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#20065 03-28-2006 02:37 PM
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krishna Offline OP
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Hello Everybody,

My Father was Diagnosed for Tongue Cancer - T2N1M0 last month. This is the first time I have heard of the Big "C" word in my family including far-distant relatives also. So I am totally unaware about it. Reading over the internet, it seems like this is graded as stage 3. I have many questions regarding this like what kind of treatment is best, what is the survival rate, what are the side-effects, post-treatment precautions and follow-ups.

Steps taken till now:

A surgery was performed where almost half of the tongue was removed. 3 Lymph nodes were removed. A gland was removed.

Out of 3 lymph nodes, one lymph node located on the same side as ulcer on tongue, came positive. The tumor is well to moderately differentiated.

A radiotheraphy treatment for 5 weeks was suggested by a doctor.

Is there anybody who was recently diagnosed with similar kind of problem. If yes, Please reply to this message. Please provide as many detials about your case as possible. Your help will help me a lot in providing best care and treatment to my father.

Thanks a bunch,

Krishna


Tongue Cancer T2N1M0 - Surgery done 03/03/06. 5600 units Radiation completed 05/19/06.Recur 10/06 skin metastasis nodules. Electon beam radiation completed. Immunotherpahy suggested.
#20066 03-29-2006 06:40 AM
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Your certainly at the correct web location. Probably 80 percent of us have had tongue cancer. Radiation coupled with Chemotherapy is standard treatment after surgeries, etc.
If you live anywhere near a comprehensive cancer treatment center get him there for treatment.
Darrell


Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
#20067 03-29-2006 06:50 AM
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krishna Offline OP
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Thanks Mr. Darell. I see that your SCC had a recurrence. Is it very common that after treatment also it re-occurs. What are the steps to avoid it to happen again?

my father was not recommended for chemo. He will take radiation starting next week. What kindo f radiation is best - I see on internet that IMRT has very less side effects and is advanced. Pleas throw some light.

Thanks for your prompt response.

Krishna


Tongue Cancer T2N1M0 - Surgery done 03/03/06. 5600 units Radiation completed 05/19/06.Recur 10/06 skin metastasis nodules. Electon beam radiation completed. Immunotherpahy suggested.
#20068 03-29-2006 08:05 AM
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Kankani
Hello ..sorry about your Dad.
My husband had a stage IV tongue cancer, he had radiation and Chemo but no surgery.
My husband did not have the IMRT, I am now glad they did not, although it does appear that it saves more of the salivary glands. As his cancer was more advanced the field that was radiated was larger.
I find it unusual that no Chemo is planned for your dad, have they explained why this is?

Radiation will make your Dad very weak so make sure he tries to eat as much as possible, does he have a PEG and PORT?

Is he going to get amifostine before radiation treatments? This will help protect his salivary glands. It can make him very sick but he can get anti-nausea meds after the injection and before his radiotheraphy starts.
Hydration is very important especially during radiation he must drink LOTS.
I know this is a scary time for you but there is every chance your dad will come through just fine.
Anything else we can help with just ask.

Marica


Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
#20069 03-29-2006 09:00 AM
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Krishna,
Hello, and sorry about your dad.

My mother 70yrs old has SCC on right side of her tongue. Never smoked a day in her life.
She just had surgery also. 3wks ago. Over half of her tongue removed with a skin graft done taken from her upper leg.
She had a CT scan of her neck and was normal so they did not take any lymph nodes out.
The dr. said they were going to do radiation and did not want to put her through that surgery unless he suspected that it had spread to her lymph nodes.
She is a stage 2. She will begin radiation in about 2 weeks.
Sounds like we have similar stories.
They did not mention chemo.
She meets with the RO in about 2 wks. So I am not sure of the full details involved in her radiation at this time.
She has surgery 3 yrs ago for dysplasia(abnormal cells) on her tongue. Now it has come back as SCC.
Back in 1986 and 1988 she had SCC on tongue. She had surgery then and had been fine up until 3 yrs ago.
How old is your father?
Did he have any tests done prior to his surgery.
CT scan or Pet Scan?
My mother is going to have a Pet Scan done before her radiation to look for any microscopic cancer cells not detected on a Cat Scan.
Did your father have this test done yet?

Like I said I am fairly new here. Just ask lots of questions. Keep us posted.
Michelle

#20070 03-29-2006 04:26 PM
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Krishna,
I too am sorry to hear about your father and hope that his treatments go well.

