Welcome to OCF! Im very sorry to read about your current situation!!! At OCF, we can help you with info and support as much as we can. Im a firm believer of being an educated patient to be as prepared as possible, to have open and informative talks with your medical team, and be your own biggest supporter by advocating for yourself. Theres a few things in your post that do not sound like they're correct so please understand my reply is going to be a little different than my usual one. Its pretty long and detailed so anyone reading this thread can better understand several important things about oral cancer (OC), treatments, and clarify any misconceptions that could confuse people who arent familiar with OC.
When reading online medical types of things its a very good idea to consider where source of the advice you are reading. Frequently the websites are not a reliable resource. You need
correct and up to date medical info so you can learn more about your condition, treatments, etc... Far too often, message type public forums tend to be left unmonitored where anything and everything goes without anyone overseeing or correcting wrong, outdated info. If the medical type site is not Health on the Net (HON) certified, then what you're reading is most likely not completely correct. Too many unscrupulous people prey on unsuspecting patients/survivors and caregivers who are dealing with some of the most desperate times of their lives. AT OCF, we have a very strict set of rules all members are held to regardless of their current situation. Every member we have agrees to abide by our rules when they sign up to join our online OC related family. In fact, we're so adamant about having correct info posted every member agrees to adhere to our rules twice to ensure they have had the opportunity to review and understand what and why we have the rules. By the constant monitoring and our rules policy, OCF is a proud member of the very few medical related websites that have earned the distinction of carrying the HON badge. Members can expect our no advertising policy, monitoring, etc will always protect our members, their identities, and their medical info. Even after years of a steady stream of requests offering to buy our members email addresses and info, OCF refuses to sell our members out to make a buck like almost all other info type websites do.
You wrote you arent expecting medical advice from our members. I want to explain this in greater detail to ensure anyone from the tens of thousands hits where people from all over the world reading our posts and will understand everything along with OCFs position. As a group of oral cancer (OC) patients/survivors and caregivers without medical degrees or backgrounds we arent properly qualified to understand enough about all the minor specifics to weigh in. What one person would do is NOT an equal comparison of what is best in your situation. You will see this many times here "everybody's different". Just remember... everybodys different!!! Every person you meet who has been thru something similar will react in their own unique way to medications, surgeries, radiation, etc... That said, its very difficult to make a truly equal comparison even with someone who appears the "same" on paper. Theres still far too many variables to use the one person you know who has been thru this and is now on a permanent feeding tube and is unable to speak. This may seem shocking but please consider this person is fortunate to have survived and may be leading a full, happy life even with their permanent complications. Its amazing what some people go thru as routine, where others view it as a negative experience. Funny how some see a person in a wheelchair as a sad thing, feeling sorry for that person having to suffer like that, unable to walk. But to the person in the wheelchair they feel incredibly lucky to have survived at all and gone on to live a long, mostly healthy life that has some challenges but they take it in stride and are just so happy they're still alive they are a joy to have around. I hear the words "inspiring", "motivating", "touching" used alot when I talk with people I meet in my travels. But what isnt really factored in is ... when facing a life and death situation, making those hard choices as a parent who is considering children's overall best interests, we as OC patients often will do what is necessary instead of what we think is easiest and less invasive.
Treatment plans are created out using a complex flow chart from NCI (the National Cancer Institute) (I think?!?!, it might be the other US gov. cancer organization, sorry!!!! I just cant remember right this minute) medical test results, etc. Depending on so many variables to map out the treatment plan for each patients exact situation. To do radiation or not to do radiation has been discussed many times here. You arent alone in fearing the long term issues from rads can negatively impact your long term health. It is a very important decision that has life long ramifications with whichever decision you make. Many patients with oral cancer (OC) that have their tumor removed surgically will still need to go thru radiation about 6 weeks after the surgery. This is usually done to eliminate any possible stray cancer cells. All it takes is for one little "straggler" to be missed to cause a recurrence. You are correct saying radiation causes many life-long issues that cant be changed. But, radiation does NOT always (or even usually) bring on recurrences or other cancer in even half of those getting rads. Im not a "numbers" person so Im sorry I do not know the exact percentages of radiation caused other cancers. Radiation compromises healing and for an area like yours thats recent had surgery, you could have some complications with reduced ability to heal in that area. I guess its all about what perspective someone is looking from at the pros and cons of doing rads. It may come down to how much the patient is willing to endure or what risks can they compromise where they still live a happy, somewhat healthy life after their recovery. Seeing someone that has what many around here call their "shark bite" scar with (tissue taken from their wrist/forearm to rebuild the part of the tongue that was removed) to someone not familiar with OC would appear as horrifying. To those who have already been thru similar things, its not so much of a big deal. Some choose to roll the dice and not do rads where others want to throw everything they can at it to "do it once", to eliminate the cancer once and for all. The question of what would you do in the same situation would actually be a perfect question to ask your doc. They have your entire medical history, years of medical school, years of clinical research, plus you (the patient) right in front of them to examine and ask questions of to assist in determining what the best treatment plan would give the patient the best chance for a successful outcome. If you havent already done so a second or third opinion should be your next step to help you decide what path to go with.
