Hello, I am Sabrena. We noticed that my husband had a spot on his tongue this past May 2019 that looked like an ulcer with leukoplakia. We thought maybe he had bitten his tongue in his sleep. In August he was seen by an oral surgeon who wanted to biopsy (take the whole lesion out). The pathology report came back as SSC of the tongue, stage I / invasive (beyond the squamous outer covering). The lesion was cut out with cancer free borders. We were sent to Moffitt for further treatment. The further testing was not impressive, no signs of disease anywhere else in the oral cavity or in the neck area by endoscopy and CT scan. The doctor's suggested SND (selective neck disection) and to cut out more of his tongue tissue, despite the previous clear margins. We think that a 2nd opinion regarding the treatment is in order. Don't most people seek 2nd opinions? What are the thoughts on special diets, Chinese medicine, herbal medicine and homeopathic medicine before cancer treatment / surgery? It would be good to have a boosted immune system, if possible. Health care varies so much depending on where one lives, and I thought that sharing information would be great.

Hi Sabrena,
I am also new to the forum, but such good news that the cancer was T1 and that they were able to cut it out with clear margins! I would definitely seek a second opinion! I did not have one because I really trusted my ENT who basically talked me OUT of surgery and just have the radiation as she felt I'd end up with radiation anyway due to neck dissection not being safe enough margins to prevent it). This was also the recommendation of my tumor board (so in a way, I had multiple opinions.) And time was of the essence. I did not want to wait too long--I wanted this thing OVER with before it spread or grew! But some of the side effects as doctors described them to me ended up being more of a loss than the docs presented. (Example dry mouth.) Lucky for me, I have half my salivary glands still. Sometimes we don't have a choice, but I suppose second opinions help in this area too.
One thing I learned along the way: my second opinion would have been in Boston, whereas my team was local in Portland. As such, my insurance would not have covered it as "in network" and thus would have resulted in much higher charges. (Just throwing that out as I would never have considered that factor at such an early stage of the health insurance maze.) So make sure you talk with your health insurance company first! My spouse's employer also offered Consumer Ally as an employee benefit. They are basically an independent service that helps get you specific info on your doctor's expertise, if they have had any malpractice issues, and they offered some other really good info too. Not sure if you have something like that but worth checking out.
As for the diet, there are many cancer cookbooks out there. One in particular, The Essential Cancer Treatment Nutrition Guide & Cookbook by Lamantia & Bernstein, focused on healthy recipes (including for cancer prevention moving forward) where a lot of others seemed more focused on pleasing the palate (full of sweets and fats, etc.) It was organized by side effects, too, and of all of the cancer cookbooks we consulted, it seemed to offer the recipes I liked best. (Salmon and haddock were among my favorite main course choices from ease of eating and least offensive after my taste buds went wonky from radiation. ) I don't know about Chinese medicines, etc. but I bet someone else on this forum does!
Good luck to you!!

Thank you so much Mortal for your kind and helpful information! You are located near the best health care facilities in the world (my opinion). Yes talking with the insurance company re: 2nd opinions sounds great. I have received 3 bills thus far, and it is already going to be a road ahead of frustration, for I am seeing charges that look quite silly. Well, I certainly hope that you are feeling better and having good results from your radiation. My husbands' oral surgeon thought that they would have opted for radiation treatments at most.

Welcome to OCF, Sabrena! Im sorry to hear about your husbands oral cancer diagnosis! We will help you both with info and support to make everything as easy as possible.

Many cancer patients seek second and third opinions. Its a very good idea to hear what several different physicians and facilities would do to treat your husband. If possible try to get at least one opinion from a Comprehensive Cancer Center (CCC) where all the specialists meet together at a tumor board meeting to discuss each individual case (patients and caregivers are encouraged to attend and ask questions to the group of specialists). A team based approach has the best outcome for survival. There are many top hospitals if location is something that must be considered when seeking treatment. Some CCCs will even do another opinion online (no traveling required) to review your husbands medical history, tests and diagnosis report. If cost is a factor in traveling theres airlines and special housing facilities that give free or at a nominal cost ($5-$20) to cancer patients ands caregivers. Many OC patients will travel across thew country to get treated at certain top CCCs. Cancer is one of the most serious diagnosis someone can have. There may be only one chance to eliminate the cancer. Its very important to find and use a team of medical professionals who are very knowledgeable and experienced with treating OC patients, not a small local facility where they might get one or 2 OC patients a month or year instead of the CCCs who treat hundreds.