Each person's cancer is, in a sense, unique to that person. While the details of others' experiences may help you to get an understanding of the range of treatment, ultimately you will be depending upon the expertise of your doctor(s) to devise a treatment that best meets your father's needs.

I know very little about what treatment options are available to you in India but I would suggest that you look for a hospital that provides a team of specialists who decide together on the best course of treatment. In the comprehensive cancer hospitals in the States, such a team would typically include at least an earn, nose and throat surgeon, a radiation oncologist and a medical oncologist. Look for a hospital with such a team-based approach as this will likely result in the best treatment plan.

Second, I would suggest that you get a second opinion from a second hospital to make sure that the recommendations from the first are appropriate.

If your father is going to have radiation, be mindful that the radiation should start within 6 weeks of the surgery in order to be of maximum effectiveness. It is also a good move to see a dentist who is familiar with radiation treatment for oral cancer before the radiation begins. This will enable your father to keep as many teeth as possible and to avoid complications to the teeth from the radiation.

A number of studies have indicated that combining chemotherapy with radiation is more effective than radiation by itself. You should check the news section of the Oral Cancer Foundation web site for details of this. See, for example,
http://www.oralcancerfoundation.org/news/story.asp?newsId=1184
You may want to ask your father's doctors about this.

A number of people on this forum had a feeding tube installed before they started their radiation treatments. Because radiation can be so difficult and adversely affect swallowing, a PEG or feeding tube can alleviate the difficulty of keeping your father nourished and hydrated.

Others on the board may have additional suggestions that I've overlooked. Hope this is of some help. Best wishes, Sheldon


Dx 1/29/04, SCC, T2N0M0
Tx 2/12/04 Surgery, 4/15/04 66 Gy. radiation (36 sessions)
Dx 3/15/2016, SCC, pT1NX
Tx 3/29/16 Surgery
#20071 03-30-2006 07:33 AM
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krishna Offline OP
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Hello Marica, Michelle, Sheldon

I am including replys together for better communcation, if I had missed anything in individual replies.

Hello Marica,

Thanks a lot for your reply. I am sorry to hear about your husband. I hope he is doing fine now. When was he diagonsed for SCC and when did he get the treatment?

I dont know what is PEG or PORT? Please explain. Yes, I will make sure that he gets proper diet when he is treated with radaition. Will he be able to eat or drink by mouth? Or they will have a feeding tube as they had when he had surgery?

I will ask Dr about amifostine also. Please let me know if there is any other precaution I need to take.

Thank you. Krishna
--------------------

Hi Michelle,

Sorry to hear about your mother, hope she will do well.


My father is 51 yrs old. Unlike your mother, this is the first time my father was diagonsed for SCC. He had CT scan and Biopsy including general tests like Blood tests, x-ray, Urine tests, ECG, etc. CT scan test suggested some evidence of malignancy in lymph node and biopsy report said Grade I scc. All other reports were normal. Lungs were clear from x-ray report.

Now, we have a common thing that Chemo is not recommended by doctors. People in this group are saying that chemo is usually recommended wityh radaition. But I think chemotheraphy is recommended for stage IV persons. As my father had only one lymph node positive and the tumor was well differentiated, Surgery with radiation was only recommended. But still I will seek second opinion.

My father did not have PET scan? What is this test? Do u think he should have this done before radiation? Please let me know the details about radiation type when u know it.

Please keep posting and be in touch..

Thanks for your response.

Krishna
----------------

Hi Sheldon,

I am consulting a doctor in my town in India who has an expereince in surgical oncology for last 20 years and arguably he is the best. But as you suggested, there is no team of doctors. I was totally relying on this expereicne and recommendations. Without taking second opinion or waiting for more time, we had surgery done based on his recommednations and the histopathology report proved that it was necesaary. Also, as the report came out to be positive for one lymph node, I think he is recommending radation for my father. A radiation oncologist will be consulted this week. I agrre that I must take second opinion and I will tell my father to do it.

chemotheraphy was not recommended. I heard that chemo theraphy is the worst of all 3 treatments. Is it true? I read the article given by you and will consult a doctor to find out more about chemo whether it is required for not?

Thanks for your response.

Krishna


Tongue Cancer T2N1M0 - Surgery done 03/03/06. 5600 units Radiation completed 05/19/06.Recur 10/06 skin metastasis nodules. Electon beam radiation completed. Immunotherpahy suggested.
#20072 03-30-2006 08:55 AM
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Hi Krishna,

Sorry to hear about your Dad. How is he doing after the surgery.

