Newly Diagnosed - Tongue Cancer - Oral Cancer Support

Hi, this is my first post!

My mother (Bala Saigal, aged 55) has been diagnosed with an oral cancer.

She had an ulcer in left base of tongue for which the biopsy report says Invasive well differentiated keratinizing squamous cell carcinoma... this ulcer was removed by a small surgery and it has healed quite effectively.

Besides, she also underwent a few other tests including CT Scan for neck & blood tests. The CT Scan refutes the presence of any significantly enlarged cervical lymph node and the blood tests are also clear.

The surgeon also used palpation before to find out any indication for the enlarged cervical lymph node and he didn't find any.

From the above mentioned, facts - can the stage of the cancer be ascertained? Besides, how good is the radiation therapy after the ulcer has been removed surgically? Also, how good are the cures for oral cancers these days?

I'm looking forward to your quick response(s) as we are under tremendous pressure & tension..

Arvind

As far as the staging it is best done with the pathology I think. They do use exams , and Ct and Pet scans as well. Radiation all depends on the stage , location and size and lymph node involvement, your surgeon and or an oncologist would usually discuss that with you . Do they say she needs Rad, therapy ? They say that the earlier the better as far as prognosis. but that is with everything. I am so sorry I can give you no specifics ..as much as I would love to ..But we are all different and each case is sooo specific and we all respond differently , I hope this helps and I am sure you will hear from many more people on here ... and there truley are alot of survivor stories , which I find quite encouraging myself. I hope I have helped a little bit.

Shar

Thanks Sharlee,
Finally, I've heard from a person who has undergone the same experience (many thanks to your reply)..

I'm quite ignorant on the intricacies of treatment though I could find out a few things of relevance by surfing through various sites. I'm sure that the TNM specifications are still to be worked out for my mother and the few things I see are (1) tumor grade (G1) and (2) no enlarged lymph nodes.

However, I'm quite unaware whether they indicate anything (based on your response).. besides, the surgeon did prescribe the Radiation Therapy but he reiterated that the cancerous ulcer has been removed and radiation therapy shall still be done.

Does the absence of enlarged lymph nodes point to anything? --OR-- are there more tests (besides, pathological review) to be conducted to work out the staging?

Thanks & Regards
Arvind Saigal

Hello Arvind

Welcome to the Oral Cancer Foundation Forum. You have found a great place for help, support, information and compassion.

I am fairly new here and in the preliminary stage of treatment. I have read much information on this site and others. There are many people who will respond to your question.

I AM NOT A DOCTOR. From the information given, it appears they caught the SCC in a very early stage as you said the surgery was small and healed quickly. All other tests were negative. In surgery they remove as much tissue as required until they ascertain clear margins.( no presence of cancer )

To GUESS a stage I would say T1N0M0. You did not say if your Mom was getting radiation or not. If THE DOCTORS are certain all cancer has been removed through surgery, they may not enlist radiation treatments.

As for "how good" the radiation therapy is, I do not know. There are many forms. It is effective, but there is callateral damge to "good cells".

As for your last question. The key to any good cancer prognosis is early detection. Chances are much better when caught in an early stage, as was your Mothers.

LIKE I SAID, I AM NOT A DOCTOR. But it appears your mothers SCC was caught at a very early stage and had not even affected the lymph nodes yet. I think you can relax a little. But make sure to watch for any changes and be puctual about all follow up visits.

If I may ask, what hospital did you attend in New Delhi?

Feel free to "surf" this forum. There are two search engines here. One at the top, and one at the bottom of each page. They are dedicated to oral cancer.

Good Luck! Petey

First of all, a big thanks for your reply Petey!

My mother is undergoing treatment at Safdarjung Hospital at New Delhi though we have also consulted and discussed the reports with an oncologist from Rajeev Gandhi Memorial Cancer Hospital.

The radiation therapy has not yet started but from what I hear from the doctors -it will certainly take place.

As per your comment, the surgeon did say that the ulcer has been removed with extra cells where he presumed that the cancer could have expanded. However, he also said that radiation therapy treatment is given with a *presumption* that the cancer has gone till nearest lymph nodes and the therapy is given to eliminate any chances of it. Apparently, the CT Scan test indicate that the lymph nodes are not affected.

I'm right now waiting for the TNM specifications to be worked out. Besides, presence of clear margins will also be ascertained with the second pathological review of the biopsy slide (which we obtained from the Pathological labs).

However, I am keeping myself very hopeful at this point of time.. keeping my fingers crossed!

A positive attitude is key as well !!