Having radiation does NOT
"almost guarantee myself a secondary cancer down the road along with the lifetime side effectsI" One of the best things I can tell you is to read both here on the online public forum and also on the main OCF website. By reading more info from a
reliable source, will make you a very strong advocate for yourself whichever path you decide to make. Its another
"everybody's different" type of situation. Not every patient experiences every side or after effect. The patients who do rads that follow their doctors instructions and push themselves to eat and drink over the daily minimum intake amounts will usually be one of the lucky few who sail right thru with =barely noticing any side or after effects. After years of reading every single post and interacting with almost every single member who joined after I did, Ive picked up an incredible amount of info with some stats of what I usually see happen to OC patients. Even though Im NOT a numbers or percentages lover since I was the exception to the rule with my very low chance of survival back when I had my 3rd (and much more serious) OC diagnosis. I overcome so many unexpected complications and somehow survived, surprising my entire medical team. What Ive noticed about OC patients going thru rads, roughly 10% are the
"sail right thru" luckier patients, barely noticing any of the side effects and having relatively minor after effects. Next, about 20% have not quite as easy of a time but they do pretty well with having only some radiation related challenges that with minimal effort can be turned around, about 50% will begin to struggle while going thru rads about week 3 and have a hard time but its only temporary and around 6 months after rads they are almost back to how they were before cancer. Then theres the last group... the 20% I'll call them the
"challenging" patients who are
positive they know everything, they bury their heads in the sand, ignoring their doc and medical teams advice until everything suddenly catches up with them and they find themselves
in trouble with many major side effects often requiring hospitalization to get them back on track. Years ago radiation was different, it carried many more complications and wasnt as exact as it is today with the cyber knife, IMRT, etc. What a patient went thru 25 years ago wouldnt be anything like what it is today where rads does
NOT carry the same wide area of scatter rads affecting so much more than necessary. As always, every patient is different but one common factor in those who get thru it easily vs those who have problems is how well they follow doctors orders and if they're making of able to exceed their daily minimum intake thresholds, every single day.
The thought process of cancer patients form 25+ years ago is very different than what it is today. Seems like everyone knows someone who knows someone that had XYZ cancer and used some wacky old wives tale to overcome things. Just take whatever info anyone who you are talking to with a grain of salt as it most likely will NOT apply to your specific OC situation. For example, take breast cancer patients who are treated with chemo only... they can have treatments for several years all while leading their current lives with barely noticeable side effect (to the patient, they're severely debilitating!!!) it all goes back to the perspectives of who you're talking to. You will find some people come out of the woodwork telling you what you should or shouldnt be doing and how their neighbors sons boss did this or that for their prostate cancer... the person telling you this does NOT understand how different and difficult OC can be. They're especially uneducated about OC, most never even meet anyone who has had it. Even worse, they could be getting their "knowledge" from a social media chat group thats unmonitored so far fetched stories run rampant along with bogus claims for products that will "cure" the cancer patient.
Patients need to be aware of anything that
could cause long term after effects, they need full disclosures. But... what one person goes thru does NOT mean the next patient will follow the same path. Some patients struggle from a surgery with compromised healing, eating and/or speech difficulties after having rads. All these things arent something anyone can ever predict or change. Focusing on what is within our control and avoiding "borrowing sorrow from tomorrow". goes a LONG way in making things as easy as possible. Many younger moms have been thru OC, a few had recurrences (MOST did not) and overcame OC again. All any of us can do is to talk and listen to our doctors, go for a second or third opinion and work on doing what it takes to eliminate the cancer... every teeny tiny cell!!!! If possible, prepare for the worst but also hope for the best. This is especially true with parents of young children. I know its NOT easy, not at all!!! But, it is doable
. If you havent already, start lining up some helpers just in case you decide to do rads. Theres a million little things that can be done to make it easier on yourself and your family where many helpers can make a big difference.
I mentioned earlier reading more about your illness from reputable sources. Below is the link to our Understanding section where theres up to date medical info to read thru so you can better understand everything you may need to know to make those hard decisions. On the very bottom of any page are links to get to the main OCF site. Click on the words OCF Website which is the first item listed on the bottom right, or on the link I have here on my reply. As always, we will do our best to help make this as easy as possible for you and your family. We all have been thru it ourselves so we understand things people who didnt experience what having cancer, or OC means, how it impacts EVERYTHING, and how the ripple effect touches so many around the patient.
Best wishes with everything!!! I hope you have a speedy, painless recovery
Main OCF Site... Understanding section
