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15 years after parotid cancer
As a female at the age of 60, in November of 2010 I was diagnosed with parotid (salivary gland) cancer. In December I underwent surgery at Johns Hopkins. I was found to have "primary site poorly differentiated squamous cell carcinoma of the left parotid gland" but after 9 hours of surgery to remove the parotid gland, a neck dissection and removal of 17 lymph nodes was found clean of cancer. I also had tissue remove from my leg to implant where the gland was removed. Several months after my radiation ended, the site did not shrink as much as expected so I underwent a "debulking" surgery to remove some of the tissue. I underwent proton radiation therapy at the Hampton University Proton Therapy Institute in Hampton, VA in 2011. I declined chemotherapy. Since then I have experienced numerous issues. I have partial paralysis of my lower lip and numbness on the left side of my face and ear but I knew that would potentially happen from surgery. I also suffer from Frey's Syndrome where nerve endings severed in surgery reconnect by crossing with different types of nerves. When I eat and should be salivating, I drip sweat from below my left ear. I chose Proton Therapy radiation because it would only effect 1/2 of my face. Each year seems to bring more trauma. I have xerostomia, lack of saliva. In 15 years I have not slept through the night without waking numerous times to drink water. During the day, sometimes my lips stick to my teeth. I have lost 5 teeth and 2 more are on their way out, falling like dominos. After 5 years of tongue and mouth ulcerations I underwent hyperbaric chamber therapy which made a major improvement, but not completely. I now have been diagnosed with an "inflamed ulcer with bizarre and mitotically-active stomal cells suggestive of post radiation therapy related atypia." There was an ulcer on my tongue which over 15 years never fully healed. I also have difficulty swallowing food sometimes with food getting stuck at the back of my throat and having to hack it up like a cat's furball. The skin on the left side of my face developed discolored stippling due to radiation damage 2 years ago. I have tinnitus in my left ear. My eustachian tube is atrophied so it does not drain so I have a tube in that ear. Generally that means my this ear leaks at night, so I have to put tissue in it to absorb the moisture. Because the cilia is also dead I cannot move ear wax and must have it removed by my ENT every 2 months. My left ear is shrinking and no longer matches my right ear. And the least of my worries is that I will always have to slather sun-block on my face and neck everyday and use a prescription fluoride toothpaste at $12 a tube. About 5 years after radiation I also developed a goiter on the left thyroid gland and had it removed with a "hemi-thyroidectomy." Knowing what I know today, I would never had undergone radiation. I would just have taken my chances. I understand that this a very personal decision and what is acceptable to one person is not acceptable to another. Please, when talking to all of your physicians, demand to know ALL of the potential side-effects and the odds of them happening to you. Don't let them talk you into anything you might not be willing to risk. My quality of life has been much less than expected. Some will say, but you should be thankful you are alive. Again I state, I never would have undergone radiation if I knew this would be the outcome. And I do not know what other horrors await me as time goes on. It seems never ending.
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I forgot to mention above that after radiation the connective tissue in my jaw shrunk so I cannot fully open my mouth. Makes eating some thinks difficult. I often have to cut up a sandwich and eat it with a fork. Just something else to add to my miseries.
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2 ReactionsIt seems you've had a very rough go of it. I'm sorry that you've had to endure all these complications. After joining this group chat, I've come to realize that I'm one of the lucky ones. Sure, after 19 years I've had a lot of the symptoms people describe, the worst being baroreceptor failure, something they never mentioned before I underwent treatment. A few years afterward, I was complaining to a nurse how much they didn't mention, she said I didn't need to worry about that. All I had to do is decide if I wanted to live or die. It seemed harsh, but she had just been through this with her husband and was just putting it bluntly.
They told me I would likely never meet anyone going through this. Things have definitely changed. Since my treatment, I've watched 2 family members and knew of nearly a dozen acquaintances going through the same thing. The worst was a fellow who had to have his tongue and lower jaw removed to survive. He lived a few more years, but it was very difficult for him. As I understand it, death from cancer of the throat is a very unpleasant way to go, not something most of us would choose. For me, I would have missed out on the joy of having 4 grandkids.
The difficulty each of us faces is unique. In my situation, I have to check my attitude on a regular basis when things get rough. I have a 17-year-old granddaughter with severe disabilities, including cerebral palsy, due to an invitro complication. She is bed-ridden and requires 24-7 care. This kid has an infectious humor that wins over everyone, and her smile and laughter can soften the heart of the toughest curmudgeon. When I look at her and the world in which she lives, how am I to tell her I have it tough, or that life isn't worth living. I don't doubt your life has been difficult with all these complications, but I hope you have someone in your life who reminds you that there is still joy to be found.
@pampou : Thank you for sharing the details of all you have been through. When I joined these support groups a month ago, I never thought there would be so much resonance for me as I'm 25 years out from parotid cancer with surgery, radiation. I also live with 4 autoimmune illnesses, and added a 5th just this week. I grew up playing in a creek near what became a Superfund Site with pollution. I was an RN who had to mix chemo drugs in a small workroom. I always had a bad taste in my mouth.
