed 1/2 of her tongue. The tip of the tongue also has been removed with 2 front teeth. She is in the ward right now. The tumour was big. But she still continues to have ear pain, even after the affected part removal. They are giving her pain killer injections, but a little concerned about the ear pain. The CAT scan showed ear canal is fine. They thought that the shoot ear pain is due to the tumour. Anybody has any suggestions.
Mom can't speak or eat right now.They are feeding her through the feeding tube.

Thank you guys for all the support. I would have landed in a mental asylum, if not for this forum.

Thanking you,
swati

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