As far as boosting someones immune system before starting any treatment, thats one to ask whatever team you select to use for your husbands treatments. Theres a million and one bogus claims on products to do that online. USE CAUTION!!! If something sounds too good to be true it usually is. Theres different foods, medications, vitamins, etc that can have a major and negative impact on treatments, medications, and/or procedures which could make them less effective or otherwise interfere in a negative way. As a group of people who are not medical professionals with years of medical school, clinical patient experience, the patients full medical history (not that we would completely understand what we were even reading) and the patient in front of us... we're other cancer patients/survivors and caregivers so we arent qualified to give our opinions on some things. Basically its the same as if asking someone who you randomly pass when walking down the street. As with everything always check with your husband medical team before adding even a multivitamin to his diet so you avoid any unusual reaction or negate the desired result of something.

OCF is the biggest and best online resource for up to date and correct medical info! Theres far too many bogus sites full of secret cancer cures and miracle medicines dedicated to the sole purpose of taking advantage and money from unsuspecting cancer patients and caregivers. OCF has always operated with a firm belief in medical info derived from science based facts. There are far too many medical websites that promote unsubstantiated treatments and bogus cancer cures to line their pockets without regard for the safety of its members. This is a HUGE business!!! Too often newly diagnosed cancer patients and their caregivers are in a state of shock when given a cancer diagnosis. They're in a panic and are desperate to find something or some other way besides the only scientifically proven options of surgery, radiation with/without chemo in their quest to eliminate the cancer as quickly as possible. I want to be certain you fully understand OCF has strict guidelines about alternate medications, treatments and/or procedures. This is something we take very seriously!!! Its spelled out in the rules which everyone agrees to abide by when joining our group, in fact this is so important everyone agrees twice! Below is an excerpt of Rule #2 ...

Please note that there are tons of bogus cancer cure claims, herbal remedies without documented proof of efficacy, and treatment centers in foreign countries trying to sell hope, that have no proven clinical benefit. If you are a proponent of these ideas and places -DO NOT BRING THEM UP ON THIS MESSAGE BOARD. OCF is dedicated to the discussion of proven treatment modalities, and adjunctive array(not alternative) therapies to treat side effects. FAILURE TO ABIDE BY THIS RULE WILL GET YOUR URL BANNED FROM THE BOARD.

This is not an unrestricted open forum or democracy. We regulate what is posted here, and unsubstantiated treatments with no peer-reviewed published support in science are not welcome. Please choose a different message board if you are interested in discussing these kinds of things. A good rule of thumb is that if it has been put on the quack watch site array(www.quackwatch.com) it should not be discussed here.

If you have questions about the rules or anything else about the forum you can send me a private message (PM) and Id be happy to assist you as much as possible. To PM, simply click on my name and then click the "send private message" toggle. Theres all kinds of other things newly diagnosed patients should be doing. Read thru other posts and on the main OCF site to learn more about OC, treatments, medications, procedures, etc. Remember, an informed patient or caregiver makes for a strong advocate!!! Ive written hundreds of posts to new members about eating all their favorite foods and making a list of people who offer their assistance. Im sure you will see this several times on other posts.

Best wishes to you both!!!


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His experience is very similar to my first attack. If his cancer is not from HPV, alcohol consumption is to be avoided to avoid a second round. If you want more details, send me a private message.

Thank you so much ChristineB for your warm welcome and warning. Medicine is our best guess at the time, for things are always changing. The way that health care is today is not the same as 10 to 20 years ago. People have to self advocate. Frankly, I am very reluctant to have 100% trust in any physician that I don't really know. As you already said, it is a big, big business too! The cost for most people is astronomical. My questions were misunderstood. It is obvious that people, all of us are unique; thus, it is not a one size fits all. There were some interventions that were adopted within the last 20 years that would have otherwise been thought of as hocus pocus such as guided imagery, massage, pet and music therapy, nutrition and the power of positive thinking. All I am saying is that open mindedness does not hurt anyone. Thank you for not allowing money grubbing unethical advertising on this forum. but aren't I allowed to ask questions?

Hello TLC356,

Thank you for your reply. I do want to talk to you. Not to sound too ignorant, but I have not figured out how to talk privately.

Hello, this is a test to see if this message is sent privately.

It took a few minutes, but I found it!

While I’m not a medical professional, I can tell you that after my husband was diagnosed and was about to go into radiation treatment, his RO warned us against using any Chinese medicine because it might have an effect on the free radicals in the body. I guess that goes in some ways to answering one of your questions.

Thank you gmCraft. I appreciate your information! We are going to try to decrease stress, get sleep, take D3 (which most of us Floridians are deficient in), eat good food and whatever else we need to do to increase his immune system.