judyquillen's Journey with Thyroid Cancer

Patient: Thyroid Cancer

Patient Info: Living with cancer as a chronic illness (undergoing adjuvant therapy), Diagnosed: over 7 years ago, Female, Age: 62, Stage III

  1. 1
    about 4 years ago
    judyquillen's Avatar

    Internal radiation


    I have stage III papillary thyroid cancer that spread into my nect muscle and lymph node on the right side. The right side of my thryroid was full of cancer. I had two (150 mCg) of radioactive iodine after 6 weeks of surgery and no thyroid hormone treatment and following a low iodine diet (which you cannot eat any processed foods SeeThyCare.org for more info). After a hour and a half of the radiologist reading papers about the importance of me not being near any people or smal animals (especially small chilren and pregnant women) I sign and initialled the "promise to go into isolation) for nine days. I have to use my in-law summer home and had to bring my own sheets/blankets and pillow as well as food. i had to use paper plates and silverware that had to be put in a double bagged garbage can. I have to flush the toilet three times each time i used the bathroom and wash my hands for 1-2 mins each time. I had to shower several times to help get the radiation out of my body and drink an 8 oz bottle of water every hour as well as suck on sour candy to keep my salavia glands working. I was extremely sick the second and third days and could not get up. I slept most of the time, sweeting and had neausea and a severe headache. By the third day I could get up but was so tired i mostly laid on the couch and rested. I only had Direct TV because i brought the box and used their dish. No internet. Cell phone which I went over my minutes from loving friends and family calling to see how I was doing. On the eighth day i had to follow the regimine of having a colonospy drink ucky drink and clean out my bowels. Then I had to drive the hour and a half to the hospital to have my whole body scan at 7:00 am so as not to be near anyone. Oh, and the radioaligest had to escort me from the hospital and each time a young child/old person or pregenant woman was in the hall we had to duck into a room until they passed. It seem so rediculuse and science fiction! I had a rash before the radiation that no one could explain (that is why I went to my doctor and once my TSH came back so high they forgot about the rash when they found the cancer). The rash spread and itched so bad but i was told not to throw up, pee on myself or bleed on anything thing as they would become radioactive and have to be thrown away!. The WBS showed uptake in my throat and in my chest. So nine months later i took another radioactive pill and had 5 days in islolation in my sister's basement when she put food on the first step and i would retrieve it. I felt like a prisionor. No windows for daylight and the rash had spread all over my body (oh and I had to do the no iodine diet for the six weeks before again!). It was so painful that showering made the open sores sting and had to pat my self dry then use a custom made lotion ($160.00 for 3 oz) on the sores that my dermotologist gave me (God bless that man he was the only doctor that really cared!) that would sting and mix in with my blood. i had to throw away the sheets and pillow afterwards because of the blood and radioactive). I lost my taste buds and became suicidal afterwards and my doctor admitted me to a mental hospital for 12 days. I did not want to live like that anymore if this was the treatment I had to endure it was not worth it! My Dermotologist put me in a UVA/B twice a week (and did not charge me since Aetna refused to pay for the treatment) and I went to an Oncologist. They worked together as my blood work came back with abnormal T-cells and I was tested for Leukemia, had a bone marrow test and tons of biopsies that never found and T-cells. I found out they were looking for cuteaneous T-cell Lemphoma. I switched endo doctors and now go to Emory Clinic. I had an ultrasound on my neck which showed enlarged lymph nodes that they did biopsies on looking for both cancers. Luckily it came back negative. I am on 150 mg of Synthroid a day and still have days when I am exhusted. I lost over 30 pounds during the time after my first treament and had terrible night sweats where my bed was like someone threw water on me! The rash is under control now (just two or three small spots at a time anywhere on my body-right now I have one on my face, on my right back leg and on my scalp). I am afraid to have any more radioactive iodine and would rather just let the cancer take it's course than have to go through coming off my thyroid pills, following the low iodine diet and being in isolation. Surely there has to be a better way to kill thyroid cancer! Oh and my twin sister and and older sister have also been diagnosed with thyroid caner and had the same treatments only their doctors gave them two shots and they only had three days of isolation. My 81 year old mother is have an ultasould on her neck as I write this since we all go to the same oncologyist. All three of them and one older sister who passed away last June for complictions of breast cancer see him too. That is my Mother (two lumpectomies and 36 spot radiation treatments), my older sister I, who had a lumpectomy and radiation for breast cancer and had a 5 cm papillary thyroid cancer stage iv as it spred to her leg) my older sister S. who bravely fought breast cancer with a masctomy and four rounds of chemo before she died on June 12th and my identical twin sister who had in sit su breast cancer had just a lumpectomy but later found her thyroid caner stage II (2 cm encapsolated tumor on the back of her throat growing to her spine). So the last six years my family and I have been through alot. Six girls, three with thyroid cancer and three with breast cancer (that is estrogen fed and tested negative for the BRCA 1 and 2 gene. Now Mom who went through breast cancer treatments last year is being checked for thyroid cancer. Anyone want to do a study on my family???? Thanks for letting me vent!! And prayers are welcomed!!

    Painless Experience: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree