Recurrance of Oral Carcinoma left Side of tounge - Oral Cancer Support

Hi Team
My father went Oral Carcinoma treatment in Pune India. I will brief you about the treatment.

Initially in APR 2012 ulcer and white patches were found on the left side of the tongue. So we went to general surgon and did operation. But he removed ulcer locally.

However later we went to IN JUN 2012 Cancer surgeon and he operated to remove lymph nodes. After this my father went IMRT and 2 doses of Chemotherapy. After this we did MRI SCAN which is as expected. And treatment is finished on OCT 2012. After this we were following up with doc on monthly basis.

But after 5 months of treatment now my father complaining about pain in same left side of the tongue. So Doc suggested to do MRI and PET scan. MRI and PET Scan report is showing small tumors in left side of the tongue and no traces in rest of the body.

Doc is suggesting to go chemotherapy doses and later he will decide whether to operate?

Kindly advise when this is 100% cure and my father will be out of treatment. I love mu father much and dont want lost him....

Hi Rahul,

I am no doctor and have not a long history here but my view is the first surgery did not get it all and the surgeon did not have clean margins to ensure he got it all. The rads should have killed what remained but it appears not and this is the place of the recurrence so this makes sense.

Chemo, from my understanding kills only small cell cancers. If the recurrence is large enough, what this size is I do not know, but at some size of mass, chemo does not kill the cancer, it may shrink it but not kill it. So only doing chemo now seems inadequate for the given state of the cancer. Waiting to do surgery seems like losing time rather than doing it now or going back and hitting it with rads.

But as you mention he already had IMRT, so there are limits to the amount of grays one can be given to the same place.

Good luck,
Don

Hi Don

Thanks for your reply. But can u suggest what could be the plan of treatment now to get cured 100%.

There is no guarantee of a cure - sadly. To me though it sounds like he needs more surgery. If you have cancer centers in India go to one. Someone there may be able to operate. It's hard operating on a radiated mouth as there are problems with healing but unless they are willing to do more radiation, to me it sounds like the best option for a cure sounds like surgery. Best of luck. Eshwar - one of the caregivers here may have more advice re drs and hospitals in India, but from what I know chemotherapy alone will not cure this cancer.

Hi Cheryl
Thanks for you reply. Actually the PET Scan report is showing cells only in left part of the tounge. There is no traces in other parts of the body. Doc here in Pune is suggesting to under go 2 Chemo doses then he will decide whether it is operable or not.

However I am going to TATA Memorial Hospital Mumbai tomorrow for Doctors consultation on this. Then we will decide how to proceed on this. Let us hope there should be some way to cure this.

Kindly help suggest me high level plan of action now.

Welcome to OCF! This site is made up of patients and caregivers who help to provide medical advice and support. Unfortunately we do not have medical training so can not develop treatment plans. While we strive to always give correct medical info, it is always advised to seek out the best doctors you can.

I have sent you messages, please click on the flashing envelope next to the "My Stuff" tab. This will help you learn how to navigate the forum.

I have also sent this over to a member from India who is very good with advice. They should contact you shortly.

Best wishes!

Rahul,

Typically if you can see cancer on the PET with SUV higher than low values (don't ask what is low, still trying to find this magic threshold) , then my understanding is that chemo will not CURE (i.e. kill completely) those cancers. Make sure to ask more about the PET and ask about the SUV value and if they feel that chemo will KILL it or just manage it (i.e. reduce its size or keep from growing).

If he says it will not KILL it then you are not on a curative path. If they say it will kill it then, just out of personal curiosity, quote that portion of the report that describes the parts that "lighted up" on the PET. Include measurement and SUV.

good luck,
don

Hi Rahul, I hate to say this but the first surgery by a general surgeon complicated the case! Ideally, partial glossectomy + selective neck dissection followed by concurrent Chemo-Radiotherapy for 4 weeks should have been a planned course of treatment.

As you have mentioned, visit Tata Memorial immediately. Your father certainly needs second opinion. Cancer is such a disease that nobody can guarantee you 100% cure. Doctors (in India) would not share too much of details so you would need to interrogate them and understand what is the course of treatment and the effectiveness.

