Lessons Learned

Note: Some important points are highlighted in red

Carcinoma of the tongue at a young age is a very deadly disease. Since the disease is very unpredictable, one should be aggressive from the start. It is always beneficial to get multiple opinions to evaluate options. The key is to tie up the opinions of Surgeon and Oncologist, which can be very confusing at times due to different experiences. Both should be consulted right away to speed up the process of diagnosis. It has been observed that in about 30-40% of the patients there is a silent spread by the time diagnosis is confirmed, as the lesion may appear to be very small in the beginning. The silent spread may be sometimes extremely hard to diagnose despite availability of all of the scans and clinical examinations. In case of the younger patients it may wise to assume that cancer may have spread unless proven otherwise. Do not discard a surgeon or oncologist for being aggressive. The aggressive treatment can be painful in begining but may increase the survival chances. Radiation is the most painful aspect of the treatment but probably the most effective regiment and hence one has to be very patient till the entire course of radiation has finished.

Most patients’ attention is paid to the same side; however the opposite side of the neck should be given equal attention and even small irregularities should be taken seriously. Due to unreliability of MRI, CT scans and PET scans in documenting silent spread, bilateral limited neck dissection in order to rule out microscopic spread in the lymph nodes on both sides should be considered.  There are reports that in about 10% of the patients the drainage of lymph nodes finds its way to opposite side. Due to lack of early detection and treatment in these patients the survival chances reduce considerably if the opposite side is not taken into consideration. There are some tests available, which can detect the route of lymph node drainage in the beginning before any treatment has been initiated. Rerouting of lymph node drainage can occur after radiation and surgery, which makes it difficult to diagnose recurrence. If there is anyway of knowing the pattern of lymph node drainage, treatment can be planned accordingly. The CT scan or MRI may be used as guiding tools only if they are positive.  If they are negative, it does not necessarily mean that the spread is not there. Any misjudgment made during the initial treatment, is most likely going to be fatal in the end and whatever one may do later will not make any difference as far as success of survival is concerned.

If bilateral microscopic spread is documented at the beginning, then a full dose of radiation to both sides of the neck will be given, which may increase long-term survival.  If a prophylactic dose is given on the opposite side assuming there is no spread without surgical sampling, this would again seriously reduce success of survival in some patients. If the treating physician has made a decision to give full dose radiation to both sides of the neck, then obviously there is no need to even consider doing surgical neck dissection to rule out microscopic spread of carcinoma.

Role of chemotherapy is very limited.  It is only a palliative treatment.  Chemotherapy in association with radiation increases morbidity of the radiation to a great deal. A careful decision has to be made when radiation and chemotherapy are combined. Radiation dose should not be compromised, as this is the main treatment for this carcinoma.The surgeon has to be extremely meticulous to remove enough rim of tissue outside the lesion of the tongue; otherwise local recurrence is very high.  Surgical follow up is extremely important. You cannot ignore any new lymph nodes that may develop on either side after all the treatment has finished. Decision based on negative MRI or CT scan can be detrimental, as both MRI and CT scan have questionable reliability.  Needle aspiration and CT guided biopsy or open limited biopsy is worth the risk rather than making the wrong assumptions and putting a life at risk.

Once recurrence is documented, all efforts should be made to treat with chemotherapy and possible radiation.

In young patients – one has to understand age-old conventional treatment will not always work.  Squamous cell carcinoma in younger people is far too aggressive in comparison with older people even though they might look similar in microscopic study.  All possible experimental trials need to be explored.  The experimental trial list is published by the National Cancer Institute or simply calling the American Cancer Society.  The National Cancer Institute also publishes a list of all the cancer centers.  Every cancer center has some trial ongoing and patients can be enrolled very easily by discussing this with the research coordinator of the institution.  You do not always need a referral from your treating physician. Treating physician should always consider aggressive management.  There is very little one can do if things get missed in the beginning or if recurrence is undiagnosed. Some experimental protocols need to have enough measurable disease to justify experimental drug which in essence is quite dangerous because once the disease has recurred the chances of survival are pretty slim. Hence every effort should be made to get experimental drug even on compassionate grounds when recurrence has been diagnosed which can be combined with conventional chemotherapy drugs.

Evaluation of various tumor markers in squamous carcinoma of the tongue may need to be considered seriously because of availability of new chemotherapy drugs which attack the surface of the tumor without causing serious side affects, like conventional chemo drugs.  Two markers particularly are to be considered, EGFR – and assessment of HPV-virus.  EGFR-blocker drugs will be used more often in conjunction with radiation with surgery and chemo in the beginning of the disease and also later on with recurrence. Various reference labs can test these tumor markers when pathology slide samples are sent to them (U.S LAB LOMA LINDA, CA).  Please visit the Abigale Alliance for Better Access to Developmental Drugs for more information about drugs like EGFR-blocker.

In the end, destiny is something that we could not change for our son despite having enough medical background.  Aggressive management of these cases may improve survival.  Our son had residual disease on the opposite side all along. He received only prophylactic dose on the opposite side which might have been a major factor in reducing the chances of his survival. Relying on PET scan was a big mistake because it cannot diagnose microscopic spread. When the recurrence occurred on the opposite side in December, The real diagnosis was made as late as April till he had no chance of survival.. Even to get appointment in a pain clinic was a hassle .The pain management was very difficult as no one was able to control his pain till last stage.

Our suggestions and comments may help some patients and caregivers in most unfortunate situation. Please feel free to call us at (209-473-0446) email us at seema1952@aol.com for any question. It will be a tribute to Avi if we are able to help someone.

The thoughts and suggestions above are based on our experience and the pattern of disease can vary from person to person. Our experience does not constitute by any mean standard of treatment. Your treating physician has extensive experience and his treatment plan should be followed keeping in consideration some of our experiences. 

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