| | Joined: Aug 2013 Posts: 4 Member | OP  Member
Joined: Aug 2013 Posts: 4 | I've just been diagnosed with mucoepidermoid carcinoma. We saw head and Neck Cancer Specialist on 8/20. Going back tomorrow for treatment plan suggestions - He wanted to consult with doctor who did the excisional biopsy. Also going to see Radiation Oncologist tomorrow as well. What kind of questions should I be asking?
The pathology report showed a negative margin- so He initially advised that doing nothing was not a good idea. So are we to assume that a negative margin means cancer is still there?
Also- the PET scan showed spot on my thyroid so I have a biopsy on that next week. Is that something that is treated in tandem with these doctors or is that a whole other set of doctors?
Last edited by julkev; 08-29-2013 09:56 PM.
39 yo Female
8/6/13 excisional biopsy, right floor of mouth
8/12/13 DX of mucoepidermoid carcinoma, intermediate grade
8/30/13 T2N0M0
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | The thyroid spot may or may not be an issue. If it would turn out to be cancer the same team of doctors should be taking care of everything.
If you havent sought out a CCC, it would be a very good idea to seek one out.
With negative margins my guess would be your treatment plan will include radiation with or without chemo. By adding chemo it makes the radiation more effective.
Best wishes!
ChristineSCC 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  | | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 4 | To my knowledge, negative margin usually means no cancer was found up to certain mm around the tissue, maybe 5mm. A positive margins means there was still cancer cells in the surrounding tissue from the dozen section biopsy.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | I hope Paul is correct. Im more familiar with the terms clean or clear margins.
ChristineSCC 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 | | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 4 | There is positive, negative and close margins, others maybe. Still, depending on type of cancer, location, other histology, may require further treatment. Yes, I have heard different terms as far as scans, surgery...looks good, were winning so far, stable, clear, a few cancer cells are still there.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Aug 2013 Posts: 31 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Aug 2013 Posts: 31 | Is it something about Texas? J/K I just got diagnosed with the same cancer a couple weeks back. Unfortunately I have to wait for treatment plans till I am out of my first trimester. I have read MEC can be linked to thyroid cancer just not sure if they know why or much more about it. So I would assume at a CCC the same doctors would be taking care of everything. As far as questions go, I would be asking everything that's been running through your mind, start writing them down and take it with you. Wishing you the best.
DX with MEC salivary gland 8/20/2013 age 27 F 9 weeks pregnant
Jessica, Mother to a 4 and 9 year old
11/18/2013 surgery to removed tumor, including bilateral jaw muscle. 2nd Trimester.
12/2/2013 results came back for clear margins
| | | | | Joined: Aug 2013 Posts: 4 Member | | OP Member
Joined: Aug 2013 Posts: 4 | Thank you. We got so much more information yesterday and we have a treatment plan. I kept thinking that I had surgery- why do I need another but the Radiation guy said it best- you just had a biopsy not cancer surgery.
Both the head and neck guy and the radiation oncologist recommend surgery and radiation if necessary, depends on pathology reports from surgery.
I think the shock makes it hard to think sometimes. I appreciate the feedback.
39 yo Female
8/6/13 excisional biopsy, right floor of mouth
8/12/13 DX of mucoepidermoid carcinoma, intermediate grade
8/30/13 T2N0M0
| | | | | Joined: Aug 2013 Posts: 54 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2013 Posts: 54 | Julkev,
I agree with the shock making it hard to think. It looks like we were diagnosed about the same time. I too am facing surgery.....on Sept 11. If you want to just talk about anything....I'm here going thru the same thing at the same time.
48 yo female, quit smoking 4yrs ago, light drinker, Stage 2 SCC, Bx3, Dx 8/22/13, surgery 9/11/13. Partial glossectomy, bilateral neck dissection levels 1-4. Tongue reconstruction with flap from forearm. 87 Lymph nodes CLEAR. Tongue margins good at 1 cm. No further treatment planned. Monthly monitoring planned for upcoming year then periodic monitoring for next 4
| | | | | Joined: Jun 2013 Posts: 346 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2013 Posts: 346 Likes: 3 | Negative means clear around here too. Drove my husband nuts, because how can negative be a good thing? But that is the definition I have heard many times in this region and online too.
Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
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