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I was diagnosed with Thyroid Cancer

Sam_ACN
Posts: 5
Joined: Feb 2003

I am 28 female and went through an operation two weeks ago to remove the whole Thyroid. After the Pathology test I was diagnosed with PAPILLARY CARCINOMA cancer. The doctor was happy that he did the operation and removed the tumor from the left Lobe. Here is the result of the Pathology.
#1 + #2 – LEFT AND RIGHT LOBES OF THYROID (THYROIDECTOMY):
PAPILLARY CARCINOMA, FOLLICULAR VARIANT, LEFT
A) 6 x 4.5 x 2.8 CM
B) CONFINED WITHIN THYROID CAPSULE
C) ABUTTING INKED RESECTION MARGIN
D) 2 LYMPH NODES, LEFT: NEGATIVE FOR NEOPLASIA
REST OF THE GLAND: NO SIGNIFICANT PATHOLOGIC ALTERATION.
NO PARATHYROID IDENTIFIED

I have so many question and I am looking for someone to answer them for me. Your answers are appreciated.

1) Is this Cancer deadly?

2) How often do I need to take the I-131 test?

3) How many times do I need to do blood test?

4) Can I have children? When?

5) Do I have to test my children for Thyroid Cancer?

6) Is this Cancer going to affect my life?

7) Do I have to be away from children when I take the Radioactive Iodine and for how long?

8) What is the Radioactive Iodine doing to my body? Am I going to have side effects from it in the near future or long future?

mkm
Posts: 1
Joined: Feb 2003

I wish you luck. I had my thyroid out almost 2 years ago for the same type of cancer. You should only need the iodine treatment once. I had it twice. You do need to be away from children for a few days. The treatment was not a big deal so don't worry about it. Iodine is supposed to be absorbed by the thyroid only so I was told it won't affect anything else. I already have children but I know of someone who had twins not long after. It is just a long process - I have another follow-up scan next month to my second iodine treatment which really scares me. I was also told that it is one of the few cancers which doesn't put you at a greater risk for other cancers in the future. The knowledge that you had cancer is hard to live with. As time goes by though, you will think of it less although it is never forgotten. Good luck.

jhelms
Posts: 3
Joined: Feb 2003

I was diagnosed in June of 2001 with the same type of cancer. I had one I-131 treatment. Since then I had my yearly scan last summer (2002) and everything was clear. I am 35 years old so the news of having cancer at 33 years old was a huge blow to my reality. I remember the day my doctor told me that I have cancer. All I heard was CANCER and that was it. I could hear her talking after that but nothing else was registering. It was like I was in a tunnel or a dream that I could not come out of. Even though I was reasured that this was very treatable cancer I still feared the worst. I hit the internet and educated myself as much as possible. Sometimes your imagination is worse than the reality. I also had a total thyroidectomy and they also removed 30 lymph nodes because my cancer had spread to some of them. I am now almost two years out and look forward to raising my kids, which are now 4 and 10. Attitude is the best tool you have for fighting this. I had to be everyone's cheerleader while I was sick which actually turned out to be the best thing for me. Everyone that came to see me and my family would all have that same look on their face...."bless her heart she is never going to make it" They would even go in the other room and whisper. I finally got tired of that and told them that the doctors just took out my thyroid not my eardrums and I COULD hear them. ha ha I was constantly making jokes to help everyone and myself though it. I even told my son that when I take my radioactive iodine and he could not be around me for a few days that he could charge all of his friends and I would stand in the front window so they could all see me glow. He thought that was so cool that I may glow in the dark. I didn't but he still doesn't know that. ha ha I am now in charge of our Relay for Life in my town and raise as much money as possible every year for the American Cancer Society. That is my only way I know how to fight back. I will help them find a cure for cancer. Try to make lemonade out of lemons. It will help you get through this. Become a volunteer for the American Cancer Society and turn all of your anger and flustration you feel toward this cancer into a positive outlet. Also try to make some jokes with your friends and family it will help them and you more than you know. If you can't laugh what is the use. Please e-mail me at jhelms@cablelynx.com and we can talk some more. I will be happy to answer as many questions as I can and help you through this hard time in your life. I know how you feel, I really do.