If chemotherapy remains the immediate option, kindly discuss the possibility of induction chemotherapy (Docetaxel + Cisplatin + 5FU), which probably will give him better chance. There is a possibility that this is what oncologist in Pune would have planned.

You have not mentioned the size of tumor, so there is a possibility that if the tumor is large, the doctor is looking at shrinking it with chemo so that they can save more tongue and get sufficient margins as well though healing would be an issue.

Radiation may not be an option as your father would have already received 60 Gy during the initial treatment.

Not to scare you but it is going to be tough road ahead. May god be with you and your father. I have shared my number on PM, feel free to call should you need any guidance.

All I can say is. " never say never or give up". Some of us have many surgeries , scans and scopes but the more they do they worse you feel. Good luck to your dad and you. Has the Dr biopsied it?

Hi All

Thanks for replies. I have visited TATA MEMORIAL HOSPITAL. They looked in to files reports etc from beginning. Based on latest MRI and PET Scan reports, they told to have Biopsy before further treatement can start. It's high possibility they will start Chemeo based(palleative or curative) on Biopsy reports. Also they are going to do Biopsy under minor OT under oncosurgon observation. Radio and Surgery options are not applicable now.

Also I would like to update that I am from Engineering backround and dont know much of the medical terminologies in detail. However my younger bother is Intern Medical doc here(just completed MBBS) here in Pune. I will ask him to more specific details from reports in this forum.

Thanks
Rahul.

Rahul, thanks for posting back. Good that you were able to visit and get opinion from Tata Memorial. Since your brother is an intern, always take him along (if possible) whenever you visit the oncologist.

Get that biopsy done quickly, well still hoping that the hotspot is from healing rather than the disease!

All the best.

Hi All

Frozen section/Biopsy done at TATA MEMORIAL Mumbai confirmed that this is case of recurrance. Doc at TATA MEMORIAL Mumabi advised to have chemothearpy at pune or mumbai and then they will check whether surgery is possible or not.

We decided to have chemothearpy at Ruby Hall Pune. Doc at Ruby Hall Pune suggested to have 3 chemo PFC regimen( Paclitaxel + 5 Flurauracil + Cisplatin). Most probaly getting admiited to Ruby Hall today.

Here are specific updates from PET SCAN report:
ILL DEFINED LESION MEASURING 2.5X4.7X4.3 CM IS SEEN IN LEFT HALF OF MID AND POSTERIOR TOUNGE WITH EXTENSION TO INVOLVE LEFT TONSICULAR FOSSA AND LEFT LATERAL OROPHARYNGEAL WALL(A RECURRENT LESION).

Kindly advise.

Hi Rahul, your father is having chemotherapy, which in US is known as TPF. You need to take absolute care of your father and specially after 7 days of chemo as he'll be approaching Nadir (low white cells and low immunity). This link will give you some info: http://www.christie.nhs.uk/booklets/568.pdf

Take care of diet, discuss with a nutritionist to help him out. Just a piece of advice, ask the doctor to have a review MRI after completing of second cycle of PFC. If the tumor is shrinking and your father had positive benefits, then only progress with 3rd cycle.

Take good care of your father, it will be a very difficult time for him and your family. All the best.

Hi Eshwar
Thanks for your valuable reply!

Actually on first day withing first half hour of chemo dose PFC regimen( Paclitaxel + 5 Flurauracil + Cisplatin), My father had reaction (low blood pressure). He was shifted to NTU for one day.
After this doc decide to continue this cycle with 5 Flurauracil + Cisplatin only.

He told in next cycle he will change Paclitaxel to Docetaxel.

Kindly help to advise on this.

Paclitaxel and Docetaxel (Taxotere) both are Taxane category of chemotherapy agent and they mitotic inhibitors (prevents cell divisions). Paclitaxel can sometimes cause a temporary slowing of the heart rate known as bradycardia, usually harmless. Let this cycle be completed with 5FU + Cisplatin, you would still need to take lot of care.

