Hi Friends, May I please ask you some help. My Dad in INdia and been diagnosed with Carcinoma Tongue Cancer. We underwent Chemo+Radiation 30 sessions two months ago in Adyar Cancer Institute chennai. Now after 2 months he has got recurrence again in his neck. Doctors advising not to go for Radiation again as it might give more side affects and not suggesting for the surgery either. Basically asking to take pain killers if he gets any pain. But what steps to avoid the cancer from spread.Not giving importance and very lethargic here. PLease give me someother options to try and Im badly in need of help.

Im so very sorry to read about your father. The only options to eliminate the cancer are surgery and radiation. Even chemo by itself will not get rid of all the cancer.

After just finishing radiation, it would be too difficult on the patient to go thru more plus all the side effect it causes are too much for anyone to handle. Radiation causes so much collateral damage to the body that we can only have so much in our whole lives.

Is it possible to go for other opinions in your country or to another treatment facility. Here in the US we have the major comprehensive cancer centers (CCCs) where they are the US's top hospitals and treat with a multidisciplinary approach.

Best wishes!

HI there... tongue cancer (I am assuming it is oral tongue cancer - not base of tongue - which is down the throat...) is normally treated by removing the tumor in the tongue surgically, then usually a neck dissection is added as a preventative to remove a certain number of nodes. Most drs can predict - for the most part - which nodes should be removed. This is what your father's dr. didn't do that he should have.

Radiation is very effective against HPV related BASE OF TONGUE cancer (the one that is found down his throat) But oral tongue cancer can be tricky. Radiation and chemo in this instance are usually used after surgery.

This is a moot point now as they have already done the radiation. I would first want to know if the radiation was to just his head only (just his tongue?) or if the neck was included in the spray radius. If it wasn't he could be re -radiated. However, Ideally they will remove the nodes by doing a neck dissection and wait and see if that does the trick. It's harder for radiated skin etc... to heal however, this surgedry is often done if there is a recurrence in the neck (generally called salvage surgery).

Chemo will NOT cure this cancer, he should have surgery or be re-radiated (with chemo).

He should also have a chest CT to see if there is anything in his lungs as this is where the cancer likes to travel to after the nodes. (not always but a lot of the time)

Hopefully, his chest is clear and they schedule him for surgery ASAP. Mind you at this point because of the radiation, there may be some hot spots on his CT or MRI.

How have they determined it's in his neck? Was it confirmed by biopsy?

best of luck.

Welcome to OCF and sorry about your father. As mentioned surgery and radiation are the only treatments to KILL cancer. Chemo can be used to manage the disease, meaning that tumor growth can be stopped or slowed and even reduced. It will remain but controlled and allow for longer quality life.

This is no certainty but it is an option so demand some discussion about this option. Sending him away with pain meds is doing nothing to treat the cancer in any way.

Good luck.

Sharif, I would second the suggestion to get a second opinion. If you father has had a lot of radiation, the doctors may be reluctant to give him more because of possible effects on the spine. Could he at least have some chemo to help control the tumour? To not treat him at this point means his condition will degenerate for sure.

The longer the time distance is from the completion of radiation treatment the more of a chance reirridation would be considered is just one aspect for its consideration. I heard of a minimum of 6 months to a year, somewhere along my travels. Although, boost dose Brachtherapy may be given after external beam radiation, in certain cases, a short time thereafter, like a week, in places trained in this procedure.

Surgery is often the first line treatment for a recurrence, with or without radiation, addition of chemo, if not, palliative chemo, targeted therapy, for the time being, as mentioned.

See about a 2nd opinion, and good luck.