If you have specific questions about cancer treatment in India, several posters to these boards have family members who have been successfully treated there. You might search (using the search link at the top of each of these pages) for postings from praveen_peddi, whose brother received treatment in India that appeared to be comparable to the best available in the US.

Information about cancer staging/grade is available here , in the main part of the OCF site.

The latest clinical practice guidelines (2007) from the National Comprehensive Cancer Network (a nonprofit alliance of 20 leading US cancer centers), giving the most up-to-date treatment protocols, is available at http://www.nccn.org/professionals/physician_gls/PDF/head-and-neck.pdf (Gary or Brian -- can you replace the 2006 info on the OCF site with this?). Note that this includes treatment guidelines for ALL types of head and neck cancer, so make sure you are looking at the correct page for your mother's type (the type of cancer is listed at the top of each page).

As you will see, the treatment guidelines contain a lot of "or" language, so two patients with the same staging may end up with different treatments, depending on individual circumstances.

I wish your mother the best.

-- Leslie

A query for my own information..

How much is palpation successful in the diagnosis of the lymph nodes involvement? I've seen quite a lot of emphasis given to this technique in the staging information determination.

Besides, is PET Scan mandatory if nothing suspicious is found in CT Scan for neck?

Thanks for your replies!

There are lots of articles written about treatment of the neck where there is no palpable lymphadenopathy. Some adopt a wait and see approach, while others will follow a more aggressive course under the theory that microscopic cancer could exist in the lymph nodes that would not necessarily show up to palpation, CT or PET.

There is very little "mandatory" here. At our support group yesterday, there were several who had a full course of radiation to the neck, even without palpable node involvement. Probably an equal number did not.

Thanks Jeff.

An update -
I just returned from the hospital after an investigation from a specialist. After seeing the reports, he states that the cancer is in the starting stage though there is no indication of TNM specifications written on any document. I discussed it with another physician (not an oncologist) and he asserts that it shall turn out to be T1N0M0 (first stage).

The Radiation Therapy specialist has asked for 6 weeks (5 times a week) = 30 shots of radiation therapy and my mother starts it this Saturday (12th May).

Do you suggest any precautions to be taken before or while she undergoes this treatment?

I really appreciate your response.. Thanks again!

Kind Regards
Arvind Saigal

Hello Arvind

I am so glad you recieved positive news (early detection/stage). You can use the search engine at the bottom of this page, type in "before radiation" or anything similar. There are many articles. I HAVE NOT HAD RADIATION BUT IT IS IN MY TX PLAN. That said, I have READ on this site a lot about it. Try to get Bala extra hydrated before treatment. And during treatment drink and eat as much as possible. If she becomes weak and de-hydrated they may have to re-hydrate(IV). You do not want them to have to stop or delay radiation once it starts. Are they putting in a PEG? (feeding tube) Many here recommend "Carnation Instant Breakfast VHC, it contain 560 calories per 8 oz. serving. They can give you meds to help save the saliva glands. Make sure she takes it if they give it. Some have said it makes them nausious, and some quit taking it. I HAVE ONLY READ THESE THINGS HERE. NO PERSONAL EXPERIANCE. There is a newcomer here who said they are relocating his saliva glands out of the radiation path. I do not know if this is applicable to you Moms treatment. The search engines here are extremely helpful and cancer dedicated. I hope this helps. Best Wishes, Petey

Arvind,

Are you sure they want to do radiation on your mom? Reading your post it seems they removed the BOT tumor and found no mets to the nodes. If that is correct radiation seems a tad drastic at this point. Can you get a second opinion? Unless I missed something I would personally not go for rad with those facts.

Thanks Petey & David..

David,
Yep -Radiation Therapy starts from Saturday.

You have rightly pointed that despite of no lymph node involvement and surgical removal of cancerous tumor -they are going ahead with the radiation therapy.

And I must point out a fact that specialists (oncologists & radiation therapists) have deemed this to be a *precautionary* measure to eliminate all the possibilities of a spread (though none of the tests indicate it as yet). Perhaps, this is the aggressive approach to treatment --OR-- they suspect something "very" microscopic which is not detected from any of the scans/pathology (apologies for my ignorance)..

As I can ascertain from Jeff's comments above -there are patients who have received the radiation therapy till neck even after being diagnosed with no lymph node involvement.. (please take care to correct me if I have misunderstood something).

Any thoughts?

Arvind,
The aggressive approach that your doctors are taking should be applauded, in my opinion. My husband had small cancer found in one lymph node only after neck dissection - was not palpable, did not show up on CT scan, did not show up on PET scan.