My parotid carcinoma was acinic cell. I went to Stanford Medical Center and had a surgery that, at the time, was only being done in a few places. It involved making a flap like a facelift of my right side, conserving the nerve and my scar is behind my ear then down my neck.
A week after surgery I returned for a follow up visit and was told they had gotten the entire tumor. We drove home 45 minutes, got in the house and the phone rang: No. There was not a clean margin after all. I needed another surgery or radiation treatments. (There were no such thing as photon radiation treatments then) I was 34 years old in 1994.
I was so anxious to go through more surgery, I told my doctor I would have radiation. He said, "You are going to wish you chose surgery," And nothing more!! I thought of this when you wrote, "...demand to know all of the side effects." I made an uninformed choice. I was a chemo nurse and knew nothing about long-term effects of radiation.
I was scared and had been very ill for 3 years. If I'd had any emotional support from the medical team, any understanding...it would have changed the outcome,
That said, my spouse always reminds me: I never had a recurrence. The ongoing side effects of radiation have been difficult but I will never know if surgery would have left me with a recurrence.
I want to acknowledge all that you are going through and tell you: Yes, Frey's syndrome, difficulty swallowing, dry mouth...
OMG! "cat's furball" gave me a good laugh. As I was writing this, my cat had one!!
The price of the toothpaste is worth it. What I was told by my radiation oncologist: the rest of your life you need to use a prescription-strength fluoride mouthwash after breakfast and before bedtime. So, since then I get a paste from my dentist that I use at night. I was really motivated to use fluoride (30 years!! I'm 67 now) because I also have Sjogrens Syndrome which affects the parotid glands! Double trouble. With Sjogrens it is more than a $12/tube of toothpaste; I have spent a ton of $$ on Over the Counter eye drops, lotions, Biotene mouthwash and Biotene gum, mouthspray, gel.
Let's just say, I have not had any trips to Hawaii! But I highly recommend looking at a prescription strength fluoride from your dentist.
My ENT told me recently that "they would never radiate such a large field now," which made me feel awful. I have learned to cope with tinnitus (there's a good support group about that here") that started about 6 years ago. Then I realized I couldn't hear well, my right side has much more hearing loss than the unradiated side. I got hearing aids when I turned 65. They are wonderful! Very little tinnitus now. A lot of it was due to hearing loss.
The old radiation treatments were my entire right side of my face, head and neck. I lost my hair on that side and it has never come back in. As an RN I always told people with chemo their hair would come back . So it was shocking to lose my hair permanently. That turned out to be the lesser of side effects; my muscles and nerves were damaged and over time I have pain and muscle spasms, also changed my cervical spine.
For me, the things I need to do to take care of chronic disabling illness, are all a way of increasing my quality of life. I've had 30 years of practice understanding limitations, finding what gives me hope and joy. I like to say that my illness informs my life, but does not define me.
I think it's really great that you opened up to share your story. I hope there are many more posts to support you. I'm very sorry for all you have been through. Thanks again for sharing your story.
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1 ReactionThanks for all your comments and hugs. I always believe there are so many people worse off than me. Mostly what I wanted to convey is not to enter into any medical procedure without knowing all of the potential side effects. I personally believe in quality of life over quantity as long as one does not have young children at home. I would not have undergone radiation and just taken my chances if I had been bettered informed. I also forget to mention permanent loss of a small area of hair by my left ear and major hearing loss in my left ear that cannot be corrected with a hearing aid. My fluoride toothpaste is prescription. Wish you all well.
kudos ... hear you! I totally believe in quality of life to quantity - since my diagnosis of severe neck fibrosis where I have swallowing problems, speech problems, and having to be 'ok' on my own - I find this is not quality of life, and was told that my swallowing might get to the point where I need to have a feeding tube!! This is not 'living!!' - if one has to have a feeding tube to stay alive!!
But I do my best to maintain my regular physiotherapy as well as doing dysphagia exercises daily!!
It sure is a tough journey - going forward!!
Hi @pampou,
I had 35 rounds (7weeks) of Photon radiation for a total of 70Gy and 3 rounds of cisplatin chemo for tonsil cancer back in 2008 but no surgery and to help with the brutal dry mouth tried ELECTRICAL STIMULATION ACUPUNCTURE in 2015 which was offered at my cancer clinic for head & neck cancer patients. I was tested to get a baseline and retested after 8-10 appts. and had great results. Never needed to go back and to this day 10 yrs. later dry mouth is a non-issue and I don't have to carry a water bottle with me either. I also slept with a bottle of water next to me and got a Humidifier on my end table to make sure there was the most moisture possible in my bedroom to help get some sleep. Hope you will get better.
I did acupuncture but no success. Glad it worked for you.