Please allow me to introduce myself. My name is Ravi and I live in San Francisco bay area. This is about my sister who lives in India.


My sister was diagnosed with tongue cancer around 7 months back with a lump forming on the base of her tongue. Initially she had radiotherapy (RT) and chemo. The lump looked subsided and we thought it was over. Then again it resurfaced around 2 months back and she was kept on lot of chemo. Yet it did not change much. The doctor says now surgery is the only valid option. She is due for PET scan tomorrow. At this time she is suffering with lot of pain. Hope the surgery helps. Not sure how effective the surgery would be after RT/Chemo.

There are many great stories on this site about people who defied cancer and survived. And then there were some who did not survive but not without waging a heroic battle against this dreaded disease and the story of each person gives lot of inspiration about the human spirit and knowledge about the disease. Read the postings of Dr.Vinod Joshi and those of many knowledgeable members. You all made this web site easily the best in the world for mouth cancer forums. Not mentioning the names of the individual contributors because it is not easily possible to list all those names and would be unfair to forget anybody's name. I am seeking answers for the following questions and to other questions that I do not know how to ask and yet very relevant to know at this time.

What is the effectiveness of surgery after RT and Chemo?
What are the questions we should ask the surgeon?
Are there any precautions that we should take?

Thanks to all of you for your time and advice.

Best regards, Ravi

WELCOME Ravi... I am so glad that you have found us and are seeking answers here. Like your sister, my husband also had base of tongue cancer (stage 4) and is now in remission. (He did not require tongue surgery, just excision of a cancered mass of lymph nodes in the right neck, where his tongue cancer had spread.) I am sure it was devastating beyond words when your sister's cancer returned so quickly. Recurrence is a very real fear that I (and many others on this site) live with every day, but can only imagine the horror of hearing the news a second time. There are members amongst us who have had second, third and even fourth recurrences. You may have read some of their incredible stories. I am so sorry that your sister is again battling tongue cancer and now faces the possibility of surgery.

To attempt to answer your questions, I must first ask if the surgery her doctor has suggested is a glossectomy. I assume so, but wanted to ask for clarification. If a glossectomy, has she been told if it will be partial or total?

You inquire about the effectiveness of surgery after RT and chemo... If you are asking if surgery will likely rid your sister of the cancer (or perhaps to result in remission), I would say that only her oncology team would be able to address such a question. Many factors come into play... from age to general physical health, to the extent of the cancer and whether or not it is determined to be localized, and so on and so forth. To make a good decision about the surgery, your sister should know every possible thing the doctors can tell her about the operation itself including all risks. She should be told what the physician's best estimates are that the surgery will render her cancer-free and, if remission is achieved, what might be the likelihood of another recurrence fairly soon down the road. I would ask what oral functions might be compromised (and to what extent) or even eliminated as a result of the surgery. She should know about the degree of disfigurement, if that is a factor (depending upon the type of surgery that has been suggested). Pain should be discussed, immediately post surgery and weeks/months afterwards. She should ask about any methods of rehabilitation (if applicable) post surgery to achieve the best quality of life results.

In addition to finding out what can and cannot be expected and achieved with the surgery, your sister might also explore with the doctor what might occur if she decides to reject surgery. While this subject may not be pleasant, she should be informed about the pros and cons of both (having the surgery, or refusing it) to make the best decision for herself in this extremely difficult situation.

I was told that my husband can never have radiation to the same area again in his lifetime... So, because chemo by itself is known to be rather ineffective against base of tongue tumors, I have always assumed that a partial or total glossectomy would be his only chance for survival in the case of recurrence at the original site. I do not know that for certain but, from all I've been told and read, it seems to be the case.

I am glad your sister will be having the PET scan. I assume they are looking for distant metastasis. I just pray with all my heart that the tongue recurrence is all the bad news she will be faced with!! (I will keep the faith on her behalf.) You also mentioned she is in a lot of pain. Is it pain at the tumor site, or elsewhere? Do you think there is anything further that might be done (medication, or otherwise) to make her more comfortable? I hope she is letting her medical providers know that the pain is not being controlled effectively.

Ravi, I KNOW that you are sick with worry for your sister, particularly since she is so far away. I have three sisters myself and cannot imagine any of them going through such an awful thing, especially the second time. You are doing your sister a great service by seeking information and answers on her behalf. The support of family and friends is a godsend. I hope she will write out all of her questions ahead of time and have the list ready when she has the consultation with her doctors about surgery.

Please know my thoughts and prayers are with your sister and YOU too, Ravi. I will ask the Lord to help you all make this enormously difficult decision with clarity of mind, strength, and much courage. I will specifically ask for complete healing and riddance of this disease from your sister's body. If it takes the operation to do this, I pray that the hand of God will guide the surgeon's and His tangible presence will be felt by your sister and all those who love her.

Please let your sister know that people are praying for her from all over. The Web is a powerful tool. Not just MCF members read these postings, scores of other people visit this website daily and undoubtedly send up their own prayers as well for our concerns. The Lord will hear your name more than once tonight, Ravi... and He knows all about your dear sister. Have peace in your soul and know that even total strangers CARE about you and are united in their high hopes for this precious sister in India and her restored health.

From my heart,

Melanie

Hi Ravi,

Sorry i cant answer answer any of your questions but felt had to say hi and easily agree with you about the support you recieve on this site. It goes to show there are wonderful people in the world and i am sure any of your questions will be answered with the fullest possible information that the peole here can give.
Keep your chin up and dont let the hope die.

Melanie:

Many thanks for your detailed response with answers and suggestions. It was very nice of you to give a detailed reply with lot of information. Sorry that your husband had to go through this and I am glad that it is in remission now. It must have taken enoromous courage for both of you to be able to come to this stage battling the dreaded disease. The PET scan report came and it shows around 2.8 cms as the diameter of the tumor. The consolation is it did not spread beyond the tongue.

The oncologist also suggested surgery and also mentioned not to go for more RT of any kind. Today they did blood test and cardiac test. At this time they found she has infection and gave medicines for infection. If the infection comes down, then they will go for surgery next week. They will remove around half of the tongue and something from submandible jaws. I did not understand that very well and post about that next time. They will also do plastic surgery.

Tracy:

Thanks for your reponse and the inspiration. It cheers me up.

Will keep informed in the next few days. Thanks again Melanie and Tracy.
Best regards, Ravi