mcg1
Posts: 10
Joined: May 2003

i just read a message you wrote on 2/28/03 and it brought tears of fear, relief and joy to me all at the same time. Thank you for replying to whoever. I'm also very new to the computer. in 10/02 my GP found a single nodule, turned out to be papillary carcinoma. Partial thyroidectomy 3/03 followed by full thyroidectomy 5/14/03 i'm now home, with paralyzed vacal cords, but home! now i guess i wait for iodine radiation treatment. any thoughts, knowledge, tips or suggestions ? please respond I really would like to communicate . Living with cancer is not the new thing for me, i lost my father in'98 to multiple myloma(bone cancer), just being the patient is new to me. Thanks in advance

gacbacker
Posts: 14
Joined: Sep 2002

You have very valid quesitons and fears. I had many of the same myself. Right about this time last April I was where you are right now. I am still here!
To start out, let me break down your pathology report. The numbers are the size of the tumor...that is about the size of the main part of a ticket stub from a concert. That is still not overly huge. It is also great news that it is contained in the capsule....meaning that spreading is highly unlikely. Also, negative lymph nodes is a great thing as well...no spreading.

About the rest of your questions.....
Cancer is cancer...in any shape or form, it can be deadly if not treated properly. You were very smart in having the operation because that is often the only treatment that many need. And since there is no lymph node involvement, that is a great sign that it was caught early. I-131 is not a test...it is radioactive iodine that you ingest in the form of a pill. The thyroid is the only gland or anything in your body that takes up iodine. It basically kills the remaining thyroid. No matter what anyone says, this is not something that you have to do! It is a personal choice that only you can make. I did decide to go ahead and get it done but there are lots of people who don't get it and are just fine. Have you spoken to anyone about this? Are you started on synthroid yet? The frequency of blood tests will depend on how quickly your body regulates your thyroid hormone medicaiton, if they put you on some. For me, it was blood tests every 6 weeks until my synthroid was regulated, about 9 months. With each test, they checked the cancer marker. Since I am now stable, I am going in for a year exam in April and then will have scans every year and monitoring blood work 1-2 times per year, more if I do notfeel well. I am only 22 I am was also concerned about my ability to have children. If you choose to get the I-131 treatment, you can have children it is justadvised not to get pregnant for up to 2 years after the treatment because the I131 could harm a fetus. I asked my gyn and she happens to be one of the best in the state. Thyroid cancer is sometimes genetic or environmental but a lot of times it comes out of nowhere. There is no cancer history in my family. I would then say that you dont have to test your children because thyroid cancer is something that can be caught early with through annual physicals and analysis of possible symptoms. You will need to be away from people, particularily pregnant women, children and elderly if you get the treatment. That is usually for about 2-3 days, depending on the dose of treatment. You can be near them...well near=like 15 feet or more away. I know so much about this treatment so email me back if you have morequestions.
The cancer is going to affect your life in so many ways. You will feel many physical symptoms like being tired or coldbut really,those are the easy todeal with. The hardest ones for me to have dealt with were the emotional and psychological aspects. Just take care of yourself and know that youare not alone. The radioactive iodine is being taken up by your thyroid...basically givingit a toxic dose and making it self destruct. There are no realstudies of long term side effects that I know of. Hopethis helps and let me know if you need anything. You will be ok. I was where you are now. Just trust in God that everything will be ok. He wouldn't have given you this if he didn't think you could handle it.

Sam_ACN
Posts: 5
Joined: Feb 2003

I would like to thank mkm, jhelms and gacbacker for your support and for answering my questions. I started taking my synthroid since I removed my Thyroid. So far, I don't have any side effect from removing the Thyroid and I am healthy. My only problem is the unknown in the future. I will start my Radioactive Iodine end of April. My family history does not have Cancer or Thyroid disease. I will let all of you know when I have my treatment in April and I will keep coming back here to support other members of this network. Thank you again.