Hi Shariff, I'm sorry to hear this.
I too strongly recommend you get your Father to another treatment centre for another opinion.
My husband had a recurrence after he completed radiation and Cisplatin chemo.
His only option then was surgery. He had extensive "salvage" surgery and 31 months later is well.
Wishing you and your Father the best.
Tammy

Initially in the first hospital (where the initial biopsy was taken) they recommended for the Surgery however we were informed that the Tongue will be partially removed and the jaw muscle where the tumour is located will also be removed and they did not give any assurance about the survival and a bit harsh. The next visit in the Adyar Cancer Institute informed that they can give radiation/chemo and he can survive without a surgery for couple of years and if required the surgery will be done thereafter. It is actually in the base of his tongue and going to the neck. The tumour is in the base of the jaw below right molar. 5 tooth have been removed for radiation. And now after recurrence they are not willing to do the surgery suggesting him to look for other Private hospitals for the surgery.

We are trying to consult another Oncology surgeon for a surgery opinion. But my doubt is, Is it advisable to perform the surgery now or will it affect more ?

Ideally you should have gone with the initial surgery. I am not sure what you mean by base of tongue? Under the tongue? Molar related and jaw is all in the oral cavity. Therefore it is highly unlikely it is HPV related. To this end surgery would have been the correct choice from the outset. I have had 1/3 - 1/2 of my tongue removed and rebuilt with a graft from my arm, and 40 lymph nodes removed from my neck. Of all of the things done to me this was the easiest to recover from. I speak fine, eat fine, my neck is good but a little numb, and my shoulder (they do cut the neck muscles usually) works perfectly now. I am not sure what the drs were going on about with regards to the inital surgery but ideally with this cancer they remove as much as they can hopefully get clear margins, and then if need be they do radiation and chemotherapy 5-6 weeks after. These are the american standards for this type of cancer. Base of tongue (which is actually down your throat - is usually only treated with radiation and chemo first. Knowing the cause of his cancer HPV or not - is usually helpful in making this decision.

Molar, and jaw involvement can be a little more invasive where surgery is concerned but a good ENT and good plastics guy can do an amazing job.

All this is a moot point as what is done is done, so my advice is find the top cancer center and push for surgery. hugs.

Apologies if I was not clear. It is under his tongue.

The hospital where we took radiation and chemo was not willing to perform the surgery.Hence We took second opinion from Apollo Cancer Hospital in our city. Initial doctors told that they will do the surgery if its only applicable to do and asked to perform Endoscopy. Endo went okay and they told it may be okay for sugery but further asked to take a PET scan to see if its affected in any other location. We went for a PET and came to know my father also has another small tumour in one of his cheek. Now doctors are saying it is not possible to perform the surgery as it is spread to another location.

Also his initial cancer under the tongue is spread inside to his throat and surgery will be much complicated as they might have to remove the voice box and full tongue making the surgery option unavailable. Now they are suggesting to meet Cheif Chemo doctor and will provide chemo for 8 cycles (one each week) and see how it goes and also will prescribe meds to control the cancer.

Totally Frustrated. Fighting hard to save my Father!!!

Im very sorry to read further about your fathers situation. Please understand this site is not made up of medical professionals, we are fellow oral cancer survivors and caregivers. We do not have the knowledge or medical experience to second guess what the doctors are suggesting. From what I understand surgery is the only curative option. Chemo alone will not eliminate the cancer but could shrink it enough to make surgery an option a little later. Ask the docs if this is an option to do surgery after trying a few rounds of chemo. Im not aware of any medications that will control the cancer???

Best wishes!

I am very sorry to hear the reports of the latest visits. Since it has been just two months since chemoradiation therapy and the PET shows the original cancer has spread and a new cancer is discovered, this is a very aggressive cancer.

The doctors there are far better at assessing what the options are and if surgery has been ruled out and radiation too, then only chemo seems like an option.

I know you are totally involved and push for all that can be done to help your father. Hopefully they can at least control the spread and shrink it back some. If that shows good results there may be other options.

That's crap they can remove it from both - once it moves out of the head and neck area that's different but they should operate !

I just want to tell you that my husband had both his tongue and voice box removed. This surgery is possible and quality of life is good. Keep pursuing this option.
Tammy

Thanks for reporting in the option of surgery. I know the term "salvage" surgery which is done after traditional surgery and radiation, so yes it is possible.

