Hi all,my name is Laura Toms. Im 39,mother of 4 beautiful children, 3 boys and 1 girl. I had to take a break from the list for awhile to keep cancer off of my mind. Don't get me wrong, it's always lurking, I just couldn't have it weigh on me like it was. My 8 year old daughter has cystic fibrosis,so my plate was full before the cancer diagnosis. I joined the list in 2006 after my diagnosis of Mucoepidermal carcinoma of small salivary gland. After my surgery and other tests it was diagnosed as adenocarcinoma of small salivary gland, stage 2, clear margins and no lymph involvement. The tumor was upgraded to stage 2 because there was some nerve involvement within the tumor. Because of that I went with 6 weeks radiation tx, my doctors were split 50/50 as to whether or not to do radiation. I went with it and finished radiation tx Feb 2007. I had a lot of problems after radiation, including exposure of my jaw bone. It ended up healing on it's own which was wonderful. Doctors thought I was going to have surgery and daily hyperbaric chamber treatments for atleast 3 months.

Anyhow,I think I posted last around Oct 2007 when I had a bump/lesion appear seemingly overnight on the roof of my mouth/soft palate. This happened after I had seen my ent and he had scoped my nose/throat. I had a huge taste of the numbing medicine (lidocaine?). Nothing was noticed at this appointment and prior to seeing the ent, I had seen a dentist two days before. I also inspect my mouth daily.

Anyhow, when this lesion appeared, it was sore like a canker sore. It stung when I ate or drank certain foods, and was pretty swollen. I freaked out and messed with it which may have made things worse for awhile. Also wondering if it just scared this way from me picking at it? I went immediately back into my ent and he scheduled surgery for a biopsy. A few days before the biopsy was to be done, the swelling went down and was no longer sore. So, I went back into him again and he agreed that it was not as prominent so he felt we could just watch it.

I seen him last in Feb when he thought maybe it would be a good idea just to biopsy it anyhow since I have a history of cancer. It hasn't changed at all. Hasn't grown, hasn't shrunk anymore. No longer hurts and for the most part I no longer worry about. He said he could try to biopsy in the office with a local and cauterize if necessary. I have limited jaw mobility from surgery and rad Tx so may be difficult. I asked him if he could needle biopsy it and he said it's too small for that....it's around 10mm /size of the end of a pencil eraser maybe?

I was supposed to have biopsy done in March and they called and cancelled that appointment with me and rescheduled for this month. Again, they called and cancelled the appointment. I was a little more than irritated told them they have cancelled 3'xs on me so they rescheduled for the 28th.

I have some fears about doing this biopsy. One,afraid that it won't heal because of the radiation tx and Ill end up having bone exposure AGAIN. Two,worried about pain...I went through so much pain, I don't want it back. And I don't want to hear I have cancer again.....Im sure you can all relate. Another issue I have is this is not my original surgeon and head and neck specialist. My husband is in the coast guard and we transferred last summer. So, the doctor I trusted with my life is no longer seeing me. I don't have a lot of trust in this new doctor, and just don't feel that comfortable seeing him. I know I can see someone else, but would have to drop out of miltary care, get a new primary doctor, to get a referral to see a civilian care provider. In a lot of aspects,I feel it might be best to go this route. But, think it would be best to wait till I biopsy the lesion to make a decision. I still wonder what my other doctor would say about this lesion and if he would do a needle biopsy over cutting radiated tissue....

Im sure some of you here have had biopsies after treatment. How was this done? Am I just being a chicken? Please give me some feedback if you have.

thanks,
Laura Toms

I know that the putting it off thing can make it seem 10 times worse in your mind. At least for me. I think you are doing right waiting for the biopsy results. It may be nothing, so you won't have to get another doctor. But I am like you in thinking I would at least want another opinion.
What did they do when you had bone exposure? I am also have bone problems in my jaw.
Take care and stay busy!
Debbie

Debbie,

Im not sure how or why I ended up with the bone exposure but I was in excrutiating pain months after my tx ended. It took me everything to get up and care for my daughter, who at the time was having surgery and iv therapy also. The doctors didn't see the exposure (because my reg doc was on emergency leave at the time)until a week before we were moving from southern california to northern cali. My doctor wanted to cancel my husband's orders , do emergency surgery and start hyperbaric chamber treatments. He looked at my husband and said if it were "you" Id put you on no duty for ATLEAST 6 months...

