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