kabie123
Posts: 1
Joined: Mar 2003

My father was diagnosed with thyroid cancer at age 49, we were told, don't worry it's one of the slowest growing easiest to treat types of cancer, my father put his wonderful attitude into everything and decided it was no big deal, he had surgery to remove thyroid, had I131 treatment, went back for follow ups. Let me also say there was no Hx of cancer in his family. A short time later he was having cold symptoms and not feeling well and went back in, they did some additional scans and found a lump in his lung, they did a surgery, removed the lump, found that it was metastasized from teh thryoid cancer. The doctors did not believe it, they said that "it never does that". They thought he might not make a year because of the lump coming up so quickly. He had follow up scans and a short time later they found another lump, he had a second surgery where they removed more tumors (multiple) from his lungs. He continued with his attitude good, he would beat this! After surgery they did spot radiation treatments. Not long after he began having headaches and some neurological symptoms, we did more scans he had a tumor in his brain, he opted for surgery, they removed most of the tumor and on pathology reports it was identified as thyroid cancer that had metastisized to his brain. He continued to have more recurrence, and eventually the problem in his lungs grew worse and worse. He did make it almost 5 years after he was told 1 year. Now, I am not telling you this story to bring you down, I just want people with thyroid cancer to be aware, it is not "always" an easy cancer to control, if you feel like something else is going on, check it out, when he first went back after the initial surgery one physician said it couldnt' be connected to the thyroid cancer because it "never metastisized", if you feel somethings wrong question the doctor, if he doesn't find answers, do research, focus on what you're telling him, find new doctors. The second reason for telling this story is my father was the most upbeat man I knew, he always said he never minded birthdays because there was only one alternative! I firmly believe the last 5 years we would never have had without his positive attitude, his will to see his grandkids get older! So no matter what fight for yourself and keep your attitude positive. It can be beaten! Trust your instincts!

DELY
Posts: 8
Joined: May 2004

HI,KABIE 123, WELL I AM VERY SORRY ABOUT YOUR FATHER!AND WELL I WOULD LIKE TO ASK YOU IF YOU COULD PLEASE TELL ME WHAT KIND OF THYRID CANCER YOUR FATHER HAD, WAS IT ANASPLASTIC, PAppillary,meddullary,or follicullar,WELL I WAS ALSO DIAGNOSED WITH THYROID CANCER 6 YEARS AGO AND ALTHOUGH THEY TOOK OUT MY WHOLE THYROID AND DIID RADIATION ON ME TWICE WELL I BARELY FOUND OUT THAT I HAVE IT AGAIN ON MY LIMPHNODES AND WELL I WOULD LIKE TO SEE IF YOUR FATHER HAD THE SAME ONE AS ME!!!! I WOULD REALLY APPRECIATE IT!!
THANKYOU!!

candy51503
Posts: 2
Joined: Mar 2003

I WAS TOLD AT THE TIME WHEN I HAD THYROID CANCER THAT I HAD 6 MONTHS IF I DID NOTHING.I GIVE BLOOD EVERY 3 MONTHS.YES YOU CAN HAVE KIDS, I WAS TOLD THAT I NEVER WOULD I HAVE 3. IT TOOK 2 YEARS FOR THE FIRST ONE.NO I FOUND THAT IT HAS NOT CHANGED MY LIFE, IF ANYTHING IT HAS MADE IT BETTER. AS FAR AS RADIOAACTIVE IODINE YOU HAVE TO STAY AWAY FROM PEOPLE FOR 1 WEEK. THE IODINE I WAS TOLD STAYS IN YOUR BODY FOR THAT WEEK.I HAVE FOUND NO SIDE EFFECTS TO THE IODINE.

elly56
Posts: 2
Joined: Mar 2003

I have been reading all that was sent to your about Thyroid cancer and it really concerns me when I read that you weren't having the I-131 treatment until April. My doctors told me that my cancer was the most agressive and that it could move to the lymph nodes, lungs, and/or brain. Please take heed of the one man who didn't seem to think it was a big deal and everything happened to him. I'm not saying that I'm Ms. dread but I truly believe in a second opion when it comes to my health and although all of my doctors greed with proceedure but one of my doctors did not agree with the time frame. His advise was to do everything asap. I thank God every day for our swiftness in doing the operation and the treatment asap because I truly don't believe I would be here today writing to you if I hadn't. My doctors were very agressive, informtive, stated what my options were. Although every discision was mine and my husbands to make, we knew that the advise my doctors were giving me was sound. I will pray for you like so many prayed for me.

I was living in Germany working for the US Defense Dept. and had my care in a US Army hospital which was very lucky for me because all my doctors were fresh out of their resendencies and serving out the time in the Army to pay back the Army for paying for their education. They were up on all the lastest and hadn't gotten use to hopeless cases.

I have enclosed what I sent out to all my friends and relations after I had the I-131 treatment. I don't know if it is done the same way here in the states, but from what the doctors said it wasn't anything to take lightly.