Of course, we are not doctors here nor have any specifics to this or any case, so should pursue the best doctors and trust their recommendations, whatever they may be.

Surgery in one instance may offer great prognosis and QOL; in other situations, the outcomes can be very different.

Thanks for all your comments and feedbacks. Really feel happy to see so many of you are caring here and i'm getting more confidence. I will fight till the end. There are few more updates after our visit yesterday.

Met the Chief doctor and he advised to provide Chemo via Tablets (2-0-2) for the next twenty days & asked to return on 20th Nov. Yes, surgery is an option if the chemo helps to shrink it and showing better results they might go for the surgery little later but not for now.(50-50 Chance for surgery)

However after returning home last night, We received our tablets in the noon today. My Father completed his Prayers, Lunch in noon and went to take some rest. After another one hour returned with bleeding in his mouth :'( told us that he had bleeding from his mouth like in clotted way and in lots, He had washed his mouth and showed us thereafter. We really got panicked and called our relatives close-by home. Spoke to doctor over the phone and he said it is okay and nothing to worry and asked to take the medicines for tonight and if case of bleeding asked to take another tablet to control. It did not bleed from the wound in his tongue, However Father feels like it may be from the tumour in his right jaw area. And after the bleeding he feel his pain on the right side has reduced to some extent. Tomorrow morning we are planning to take him to doctor to further diagnose it.

Has anyone of you had similar incidents like this before ?
Please clarify.

Thinking of you and your father. Keep fighting and supporting your father Shariff.
Keep heart, Sophie

Hi, Since yesterday my Father had bleeding for 4 times. Doctor informed nothin to worry and asked to take a tablet in case bleeding. May I please know if anyone had similar situation and what was suggested to be done?

Please advise. Thanks alot.

Sorry to hear about the continued issues. The bleeding is not reported much so not much advise to offer. Many have surgery treatments so I'm assuming the wounds are treated so they don't bleed much as I suspect if it was a concern it would be posted here.

What specific medications and chemo is he prescribed? Giving chemo orally is unusual in USA as it is almost always administered via IV bag.

Hi Shariff, sorry not to be of more help: bellow is a list of how to care for a bleeding mouth. I just copied this info from a medical site. Sophie

Bleeding in the mouth is generally caused by mouth sores, gum (periodontal) disease, or by a low platelet count (cells that help the blood clot). Low platelet counts can be a side effect of chemo or radiation treatment. This is usually a short-term problem (if the platelet count is low, see the section called �Blood counts�). Cancers that affect the blood-forming system, such as leukemia, can also cause a drop in platelets. A person with low platelet levels might bleed easily. Everyday actions such as brushing or flossing teeth can cause bleeding. Side effects of chemo or radiation can include dryness in the mouth or small mouth ulcers, which can bleed.

What to look for

Blood or bruises in mouth (from or on the gums, tongue, etc.)
Rash or bright red pinpoint-sized dots on tongue, under tongue, on roof of mouth, and/or on inside of cheeks
Blood oozing from mouth
What the patient can do

Rinse your mouth gently with ice water every 2 hours.
Suck on ice chips (avoid hard candies if your mouth is bleeding).
Rinse your mouth or brush your teeth with a soft toothbrush after eating. Rinse the toothbrush in warm water to soften the bristles even more.
Use soft foam mouth swabs or gauze wrapped around a Popsicle stick or tongue depressor to clean teeth if a soft toothbrush causes bleeding.
Avoid store-bought mouthwash. See the section called �Mouth dryness� to learn how to make a gentle mouth rinse.
Eat foods that are soft, smooth, and high in calories and protein. Refrigerated soft foods, such as ice cream, applesauce, puddings, and yogurt, are helpful because cold helps to control bleeding.
Puree hard foods, such as apples, pears, etc., in the blender.
Avoid hot drinks, such as coffee and tea. Heat enlarges blood vessels and can make bleeding worse.
Put cream or salve on lips to prevent dryness.
If you wear dentures, keep them out of your mouth, especially if they do not fit well.
Avoid aspirin products. Check labels of over-the-counter drugs to be sure they don�t contain aspirin, or check with your pharmacist.
What caregivers can do

