For the past, almost nine years, I have struggled with dry mouth, swollen ( what I thought were lymph nodes until recently) submandibular salivary glands, pain upon eating certain foods, and some changes in how food tastes.These symptoms started about 7 months after I received a large dose of RAI( radioactive I-131) for my thyroid cancer. Each person is different, but the recommendation for most thyroid cancer patients is to receive a dose of RAI after surgery. The reason for this is that in papillary and/or follicular thyroid cancer, RAI can " seek out and kill" any remaining thyroid cancer cells that have managed to escape the surgeon's knife. According to the information that I received from my doctor, the only two types of cells that take up RAI, are thyroid cells( both cancerous and non-cancerous) and salivary gland cells. According to an article in the American Thyroid Association, " Clinical Thyroidology for the Public, volume 11, issue 5, from May, 2018" while salivary cells will pick up the I-131, they will not store it in the cells like thyroid(cancer) cells will. So the plan is for the RAI to kill any rogue thyroid cancer cells, while leaving the salivary gland cells alone. For some people, like me unfortunately, that was not quite the case.
In this above stated article, dosing RAI patients with selenium (an antioxidant, that can provide some help with side effects from radiation in other cancers) may have promise in protecting the salivary glands from the harmful effects of RAI. Of course, the article goes on to say that more studies need to be conducted before selenium can be proven to be of help in protecting the salivary glands. The article did not state the dosage of selenium that is supposed to be effective. I was not aware of this fact back in 2010, when I received my huge RAI dose. And certainly anyone who is considering using selenium should discuss this with their doctor.
Speaking of huge doses of RAI, in the same publication, Volume 6, issue 5, pages 8 through 9, the American Thyroid Association states that a study of 213 thyroid cancer patients receiving various doses of RAI was conducted. Salivary gland issues seem to be dependent on the dose of the RAI given. Of those patients who received 100 mCi ( millicurie) of the RAI only about 7.8% experienced salivary gland issues. At 150 mCi , that percentage jumped to almost 18%. For the record, my RAI dose was 155 mCi.
Those are some facts. Now what? RAI is a necessary tool for most patients to kill off the rogue thyroid cancer cells, as I stated above. This is an important decision that must be carefully considered by thyroid cancer patients and their doctor. Does one want a recurrence of the thyroid cancer? Of course not. But I think the key here is to use a dose of the RAI that will be effective, and cause as few side effects ( especially salivary gland issues) as possible.
I had an appointment with a ENT head and neck/cancer surgeon this week. This doctor was recommended to me by a person in a salivary gland group. I first went to see my family doctor, and he agreed with me that my neck was swollen ( he thought that it was a lymph gland issue,too). I also have a " lump" in my jaw area. In the past, I have had salivary stones and they have gone away with the self care that I was taught to use. In case you would like to know what I used in the past, it was : warm compresses, drinking sour lemonade as well as lots of water, and when this did not seem to work, I would take some ibuprofen. This time though, the swelling and lump did not go away. For a few months, I have worried that 1) the thyroid cancer had returned in my neck area or 2) I had some sort of salivary gland cancer or 3) I had some other type of cancer. Since I am a two time cancer survivor ( papillary with follicular variant in 2010 and invasive lobular breast cancer in 2015) it was not such a stretch to imagine that I might have something else going on.
The ENT head and neck surgeon did an ultrasound and did not see any " suspicious" looking tumors or whatever but did see " moderate" damage to my submandibular salivary glands. He suggested, and I agreed, that I have a sialendoscopy procedure done to look at the damage, and hopefully clear up some of the blockage. I really, really like this doctor. He is only one of two doctors in my state that do the sialendoscopy without general anesthesia. He will be using lidocaine to numb the areas as he goes along. I will be able to describe the procedure in more detail after I have it done at the end of next month.
As you might guess, it is of the UPMOST importance to choose an ENT/head and neck surgeon who has done this procedure successfully many times. Check, check and recheck reviews of the surgeon whom you want to do this procedure. And I think that it is important that a patient feel comfortable with the surgeon- that he/she will answer any questions that the patient might have. My surgeon told me that as far as " how much this would hurt" this is on the dental procedure pain level. That brings up another issue. My surgeon told me to be sure that I was up to date with my dental cleanings and checkups. Unfortunately, RAI can damage the teeth, due to dry mouth and salivary gland issues.
I am very thankful that, unless something turns up during the sialendoscopy procedure, I do not have a salivary gland tumor. Am I looking forward to the procedure? NO. But I do have confidence in my surgeon, and I am hoping that I will get some relief from my symptoms. According to what I have read, in my case ( RAI induced salivary gland damage), there is anywhere from a 65 to 85% chance of success with this procedure. Results blog next month...