Best of luck to you as you make your way through this.
Anita

I agree with Anita. I had no node involvement and my radiation was optional. After talking with many Dr.'s and ROs, it was unamimous. So, I followed their advice and did the radiation. Totally precautionery however, as a result, I sleep better at night.

I'll also add my vote for the agressive approach.

While my cancer was much more advanced, there was no nodal involvement or mets either. The radiotherapy was precautionary, and is a fairly standard practice in cancer centers in Canada for head and neck cancers.

It was very unpleasant...far worse than the surgery that I had (which was extensive; 17 hours) but I've never regretted having it
Wayne

Arvind,

I'm another one who had radiation after surgery, even though there was no lymph node involvement. (My tumor was a Stage II.) There were evidently some aspects of the pathology report that led my doctors to believe there was good reason to take the extra step -- and that was 18 years ago.

Cathy

I also had radiation with no lymph node involvement. And this was no lymph node involvement that was determined by removing and doing a pathology exam of the nodes and it was STILL recommended. My udnderstanding is that when the nodes are not removed and examined, there is a 30% chance that there can be cancer in lymph nodes and it will NOT show up on a CT or from palpitation of the nodes so it is good her doctors are being cautious and assuming she may have cancer in those nodes and recommending radiation.

Nelie

Thanks All -I'm truly obliged & overwhelmed with the responsiveness of you all..

A further question -
On Petey's suggestion -I tried searching the forum for (during & after) effects of Radiation Therapy. Seems like that the behavior depends on how an individual's body responds to it.

Today, my mother called me up from her office. She was quite panicked due to a conversation she had with a (*very* ignorant) colleague who dictated a few hazards of RT. I had to calm her down b'cos I don't want her to start this treatment in a negative disposition..

But can you please suggest something which can be useful during the treatment besides the following?:-
(1) Extra Hydration
(2) Proper nutrition/enough calories
(3) High Spirits!

Also, I could not gain enough information on PEG -is it something used as a support during RT?

Craving for your replies..

Arvind,

A PEG tube is a tubular feeding mechanism that is installed directly into the stomach of the patient. In my case, about 12" of the tube protruded from my stomach. It is capped on the end and is typically taped in place on and around the stomach/chest area when not in use.

The purpose of the tube is to provide a nutritional route to the stomach for the patient while undergoing radiation to the head and neck area. The effect of the radiation around the 3rd week will cause considerable discomfort to the mouth and throat tissue with your mom to where it might become extremely difficult or even impossible for her to take food/liquid by mouth.

It seems that there are differing opinions around the world in head/neck cancer treatment protocol as to whether or not the patient is fitted with a PEG from the beginning. A lot of this may have to do with what one's insurance company will cover also. A fellow patient at the facility treating me had insurance coverage with a particular company that would not cover the cost of the PEG if installed prior to treatment. This patient got to where he could not eat or drink in his 4th week of treatment and the PEG had to be installed. His insurance company covered it under that circumstance but the docs felt as though his treatment may have been compromised for having to suspend treatment for 3 days for the PEG installation.

The PEG was a major nuisance to me but also probably saved me a lot of grief. There was about a 4 week period where I had to get all nutrition and medications via the tube. You will see in reviewing various posts here that some folks made it without a PEG and my hat's off to them. I don't know how they did it but they obviously managed.

Bill D.

Hello everyone,

I am new to the list. My husband was diagnosed with undifferentiated SCC on April 3rd. He had a sore throat that began in January and had been to see our primary care physician 3 different times regarding it. He was put on antibiotics everytime. Then he went to the dentist thinking it was related to his teeth. Finally, I made an appointment with an ENT (took 3 weeks to get in). He immediately found the growth at the base of his tongue, the space in between and just touching the right tonsil, 2cm.. A biopsy and rt. tonsillectomy was done the same week. The Dr. did not remove the growth. During the healing time, Wayne lost about 5 lbs. from the pain of the tonsillectomy. After it healed, we went to the RO and he explained the treatment process, then to the MO for his treatment plan. A PET scan was done and showed trace amount cancer in one right node. No further cancer anywhere...next the PEG, then the portacath and a few teeth removed.
His radiation and chemo began on April 30th. He has had 10 IMRT's at 200 so far, will have a total of 37. He also had his firt chemo (cisplatin over 4 hrs. and 5FU over 5 days(, will have one more chemo in 4 weeks. He was mildly nauseaus from the chemo and was given Kytril which worked wonderfully. His main problem has been the metallic taste and his saliva glands are drying up. He has maintained his weight so far and is still eating well.

