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In 2000, I went to see my eye doctor for a routine exam. As he was checking my eyes, he said, “You have a lump in your throat, you should have that looked at!” I thought that was strange as I stared in the mirror and asked friends, “Do you see a lump?” All responses including my own were no. I made an appointment with my family doctor who ordered an ultrasound. Yes, I did have a tiny-itty-bitty 2cm nodule. He told me, “This is really common in women, 50% of women have them. If it was my wife or daughter I wouldn’t worry about it.” So I didn’t.
In 2004, I moved to Arizona and had a well check with my new family practice doctor. I informed her that I have this nodule and was told not to worry about it. She responded saying, “We should have this checked out anyway.”
I saw an ear, nose and throat doctor who biopsied my nodule and we made an appointment for the next week. When I came back he and a med student took me into one of the back rooms and we all sat down. He had a piece of paper in his hand and he started to read it aloud. Amidst my two-year-old giggling and babbling I heard the words “probable cancer.” All I could do was stare at my son who was playing with his toy. Who was going to take care of my son! He needs me. Oh my god, my husband, my mother, my brother, my sister.
It happened all very fast. Within two days I had a total Thyroidectomy, been positively diagnosed with Papillary Thyroid Cancer and then…the next plan was Radioactive Iodine Treatment.
As I sat in my hospital room, my Nuclear Medicine doctor came in with a huge cement block on rolling wheels. He opened it and handed me a tiny pill. He handed it to me and gave me instructions. I swallowed the pill and stayed awake the next twenty four hours drinking 16 ounces of water every hour and sucking on hard candy as I flipped through the hospital television channels. I have to say it was one of the most lonely experiences I have had; from the Biohazard sign on my door to the nurse yelling from afar if I needed anything and her trying to slide my food tray on the floor from the door to my bed. She made it most times.
After that experience I had my body scan. Clear. Next body scan. Clear.
In 2008, my older sister was diagnosed with the same cancer and has gone through the same treatment. She has no medical insurance and is unable to afford routine visits and lab work yet the tests she has had, have shown no signs of cancer. My mother was checked as well and they found benign nodules.
In 2009, I have recurrent visits with my Endocrinologist and lab work every 3 months. I have been negatively affected in many ways - my medication has changed so many times I cannot count. I have a huge scar on my neck and my teeth have suffered as well after the Radioactive treatment. I have gained ten pounds since the first body scan and have been unable to lose it.
I want everyone to know that I have been positively affected in so many more ways. I was able to help my sister go through her treatment without fear. My husband (surgeon) has used my story during lectures to educate others. I joined an online thyroid cancer group and have been able help others go through their experiences, answer basic questions and validate their emotions. My son’s teacher had “neck” surgery and he told her that his mom was okay and that she would be too. I had a co-worker with the same diagnosis and I was able to speak with her prior to her surgery to help alleviate her struggles.
I believe that everything happens for a reason. I am a better person now. I love my family harder, I appreciate small events and welcome the big ones. I feel I can handle anything that is thrown at me and I am not afraid.
Thank you eye doctor, for I forget your name. Thank you Dr. Ayubi-Moak for having my nodule re-checked. Thank you Dr. Rizzo my ENT who only removed my thyroid yet left my parathyroid glands safe. Thank you Dr. Sidaris for your kindness and for not being scared of my biohazard status. Thank you Dr. Koth, my husband, for taking care of me and our children.
Add a Comment9 Comments
David,
WOW! What a great and inspiring story. Thank you for sharing such an awe inspiring journey. As a US citizen, we are often ridiculed for our medical system and your story goes to show that even in a Country where health care is free, there are still issues.
I wish you the best in recovery and your journey of life. Please feel free to share other stories with us as this is not only a website for women but a way to learn more about cancer, diseases and health in general. Thank you for being an inspiration to us all.
October 9, 2010 - 9:27amThis Comment
I'm a 45 year old guy, not only women get it :-0) total thyroidectomy
I was diagnosed whist staying in France in October aged 44 and was told that it needed to be removed immediately by that first week in November due to it increasing in size approx. and they wanted to book me in. No money said I needed to be treated in my own country, so I went back to England to see my GP (1 week wait for an appointment) and despite no-one is supposed to wait longer than 3 months after being diagnosed with it, I had to wait yet another 2 months just to see an eyes, ears and nose specialist/ surgeon. He then put me on another 4 months waiting list and said "not to worry because he had known two people wait 11months and still survive" What a thoughtful chap. LOL. but if i was willing to pay him him top price he could do it privately in two months.
