Previous Thread
Next Thread
Print Thread
Page 2 of 2 1 2
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
Dont give up! Get checked by an ENT who specializes in oral cancer. If a physician or dentist tells you that you are too young for cancer, unfortunately they are wrong.


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 2011
Posts: 126
Senior Member (100+ posts)
Offline
Senior Member (100+ posts)

Joined: Dec 2011
Posts: 126
Mine was on the side of my tongue. It started out as leukoplakia, not a canker sore, but it did go through stages where it started to heal and then got worse... I don't think it turned into cancer until it got to the point where it stopped getting better and only worse. I am not sure how long you have been dealing with your sore, but as I mentioned I had mine for a very long time before it turned to cancer. If I would have gotten it checked out sooner, I imagine they could have identified in the biopsy that it was precancerous and removed it. So don't fret too much, if it is something it sounds like you are being proactive and catching it before it becomes anything serious! By the time I finally had someone check it out, they were able to diagnose me on the spot.


Emily - 24 years old at diagnosis
HPV-, no risk factors
T2N2b Squamous Cell Carcinoma
Left oral tongue, poorly differentiated
Hemiglossectamy, reconstruction, partial neck dissection
30 Radiation treatments, weekly chemo (cisplatin)
1/13/12 last day of treatment
Diagnosed October 2011
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
Yeah there is no such thing as too young. One of our youngest members was 17 or 18 and we've had quite a few in their 20s


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Joined: Oct 2013
Posts: 559
Likes: 1
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Oct 2013
Posts: 559
Likes: 1
When I was in treatment at first my RO gave me the "short" answer to all my questions. That was seldom enough information, so I had to keep re-asking the question, sometimes in different words, sometimes by just saying I needed more detail in his answer. He eventually started answering my questions in a way that actually helped me. I asked him why he did the short answer thing, he replied that MOST of his patients don't really want to know anything about their cancer or it's treatment. They just want to come in, get treated and leave. They wanted to have as little actual involvement with their disease as possible. Since they are the majority by far he starts off with the short answers on everyone. The interested patients show it by their persistence and he switches into a more helpful mode.

You can benefit your own situation heavily in conversations with your doctors by coming across like you are an educated patient and a good advocate for your own care. Using the proper medical vocabulary in your questions and statements and talking to him/her at a professional level is how you show them you have taken the time to learn about the disease, it's symptoms and it's treatment. If the doctor was giving you the short answers this is one way to get him out of that mode.

If you already consider yourself adequately educated about oral cancer and it's treatment, that's great. If you don't feel adequate in this area, then the OCF website has lots of valuable information to educate you. It's all there for the reading.

The previous two paragraphs assume that this is the right doctor for you to be talking too in the first place. Others have said already that you need to be talking to an ENT experienced in oral cancer. Not all ENT's have this experience, many non-specialists have even less experience in this area. Someone mentioned above that dentists seem to be catching on to oral cancer better than some doctors. I too have found that to be the case, but that doesn't mean your dentist knows enough. If you want to determine your dentist's knowledge level about oral cancer that's fairly easy. Go to Youtube and search for oral cancer screening videos. There are some good ones available. Once you know what a proper screening looks like you will also know if your dentist (or doctor) knows what they are doing. It will make it much easier for you to determine if they know what they are talking about. I haven't checked recently but if memory serves OCF was going to make some screening videos available on their website.

I hope this information helps and that I haven't totally misunderstood what you are asking. Keep asking your questions, someone here has seen just about anything you can imagine and can help you with it.

Good luck,
Tony



Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

Page 2 of 2 1 2

Moderated by  Brian Hill 

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,168
Posts196,924
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5