Offer the patient cold water mouth rinses before each meal. Keep ice water nearby.
If the mouth is oozing blood, keep a bowl nearby for spitting out mouth rinses.
Make milkshakes or smoothies in the blender, and offer other soft frozen treats.
Avoid nuts, caramel, sharp or crunchy foods (such as chips or crackers) and foods with hard coatings.
Freeze a few wet tea bags, and have the patient press one on any bleeding area.
Call the doctor if the patient:
Is bleeding from the mouth for the first time
Has bleeding that lasts for more than a half-hour
Vomits blood or material that looks like coffee grounds
Feels light-headed or dizzy

Sophie, when copying or quoting from any source, please list the source. Sadly, not all medical sites are reputable or give medical advice that always has the best interest of the patient in mind.

Personally, I would be very concerned about bleeding from the oral cavity.
I would get to the hospital and have the Dr look in the mouth and also scope down the nose to find where the bleeding is coming from.
Oral cancer patients can have catastrophic bleeding.
Tammy

Yes, I am very concerned about the bleeding, I would insist the ENT specialist make an emergency visite and locate the cause of the bleading. (Some cancer medication can also cause the blood not to cloth as well)

I would also ask the medical team for a detailed plan of action with dates set for surgery. Our medical team told us what they were going to do during surgery and what to expect as far as recovery and permanent changes. You will be amazed at how much is possible.

My husband's case is different but his cancer also started in his oral cavity and spread into his jaw bone and local lymph nods very quickly. With everything happening so fast, and with a stage 4 diagnosis, I was very releived when the surgeon said he would be able to save my husband and have him looking his best. You father will need help 24/7 during his recovery after the surgery. If possible make a plan for your family to assist him in shifts. I did not sleep for 5 days so that my husband could rest.

Waiting at the end was torture: my husband's growth got about 1/3 bigger, his jaw bone stated to pain because of deterioration and nerve pinching. There was also the smell of decay which I did not mention to my husband until he was healed as he did not notice it.

Once they took my husband away for surgery, I was finally able to relax. He was in there hands, and all that could be done would be done. I trusted them. All this to say, my huband came out of a huge surgery and he is living well.

Its important to know if you feel you trust your medical team. Are they keeping you well informed? Do they have a clear plan with clear goals for your father?


Reconstructive surgery has come a long way, there are a lot of options for yoyr father.
Thinking about your family, Sophie







Sorry about the general link posted ealier, not very useful:
http://www.cancer.gov/cancertopics/wyntk/oral/page1/AllPages/Print

Shariff. Sadly I am not sure about the medical system in India, however I can say for the few people that have been on here for that country - I've noticed that they don't seem to follow the standard guidelines for care and treatment of this disease - which is unfortunate. It's hard to tell without knowing the full extent of what is going on with him but if he's not in a large city with a top hospital that treats cancer, then perhaps he needs to get there. Chemo is not known to cure this cancer, sometimes you may get a reduction in size of the tumor, but more often than not It only holds it at bay for a short time - the human body is adaptive eventually it adjusts to the poison of the chemo and then the chemo no longer is effective. This happens rather quickly sometimes. So it sounds to me like they are putting you off. Again I'm not sure of your system there but here - if a dr can't do the surgery you can find out who is the best and ask to be referred. Hugs

It is important to remember members live around the world and have access to a wide range of medical options ranging from practically nothing to truly world class. We know developing countries such as India and Philippines have far less developed medical systems and access is far less widespread than say Canada, England, or New Zealand.

I have no specific suggestion other than trying to understand their situation and plight and offer posts that fit their situations.

What works and is available for some certainly may not be available to others and I'm conflicted whether mentioning, encouraging, or promoting something that is not practical, reasonable, or achievable in their situation is more helpful rather than not.

