Hi, my name is Liz. I need some guidance because I am numb and terrified. I just got the call from the doctor. Someone very dear to me (A person to whom I owe my own life) asked me to be his point person with the doctor and I just got the news that this important person ( my friend and teacher of 35 years - I will call him “S”) has left oropharangeal carcinoma (squamous cell, Stage Three). The doctor asked if S ever smoked, chewed tobacco or drank. The answer is no. Never. I know his father was a heavy smoker but the doctor didn’t think that would do it. The diagnosis was made from a CT scan that included images with and without contrast. The doctor said that the cancer originated at the base of the tongue and measured 5.5 cm x 3.4 cm x 3.7 cm. He was going to call “S” with the news and I asked him to wait until we had some supports in place. “S” lives with his wife but he told me that they were estranged. His children and brother live out of state. “S” is 77 years old and retired. He basically lives in his basement office and rarely leaves the house. I visit him on Sundays. He did not want to go to the doctor, but my daughter, husband and I begged him to go. We live several miles away in NYC but we will do all we can. I also want to respect boundaries. “S” is dear to me, but he will need to tell his wife and family and I hope they rally around him. I know I need support so that I can be calm, helpful and grounded. I am used to “S” being the helper, the guide and source of strength, but now the tables have turned. I am going to call the social services referral that the primary care doctor offered. What kinds of things need to be done now? We need to find a specialist, and treatment. I am afraid that “S” is already depressed and that he will shut down and shut us all out. Would anyone have suggestions on how to proceed?

Welcome to OCF! Im very sorry to hear about your friend and mentor being recently diagnosed with oral cancer (OC). You have found the very best resource to help you both with info and support. I suggest start reading both here and on the main OCF site where theres page after page of important info OC patients and their caregivers should know. Stick with us and you will learn tons of tips on how to best help your friend. We've been thru this ourselves and know what to avoid and what it takes to get thru this as easy as possible.

Finding the best medical team, treatment center and getting a treatment plan would be the first step. If at all possible a comprehensive cancer center (CCC) would be the best place for treatments which likely will include surgery, radiation and chemo. Its been scientifically proven patients fare best at CCCs. Naming a few off the top of my head would include Sloan Kettering, MD Anderson, Johns Hopkins and Moffitt are some of the he top CCCs in the US. The CCCs will have the best and brightest doctors who are highly skilled with the latest techniques. A second opinion is also a good idea especially with later stages of OC III and IV. Once the medical team is selected if its a CCC, all the specialists get together at whats called a tumor board meeting to discuss each individual case and set up the treatment plan. Patients and caregivers are able to attend this too.

Receiving a cancer diagnosis is not easy to handle mentally for anyone! You mentioned being concerned about depression, if depression plays a part in this that should be addressed sooner rather than later. Often patients need some help thru counseling and meds to get thru the shock of being forced to face their own morality. Even many caregivers need some temporary help as well. The medicines prescribed for depression or anxiety can take weeks before they start working. If a couple different meds or doses are tried, it can be months before your friend will know if what hes taking is what works for him.

You will be surprised at reactions when people learn of your friends illness. Some people that are the closest to your friend that you think will be his best supporters will head for the hills making themselves scarce until your friend is well into his recovery. Others you or your friend barely know will step up and become strong supporters. One important thing to start doing right from the beginning is when anyone is told about your friends illness and they offer to helpIm including a few links to important things that can help newly diagnosed patients and caregivers. One important thing to start doing right from the beginning is when anyone is told about your friends illness and they offer to help taking down their name and full contact info. Start a list of those who offer assistance telling them when the time comes you will let them know what they can do to help. Theres a million and one little things that can be done to make this as easy as possible.

For right now, encourage your friend to eat and enjoy all his favorite foods, desserts too. No matter which treatment plan your friend goes with, his ability to eat and drink will be affected. For almost all patients diagnosed with OC, their eating ability will temporarily be compromised. Its not easy to eat when food doesnt taste how you think it should. Im sure I will get into this much more in my future posts to you as intake really is a HUGE part of this.

Best wishes with everything!!!

NCI list of CCCs

US News Best Hospitals List

OCF main site --- Diagnosis

OCF main site --- Treatment

Thank you. I am so grateful for your kind words and guidance. I was so worried that no one would reply. Thank you so much for making the time.

Of course you would get replies! We usually are pretty quick with responding, normally in less than 8 hours new posts get replies. Thats what were here for... to help each other. One thing you will quickly notice is how much everyone is bonded. We are all in this together! We have been thru some significant hardships ourselves so we understand how scary it can be, especially with recently diagnosed patients. It takes a group of very special people who fully understand what an OC diagnosis means not only to patients and their caregivers but to the patients entire family.

Welcome Liz61!

I’m sorry to hear about your friends situation. About 80% of base oropharyngeal cancer, mainly tonsil and base of tongue, are HPV related and have excellent treatment response. Finding a cancer doctor, on our case an ENT, is an important step. Being in NYC, like myself, you have access to some of the top head and neck cancer doctors and facilities around! Even still, insurance and other matters can offer the whole country, but I stuck it out here, and met some of the finest doctors and support staff in the industry.

Who did the biopsy to identify the cancer?

A few top places in NYC (manhattan) in no special order are:

Mt Sinai
Beth Israel Mt Sinai
NY Eye and Ear Hospital Mt Sinai
Memorial Sloan Kettering
Columbian Pres
NYU

I hope this helps.