Hello,

I went to my dentist for a routine check up and she noticed an elevation in my soft palate. She said it was probably my normal anatomy but sent me a referral for an ENT. I finally received the histology report from my doctor who called me this evening to let me know the results came back " benign low grade carcinoma". I am so confused as to how benign and carcinoma are the same thing.
I am going to have to get the mass and some healthy tissue surrounding it removed. I am getting the surgery sometime within the next two weeks. The mass removed will then be sent out again for histology to see if a secondary surgery is necessary. I am also getting fitted early next week for a mouthpiece to protect the roof of my mouth when the mass is removed because they are going as far as the bone. I am so nervous and unsure of whats to come next. I have a 16 month old baby that I still breast feed and I this all came out so suddenly. I live a fairly clean lifestyle and I just dont knowhow this happened. I can only think that I lived near the WTC on 9/11. I feel like I am a bit young to get something like this to happen.
I am worried about my baby, I am worried about medical bills. I am full of worries and I feel so overwhelmed and sad..

Welcome to OCF! Our site is made up of oral cancer (OC) patients/survivors and caregivers. Unfortunately our members do not have years of medical training or a medical background to be able to answer your questions. We know about OC and everything that goes with that kind of diagnosis.

Around here we dont get many new members with a benign low grade carcinoma diagnosis. Receiving a benign diagnosis is something to celebrate!!! This is coming from someone who has had OC 3 times with a very low chance of survival. I see you as someone who is so very fortunate!!! However, I do understand your fears and why you are worried. Most of us get nervous and worry about an unknown future of having any kind of illness. Take deep breath then step back and view the whole picture.... you do NOT have cancer which is a very, VERY good thing

Even though its not cancer, I still would recommend getting a second opinion. If you are in the NY area, Im certain you can easily find several ENTs who specialize in treating OC patients. You will want an experienced surgeon so they are skilled in getting clean margins. Prior to any surgeries, you should have a very long talk with your doc to review everything you mentioned in your above post. You may also want to seek out a therapist to help you work thru your fears. Anxiety meds could be something that would help you to relax but I dont know if thats an option with breastfeeding. Discussing everything with your doc should help to ease your mind.

For OC patients there is a small percentage of those who do not smoke or drink and are HPV- and have no other risk factors to have developed OC. Its 5-7% of OC patients have no known cause. I do not know if having a diagnosis of a benign low grade carcinoma fits into this category as it is not OC like what most here have (SCC-- squamous cell carcinoma). Thats another one to ask your doc about.

Best wishes with everything!!!

Thank you for your comforting response. I read through a lot of these posts and everyone is so inspirational and brave. I admire everyone's strength and I have a new found appreciation for cancer patients and survivors. What amazing and strong spirits! I have promised myself when I get through all of this I want to join causes for cancer.
I have been a bit frightened because the doctor did not clarify that I did not have cancer per se and when I research benign it shows non cancerous but when I look up carcinoma is shows cancerous, so I am left a bit confused. The doctor also said nothing is final until the removed mass is sent to pathology and checked. I really appreciate you taking the time to respond to me.

Ive been a part of this organization for 11 years which has taught me many things about oral cancer. Ive helped hundreds of patients and caregivers both thru this online forum, and also thru emails and phone calls almost every single day of the past 8 years. I am not a medical professional by any means! But, I have seen enough patients come here just like you, scared and feeling alone. Many of these people have looked back and wished they had gone for that second opinion instead of rushing to get rid of the cancer. Of course you do not want the tumor to be there (benign or not) any longer than it has to be. I strongly recommend getting a second opinion if possible at a comprehensive cancer center (CCC). Im not familiar enough with benign diagnosis to know if a CCC will see someone who has a benign diagnosis but please give it a try to get into one. Getting a second set of eyes with all their years of experience to check you out and read thru all your medical history is a very important thing to do. You want to get the very best medical care you can, put your faith in your physicians and go with it. Down the road you do NOT want to have second thoughts and wish you had spent an extra couple weeks going for the second opinion which could have a huge impact on your upcoming surgery.

Off the top of my head I know Sloan Kettering is a top CCC. Sorry but Im not sure what else is an option for you so Ive included a list of CCCs and a link for US News top hospitals, plus a couple other links which might be helpful (not sure due to the benign diagnosis). I suggest asking specifically if the surgeon will be doing frozen sections during your surgery to ensure the margins are wide enough to hopefully prevent any regrowth. A CCC uses a team based approach so all the doctors are on the same page and you dont have to run around seeing one doc on one side of town and another in the opposite direction where they each have their own version of your medical history. At the very least make some calls and see what appointments are available before scheduling to have surgery. Just remember... surgeons cut, they always advise patients need surgery and once its gone it can never be returned back to its original state. This is why I suggest a second opinion is your best option.

Hope this info helps!!! Best wishes!!!

List of Cancer Centers

US News Best Hospitals List

Main OCF Site, Understanding section

Main OCF Site -- Financial Assistance

Welcome!

New York City has the largest concentration of top cancer centers in the country, and forget about top doctors! Just off the top of my head, and including some of the cancer centers I was treated at include:

NYU, Beth Israel which is now part of Mt Sinai but still seperate, Mt Sinai, NY Presbyterian, NY Eye and Ear, MSKCC, and others.

You’ve received good advise so far, and wish the best!

Thank you Paul for your feedback, I really appreciate it. I am currently going to Beth Israel and I really like the provider I am seeing. Im going in for a fitting on Tuesday for a mouth piece, to protect the roof of my mouth during recovery. Surgery for removal of the tumor will be scheduled then for sometime within the next two weeks. It sounds horrifying to have a portion of the roof of my mouth removed but I know it has to be done. I cant wait till this is all over and I am hopeful that the pathology results of the full mass will be benign and no further action will be necessary. I am holding on to that hope.

ChristineB my oral surgeon explained to me the histology report showed what could be benign or low grade carcinoma cells. The pathologist was unable to specify which one it was. He said regardless if it is benign or low grade the tumor needs to be removed. He said his plan was to remove it with a margin of 5 mm of healthy tissue around it and he was going to scrape a bit of the bone as well to test. I am already scheduled to go for a fitting for a protective mouth piece to use during recovery and he wants to schedule the surgery ASAP. I am not sure how long a second opinion would take and if my insurance would cover this, this is all so new to me. When you say " Just remember... surgeons cut, they always advise patients need surgery and once its gone it can never be returned back to its original state. " what exactly do you mean? I was under the impression that the tissue on my palate should grow back and heal after the tumor is removed. Thank you for all your help!

Im sorry I hadnt explained my way of thinking clearer. Im talking about surgeons doing invasive surgeries. The surgery to remove a tumor is not only taking out the tumor. They need to take extra tissue surrounding the tumor to ensure they get every single microscopic cell so the cancer does not regrow. Thats called getting a clean or clear margin. For example, a patient has their tumor on the side of their tongue. The surgeon needs to take a large section of the tongue around the tumor which means the patient will have a long road. They will need to learn how to maneuver their "new" tongue how to eat and talk. The tongue will likely have a piece of tissue from another area of the body transplanted onto their tongue to replace what was removed. A SLP or nutritionist will help greatly in the patient adapting to their new normal. So once the surgeon removed the tumor and area around it the surgeon can replace the area with other tissue but the new tongue will never be the same as what it had been prior to the surgery. That area probably will not have any feeling or sense of temperature or taste. I hope now you can better understand what I had been thinking when I wrote my previous post.