Where do I start on the saga of scary days, tears, fear, and joy. As most of you know I had been having problems with my Thyroid. I went to a physician assistant out at the Army Air Base because I was just so tired all the time and was having weird little things going on with my body. A problem was detected based on a blood test and thank God Capt. Reynolds, the physician assistant who called me at home late one night back in March, wanted me to have the blood test repeated to make sure that the readings were correct. The blood test came back and my thyroid appeared to be irregular in a odd way so Capt. Reynolds said she wanted to have it checked out by an endocrinologist, this was early April. The first visit to Dr. Iudica, the endocrinologist, was low keyed - more blood work and setting up of a future appointment. The second appointment we were informed that a sonogram was in order so we set that up. Now we were in the latter part of May. The scan showed that there were 5 nodes in the thyroid with the largest be larger than a large chicken egg. This really surprised me because there was no visual distortion to my neck and neither the doctor nor I could "feel" the nodes. Dr. Iudica said she wanted to do a biopsy to see if there was cancer in the nodes. The next week I was back in Dr. Iudica's office and she was saying that since the biopsy was "inconclusive" that the best action to take would be to remove the thyroid and go on thyroid replacement for the rest of my life. While all this was going on I got weaker and weaker developed a hacking caught, couldn't seem to concentrate on anything and walked around like a space cadet most of the time because the thyroid had quit putting out the hormones that the body couldn't do without. I was eating up my sick leave at an alarming rate.
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Another thing going on in our lives at the time was I had paid for us to go on a tour to Spain the week of May 26th and I really didn't want to miss out on the fun -- keep this bit of information for future use. Dr Iudica felt that I could wait until I was back from Spain to schedule a second opinion and the possible of surgery. That night I had a dream that the surgery should not be put off so the next day I asked another endocrinologist, Dr. Curry, to look at all the tests and stuff and see if he agreed with Dr. Iudica. He agreed with the findings but differed on delaying the surgery - he stated that from what he was seeing he felt that the thyroid was pre-cancerous and had to be removed ASAP. Before going to Spain I saw Dr. Waizenegger, the surgeon, about having the thyroid removed. The surgery was scheduled for June 14th and my trip to Spain was put on hold. When I called Enjoy Tours about getting a refund I was told they would refund my tour monies but not Dan's so I reschedule to take a tour to Paris in July.
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June 14th found us leaving the house at 5:00AM in order to be at the Army Hospital at 6:30AM. I went to la la land and my thyroid said bye bye to me. I woke in ICU with a nurse on one side of me and Dan on the other. I had been in surgery for 6 hours. As far as pain from the thyroid location I had a sore throat from the breathing tube but no pain in the throat area. What hurt was my left buttocks - laying in one spot for 6 hours bruised all the muscles and tendons - these are still saying HELLO to me if I sit more than a few minutes. Dan was always there to either rub my butt, read out loud, or just kind of hovered in his special way. I thank God for him everyday. I was able to get up as soon as I felt like moving which was a couple of hours after I returned to the world of the living. I started the thyroid replacement and felt so much better that I didn't want to lay down to nap or sleep at night. Part of this could have been the fact that the bed was a torture machine from the dark ages - hard as a rock and plastic covered so I would sweat as soon as I laid down. The food was horrible so I only drank juice and ate cereal. I was in a room by my self and since the TV only had one station I occupied myself by reading 3 books until they let me go home the following Sunday. I did learn a lesson while in the hospital and that is to make sure you are getting any medicines that you normally take. I thought (dumb me) that the doctor would read my chart and realize that I needed to stay on my meds. for fibromyalgia - Sat. night I had a horrible attack and all the nurse could do was pat my hand and try to calm me down while we waited the 2 hours for the attack to pass. I only had to stay in the hospital until my calcium was being properly regulated by the glands that were disturbed while taking out the thyroid - calcium out to be just fine. Here is something surprising - in the states if you go into the hospital for removal of a hang nail you have to leave the hospital in a wheelchair. Here I was leaving the ICU, tired out quickly, and walking out of the hospital down the longs hallways using my 4 wheeled walker - which I thanked God I had with me. Dan was really upset about this aspect. I took off the following week from work and returned to Dr. Waizenegger office for an appointment on Fri. June 21st. I was not surprised when she said that there are 3 types of cancer that attacks the thyroid and the most aggressive of the 3 was what I had. Tears built up and rolled down my face as I held hands with Dan and asked what the next step was.