I have to agree with lot of people here regarding chemo with radiation is the best bet right now to avoid all future complications from this stupid disease. I will certainly get second openion from another care facility.

I am from Hyderabad,AP and they do have a good facility there. Hope I can help you further, give me a call. My number is in your private messages inbox.

thanks
Praveen

#20073 03-30-2006 02:49 PM
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Krishna,
I don't know if chemotherapy is worse than radiation since I only had radiotherapy, but I think from reading this list for several years, that radiation is the most trying treatment because of the damage it inflicts on the inside of the oral cavity. Neither is much fun, but both doable and survivable.

A PEG is a gastric feeding tube that is placed into the stomach via the mouth and then extended through the stomach wall and hangs outside the abdominal wall. It is used to provide nourishment when swallowing is too painful. Liquid nourishment and fluids can either be injected into the stomach via the tube or 'dripped' in at a slower pace by suspending the bag of fluid above the patient.

Many people have managed to get through their radiation treatments without one. I tried to do that but needed the tube around week 4 and continued using it for several months after treatment had ended. It is a matter of choice, I suspect, although some hospitals strongly recommend getting the tube installed before treatment begins.

The research results indicating that chemotherapy when combined with radiation is more effective than radiation only, are pretty new. You may want to ask the radiation oncologist about this and you may want to consult with a medical oncologist as well. Someone who typically oversees the chemotherapy part of treatment.

Hope this is of some help. - Sheldon


Dx 1/29/04, SCC, T2N0M0
Tx 2/12/04 Surgery, 4/15/04 66 Gy. radiation (36 sessions)
Dx 3/15/2016, SCC, pT1NX
Tx 3/29/16 Surgery
#20074 03-31-2006 06:18 AM
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I am new to this site. I have a sore on the side of my tongue. It comes and goes and is very irritating. So thats it! My mom had very extensive oral cancer. She had the lining of her cheek plus all lymph nodes and part of toungue removed. Its very difficult to go through, a one day at a time kinda thing. She survived over 7 yrs. very unusual without a reoccurance. Lung cancer during the 8th yr took her.


Marief
#20075 03-31-2006 07:01 AM
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krishna Offline OP
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Hello everybody,

I appreciate your time and response. After reading a lot about cancer diagnosis, I see that usually to see whether lymph nodes are effected or not, ppl go for ultrasonography, CT, CAT, PET.

My Fatherr had only ultrasonography done as recommended by doctor. I have two questions on this now.

1) The report says
------
" Evidence of three upper cervical nodes, Maximum 16 x 7 mm, two lt submadibular nodes 11 x 7 mm each. Two rt mandibular nodes also noted of 14 x 6 mm and 10 x 6 mm.

carotid vessles are normal on both sides

parotid and submandibular salivary glands are normal


Conclusion: U S findings are suggestive of small Lt submandibular and Lt upper cervical nodes."
----------

I am not sure what this exactly means but what I can read from this is that there were two lt submandibular nodes, and 2 rt mandibular nodes.
But why did the conclusion say only about left?

Also, my father was operated to remove 3 lymph nodes from same side as tumor (left side). Submental (3) and Jugualr nodes (1) were removed.
Does this suggest that only left side nodes were effected? How did Dr. decide to remove 3 nodes ?

If anybody can explain this, it will of great help.

Question 2) IS ultrasonography by itself enough diagonosis. Do I need to go for CT or CAT or PET?

Thanks everyone,

Krishna


Tongue Cancer T2N1M0 - Surgery done 03/03/06. 5600 units Radiation completed 05/19/06.Recur 10/06 skin metastasis nodules. Electon beam radiation completed. Immunotherpahy suggested.
#20076 04-02-2006 03:07 PM
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krishna Offline OP
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People,

Kindly respond, I am eagerly waiting for your replies.

Regards,

Krishna


Tongue Cancer T2N1M0 - Surgery done 03/03/06. 5600 units Radiation completed 05/19/06.Recur 10/06 skin metastasis nodules. Electon beam radiation completed. Immunotherpahy suggested.
#20077 04-03-2006 02:33 AM
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Hi Krishna, I cannot explain much to you only to tell you that I had cancer on my tongue and two lymph nodes also positive for cancer. I had surgery to remove 1/2 of my tongue and radiation for 7 weeks due to the two positive nodes. This was 4 years ago come May 10th. I had a PET scan done prior to my surgery, my oral surgeon wanted to know how much the c had spread. They did the neck dissection and out of I believe 28 nodes 2 were positive. Sorry I cannot help you more, you are in my thoughts....Carol


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
#20078 04-03-2006 05:54 AM
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krishna Offline OP
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Thanks, carol.