All the best for the treatment, do remember to have review MRI before third-cycle. Go for it only if 2 cycles have helped.

Hi Team
Chemo Cycle 2 is started for my father today. The doc decided to give Docetaxel(instead of Paclitaxel) + 5 Flurauracil + Cisplatin.

But my father is still complaining in left side of the tongue, Also in left shoulder/neck area. Currently doc given some painkillers.

Kindly advise on same.

Okay I looked back and reread part of this (so forgive me if I missed any information) - You're dad's cancer will likely not be cured by chemo. If there is NO REASON why he can't be operated on (the fact that he was already radiated and this can cause issues with healing - might be one of them), surgery should be the preferred form of treatment. Since it has not metastasized, it is a good thing to get it now before it does. Unless the surgery will strip away his quality of life, then I would push for that. I must say 2.5 x4.5 is a large tumor... not huge but big enough. Mine was 1.5 x 2.5 and that cost me a third of my tongue. A tumor that size will likely not respond to chemo. Of if it does, it will only be minimal.
I am not sure of the details of your dad's tumor and the structures around it that may be effected, but really, unless there is really good reason not to operate (again the radiation he's had may be an issue with healing - but a few people here have had salvage surgery after rads and they are okay), then as I said, surgery should be his treatment. I can't say anything for certain of course as I am not a dr. but from what I know about this type of cancer, the chemo is palliative not curative. Someone else will correct me if I am wrong - I am sure - but this that's pretty much common knowledge around here.
best of luck... PS tongue cancer can be very painful, this is normal.

Cheryl, I do not believe the induction chemotherapy is with curative intent - the oncologist are probably trying to control the tumor growth and salvage as much as possible. Most likely it will be followed by surgery and radiotherapy.

Hopefully, but if it isn't shrinking the tumor then they're wasting time.

That is why I suggested followup MRI after second cycle and before third one.

Hi All
Thanks for posting back...
The chemo 2 cycle was completed yesterday (Docetaxel(instead of Paclitaxel) + 5 Flurauracil + Cisplatin.)

Doctor told to have injection NewFill Safe for 5 days.

However next chemo cycle is planned on 7th May, as chemo 1 cycle was incomplete(only consisting of
5 Flurauracil + Cisplatin only. My father had reaction (low blood pressure for Paclitaxel)

As of now Doc did not advised for MRI scan...

Kindly advise.

Hi All

The chemo 3 is started cycle started today, similar to cycle 2, consisting Docetaxel(instead of Paclitaxel) + 5 Flurauracil + Cisplatin.)

As chemo 1 cycle was incomplete(only consisting of
5 Flurauracil + Cisplatin only. My father had reaction (low blood pressure for Paclitaxel)

Also by physically examining doctor told there are postive effects with chemo cycles...

Doctor told to have MRI/PET scan after 10days of current chemo cycle 3.

Kindly advise.

Rahul,

Thanks for the update. Hope he is doing alright with the side effects and the triple combination is pretty tough. don

Rahul, thanks for posting. I hope your father is doing fine.

Hoping for good news after MRI.

Hi Team

Here is the report details for PET SCAN performed today 13th Jun 2013. Kindly advise how to proceed now.

- Persistent heterogeneously ehhancing FDG avid(SUV max 12.2 <- previous SUV max 13.6) ill defined lesion is seen in left half of mid and posterios third tongue, left tonsilar fossa and left lateral oropharyngeal wall. The lesion shows areas of central necrosis within. The lesion now measures TRA 2.5 X (AP) 5.2 X (CC) 4 cm (<- previous size (TRA) 2.5 X (AP) 4.7 X (CC)3.8cm. Caudally the lesion extends upto hyoid bone. However no obvious erision seen.

-Impression:
-Persistent heterogeneously enhancing hypermetabolic recurrent lesion seen in left side of posterior tongue and left tonsilar region. There is increase in central nerotic areas within the lesion.
-No significant metabolically active disease seen elsewhere in the body in current PET-CT study.

