#88262 01-17-2009 08:58 AM | Joined: Jan 2009 Posts: 11 Member | OP  Member
Joined: Jan 2009 Posts: 11 | My root cause for getting oc was this Actinomycosis. It caused a sore on my tongue that would not heal. This went undiagnosed for 17 years. The occurance is one in three hundred thousand. Has anyone here delt with this, or have any of your doctors mentioned it? I don't have much faith in my doctor right now.
SCC tongue stage 3. 43 nodes clear.
Surgery in 1996. 2nd surgery
(cancer) 2008. 3rd surgery will be in Feb 2009.
| | | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | I'm not familiar with that bacteria.
Don't be afraid to get 2nd, 3rd or 4th opinions...But, get opinions from doctors not affiliated with each other. It does help and it might bring a sense of security/faith with your current doctor...or you'll find one you like better.
Are you going to a cancer center?
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
| | | | | Joined: Jan 2009 Posts: 11 Member | | OP Member
Joined: Jan 2009 Posts: 11 | Had surgery at Mayo in MN last year. Currently seeing a doctor in Springdale that trained at Mayo. I'm thinking about getting another opinion like you said. I'm just not feeling a connection with this doctor. It's hard too when you go in to see him and he doesn't remember your case from just two months prior and he thinks that its the first time you have been to see him. LOL This is the doctor that has me scheduled for surgery in two weeks.
SCC tongue stage 3. 43 nodes clear.
Surgery in 1996. 2nd surgery
(cancer) 2008. 3rd surgery will be in Feb 2009.
| | | | | Joined: Mar 2006 Posts: 114 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Mar 2006 Posts: 114 | I believe my OC came from lichen Planus, which caused sores on my tongue which existed for months and even years at a time over the course of 6-7 years. I had several biopsies which were all negative for OC until the fateful one in 2006. Not the same condition as yours, but the same type of cause in that I believe mine came from unhealed sores which existed for long periods of time. There are mixed opinions in the medical community as to whether lichen planus is a precursor to OC. Some doctors believe it makes you more likely to get it, some don't.
-Steve
Age 41 - Stage 2 SCC tongue Dx 2/06. Cisplatin x3, IMRT x35. Mets to neck node discovered 7/07. RND 40 nodes removed, margins not clear. Cisplatin, Taxotere, 5-FU Fall 07, then IMXT/Erbitux for 7 wks. Inoperable mets to both lungs and pleura Dx Oct'08. 4 cycles Carboplatin, Erbitux, 5-FU so far.
| | | | | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Jbabb, What type of cancer did you have? From the name of Actinomycosis one might think this was fungal in nature. (it is not)
How did the doctor decide that this caused a cancer?
Where are my manners! Welcome to the OCF
Last edited by Mark; 01-17-2009 09:25 PM.
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
| | | | | Joined: Jan 2009 Posts: 11 Member | | OP Member
Joined: Jan 2009 Posts: 11 | One of the doctors at Mayo said it was Lichen Planus, but the dna test showed this Actinomycosis bacteria. I was then told that the actinomycosis kept the sore from healing and that this was the cause of the SCC. The treatment for this bacteria is quite extensive, but I am more than willing. My doctor however just wants to cut it out. The first two times I had surgery, the spot was back before I even healed from the procedure. I don't see any reason this time would be any different. This bacteria sucks. LOL, but I am thankful nonetheless. I had 43 nodes removed and they were all clear.
SCC tongue stage 3. 43 nodes clear.
Surgery in 1996. 2nd surgery
(cancer) 2008. 3rd surgery will be in Feb 2009.
| | | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | I have to assume treating the actinomycosis is a must--I googled it and it seems the process is many months of Penicillin, first intravenously then orally.
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
| | | | | Joined: Jan 2009 Posts: 11 Member | | OP Member
Joined: Jan 2009 Posts: 11 | Yes, that's what I am finding too Ray, but strangly none of my doctors have mentioned it. Even my Doc's at Mayo. They just keep doing biopsy after biopsy. Now my doc in Springdale just wants to cut it out again. I'm thinking that it would make the most sense to treat the actinomycosis, so the spots will stop coming back.
SCC tongue stage 3. 43 nodes clear.
Surgery in 1996. 2nd surgery
(cancer) 2008. 3rd surgery will be in Feb 2009.
| | | | | Joined: Jan 2009 Posts: 11 Member | | OP Member
Joined: Jan 2009 Posts: 11 | Now I have a doctor in Houston that tells me the bacteria is not the problem. She suggested having scans, biopsy, and surgery. So I guess its time for round three! Wish me luck.
SCC tongue stage 3. 43 nodes clear.
Surgery in 1996. 2nd surgery
(cancer) 2008. 3rd surgery will be in Feb 2009.
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