Sorry to hear about your SCC. I hope you are doing well. When was your surgery done? Did you have any recurrence after that? Did you take any radiation?

My father is going to begin his radiation next week. Doctor has recommended him for conventional radiaotheraphy instead of IMRT. I have read that IMRT is better, than why did not he recommend it?

Also, my father is having blood in his mouth when he gets up in the morning. That is the only time he spits some blood (very little). IS this due to the neck dissection not beingh elad completely? Or is this any symptom? Also, he has a tooth ache after suregery? Has anyone got similar symptoms after surgery.

Thanks,

Krishna


Tongue Cancer T2N1M0 - Surgery done 03/03/06. 5600 units Radiation completed 05/19/06.Recur 10/06 skin metastasis nodules. Electon beam radiation completed. Immunotherpahy suggested.
#20079 04-03-2006 06:59 AM
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Hi Krishna, I am doing well, thanks so much for asking. I had 7 weeks of radiation. I am coming up on my 4 year anniversary so I am very happy about that!!! I hope things go well for your Dad. Take Care, Carol


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
#20080 04-05-2006 04:49 PM
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Krishna,

I'm afraid I don't know enough to answer your questions on the lymph nodes and didn't have radiation, so have no information on IMRT.

However, I'm sure Brian and others do know. You might re-post your questions on the "Currently in Treatment" board so folks there will see it. You could also try sending Brian (Hill) a private message. He is always very helpful and I'm sure could point you towards the information you need.

One thing I can comment on is the spitting up of blood. How long has it been since his surgery? I wouldn't think that would be caused by the neck dissection, but could be caused by the tongue not healing completely? I wouldn't think it should still be oozing now... About the tooth, I'm guessing the toothache might be related to trauma during the surgery. I know my Aunt had a tooth chipped badly during surgery. Perhaps your Dad's tooth was bumped or jarred in some way. I know my teeth hurt like heck, but it was because of the jaw split. I was lucky not to lose any teeth.

Best of luck to your father as he undergoes radiation and recovery.

Jennifer


Jennifer
Stage II (T2N0M0) SCC diag 4/21/05; partial glossectomy & selective neck dissection (good margins and lymyph nodes negative), jaw split, 1/3 of tongue removed, free flap from left forearm - 5/23/05; 42 years old at diagnosis
#20081 04-06-2006 01:41 PM
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Krishna,

I am sorry to hear of your father's challenges. Have you consulted with your father's doctor as to exactly what the pathology report means. He would best be able to address that or send you to the actual pathologist that prepared the report. It sounds like they found suspicious nodes and removed them.

It is common to request a Ct with contrast before the surgery. In my case, I was allergic to the contrast dye so I received an MRI with contrast. The PET/Ct was done several weeks after treatment to allow for more accuracy in interpreting the results as healing will also be indicated on the films.

I am surprised that your father is not receiving chemo with radiation as that would seem to make more sense to, although I am not a doctor and not qualified to second-guess a medical professional.

Scour this website and you can have most of your questions you are posing answered.

Best wishes for your father and he is fortunate to have you by his side trying to find answers and help him make the best possible informed decisions.

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
#20082 04-10-2006 02:05 PM
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krishna Offline OP
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Thanks Jennifer, Ed

You ppl are right. I must start posting now in " Currently under Treatment section" now. I greatly appreciate your response.

Thanks,

Krishna


Tongue Cancer T2N1M0 - Surgery done 03/03/06. 5600 units Radiation completed 05/19/06.Recur 10/06 skin metastasis nodules. Electon beam radiation completed. Immunotherpahy suggested.
#20083 05-14-2006 08:46 AM
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Some types of cancer have no accepted chemotherapy. My husband had adenocarcinoma
of the base of tongue and the team of doctors
did not recommend surgery due to its morbidity.
Radiation was the only recommendation. We have
since been on two different chemos that were in
Phase I trials. Lymphoma developed during the first and we had to drop out. We will do CT
scan on 5-15-06 to see if the second trial drug
has had any effect on the tumor.
BEST WISHES to you and your father.


Ray Fleet
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