Hi Everyone!

I am new to this site. On 10/28/03 I just received the devastating news that I have squamous cell carcinoma (SCC). They are calling it a primary alveolar carcinoma because it started on the lingual surface of my mandibular molars on my right hard palate. The cancer infiltrated into my periodontal structures through my bone, and into my right sinus.

Surgery has been presented to me as my best hope. At this point they are not recommending radiation or chemo. They are planning to perform a transoral maxillectomy with split thickness skin graft. They will take skin from my thigh to line the sinus cavity. This surgery will involve losing my entire right maxilla. In essence, I am going to lose all the teeth on the upper right side and will have no hard palate there at all anymore. As such, they told me that I must rely on a prosthetic device
called an obturator to live. I will not be able to speak, eat, or swallow at all without it. (Without it I understand that things will come up through my nose). The device will have dentures on the right side purely for cosmetic reasons. I will only be able to eat on the left side. I am very worried that I will not be able to get used to the prosthesis.

Also, I am a music teacher, and a choir director. I am frightened about the prospect of not being able to sing again. However, the most important thing to me is to survive. But I do have worries about coping with this device in my mouth both night and day.

Does anyone use a device like this that I could talk to? I am having surgery soon and am frightened that I will not be able to live with this device. Being able to connect with someone who has used something similar would be valuable to me. I would be interested in what your experiences are.

Thank you for your help and support,

Dear Canary, welcome.

I don't have any experience with the location of your cancer, but I will wonder outloud that you would do well to consult with a radiation oncologist. SCC sometimes has a nasty reputation for coming back (really it was never completely gone) after surgery only treatments. Radiation has a good track record for mopping up stray cancer cells. It is not a fun procedure but the alternative stinks as well.

take care

P.S. singing is theraputic.

Welcome. First, while I am sorry to hear that your have joined our band of brothers and sisters, I wish you to know that the success rates for what you have been diagnosed with are very high. Second, that obturators ,which are essentially partial plastic dentures with a little plastic plug on the under (tissue) side that fits into the defect left by the surgery, are a very common and very successful prosthesis, that require little time to get used to. They are more widely know for their use in children with cleft palates, but the situation is essentially the same for you

Dear Mark and Brian,

Thank you for your warm welcome and for both of your messages. In reference to Mark's message, I have consulted with a radiation oncologist. Because their assessment of my disease staging is T2N0M0 at this point, their recommendation is a single treatment modality. Since there are considerable difficulties with radiation when bone is involved (osteonecrosis, osteomyelitis, etc.), surgery was recommended. Radiation (IMRT) would be added only if they were unable to obtain clear/wide margins or if there is any evidence of lymph node involvement. Radiation will cause additional problems with the prosthesis, so I really hope that I will not require it. As far as the surgery is concerned, they are not recommending a selective neck dissection to rule out micromets at this point. (Of course they will be monitoring me VERY closely every three months).

I also wanted to thank Brian for his words of encouragement. I feel very fortunate that the success rates for what I have been diagnosed with are high. My maxillofacial prosthodontist has also informed me that people don't seem to have too much difficulty adapting to the obturator. However, I am concerned because I have never worn dentures or even braces before. I have only had one (bad) experience with a denture in my mouth. After the excisional biopsy from which I was diagnosed, I was fitted with a surgical splint and had to go to the ER the next day to have it removed because I felt like I was choking! It was awful. I know I will HAVE to get used to this obturator because I will not be able to live without it, and people do what they HAVE to do to live. But, I still am very concerned about what to expect.

There are many resources for people diagnosed with common cancers such as breast cancer, and MANY survivors you can talk to who can tell you what it is like to live with a post-mastectomy prosthesis. However, when you have a less common cancer such as this, it becomes much more difficult to connect with someone who has shared a similar experience. Also, HIPA (privacy) laws, while not without their benefit, do prevent my prosthodontist from being able to facilitate a meeting between me and another patient. It would be SO valuable for me to be able to connect with someone who uses an obturator to fill a maxillary defect, so I can have an idea of what day to day life is like with this device. If anyone has any suggestions on how I could do this, I would really appreciate your suggestions.

Thank you for your help and support,

Canary,

I think we all have run into the privacy laws, but I believe a way around it is for the doctor or his nurse (if they will take the time) to contact an ex patient or two and have that patient call you? I know it can't be done the other way around, but I would check on the reverse contact situation.

Good luck and from my husband (who just got full dentures upper and lower) and myself that just got large partials upper and lower. (Yes we did buy the doctor's beach house)
Believe me you can and will adjust. The thoughts are worse than the actual.
Dinah

Hi
I had surgery the end of Aug that is very similar to yours and my surgeon put in the obturator in surgery. It was extremely easy to adjust to. I will get started on a permanent plate after the first of the year. The other thing is that NO ONE can tell I am wearing it. Please email me privately if you have more questions, I would be more than happy to answer them.([email protected])
Cathy

I would not suggest that I know any where near as much as your doctors, but I have talked with thousands of oral cancer patients at this point and watched their progress or demise. If it were me, I would be much more comfortable with an IMRT addition to the treatment. Studies show that more than 20% of stage one and two oral cancers have occult metastasis to the cervical nodes of the neck. That means that right now, no scanning technology that we have available, and no doctor feeling or looking at you can tell if you are one of those 20+%. Going through all this again a year from now is not something that you want to be doing. And recurrences can be difficult to deal with. Please be sure that your doctors and you discuss this until you are completely comfortable with the whole treatment plan. There are few chances to make another, different decision mid stream. Make the most informed one you can right now. We all wish you the best possible outcome from all this.

I'm new here, just found this forum. My husband has an obdurator and I remember when then first told us that he would need a prosthetic device - it terrified us. Then we saw samples and realized how benign it actually was (amazing what the mind can create as its own reality).

To see more visit our website, http://www.hncancer.com and follow the links to Our Journey. I have pictures of his prosthetic device. He had his soft palate removed, his tumor was on the uvula. He also had part of his left tonsil removed and a comprehensive left radical neck dissection followed by radiation.

He couldn't talk initially after his surgery due to the trach but once they removed that pushed him a bit, he found he could talk but sounded like someone with a cleft palate (which in effect is what he now has).

He got his temporary device first, they needed the swelling to go down to be assured of a good fit before fitting him with his permanent device. He is now almost 2.5 yrs out from surgery and hasn't had to have any adjustments made.

Yes, without it he will reflux fluids up his nose. He has discovered that my holding his nose and being very careful he can sometimes at least take a swig of water without it. Initially, while waiting for the first device he found using a straw helped as it enabled him to keep his head pointed downward.

He does have some false teeth with his but it sounds like the difference is you losing part of the hard palate and that affecting your eating. That said, Mike had radiation and that in itself has impacted his eating. He still uses Boost as his main source nutrition supplemented by cereal, oatmeal and other breakfast foods.

Feel free to email us with any questions, we're glad to help!

Hi, I think maybe my mum can help you with this as she had her upper right jaw removed and roof of her mouth, but here in the Uk they took skull matter from her head to seal the gap between nose and mouth and this was very successful and she now wears a plate, which is like a very thick false denture, to fill the gap where her jaw once was. Whilst it wasnt the nicest of operations, she recovered quite quickly, her scars have healed, she is coping with the large denture and whilst it isnt the nicest thing to go through, after all she did have cancer, you wouldnt know she has had the op and looks no different to anyone else with dentures. She has made a good recovery and has quality of life. I wish you well and if you would like my mother to answer any of your questions, contact me privately and I will put the questions to her, best wishes su