I borrowed some money and went back to stay with some family in France and simply put my name on the normal waitng list the same as any other French citizen. Everything was done and dusted in 5 weeks ( I had to pay the full fee but it was only a little over half what the UK surgeon wanted privately.
Surgery was suposed to take 30 minutes and ended up as 4 hours due to it increasing so much in size and spreading. Thankyou for that English NHS system.
6 months before this happened to me, a friend of friend died in Thailand of cancer because she couldn't afford treatment. I told it as a terrible story and said how forutnate I was to be a UK citizen I praised the UK and it's free medical treatment especially for cancer. LOL but when I needed it....haha..
Anyway I read two books and throughly enjoyed the peace and quiet after surgery in france. The iodine ablation when you are quarantined in a lead lined room for a few days ( depends on dosage and I went back to the UK for that ...only had to wait another 10 months:-p) ) was different but again very peaceful. It is amazing how it works though. I didn't get the burning sensation from when it found the remants until the next day. It attacks only thyroid remants or where it has spread too.( it's all very clever).
The only worry about the whole thing was I didn't know ( I wasn't given a biopsy as apparently it was clear it was cancer) was if it was papillary cancer or Anaplastic carcinoma (due to the speed of the growth) which meant I would die for sure very very much more quickly. Anyway all good in the end it was papillary.
BTW After the Operation and hormone replacement I lost my memory for quite a while. I had a 1-2 second memory on some things too.
EG.
The password to turn on My computer (which was my name) would take 5 attempts to get in each time. I would look at on on paper, start to type and then blank and repeat 4 more times on average.
I now understand how difficult it must be to be a women with regular hormone inbalances. ( some men clearly get them too) From a man never having a doubt on anything I started to doubt and question everything and I suppose I really couldn't trust my own judgement sometimes if it meant using memories. Terrible place to be but enlightening in a way of only leaving the moment. I also found out what it was like to have every emotion firing at the same time. Also I had no idea what a controlled person i had been all my life. You know when your male hormones all fire at once, you can be one scary, powerful creature. I had to lock myself away in case someone made me angry, I have never lost my temper before so the outcome may have been very scary indeed) Fortunately I work from home.
For a manly man ( as i consider myself but a gentle) I would stand in a cue in shop for example and suddenly have an uncontrollable urge to burst in to tears ( it would last max. 5 seconds then disappear) weird eh? I also had the opposite emotional moments with rage and there is no information like this at all that this may happen when you take levothtyrox.
Anyway recently I self re-adjusted my dosage to fit how I felt and reduced it another 25% down to 100mg ( they put me on 150mg then 125 then 200 before, boy that was a roller coaster of emotions).
It took about 3-5 weeks for the change to occur.
20months later and I am back to normal. Phew.....
It was still good to experience all those new emotions at all different times but good to have a phsychological balance that i am more familiar with and more importantly my memory is back. I can now remember all passwords, (I use about 10 for different things) and my recall is back, as in, I can now remember what happened the day or night before. I have to admit it was fun to for a while though.
I thought it was about time I shared this info. as it may help someone feel that they haven't lost their mind. It was the result of surgery and hormones and there is no shared information that this can happen.
I can almost guarantee that many many of the people in prison are there due to a flurry of emotions in the wrong place at the wrong time due their having an hormone imbalance ( poor people and so unfair when a simple pill may have prevented it).
100% YOU ARE GOING TO DIE So live you life to the full and don't let it just pass you by. Ultimately it is really is up to you. I spend my life in 4-5 different countries a year now and do whatever I want to do, but have always tried to do after discovering before ( and before cancer) that I was I was trying to live my life through someone else's thinking that I was doing all the giving ( what nonsense).
Have a good life while you have it.
All the best,
David
October 9, 2010 - 8:45amThis Comment
Okay, now go figure on this one! Diagnosed with thyroid cancer 5 years ago. Thyroid removed, 2 I-131 treatments have been done and my doctor just diagnosed me with papillary cancer again! My biopsy on a nodule on the left of my neck is cancer. To top it all off, my insurance will not cover me because of a pre-existing condition. I'm just about ready to scream. How much of this can go wrong? I'm looking for financial help but my husband makes a middle of the field income and I'm unemployed.
