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Joined: Mar 2019
Posts: 2
StevenJ Offline OP
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Joined: Mar 2019
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Hello all. I am not sure if I should be reading anything in this forum and elsewhere on the internet! It is all very scary. I discovered a growth inside my right cheek recently and a biopsy was taken. Yesterday, I received the bad news. The diagnosis was: Right Cheek: Moderately Differentiated Squamous Cell Carcinoma. Most of the biopsy report I do not understand. I did start inputing various technical medical terms into google. This statement really scared me: Definite areas of lymphovascular invasion and perineural invasion are noted. From what I read, that refers to blood supply and something to do with nerves. From what I have read so far, that is not good! I hope I am wrong.

I have not met with a Doctor yet. The Doctor who gave me my biopsy results yesterday gave me a list of good Doctors in the South Florida region. He highly recommended Dr. Robert Marx (University of Miami, Miller School of Medicine). He said this doctor is a leader for this type of cancer. I did a search of his name on this forum and I noticed he even has a protocol named after him! I was lucky enough to get appointment with him on March 26, 2019. If anyone has any advice on what I should ask, etc, or any advice at all. I would appreciate it.

Obviously, I do not know what stage I am in yet. I am very concerned and scared. All of my upper teeth have been removed (unrelated to this). I already have 5 implants in my upper jawbone, with a permanent denture attached. It stays attached all the time except when my Dentist takes the denture out yearly and cleans behind the denture. All my bottom teeth have crowns on them. I have ready many posts that mention removal of teeth. I certainly don't want to loose my bottom teeth! I guess I am getting ahead of myself! Anyways, Thank you for reading my post.

Steven


SCC 03/09/2019 R chk age 56
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
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Joined: Jun 2007
Posts: 10,507
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Welcome to OCF, Steven! Im very sorry you have been recently diagnosed! I remember that shock of when I was first told and how naive I was back then. Best thing I can tell you is to read, read, and read some more!!! But choose the source of your research carefully and avoid Dr Google!!! At OCF, we are proud to carry the health on the net badge which not many cancer websites can say. The health on the net shows our site adheres to providing only correct and up to date medical info. By reading both here and on the main OCF site, you are educating yourself about oral cancer so you will have a much better understanding of the disease, treatments, etc and become a strong advocate for yourself. Remember, knowledge is power!!!

As far as Dr Marx, any other physician or treatment facility is concerned, OCF does NOT rate or promote one over another. There are dozens of websites that rate doctors, dentists, lawyers, hospitals or anything else you can think of using their own set of criteria to rate them on. In todays world of litigation, its best to avoid mentioning specific people or even hinting about a personal opinion regarding any medical professionals. OCF always avoids disparaging remarks and prefers to maintain a positive, diverse site where we all learn from each other while bonding over a common enemy, oral cancer (OC). Some things we always tell our members is to seek out the very best medical care you can and go with it, second opinions are very important, and if possible try to get an appointment at a comprehensive cancer centers (CCCs). Its been proven patients treated at a CCC have the best outcomes. CCCs operate using a team based approach where all the specialists work together so everyone is on the same page. Their meetings are called tumor boards and the patient and their caregiver are allowed to attend and ask questions. If possible, try to not let location be what determines your doctor or treatment facility. The CCCs offer very low cost or free patient lodging nearby and supply transportation to their facility and theres even places who fly cancer patients for free or very low cost. Off the top of my head the top CCCs are MD Anderson, Sloan Kettering, Johns Hopkins, and Moffitt (near Tampa, FL).

I noticed you mentioned reading about teeth removal on the forum. Yes, thats probably nothing you need to be concerned about at this time. No matter what your treatment plan is or where you're being treated you will need to go to the dentist to get an exam and a thorough cleaning. Not all dentists are knowledgeable about OC, if yours isnt you will need to find a dentist who is so your teeth are properly examined and prepared for the treatment phase.

Something almost all OC patients experience is temporarily compromised ability to eat and drink. The best thing I can tell you is to start immediately on eating all your favorite foods, desserts too. You do NOT want to go into this having food cravings as its likely to be several weeks, possibly months until OC patients can enjoy all their favorite foods. Dont worry about gaining weight by eating all your favorite foods, most patients will lose weight during treatments even if taking in significantly higher than usual calories.

Hope this info wasnt overwhelming. Theres just sooooo much to learn when you first start out. Im very glad you have found our site as now you have an excellent resource to help you with everything. You're among friends here, we completely understand everything you are dealing with. Feel free to ask questions and its ok to lean on us when you need to. The Understanding OC section in the following link has TONS of info including things newly diagnosed patients should do and know, types of treatments, HPV (not normally found to cause OC where your tumor is located), complications some patients experience, and theres even a financial assistance section with links to organizations that may be helpful. Best wishes with everything!!!

Main OCF site, Understanding Oral Cancer

NCI CCC list, (can view by map too)


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: Mar 2019
Posts: 2
StevenJ Offline OP
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Joined: Mar 2019
Posts: 2
Thank you Christine for responding. I appreciate the information you provided. Does the edit button disappear after a certain amount of time?

Thank you.

Last edited by StevenJ; 03-10-2019 05:11 AM.

SCC 03/09/2019 R chk age 56
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
You're welcome, Steven! smile

You are very observant! Yes, you are correct about the edit button. After a post gets published, the countdown starts. Members have up to 3 hours*** after they've sent their post to make any and as many edits they want. Any changes needed after the 3 hours can only be made by an Admin (either myself or Gloria) or other moderator. There are a great many behind the scenes responsibilities for OCFs Admin so please be patient when asking for edits to posts. Sometimes the change could be taken care of fairly quickly (in under 2 or 3 hours) and during busier times we may not get to the edit for up to 48 hours. The OCF forum is here to help OC patients and caregivers with correct, scientifically based info and support. We often are dealing with some very ill members who need our help which would always take precedence over an edit request. Plus if Gloria or myself are traveling, not able to get online, have personal or family crisis, not well or hospitalized, working on other OCF projects like helping with the studies you see posted on the forum from time to time will delay edit requests as well. Ive been an Admin here for almost 10 years and would guess Ive only had 2 or 3 requests to make edits after the member was past the 3 hour editing grace period.gate the OCF forum.

Im sending you a private message (PM) with a link. When you have a few minutes, please click on the link and review all the info. What Im sending you is something I created years ago to help our newer members learn the ins and outs of our online forum. As a Admin who does not easily pick up computer related things I wrote this so most people can understand it. Basically the link contains the most common issues new members need help with and tips for them to quickly and easily learn to navigate the OCF forum. S When you pull up our forum page, look towards the top right corner where you should see a tiny flashing envelope next to your user name. Click on the flashing envelope and you will be taken to your PM mailbox. These messages do NOT appear publicly, they're private between the member (or multiple members if its a group PM) and the sender. OCF ensures our members privacy by only allowing our members to PM each other.

Hope I didnt overwhelm you with TMI!!!


3 hours***..... The 3 hour window had been the same for years. Towards the end of 2018 OCF did a major upgrade to the forum and is using a different program. Im sorry but I view the forum differently than our members so I wouldnt be able to test if the "new" OCF forum is still going with the 3 hour time limit. Almost everything has remained the same or changed very slightly so Im almost positive the 3 hour amount of time a member is able to go back and make changes stayed the same.


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

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