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Turns out that the thyroid sits in what is called the thyroid bed and that particles of thyroid tissue were still in the bed and these tissues would carry the cancer cells. These cells had to be killed off ASAP so any possibility of cancer would be dead. The first step was to starve the body of the thyroid hormone. Once the "count" was high enough I would have to take an iodine radiation treatment which would go straight to the lingering thyroid tissues being deprived of the hormone. I stopped taking the thyroid replacement and started getting tired, coughing, lack of concentration, and having problems walking. After a week of going downhill quickly I had some blood taken. If the count became high enough prior to Aug. 1st I could possibly have everything done here in Germany, but it really didn't look good because of the availability of the room where the body scans were done. Having relatives in both Jacksonville and Atlanta made going back to the states not quit as scary as it would have if there had not been anyone. After much discussion we decided to talk to Sam and Jo and they agreed that if I had to go back to the states for treatment that they would be more than happy to make sure I got to doctors and such. With that worry off our minds, Dan and I went to the office and told my team leader, Charlie, and section chief what was going on and the fact that I would probably run out of leave if I had to go to the states for treatment. After I was done and we discussed some options, I asked Charlie if he minded that I address my fellow workers so they could hear this from me and not through the grapevine. Charlie said he thought that was a good idea and he would check on if the Government would fly me to the states for medical treatment, what had to be done to borrow sick leave and get on the leave transfer program.
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Kyle gathered all my co-workers. By this time I was using my walker all the time, the coughing had gotten so bad that there were times I would get dizzy, loosing my voice, and most of the time I was either burning up or freezing because the thyroid controls your felling of hot and cold. I sat on the walker with Dan standing across from me and started telling my co-workers what was happening and what we might have to do. When talking about going to the states for treatment I mentioned that I would run of out of leave and have to get on the leave transfer program. I also mentioned that since I was the primary I would have to give Dan my power of attorney so he could arrange everything to get us packed out for the move back to Atlanta. When I mentioned that Dan would need help and everyone started telling me not to worry that they would all help in anyway they could, I started crying. I had never felt so much love in an office as I had at that moment. After I got back to my desk and Dan had left, people started coming by to say if I needed the leave they would donate anywhere from a day to 2 weeks. Charlotte came to my desk and said that Dan could not stay here while I was in the states, that we were so close that he had to be with me. She suggested that I have someone here at work have power of attorney. I asked her if she would be willing to do that and I also asked Greg. They both said they would do it including selling our old car. I think I cried most of the day because I never knew these people thought so highly of me and would help me in my hour of need. That same afternoon I received a phone call from Dr. Iudica saying the count was high enough to do the treatment. God worked fast on this one!!!!!!!!!!
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By this time I had changed the Paris tour to the weekend of July 12th. Both Dan and I thought the treatment would be a one time shot or something like that - little did we know! I reported to the hospital on Friday July 5th to take the radioactive iodine tables. The 8th I returned to the hospital for the scan - how about 2 1/2 hours to do the scan. It was determined that there were some thyroid cells in the thyroid bed. I was told to go to Dr. Iudica's office and arrange an appointment. I saw Dr. Iudica in the hallway and told her what was happening and she said to come in the next morning and she would admit me. For some reason neither Dan nor I heard the word "admit". The next day figuring that I would be at the hospital all day I took 2 books with me but nothing else which was really better that taking a small suitcase with changes of clothes and such.
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Dan and I were sent to the isolation wing of the hospital and the radiation specialist told me that someone from the lab would be up to give me 2 radiation capsules. I would be in isolation for at least 6 days if not more. I would not be able to leave my room until the radiation level was down to 1.5 or leave the hospital until it was down to 0.5. Dan waited until the guy came with the pills. This guy walks into my room pushing a cart that has a lead box with 2 glass tubes in the top. Each tube was about 10 inches long with a capsule at the bottom. I took the capsules and Dan was told to wait outside. After about 5 minutes the radiation guy, John, comes back and takes a reading with a Geiger counter and the needle goes off the scale. Dan was still in the hallway and thought he couldn't visit me later but was told he could visit but I would have to be in my room and he would have to be leaning against the far hall wall. Too bad they didn't tell him he could only be there for 10 minutes. It really wasn't worth his long drive back down from Klein Winternheim.
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Day 2 of isolation Dan was able to visit me for 15 minutes with me in my room and him against the far hallway wall. That night I had really bad coughing spell causing me to pass out. When I came to on the floor, I realized what had happened, got myself off the floor, and rang for the nurse. The nurse had been in my room earlier that evening so part of her total 15 minutes had already been used up. Anyway she sticks her head in the doorway, assess the damage from a distance, tries to calm me down with soothing words, then says she would be right back. -- Now you will know why I had been giving the day by day narrative. A nurse from up the other end of the hall comes down to asses the damage up close and says he is going to call the doctor to see what she wants since I hit my head really hard. The waiting seemed to go on forever, then finally I hear this voice saying that doctor wants pictures of my head and "they", the team at the other end of the hallway, was trying to figure out how to do this since no one could stay in my presents longer than 15 minutes. Unbeknownst to me I was the topic of discussion as to who could "run" the fastest. I was put in a wheelchair and rolled out into the hallway. This young Army guy starts pushing me as fast as he can run. Now the lab is over a few hallways and on the next floor. We couldn't use the elevator because it is a closed room. It was about 2:00AM so there wasn't any worry about radiation lingering in the hallways and being harmful to others. We had to go down the ramp then down a few more hallways. This young man pushes me into the lab and leaves, checking the time. I was helped onto the table for the scan and then helped back into the wheelchair. Once done, the young man takes off running again down the halls, up the ramp, and down the rest of the halls to my room. As I settle back in my chair he checks his watch and is very relieved that he had a few minutes to spare. Added benefit was after being so hot the "wind" really felt good on my face.
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There were some interesting things/facts and such that went along with this treatment. No one was allowed to touch me. For the first couple of days I was "too hot to handle." I have heard that saying all my life but never knew what it meant - don't tell me it doesn't mean hot with radiation! It was good that I just use reading glasses because my glasses got thrown away before I went home. I had to take 4 to 5 showers a day and had to keep my room hot so I would sweat out the radiation. Every time I took a shower my beautiful hospital gowns and all the lines had to be put in a bag which would be stored for about 6 months and then be treated. I think the 6 months was so they would have enough linens and such to make the treatment cost worthy. Every time I peed I had to pour it into a bottle that was placed in a lead box. The pee bottles would be put in lead containers to be shipped back to the states to be stored as radioactive material for 10,000 years. At no time did John step into my bathroom before I was ready to go home. He said that my pee was a deadly weapon. I suggest that we send it to wipe out the terrorists! Any book or magazines had to be either left in the room for the next patient or thrown in the bag to be burned. I had to get my food tray from outside my room in the "clean" room and place the tray back there after I ate. The John had to take the tray because of the radiation. These were treated for the radiation. Everything on my food try was in plastic or Styrofoam which I had to put in a separate bag. The linen, trash, and biodegradable bags were picked up once a day by John. John got real concerned about the priest that was coming by the room everyday to bring me the sacrament. I mentioned to him that the priest would stand right outside my door and have me at the door on my side. We would say a prayer and such and he would leave the sacrament on a napkin and step out into the hallway. Well, he goes to his boss and the next thing I know the boss is up asking me about it. Guess the priest thought the good Lord would protect him - tan't so. It was arranged that he could stand outside my door but I had to be sitting on the bed or he would have to be out in the hall on the far wall and I could be in my doorway with the door open. Very important thing to remember with radiation - if exposed you don't feel any different! During the whole time I really didn't feel any different.
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The days past based on what Dan and I could do. Day 3 he could sit in the hall and talk as long as he wanted. Day 4 I could get a hug (not a very long one - but a hug). Day 5 we were able to walk out and hold hands as long as I was wearing a latex glove - we went to burger king for a burger. Oh, I had to avoid children and pregnant women. Day 6 we could kiss but no sharing "spit." Day 7 Free - free at last and headed home.
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While I was in isolation I called Enjoy Tours to try to change our tour date since if I went I the tour I would have exposed everyone to radiation. The gal says "Since you have already changed this so many times you will have to pay a fee to change it again." I said, "no way" so we argued for a bit and then I asked her if she was married. She said "no" and I asked if she had someone special and she said, "yes" I said, "If you were sitting in isolation in the hospital would you want that person to go on a trip to worry about you the whole time." I asked to speak to her supervisor. I requested that the supervisor allow our monies to be refunded without penalty because of the circumstances. She said she . After a few days she called Dan and said she would refund the monies. And now you know the rest of the story.
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> This is my second week back at work and everyday is an improvement over yesterday. We are trying to get all our ducks in order to move back home. We will fly back to Atlanta Sept. 23rd and I will report to work on the 25th. I know most of the people on my new team and am looking forward to working with them. It will be good to get back to dealing with contractors that speak English and know how to read. As far as what does the future hold for these wondering Beales we really don't know. Elly