I guess that once the thyroid is removed, radiation is completed, does not mean that you are cured. Just keep checking every lump and bump!
Renee
May 10, 2009 - 5:48pmThis Comment
What a wonderful story, and with such good outcomes all the way around. It's so good to be able to experience a story like this from beginning to end -- we feel your fear for your son when you first heard the word cancer, just like we feel your sense now that everything is for a reason and that life is better now than before. Those are powerful experiences and I'm really glad that you shared them.
And Hurricane Laurie, being an older sister myself, I can imagine how much easier your path was because of her experience. Women are amazing.
April 24, 2009 - 3:33pmThis Comment
Kudos to you, my beloved younger sister! Reading (and re-living) your story confirms that sharing is key to better understanding what we, as thyroid cancer diagnosees/survivors, are up against. While I am sorry that you got this cancer, I am truly grateful that I had you to talk to about what to expect from surgery to treatment to recovery. I was not afraid or nervous prior to my own surgery and treatment. Because we both had the same cancer, our mother decided to get an ultrasound. Thank God we are all okay and cancer free. I love you.
April 21, 2009 - 11:18amThis Comment
please i need you advice with this
and if surgeon will help and it will be safe please advice
D IAGNOSIS
April 16, 2009 - 7:35amSmears show clusters and papillae of enlarged hyperchromatic cells with pseudoinclusions and nuclear grooves consistent with
Papillary thyroid carcinoma
This Comment
Thank you for sharing your story. I just had a thyroidectomy and I'm reading up about papillary cancer more as my pathology came back stage III since it had broken out of the thyroid capsule. I can't help but imagine where in my body microscopic pieces of the bastard cancer are and if they are setting up shop in my brain. My biggest question today, will the radioactive iodine finds cells even in my brain? I haven't met with the nuclear medicine specialist yet.
I am having confidence in my doctors though I feel that my own observations about my condition have fallen on deaf ears. Before surgery I shared that I had neck involvement and that my lymph activity had gone bonkers since my FNA biopsy, I was treated like I had a healthy imagination. My surgeon found that the tumor had grown up against muscle tissue in my neck and was a lengthier extraction procedure than he thought it would be. I am glad he took his time to get it all. We'll see what he tells me tomorrow at my 1 week follow up appointment.
March 24, 2009 - 11:12amThis Comment
I seem to being going down the same path as you are. I was diagnosed with papillary thyroid cancer and Nov 30 had my entire thyroid removed along with eight lymph nodes with two of them coming back positive. My doc also extended into the muscle to retrieve more cancer cells. I am worried that cancer has gone somewhere else in my body and they just haven't found it yet. I take my radioactive iodine pill on Dec 30 and so I am already on the low iodine diet for it. I am also celiac and was also diagnosed with Hashimotos Disease when they found my nodules. Too much going on at once to digest it all. I am worried they might tell me I am now stage four. I have gone from two to three and after my scan, who knows? I am not trying to borrow trouble, I just keep hearing my endo doc say that she believes the cancer has been there a while. Everyone needs to be there OWN ADVOCATE for their own BODY! I had all the symptoms but also going through menopause and blamed my weight gain, my dry skin, my fatigue, and memory problems all on menopause. When in fact, it was HAshimotos. In finding that earlier, they may have found my cancer earlier. I know, woulda, shoulda, coulda, but I just want to let everyone know to listen to your bodies. Pay attention to symptoms. Blood tests aren't always the answer. Go further if you need to. If your doctor, doesn't think it is necessary, ask him if he is paying the bill or you.
Have you had your RAI treatment yet? How was it? Successful in zapping everything? I too, am afraid something might not get zapped. I hate that I am the one responsible for making sure I eat foods with low iodine in them. I have read several different low iodine diets and information that contradicts what each other says. Rice? Yes or no? With me being celiac, I can have rice but no pasta. On this diet, I can't have rice or rice flour, No baking any Christmas goodies this year.
I am interested in how you felt during the treatment days in isolation.
I have been told I will feel like I had the flu. How did you react?
And how are you doing know? Are you clear of cancer? I sure hope so. Prayers coming your way.
Cindy in Williamsburg VA
December 17, 2010 - 11:54amThis Comment
Thanks for listening to my story. I too felt as if some of my observations were not heard at times-and I still do. I pray all went well at your appointment.
April 7, 2009 - 2:57pmThis Comment