As I said in my last blog, I was scheduled for a sialendoscopy on February 20th. About a week before this procedure was to occur, the salivary stone passed and my submandibular gland , while still enlarged, returned to almost normal. Let me say that I really like my ENT cancer head and neck surgeon. He has wonderful reviews/credentials, and if I ever have to have salivary gland surgery, he would be my choice- hands down. However, the sialendoscopy is not without risks, even though the risks are small. Possible damage to my facial nerve being probably the most serious, in my opinion. Of course, sometimes the procedure is more beneficial than the risks. Dr. Hackman told me that I could have the procedure done, if I chose to, and it should clear out the stone and perhaps help with the moderate scarring that I have in my salivary glands. This scarring was caused by the RAI, as I pointed out in my last blog. I did not know, until Dr. Hackman informed me, that the salivary gland tissues also gobble up RAI. Breast tissue also takes up a little radioactive Iodine, as well. Of course, the main consumer of the RAI is thyroid/thyroid cancer cells and that is desirable- one wants them dead!
I talked with Dr. Hackman's nurse, and the doctor wants me to come back for a follow up in a year. I feel so relieved that he did not see any cysts or tumors on the ultrasound that he did in the office last month. The RAI can cause cancerous tumors in the salivary glands. That is not the only cause of the cancer, but doses over 150 milicuries, seem to cause more problems. My dose was 155 milicuries.(!)
I will continue with my self care, which includes drinking sour lemonade almost every day, and using warm compresses, massage and finally ibuprofen ( when the pain gets intense) when the stone(s) develop. Salivary gland cancers, or other oral cancers, are serious business. I appreciate good health care and am so thankful to have found an amazing physician. Be proactive- take care of yourself, and watch for early signs of salivary disorders. The first time that I passed a stone, and I have passed many over the past 9 years, I did not know what was happening to me! No one had prepared me for what to be looking for or what might happen.
I will recount my first salivary stone, in the hopes of perhaps preparing others for what might occur. I was at work ( of course). I had been noticing that my upper jaw/ face area had been a little sore that day. Some people that I worked with told me that my jaw was swollen. I actually had a lump or knot on the side of my face. I was hoping that it was a dental problem. I went to see my dentist first thing on Monday ( of course this happened on a weekend!) and after an exam and x-ray, he said that it was not a dental issue, but that he thought it might be a parotid stone. My dentist referred me to another ENT ( not Dr. Hackman) who confirmed the diagnosis. This ENT told me about the sour lemonade, warm compresses,etc, that I still do today when I have a stone form. He forgot to tell me what passing the stone would be like.
There are three types of salivary glands: Parotid, Submandibular, and Sublingual. The submandibular glands are located at the floor of the mouth. The majority of stones are of this type. The Parotid glands are on the inside of the cheeks, and the sublingual glands are under the tongue. The parotid and submandibular stones that I had sort of burst, and my mouth filled up with what seemed like very salty water.(YUCK). The sublingual stones that I have passed look like a grain of rice, and passed under my tongue with gentle pressure on the gland. (BIG YUCK). Relief, when the stone passes, is instantaneous. Compared to a kidney stone( I have had one of those,too), salivary stones are somewhat painful but not nearly as painful as a kidney stone. Sometimes one needs help passing a stone. That is where the sialendoscopy procedure comes in. This procedure can help remove a larger stone, as well as helping to clear out some scar tissue which may be present in the salivary glands. So far, I have not needed to have this procedure done, but I might at some point. I have been having extreme dry mouth, and Dr. Hackman said that the sialendoscopy might help with that. It is very, very important to drink lots and lots of water if one has salivary stone issues.
I hope that the information, as it applies to me, is of some help to others who may be struggling with salivary stones. And for the record, in my case- stage 3, aggressive follicular variant and papillary thyroid cancer, I would have the RAI treatment after surgery again. The only thing that I would try to do differently, would be to discuss the dose with the radiologist . I would have liked to stay around 100 milicuries, if possible. Hindsight is always 20/20 though...