Thanks
Rahul

Sorry I may have missed something but why aren't they operating to remove this tumor and why aren't they using IMRT? Necrosis means dead cells and that typically means cancer and this cancer will not be killed off by chemo alone.

Hi David

Thanks for reply.

Kindly note my father already operated 2 times followed by IMRT and 2 chemo. But later during investigation it was found that there is Recurrance happened. So they told it is risky to operate or to have IMRT again and they advised chemo cycles.

Kindly advise.

Thanks
Rahul.

Rahul, sorry to give you the bad news, the chemo did not serve the purpose of reducing/killing the tumor. Almost similar to results that my dad got.

Discuss with oncologist regarding Erbitux, it is an option but very expensive. Alternatively, your father will have to be on palliative chemotherapy for rest of the life. The journey is going to be difficult from here. All the best.

If you are looking for a potential cure - radiation or surgery may offer you that - but only if the day will do it.

chemo will not cure this cancer. Hugs. And best of luck.

Please understand that chemo alone will at best only prolong his life but if it's possible to reradiate that should be considered. Many on this site have been radiated more than once.

Thank you all for replies..
Actually yesterday doc here advised below tabs for one month.

I have purchased the below tabs and my father went to home town now.

Tab Geftinat ==> 250mg daily ( 0-1-0)
Tab Methotrexate ==> 2.5mg (Mon to Fri) (0-1-0)
Tab Calcium Leucovorin ==> 15 mg (Sat and Sun) (1-0-1)

Kindly advise.

Thanks
Rahul

Doc has started palliative chemotherapy for maintenance.

Gefitnat is Gefitinib/Iressa - Not too many studies on effectiveness on OC. My dad was also on this but 500 mg daily. The side-effects may include nausea, vomiting, anorexia, dehydration, skin reactions/scaling of skin, diarrhea etc.

Methotrexate or MTX - is again chemotherapeutic agent, historically most frequent drug used which kills cells by masquerading as folic acid and turning off DNA and RNA synthesis necessary for life. Side-effects may be Loss of appetite, Sores in mouth and on lips, Diarrhea, blood in urine/stool/vomit,headache, fever (due to immuno-suppression). 2.5 mg is kind of low dose. Infact the combination is relatively new for me to comprehend.

Calcium Leucovorin is given as MTX Leucovorin Rescue to prevent good cell damage especially white matter, sheaths, bone marrow and gastrointestinal mucosa cells.

Remember to follow the dosage, review with doc. You need to take good care of your father, please keep in mind that the treatment is not curative in intent. Unfortunately, in India, we do not have enough clinical trials so it is almost end of line unless you decide to go for second opinion abroad.

Hi Eshwar

Hope you are doing good...!!

It's been 4 months now with below tablets. Actually there is significant weight loss and hameglobin also dropped to 7.8 in yesterday blood test report.
I am going to visit doc today but my father did not came and he is in home town only...he is not having enough stamina to walk also... I am worried now...

Kindly advise.

Tab Geftinat ==> 250mg daily ( 0-1-0)
Tab Methotrexate ==> 2.5mg (Mon to Fri) (0-1-0)
Tab Calcium Leucovorin ==> 15 mg (Sat and Sun) (1-0-1)

Thanks
Rahul

Hello Eshwar & Rahul

Hope you are doing well..!!

