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Joined: Jun 2007
Posts: 10,507
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Kevin, from what Ive learned about oral cancer (OC), its not like other cancers... it is not hereditary. Out of the thousands of OC patients both here and those Ive met in person over the years, only one person Ive ever met had a parent who also had OC. Its been several years since I met them and so many more patients who needed help followed, Im sorry but I can not remember any other points of their illness like if they both smoked, drank or were HPV+. Those patients who have HPV+ tumors have better survival odds than those who are former or current (hopefully not!) smokers and drinkers. Theres also quite a few here who have developed OC but their doc isnt able to determine what caused it, nothing to link it to anything hereditary. Approximately 5-7% of OC patients have no known cause. Not that it really matters that much where it came from, the cancer still must be eliminated and treatments are the same anyway. More info in the links below.

The signature info has not and will not ever be compiled. At OCF, we protect our members identities by everyone being anonymous using screen names. Their personal identifying medical info that they have shared in their signatures is there NOT for data collection, its to help fellow members to better answer their questions more accurately. This info is NOT stored or to be shared with any individual, business, or government organization...never! It is also not compiled as it is not scientifically proven and often its not kept up to date. That type of info wouldnt be accurate and includes only things the member who is writing the signature feels is of importance. Plus theres also HIPAA laws protecting personal medical info. Since advertising is prohibited and our online message board is regularly monitored 24/7/365 anyone coming here for unscrupulous reasons will never get very far before they're permanently banned from our site. Anyone joining our group to gather patient info has joined the wrong group. This is explained in the OCF rules every member agrees to abide by when joining our site. In fact before a new membership can be fully activated the new member must agree a second time to abide by OCFs rules.

In the US there are guides doctors go by to create treatment plans. Im sorry but I do not know how this is done in other countries. The flow chart guide is how physicians know what are the best ways to get the best results depending on certain criteria. This has been done over many years and is regularly updated to reflect the best tried and true methods. The NCI (National Cancer Institute) site will better explain the complex manner that goes into creating a treatment plan.

Being new here, you have not yet learned all the ins and outs of our online group. Im sure you will easily pick it up in no time. The best thing would be to stop in often, read posts, putting more posts up and become familiar with using our search function. OCF has been around for a long time so just about any question anyone can think of has been previously posted and discussed. Im sending you a private message (PM) with a link thats going to help you quickly and easily learn the ins and outs of the forum, it also elaborates on Glorias above post for adding a signature. Look for and click on the tiny flashing envelope next to the My Stuff tab which is in the middle of the toolbar on any page.

I noticed your surgery was already set up for the 30th. Without all the test results in and without the tumor board meeting where all specialists from the CCC meet to discuss each individual case Im surprised you are scheduled already. Just remember... surgeons cut, thats what they do and once its been removed it can never be put back. I have absolutely no info about the specific doctor or facility you have selected but prior to surgery patients should always seek a second opinion. Its just like car buying (but with a much more serious situation), you wouldnt want to buy the first car you looked at without doing any comparing. Im wondering about a couple things... you said the tumor quadrupled in size but you hadnt gotten test results yet and why you went to your family doc instead of waiting for the oncologist. Many family doctors (and surprisingly even many dentists) are not experienced with treating oral cancer patients and wouldnt know up to date info or be able to help with anything to do with the cancer. I know being newly diagnosed is a very scary time, especially when you arent familiar with the disease. Everyone is afraid of the unknown, every single person. Please relax, you are among friends. You have us to lean on and learn from to help make this as easy as possible for you. Take this one step at a time and try not to get too far ahead of yourself. Most of us are our own worst enemies when it comes to the "what if..." way of thinking. Waiting can be agony with so many questions swirling around in your head. Do your very best to avoid negative thinking, stay busy doing positive things and focus on what is within your control. The extra stress caused by "what if..." is not only unproductive but it an actually makes everything even harder. Soon enough you will begin being treated so you may want to start preparing by eating all your favorite foods, desserts too. Your ability to eat will likely be compromised for a while so make certain you do not go into this with any cravings. If you are slim or average in size putting on a few pounds before being treated would be a very good idea. Im sure this subject will come up again before you start any kind of treatment. Also within your control is who you discuss your illness with. Anyone you tell who offers their help tell them when the time comes you will let them know what they can do. Start a list, write down their name and full contact info. Theres a million and one small things that can turn into a huge help to you when going thru cancer treatments and recovery.

Think positive and hang in there!!!


NCI site, cancer treatment

Main OCF site, Understanding oral cancer section



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Dec 2017
Posts: 5
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Joined: Dec 2017
Posts: 5
Kevin -- I just went through this earlier in the year. Do they know how much of your tongue will need to be removed. I lost about 3/4 of mine which was rebuilt with tissue and vessels from my arm. Is this what they are planning to do, or is the tumor not deep enough to require much to be removed?

If they need to remove much of your tongue, we should talk further. I found it to be a pretty big ordeal, but I am doing well now (well enogh that I'm actualli on safari in Africa right now), and I am cancer free -- yeah! I had great docs but was not adequately prepared for what the recovery would involve.


MrsDranchak
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