Anyhow,we had already cancelled our lease, orders were in progress. So, we called up to Travis Airforce base to see if there was a doctor that could handle this. He was available, hyperbaric chamber was available....it just meant a 2 hour drive each way everyday for 3-6 months.....

I had to wait 3 weeks during the move time before I could get into see him. What was strange was the pain started to subside and by the time I got into see my new doctor the hole I had, had healed. I don't think he believed me. He said osteoradionecrosis doesn't just heal on it's own...

Sorry, I have to say he was wrong...because it did. So, to answer you Debbie, nothing medically was done for me. With time, it managed to heal on it's own.

Hi Laura,

I was just curious where your inital tumor was located. The reason I ask is that my mom has a mucoepidermoid carcinoma in the minor salivary gland as well. You said they changed your diagnosis but there are not many people here with minor salivary gland cancer. Also, I was under the impression that this cancer couldn't spread to the roof of the mouth. I'm so confused.

Denise

Hi Denise,

I discovered my tumor directly behind my right lower wisdom tooth. My gums felt a little irritated after having a breath mint so while brushing, I looked really good and found that ugly bump behind my tooth. I thought maybe I had an infected tooth or something, so went into my dentist right away.

The dentist referred me to an oral surgeon and wanted me seen immediately. The oral surgeon, lacking a bedside manner told me point blank it was a tumor, would be major surgery if it was cancer and minor surgery if it was not. Two days later I had my wisdom tooth pulled and biopsy done. I waited for two weeks in complete panic...to go in and find out the biopsy was lost! So, I had to have it rebiopsied (this time done by needle biopsy) and got results the following day of an early grade mucoepidermoid carcinoma of small salivary gland.

Because I had to be followed by a health care provider rather than an oral surgeon, I had to be reffered into Naval Medical center Balboa. There I was followed by the head and neck specialist. I had a ct, and pet scan which showed it hadn't spread and didn't have cancer anywhere else.

My surgeon removed the tumor and took frozen sections all around the tumor and some from my jaw bone. All came back clear of cancer with the exception of the tumor. They had the tumor sent to Maryland for pathology and I guess after some argument among the tumor board they decided it was adenocarcinoma of the small salivary gland.

I then the lab that had the original biopsy apparently had found it and tested it. It came back mucoidepidermal carcinoma again... SO, Im not really sure which lab is correct. The head and neck specialist said it doesn't really matter. They pretty much act the same and are treated the same no matter what. And that pathologists could argue the point on both for hours...LOL. SO what should I call it? Cancer...no matter what an ugly word.

I was told that my tumor was pretty much contained with the exception of nerve tissue they found inside of it. My radiologist had only seen my type of cancer 4 times in his career and the first time he hadn't seen it spread and caught early. I was told that if the cancer came back it would probably come back in the exact same spot. Which makes me hopeful that this lesion was caused from a reaction to the medication and me picking at it. Ive had it for atleast six months and is unchanged since the swelling went down. Oh, Id also like to add that my original doctor never scoped down my nose & throat for my salivary gland cancer after the initial visit. He said there was no need to. This new doctor does. My mouth gets sores in it with the slightest things now. Radiation does wonders!

Thanks Laura, When you say small salivary gland, do you mean minor or is small something else. Is it a part of the major salivary gland? I have never heard of that before. My moms dr. felt her cancer was contained too. She had surgery about a month ago but the pathologist was not happy with the margins and she is going again for surgery tomorrow to remove more. My moms dr never even did a pet scan or an mri. (which my mom was thrilled with because she is clostrophobic. (sp?) He is convinced that it is contained in this area. Also, he was against doing radiation. So may people have told me she should go for a second opinion but we are really happy with the dr and have to just trust that he is doing the right thing.

It is ashame you can't see your original doctor. My mom and I laugh. The dr could say just about anything and we would be like "ok, thanks, that sounds great". He is just so nice and his confidence in the situation has really put us at ease.

Sorry Denise. I meant minor salivary gland! Yes,I probably miss that most about my doctor. He put my mind at ease and answered any and all questions I had. The doctor I have now is in and out of the room as fast as he can be, and refuses to provide me with answers to what steps we will take next if this is cancer again. I understand him not going into details but keeping me in the dark I think frightens me more. I research things and look into things too much on my own and tend to scare myself silly. Anyhow, good luck to you and your mom on her surgery tomorrow.