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#181944 05-25-2014 08:15 AM
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Hi, my name is Ron. After not being able to sleep for 4 days, and my wife and kids upset, I thought I would reach out to see if anyone could give me any advice.

I went in to have a couple of small cavities filled five days ago. When the dentist first looked in my mouth she said I had a small spot on my soft palate toward the back. She thinks it oral melanoma. It is a light brown color, 5.5-6 mm length 1-2 mm width. It looks like a bomerang with one end slightly tilted up. It is flat. It is not raised and there is no irritation around the edges.

She had just examined me mid December and again about two months prior to that. She says it wasn't there. I told her that was a spot where I had burned the roof of my mouth about 1.5 weeks ago. I asked her isn't melanoma dark brown/black/purple. She said yes, but it is possible that it could be a different color. Out of all the pictures I have now reviewed, this doesn't look even close to any of those.

She took photos and sent them to an oral surgeon. Later in the day she called me back and said that the oral surgeon said that if it was his family member he would simply tell them to come back in a couple of months and see if there was any change. He thought it was something probably more like a palatal oral melanotic macule. However, she was wishy washy over it saying that she has a 95+% accuracy of initial diagnosis.

It seems odd to me that an experienced oral surgeon would suggest waiting a couple of months to have something checked that looked like oral cancer, let alone wait on something that is supposed to be oral melanoma. I know that the dentist is over aggressive at times, but this just seems so odd. Given her conclusions I said, how can I wait to see if it grows. So, asked if they could get me into the oral surgeon. Now waiting for an appointment.

Is there anyone here that might be able to give me any feedback on any of this?

Thanks!

Questions #181945 05-25-2014 08:40 AM
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I should add...I spoke with a MD I know and gave him what info I had. He said it would have taken years for a oral melanoma to grow to that size. He says it would have been visible over many exams I have had with the dentist. In addition, he said that if it were melanoma, of that size, it would have already spread everywhere. Just more reasons to not sleep...

Questions #181947 05-25-2014 11:23 AM
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Welcome to OCF! Waiting to find out whats going on is agony. Im sorry you and your family are stressed out by this.

I suggest you seek out an ENT who is experienced in treating oral cancer patients. I would also suggest having your "spot" biopsied so you will know for sure exactly what you are dealing with and can take steps to correct it. Hopefully its nothing too serious!

Try to stay calm, worrying and stress only makes everything harder on everyone. It likely will be a few weeks until you get the results so try to take a deep breath and get prepared to wait. It will be at least a week before you will get an ENT appointment, then the biopsy might not be done until the following week and yet another week before you get the test results back. This is why Im hoping you can relax alittle and not cause undue stress. I know how difficult that is but please try.

Hang in there, best wishes!


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
Questions #181951 05-25-2014 05:26 PM
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Hi questions,
Based on your second post, it seems the wait and see is pretty reasonable from a medical perspective. If this was not there a few months ago then it is not likely a oral melanoma.

Probably not going to help make you feel less anxiety but from my chair, the general idea is oral cancers are slow to grow, giving you some time to diagnose.

If you have a lot of anxiety about it then ask to get a biopsy done. It is a simple and fast procedure and if it puts the question to bed, then it is likely worth it for you to do.

Good luck
Don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Questions #181954 05-25-2014 06:43 PM
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Hello. You need a biopsy to make a diagnosis. I would be comforted by what the oral surgeon and your MD have said, but, after all this worry I would insist on a biopsy. This is the only way for you to get a diagnosis and to stop the worry. Take note of Christine's advice to seek out an ENT who specialises in oral cancers.
I know it is extremely difficult not to worry , but, you can't change what is. You are just making your life stressful.
Let us know how you get on.
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
Questions #181957 05-26-2014 08:25 AM
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Thanks everyone for the responses. I have an appointment set with the oral surgeon for Wednesday. I will also seek out one with an ENT. Yes, the mind runs wild after being told something like this. And I agree, even though the oral surgeon had offered the wait and see (which is comforting on one hand) and the dentist completely the opposite...I now need to be 100% sure to put my mind at ease. I will let you know what happens Wednesday.

Thanks again for your insights and support!

Questions #182619 06-20-2014 08:26 AM
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Well...I saw the oral surgeon. He says it is just a discoloration (which is light brown) and he says melanoma is black. I have found that the research findings on oral melanoma vary somewhat because there are so few cases of it. The oral surgeon told me that he suggests not removing it because it is just a discoloration - why disturb healthy tissue. However, my dentist still insists it is oral melanoma. Although, she has only seen a couple of oral cancers in her carreer and those were not oral melanoma. This has become very frustrating:-) Not sure what to do now.

You would want to think that the oral surgeon, who is also an MD, would know what he is talking about. However, it is so rare that you start questioning that.




Last edited by Questions; 06-20-2014 08:26 AM.
Questions #182623 06-20-2014 09:14 AM
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I'm not sure what you mean by an oral surgeon. Is that some kind of advanced dentist?

As has been suggested I would be seeing an ENT, and I would expect they would do some sort of biopsy.

And don't go Googling for a diagnosis, you'll just worry yourself. Not every headache is a brain tumour! Every case is slightly different, and every medical decision is based on a range of factors you might not understand. What you can use the internet for is to help you understand the information the doctor gives you, because it is often a lot to take in and you only have the doctor for a short period of time.

Best of luck and let us know how you go.


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
OzMojo #182624 06-20-2014 09:50 AM
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Hi Dave, he is a DDS and MD. He is an Oral and Maxillofacial surgeon. It is my understanding that if this was oral melanoma he would be the one doing doing this very invasive surgery.

Questions #182625 06-20-2014 10:08 AM
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Get an appt with an ENT. I would not let anyone cut on me until I had more opinions.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
davidcpa #182626 06-20-2014 10:14 AM
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Thank you, I will do that:-)

Questions #182666 06-21-2014 02:38 PM
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Your guy has only seen a couple of cancer cases???

You need to see and ent with a cancer specialty. and ASAP!


My intro: http://oralcancersupport.org/forums/ubbt...3644#Post163644

09/09 - Dx OC Stg IV
10/09 - Chemo/3 Cisplatin, 40 rad
11/09 - PET CLEAN
07/11 - Dx Stage IV C. (Liver)
06/12 - PET CLEAN
09/12 - PET Dist Met (Liver)
04/13 - PET CLEAN
06/13 - PET Dist Met (Liver + 1 lymph node)
10/13 - PET - Xeloda ineffective
11/13 - Liver packed w/ SIRI-Spheres
02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node
03/15 - Begin 15 Rads
03/24 - Final Rad! Woot!
7/27/14 Bart passed away. RIP!
Questions #182722 06-23-2014 08:40 AM
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Get an appointment with a surgical oncologist. You will need someone who knows about cancer and can do the surgery.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Questions #182724 06-23-2014 08:46 AM
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YUP an ENT at a local cancer center....


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
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