rdjc
Posts: 20
Joined: Apr 2002

Hi Sam,
I have mentioned so many times in other postings that the ACS offers a booklet about your specific cancer. They sent one to me when I was first diagnosed (this booklet was free). Many of the questions you have are answered in a general manner in the book. I cannot tell you how many times I went back to this book for questions I had. It really helped me to be informed, and was the source of many things I knew that my former doctor did not. I called the 800 number and they offered to send the booklet.
I-131 is not so bad, but the psychological part of being treated for CANCER is....I truly wish you the best of luck.

Sam_ACN
Posts: 5
Joined: Feb 2003

Many thanks to all those who answered my questions. Today I went for my Thyroid Update Measurement. The result is 3.2%. Is this too much? On Monday I am going to go for total body scan. I will keep all of you informed.

LAF64's picture
LAF64
Posts: 20
Joined: Apr 2003

I have papillary carcinoma as well diagnosed originally in 1989 and also had a complete thyroidectomy. My doctor at the time did NOT recommend I-131 for treatment and last year 14 years later, the cancer is back in my lymph nodes. Last year I had an I-131 uptake which killed all of the thyroid cancer cells and this year, because we didn't do the treatment earlier, the cancer spread to the lymph nodes. On April 15th I had 34 lymph nodes removed and 11 had papillary carcinoma and the doctors believe they got them all. They will continue to monitor the cancer with various testing etc. Here is what I can tell you:

1. Take the suggestions listed above about being informed. In 1989 I didn't know what to ask, and I should have - although I was only 25 years old.

2. Ask your doctor about a blood test called Thyroglobin which measures the number of thyroid cells in your body. You most likely had this to determine how much I-131 to get.

2. For the I-131 uptake, ask the doctor about Thyrogen. This is a drug that enables you NOT to have to go hypothyroid prior to the uptake - based on your recent surgery you might be ok here.

The I-131 is really no big deal. You drink some radioactive iodine which will be absorbed by any thyroid tissue that is remaining. You will be asked to be on a no-iodine diet. This will help to ensure that the iodine is absorbed into any tissue that might remain.

Ask your doctor, ask your doctor, ask your doctor . . . as many questions as you have until you understand what is happening. For example, ask your doctor if 3.2% is good or bad and what that means.

It was very helpful for me to ask my doctor not only what, but why and what did that mean.

Good luck with your I-131 scan - I will keep checking to see how you are doing.

Sam_ACN
Posts: 5
Joined: Feb 2003

Dear LAF64,

Thank you for your reply and suggestions. I wish you all the best with your treatment. Since I was diagnosed with this cancer I read a lot about it and asked many questions. We are lucky nowadays because we have the Internet. We can find all the information we want as fast as we want. Sometimes you find out more information than you need. I spent many hours and days reading about this cancer and how it is treated. This helped me ask the right questions and know all the steps involved in treating it. Please keep me informed of your situation.

Sam_ACN
Posts: 5
Joined: Feb 2003

My body scan was good. It means that they did not find a lot of Thyroid Cells in my body. Today I started the radioactive iodine treatment and I was told that I could go home. I received 29.9 mci of RAI. This is good news since they did not find a lot of cells in my body and I don't have to sleep in the hospital. My doctor is great and I feel that he is working hard to treat me from this cancer. He is going to do a blood test after six weeks and another body scan after 3 months. So far I don’t have any side effects from the treatment. The only problem is that I have to be away from my husband and children for 2 days.

LAF64's picture
LAF64
Posts: 20
Joined: Apr 2003

I had the same dosage last year so that I could also go home. Although challenging to stay in another room (my cats didn't get that) it worked out fine and I didn't have any side effects at all. Sounds like you are in good hands and on the road to recovery. Keep up on your doctor like you are and you should be disease free in no time. Good luck.

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