Hey don - I am well aware of this this is why I mentioned not being familiar with the medical system there. Unfortunately he's stuck with dealing with what is offered to him - however, he can up the game by doing a bit of research and finding out who is tops in the ENT field and who is considered the best surgeon for this type of surgery (and by not allowing location and distance to determine where his father receives treatment if at all possible - i know finances can have an impact on this which is unfortunate). This should be available to him with some questions and maybe use of the internet. A little research may shed some light. Also having a copy of the normal (NCI) guidelines for treatment of this disease and his father's staging when he goes to the the specialist should arm him with questions and concrete support.

hugs.

I believe the NCI guidelines are too vague and only intended to provide a cursory view. The clinicians guidelines followed by the NCCN are the standards used by most cancer centers.

There you go... thank you... same premise... arm yourself with knowledge and go forth... hugs.

Hi Cheryl,

My intent was not to direct my post to you but more generally that each patient has to deal with the realities of their care system, that is all.

I know everyone here wants to and strives to be as helpful as possible. However, I think there is not much realistic benefit by bringing up NCI or NCCN guidelines to someone in the India care system.

I am certain India and other countries have their own set of established or maybe adapted/adopted other medical guidelines and the doctors are probably not only inclined but bound to follow that set.

Sure, the King of Saudi Arabia gets on a plane and gets medical care in the USA but not many have such an option and have to receive care that is available to them; often times at a much lower standard than here in the developed world.

I'm just saying it's great to point out what is available and works to all but there is no need to nudge, cagole, or overly encourage those to seek care beyond their means. Rather, support their effort to seek the best care they can obtain.

We all care a lot so we want the very best outcomes for all but the reality is many will never be able to obtain the very best outcomes, even all here in the USA do not achieve it.

Don, the NCCN guidleines are the global standards for treating cancer, with adaptations for technology, metabolic differences, drugs available, regulations/laws, etc.

While the guidelines have not been translated into specific language versions for all cancers, they are often used as a starting point for comparative purposes.

This is true uptown, sadly from what I gather from many of the patients we've had here from india their medical drs. seem to not follow the guidelines and frankly this is why their outcomes have been poor. This is why I suggested he print off the list and wave it at the dr. there is a reason these guidelines exist because they have proven to this point to be the most effective way of treating this cancer. a series of missteps from the beginning (not following the guidelines) can cost the patient valuable time, money and ultimately their lives. Regardless of where you are being treated - whatever country you are in, you should be seeking out the best treatment available to you. I know finances come into play particularly if you pay for your own medical care... it's sad because quality medical care should be the one thing available to all - but ideally when you or a loved one is sick you do whatever you can.

hugs.

Thanks for the clarification. I looked at this page and just saw USA and did not pick up on the global alliances.

Unfortunately, the "comparison" in nearly all developing countries shows how far their own standards are from complying with NCCN guidelines.

Cheryl,

I totally agree every patient should seek the best care available to them. Having NCCN guidelines in hand does empower the patient to know what is possible and at least inquire about the possibilities of the various defined options.

At least they can seek and push for the very best treatment and care options that resources allow. Thanks Don

Dear all, I would differ from your opinions. India does certainly have one good health care infrastructure with excellent health care professionals, however, the infrastructure is heavily loaded.

The cancer treatment that we get is almost same as what you would get in US or other developed countries, however, we do not have access to experimental drugs due to government regulations.

Secondly, Doctors do not share too much details about disease, treatment, prognosis with the patients or caregiver due to the way people react here.

One of the reasons for bad outcome here is also due to Hospital and Doctor hopping that people tend to do here during course of treatment. If somebody comes and tells you here that their so-and-so got treated in xyz hospital, you would switch hospital and doctor. They also go for alternative medicines (read Ayurveda, Unani, Homeopathy etc).

I think we are still missing an organized guidance and counseling system in India. Hopefully that would change.