Welcome to OCF! Im so sorry to read you have been thru this at such a young age!! We have many members under 30 that have had SCC OC. Unfortunately when posting on old threads it frequently brings up a great many posts written by people who sadly are now deceased which can be upsetting to our long term members. Some families get email notifications of new posts on their deceased loved ones posts which is like opening up an old heartache that never goes away after such a loss. With respect to all those who are no longer here, Im moving your post its own thread. Its best to
not revive a thread that contains a collection of 13 year old posts which most likely contains outdated posts/info.
In your quest to determine the cause of your dysplasia and/or oral cancer, Im surprised your doctors didnt explain some very well known, scientifically correct info. Most patients do not go into such great details about their illness. Most patients prefer to get rid of the cancer ASAP then they do their very best to return to their normal life as much as possible. I also wondered if your searching was your own personal project as theres significant info thats easily found on our main site where you can read for hours or also on the CDC, NIH sites. Your oncologist should be able to point you in the right direction to get correct medical info from legitimate sites and not veer towards sites that appear legitimate but are only trying to get you to purchase unnecessary testing. You may want to do yourself a big favor and check Quackwatch.org to ensure you are finding correct info. I look at these things as if they actually worked to pin down the exact cause of an illness this would be checked for every patient at every treatment facility in the US. OCF is based in the US, as am I so I can only speak for what happens in the US. We have the FDA (food and drug administration) that takes years to pass along medications, new medical procedures, etc to ensure no patient is harmed. Other countries do not have this "watchdog" approach of stringent testing before things are brought to the mainstream medical professionals. I also am wondering if your oncologist explained in detail that theres a large percentage of newly diagnosed patients who have no known cause... its NOT from lack of trying to track down why they got cancer, there is no specific reason one particular patient gets OC and another similar patients doesnt. Its so much more productive to put your energy into something that is within your control instead of chasing the unknown which probably wont ever give you the specific details you are seeking. By educating yourself more on OC, it will help you to better understand the why behind things. Unfortunately the
"WHY ME????" may not be something you can location where its correct medical info.
First. SCC at this time to my knowledge has not been determined to be something genetic. Of course that doesnt mean there wouldnt be some minor factor that hasnt yet been linked to SCC. One important piece of info is the location of the tumor as your cancer very well could have been caused by
HPV. That is the largest growing population of newly diagnosed oral cancer (OC) which is actually 2 seperate diseases. All this is easily found when you have the time to read about in greater detail.
I noticed a few things you mentioned that unfortunately are NOT scientifically correct. In order to maintain our Health on the Net (HON) certification status .... we keep ONLY medically correct info visible on our site, I must address the misunderstandings. Its a high honor to earn the distinction of being HON certified, far too many sites can not meet HONs most common Very few websites are capable of earning HON's yearly badge for only allowing only scientifically proven health info on their site (usually due to not being properly monitored and for selling things to that sites members). But regardless of the status... the following info is correct for the US. Dysplasia is
NOT cancer or a pre-cancer even though many call it that. The chances of dysplasia evolving into SCC is less than 10%. Most patients that have their dysplasia removed will see it return... this is very common and does NOT have any hidden meaning of the future progression of the dysplasia. As I mentioned earlier... all this in depth genetic testing is a newer trend in the US. Unfortunately enough info is not yet known to determine how precise those tests are. In the US any patient diagnosed with SCC located on the tongue (mostly base of tongue) and/or tonsil areas would be. tested for
HPV as that is the likely cause of their cancer. All that genetic testing is irrelevant if the tumor tests positive for
HPV. Theres around 200 strains of
HPV, only a handful of strains turn into a serious health concern. They can and often do sit dormant for decades before causing cancer but the odds are VERY low! Talking about a rare disease.... OC is a rare cancer! Approximately 53,000 newly diagnosed OC patients will go thru OC in the US this year. With
HPV+ being studied in the US for about 20 years A great deal has been learned but also a great deal is still being discovered. The most common
HPV+ strain we see in our members who appear to be perfectly healthy is
HPV+ 16. If you have not yet been immunized for
HPV, I suggest immediately go to your family physician and request the shot. If theres something out there that protects you from having many different cancers and illnesses, why wouldnt everyone get it to protect themselves? In the US its been available for both boys and girls for many years and now it is ok for patients up to age 45.
Some other things I noticed which surprised me... I noticed the very first post you made BEFORE your into was asking another member about dysplasia if it was ever permanently eliminated. That was surprising as every single cancer patient I know .... (considering Ive met and worked with thousands of OC patients/survivors!) ... are people who has have been forced to face their own mortality, endure agony to eliminate the cancer, went thru far too many very, VERY bad days, extremely long hard recoveries and they still are not sure if they will even survive would NEVER focus on something as minor as dysplasia. When a patient is given that initial diagnosis its a life changing event and their entire life is forever different. Im sorry but dysplasia almost always returns when surgically removed and only about 10% or less of the time progresses turning into cancer.
When talking to people from all over the world, its understandable that different countries do things differently. In the US genetic testing is advancing but its a long process which could be on hold while instead researchers are working 24/7 to find a cure for the pandemic which also must pass the FDA requirements and testing. It would never be used to predict dysplasia. One other item you mentioned... the mental spect of not being able to live fully with an unknown future if the cancer or dysplasia would return. Unfortunately what we see at this time isnt optimal but there are a great many avenues patients can elect to seek out to better manage their unfounded fears. Everyone is always afraid of the unknown but sometimes some people will focus on the absolute worst case scenario and somehow take it to heart by considering themselves to be dying from something that is NOT at all serious or life threatening. I strongly recommend anyone having the feelings like what you wrote about find a good therapist to talk things over with and you could also benefit from anxiety meds. I wish I had a way to permanently eliminate your fears, but without a medical background or degree specifically in psychiatry, my hands are tied. Fear of a recurrence is ALWAYS one of the mostly common fears cancer patients go thru after having cancer. You are actually VERY fortunate!!! By only being treated with surgery for the tongue cancer, you actually got away easily without dealing with things almost every other OC patients goes thru. Look on the bright side .... you did not face weeks/months of going thru rads and dealing with the debilitating side effects that goes along with those kinds of treatments so you truly are very lucky. For those with only dysplasia.... they are even more fortunate not to have a life threatening disease!!! Im sure any member here who has dealt with OC would immediately trade places with someone who only had dysplasia which is NOT cancer.
Wishing you all the very best with everything!
Main OCF Site, contains hours and hours of reading info about OC