One thing in his favor (or maybe not

) is that I was a certified oncology RN. The RO calls me his coach but, sometimes Wayne I'm sure could find a better term. LOL

The one negative is that everyday, he goes to the MO for the Ethyol SQ injection and then to the RO for the radiation. It is a $50 deductible for each office. Why in the world it can't be done in the same office is beyond me. I asked and was told that the RO nurses refused to "mess" with it. Oh, well, guess we can't change their system.

I want to say that I am very happy to have found this list. It is a Godsend!

**************************************************
Caregiver of husband w/undifferentiaed SCC, TX IMRT X37 @ 200, Chemo Cisplatin, 5FU X2.

One more thing that I wanted to add is that this was such a shock to us as Wayne has never smoked a cigarette in his life. Now everyone asks him how long he's smoked and when he quit. Very frustating to keep saying "NEVER!".

Pam

Arvind, Your list above is very important, please consider adding for your Mom the following: good skin care between each radiation tx., mouth stretching exercises throughout, swallowing throughout, [even if she has a peg tube which I recommend she have for insurance that she can meet her daily nutritional goals], adequate pain meds on hand, good DAILY record keeping of nutrition, hydration, medication, bowel movements, blood pressure and any symptoms that "pop up" along the way. The word that comes to mind here is PROACTIVE! Think "Battle Plan". Wishing your family athe best going forward. Amy in the Ozarks

Thanks everyone -I've jotted down your suggestions. Need to consolidate and discuss with the specialist.

Just wanted to share an Update -
My mother went for getting her RT planned today (although we were also expecting the first shot to happen).. they have done some inking on her face to pinpoint the area needing treatment. Also asked to increase her liquid, semi-liquid intake. Did not really talk about PEG tube or other side affects today.. perhaps, they will take a wait & watch approach as the treatment proceeds and how her body reacts to it!

Besides, she sounded really upset as ink markings will prevent her movement outside home now.

At least, I've seen quite a lot of change in her disposition since the diagnosis. It really hurts to see her lost in some unworthy thoughts (which even keep on bugging rest of the family as well). I don't think that it is something unusual but I'm sure that it can act counter-productive in further treatment.

Waiting very apprehensively of her reaction after the 1st RT shot on Monday..

Arvind,

I'm kind of puzzled about the ink markings keeping her from going outside -- how noticeable can they be? I had small markings put on my face and neck before radiation started (this was years ago, long before masks were in use), and they're still there after 18 years, but I don't think anyone has ever really noticed them.

Cathy

Arvind,

I haven't kept up with the responses on this site because my sister has been back in the hospital again this week. Anyways, I can briefly tell you what choices she made and the outcomes. Her cancer was found early on the left side of her tongue. It's a site that her dentist and she (my sister is a dental hygienist) had been watching closely for changes. She had less than 25% of her tongue removed in two surgeries, first surgery biopsy showed squamous cells, so surgeon went in again to make sure he got it all. He wanted to take some salivary glands and lymph nodes too, but my sister thought he was being too aggressive. About 6 months later she discovered a swelling in her neck and then had a partial neck dissection, instead of the radical that was recommended, and declined the recommended radiation. Margins were clean and she felt she had this beat. She is a non smoker and light drinker, was extremely healthy and physically fit. Into homeopathic health, acupuncture and open to Eastern health approaches. We think the radiated iodine she had to ingest 10 years ago for Graves disease may have lead to this, not really sure. Anyways the cancer returned to more salivary glands and lymph nodes and she had a radical neck dissection and declined the radiation once again....borders were clean, and lymph node was enclosed, even though the surgeon took out a mass the size of his fist from her neck. She recovered quite well, had some loss of movement in her shoulder, but was able to climb Yosemite Falls. Then about 3 months later she started having extreme pain and seizures and a large tumor was found wrapped around the carotid artery in her neck. Surgery was not an option, 7 weeks of IMRT and chemo (cisplatin) are what she underwent. All along she had not wanted to do the radiation and chemo because of all the serious after effects (dry mouth, some loss of taste, ect...., but had no choice at this point.
I would recommend your mother get a PEG tube, nutrition is very important when one is undergoing this treatment.

Your mom will be fine, they found it early and she is doing what the doctors are recommending. The mask is extremely tight and uncomfortable, it was for my sister. She had to take morphine and ativan before each treatment in order to tolerate it, but she also had all the scar tissue from the 2 surgeries to the neck area and the tumor on her carotid artery, your mother will not have those issues to deal with. Try to keep her spirits up and give her your love and support as you are doing now. Be strong, she will be fine.

Nancy