Julie's Story - Radiation Treatment

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    I was treated at I.U. Medical Center in Indianapolis, Indiana. You may have heard of this facility -- it received quite a bit of publicity after Lance Armstrong (of Tour de France fame) decided to receive treatment there for testicular cancer. My decision to have radiation therapy was not an easy one. My husband and I have 2 children and were in the process of trying to have another child when my 4th recurrence was discovered. It was extremely close to the facial nerve, so the surgeon who did surgery #2 and #3 sent me on to I.U. Medical Center to be seen by the physician who taught him to do this surgery.

    After close examination of an MRI, it was discovered I not only had the tumor that I could feel, but also many additional small tumors in the parotid area that were "intimately related with the facial nerve." There was absolutely no way all these could be extracted without severely damaging the facial nerve. Thus, the recommendation was made that I receive radiation following my 4th surgery.

    My husband and I flew to the Mayo Clinic in Jacksonville, Florida to receive another opinion regarding this recommendation. They agreed, saying it was "very appropriate since conservative surgery with the maximum attempt to preserve the facial nerve function might lead to a situation where residual cells were microscopically present or at least could not be excluded without injury to the facial nerve." It is now believed the surgeon who handled my first surgery back in 1987 must have ruptured the "egg-size" tumor he was removing, thus "spilling" cells into this region. This seems to be the only explanation for so many recurrences.

    Nerve monitors weren't even used back then -- at least not by my surgeon. Like everything else, technology has made this surgery a little less risky to the facial nerve, so I'm not bitter toward the original surgeon. However, the risk of recurrence wasn't even explained to me back then -- I had no idea what the ramifications of this first surgery would be! In 4 surgeries, I have had over a dozen tumors removed.

    I had surgery #4 in September 2000. All of October was spent getting my teeth ready for the "beating" they were going to receive during radiation. I had to get them in the best shape possible. I didn't have to have any pulled, "just" had to get a root canal, a few crowns on teeth that already had childhood fillings. My dentist also made "trays" molded from impressions of my teeth and I filled them with fluoride each night and wore them when I slept. I was supposed to do this all through treatment, but had to stop during the 3rd week because the inside of my mouth was beginning to burn from the radiation and the fluoride sent me through the roof. I also wore these "trays" during my radiation treatments as an extra protection for my mouth -- any fillings in the areas receiving treatment make "hot spots" that burn easier from the radiation.

    Once my teeth were ready, my radiation began November 13 and I received treatments for 5-1/2 weeks, twice each weekday. It was decided 2 treatments each day in lower dosages should be the approach to try to decrease my long-term risks from the radiation. (Damage to teeth, jaw bone, ear, increased scar tissue, risk of secondary cancer, etc.) Since I'm only 35, the risk of leaving these tumors in my body and the risk of the long-term affects of radiation are a big concern. As one of my physician's said, receiving the treatments twice each day, even though the dosages are low, is a real "kick in the pants" because your body is receiving radiation twice and doesn't really recognize whether it's a low or high dosage. So, while the long-term risks decrease, the short-term affects are pretty rough. I wore a "mask" exactly like the one you describe on this sight.

    After the first week of radiation, I lost my sense of taste entirely. This would not return for 4 months, but I consider myself fortunate. There are not guarantees on when this will return and to what degree. I'd say my sense of taste is back about 95% now. After week 2, I began losing the hair that was in the "field of radiation." Since I was strapped down to the table with the mask tilting my head up slightly, the back of my hair from about mid-ear down was in the field. I eventually lost all that hair. As radiation continued, the inside of my throat began to get "burnt" and eating became a real challenge. I was able to handle driving myself to treatments until week 4, at which point my husband had to take time off to be with me and drive me to and from treatments.

    It became necessary for me to stay on pain medication 24 hours, something my doctors insisted I should be doing. Being on strong pain medication and having no sense of taste, not to mention the burns inside my mouth and throat made it difficult to even get liquids down. I survived on "Ensure" and by the end of treatment had lost 25 pounds. (Each time you receive radiation treatments, healthy tissue is damaged and your body immediately starts trying to repair it. Thus, an enormous amount of calories are being used by your body as it works to repair the damage.)

     By the end of the 5-1/2 weeks, the skin on my neck was pretty much "raw meat." I understand everyone reacts differently to radiation -- some burn, some don't. I'm happy to report a year has passed since my treatments and I'm doing fine. Since "blocks" were used to limit damage to my right parotid, I still have some saliva production. While it's not "normal", it's tolerable and has improved greatly since radiation treatments ended. It took several months to get my strength back and to feel like myself again. Although my skin was severely burnt, it was amazing how quickly it repaired itself once treatments were finished. A few bottles of Vitamin E lotion later, my skin in that area isn't too bad. It's freckled a little and I, of course, can notice the imperfections, but for everything that area of my body has been through, it's really not too apparent. I have a great amount of scar tissue, as you can image after 4 surgeries and radiation. But I am so fortunate. I have never experienced Frey's sydrome, and I have absolutely no loss of facial nerve function. After surgery #4, I had temporary paralysis that lasted 3-4 weeks. Each time I've had surgery, I've been told there is a risk to my facial nerve, so I know I'm so fortunate to be able to give my kids a full smile after all the abuse to this area of my body!

    My best advice to anyone reading this is to find an experienced surgeon -- the absolute best you can find -- to remove your tumor. Hopefully, if your first surgery is successful and you have a "clean removal", you will not have to face the decisions I've had to make. I do not regret my decision to have radiation therapy. After 4 surgeries and evidence of more tumors, there really wasn't another option for me. I'm now being seen every 6 months at I.U. Medical Center, and will receive an MRI this summer. This will serve as a baseline for future MRIs. Since this is such a slow growing disease, it will take a while to determine if there are any recurrences after the radiation. Hope I've answered some of your questions.

    June 2003 Update

    Update:  In August 2002, I received an MRI and an FNA was performed on a suspicious area near my scar.  It was confirmed this is a pleomorphic adenoma, but my ENT and radiation oncologist are still in hopes this is a tumor from cells existing prior to radiation and hopefully it has been halted by the radiation and won't progress.  I received another MRI in April 2003 and at this time the tumor has not progressed (still at 1 cm).  I will have another MRI in April 2004 to monitor the tumor for any growth.  Please keep in mind this has been an ongoing, 16 year medical condition and in no way am I encouraging anyone to disregard a tumor and delay surgery.  My circumstances are unusual and apply only to my condition.

    Julie was kind enough to add the following:

    "If you want to add my e-mail address at the end, feel free. I want people to know they can contact me with questions if they would like to. Hopefully there aren't too many out there having to make this difficult decision, but I'm willing to correspond with them if there are."