My father at age 74 ,was having on EARLIER stage right side Vocal Code throat cancer before a year. He survived from it by radiation therapy, after 6 months of treatment again in PET scan recurrence of tongue cancer, doctors prescribed oral chemo therapy, dose of Gefitinib 250 mg everyday.. coz as per Doctors at this age other chemo & operation are not possible. After 1 month taking medicine cancer was totally disappeared, as per radiation oncologist , he was also surprised , he said his response is very good... But after a month he was having pain in left side he used to take 4 pain killer in a day still he can not make it out...Now when we show the surgical oncologist he said its not gone, its just stop. And pain is roaming around everywhere..!! As per Doctors recurrence is always danger. We are very much on worry...taking 4-5 Dyclopara also effect kidney in future... Even he was not able to drink water, when he was eating something or drinks anything he gets IRRITATION & COUGH. Now IRRITATION & COUGH are decreased & he used to take 2-3 pain killer a day. Pain-clinic Doctor's also prescribed Dyclopara & Morphine 5-6 in a day but till now he didn't take... But now one new problem has started, He is having pain & some like a cramps in whole body.
Here i would say that he sleep whole day & used to get at 5-6 o clock in evening, after he is going to bed at 2 or 3 AM & still he can't get sleep till morning, what i mean to say his totally sleeping system has become odd...
what to do can't understand...what is exact status that also can't know coz doctor said no need to do PET Scan, one Medical Oncologist said his response is good so no need to do any Scan. Surgical Oncologist said Don't want to give him trouble in this age to doing any Scan. Radiation Oncologist said his response is good & Decease is not appear in tongue rt now but in same place in Vocal Code it feels, might be it is coz of post radiation but decease is there & coz of his good response he can survive life long...
So confuse from all Doctors & can't understand what to do...Rt now whole body crams & pain is the worry for us....

Thxs & Wish U all Good Luck....

If the cancer is still there chemo will not cure it. He really should have the surgery assuming it hasn't spread, I would look into having another ENT give you an opinion. Best of luck.

Thxs Cheryld for your reply

But as per doctors opinion age is big factor to can't do surgery. They suggested that at 74 of age it is risky & not tolerable for patient... And also take second opinion of Doctor in TATA MEMORIAL in Mumbai India, They said line of treatment is going ok & Palliative cares & medicine required so i am in tension...can't understand what to do ??

Hi Rahul, I am doing fine. Incidentally I had been away from forums for quite some time and somehow felt today that maybe someone might be waiting for my response.

It seems like cachexia has started to set in for your father. Discuss with doctor for protein rich, hyper-caloric feeding and nutritional intervention as well as use of corticosteroids to stimulate his appetite. If you have not started Prosure, please do that as soon as possible. I hope doctor has also given him some antioxidant capsules as well.

Take care of your father.

Hi Soofy, sorry to hear about your father.

Your father is also on palliative maintenance with Gefitinib 250 Mg. For pain relief, dyclopara is probably no more sufficient, discuss with doctor about Tramadol/Ultramed. You may have to later progress to Paracodeine.

If he finds difficult to swallow, ask doctors about using Fentanyl transdermal (Skin) patch or equivalent to help him with pain. Doctors may need to perform some evaluation before using it. If he has had weight loss, he also needs dietary intervention.

Take care of your father.

Hello Ehwar & All

going through very tough phase... It is swelling like small ball in father's tongue...continues saliva coming throu mouth ,not able to shut the mouth, also swelling in lips...

Blessings to you hopefully you can find something to comfort him... Hugs

Hi Eshwar/All

It is very unfortunate to say that my father is no more now...passed away on Jan 13th. Me and my family are recovering now from this huge shock...

It happened all of sudden actually...there was heavy bleeding through his mouth and after that within few minutes he breathed his last... luckily my brother was present at home... or it will be very difficult situation for my mother to handle...

He saw lot of ups/down in his life...From nothing almost nothing He raised our family... me to become Engineer and brother to MBBS ...he was with us till now...But now when happy days were coming in his life and he left us....

Sometimes I feel I should be thankful...as he is now relieved him from all his pains...as when i went to see him on first week of Jan... I cried like anything by seeing his pain...

Thanks
Rahul

Rahul,

I am very sorry to hear about your father. He had been feeling poorly for some time and at some point one's body just can no longer keep going. I am glad you have family close to comfort each other. Thank you for returning here to offer an upate. Don

Rahul, I am very sorry for your loss. My sincere condolences to you and your family.

So sorry for your loss.. Blessings to you and your loved ones.

So sorry for your loss. My condolences to you and your family.

Rahul, my condolences to you and your family. I'm sure he was incredibly proud of you and your brother's accomplishments, and counted those as very happy days indeed. I know what you mean about your brother being with him, it is incredibly comforting to know that he wasn't alone. I hope that happy memories of your father wash away the painful memories of his difficult passage.