Hi All, My first post... Hopefully we can give each other advise as I have been through the surgery and treatment and now recovering! I was diagnosed with cancer on the right side of my tongue (squamous cell carcinoma) with the possibility of it spreading to my jaw and lymph node. I had surgery in March 2018 removing half of my tongue and flap reconstruction (from my left thigh) a large number of dental extractions, neck dissection to remove lymph node, lip and jaw split to access the tongue etc. They also discovered that the cancer had spread to my Thyroid and these were removed recently (Dec 2018) Like many, I completed the 33 days od Radiation & Chemo treatment - June 2018. This is when the challenges really start! Talking, eating and just trying to be normal again. I lost my job and have no personal insurance so became very depressed and now experiencing financial hardship - but we battle on!!
I was given the all clear last week - they believe they have cut out all the cancer and it has not spread any further! YEY!!
One of the hardest things at the moment, and always has been is the saliva & Mucus! Although better, it still drives me nuts! I have tried just about everything and my doctors always just say - it takes time! Recently I have "Glycopyrrolate" which has helped a bit but does increase the dry mouth. Has anyone found anything that helps? I still have the stringy Mucus down the back of my throat and produce too much saliva that I cant talk - then of course the dry mouth sets in!
I am also considering trying "Hyperbaric Oxygen Treatment" - mainly for my jaw and nerve damage in my mouth, has anyone tried this?
Welcome to OCF, Genau! Im very sorry to read about your recent diagnosis of oral cancer (OC). Your post took me back to when I was first diagnosed and was worried about missing days off from my job and my teenaged children. I knew absolutely nothing about OC! I was trying to control something that I had no control over. Boy of boy, did I have a ton to learn!
One thing you will pick up from our site is that every patient is different and will respond to things in their own unique way. This goes for medical procedures, medications, recoveries, and anything/everything else relating to someones medical condition. You are correct in estimating patients have a hard time after about the first 2-3 weeks and then recovery which can be a tediously slow phase with ups and downs plus some setbacks thrown in as well. There are the lucky few who sail right thru rads with barely any noticeable problems. Its about 10% of patients who will get thru treatments without any major issues. The lucky 10% arent any special population segment, being active and in shape doesnt change who gets thru things easier than others. Over my years of being on the forum and speaking to so many patients from all over the world, Ive noticed the better patients do with their intake, the easier treatments will be for them. Taking in at the very least 2500 calories and 48-64 oz of water every single day may sound like alot but it really isnt when considering how your body is working OT fighting the cancer and trying to rebuild itself which burns up calories at a much faster pace.
Even if you do great with your intake, unfortunately you still may be one of the patients who struggle almost from the very first day of rads. Unfortunately, this is something nobody can predict. It all goes back to the "everybodys different" slogan. Even if you take several people who are the same age, sex, live in the same general area, have the same type of job, marital status, tumor location, size/stage of the tumor, are in general overall good health, etc... these patients are still individuals who will respond to things in their own unique manner. What works for one may not work for another patient even if on paper they appear to have the exact same characteristics.
From what I know of Hope Lodge, they have locations near all the top comprehensive cancer centers (CCC). Im sorry but I do not know Hope Lodges exact locations but they can easily be found online. When staying there, patients must have a caregiver there too.
Please use great care if you are planning on going against doctors recommendations with your treatment plan. I suggest getting a second or even third opinion before considering any changes. Treatment plans are created from detailed flow charts from years and years of previous OC patients. The National Comprehensive Cancer Network (NCCN) has this info available on their website. Oncology doctors have many years of education, clinical patient experience and residency behind them plus they go by tried and true treatment methods to hopefully eliminate the cancer completely the first time so patients wont need to get treated again. I know all too well how OC doesnt fit into anyones current lifestyle. Unfortunately no matter what the patient wants, its still cancer and is a potentially deadly disease that must be eliminated.
Welcome to OCF, Tammy! Im sorry you have been recently diagnosed with oral cancer (OC). In some patients its just not possible to determine what caused their OC. There are just soooo many variables even if it would be from a genetic predisposition. Actually quite a few here are part of the "no known cause" segment that is 5-7% of those diagnosed. Regardless of what caused your SCC, it needs to be eliminated.
If you havent already gone for a second opinion you might want to get started making those arrangements. If you are able to go to a comprehensive cancer center (CCC) even better. The CCCs are the best of the best in the US. Patients treated at CCCs have better outcomes. CCCs attract the brightest and best physicians who use a team based approach so all the specialists are on the same page discussing each patients case at tumor board meetings. Patients and caregivers are able to attend as well.
Theres a million and one little things to do prior to any treatment weather its surgery alone or surgery followed by rads with/without chemo. I suggest spending time reading here and also on the main OCF site about your illness. Educating yourself about OC will help to make you a better advocate for yourself. For now anyone you talk to about your illness that offers their assistance take their name and full contact info down. Let the family and friends who offer their help know when the time comes you will let them know what they can do to help.
For now you may want to start eating all your favorite foods, desserts too. No matter what treatment plan you will have, your ability to eat is likely to be temporarily compromised. You definitely do not want to go into this with any food cravings so eat your favorites now before any treatments.