i have lost control in my life! I feel alone!

sjspeds
sjspeds Member Posts: 21
edited March 2014 in Thyroid Cancer #1
I had my thyroid removed a year ago in Jan. they removed 3 lymph nodes in my neck, so I had to have the radioactive iodine tx. I was in nursing school and scared that I wouldn't make it! Now, I still am in the nursing progam and worried that my cancer will come back. Everyday I am scared to death that I will develop a tumor again and will have to drop out of school! I don't ever want to go through that scarey time again, however I feel like I'm worried everyday that it will come back. I have had a 4 pound ovarian benign tumor in the past that I had to have surgically removed, so I'm always Paranoid that I will get another tumor that isn't treatable! That is my worst fear, and I feel like I have lost all control in my life! I try to stay strong for my husband because he worries so much about me, he hurts too! Will this feeling ever end? Does anyone have any advise???? I have headaches when I wake up and when I go to bed....

Comments

  • cjhtexas
    cjhtexas Member Posts: 1
    #2
    Hi. My wife and I are waiting for test results (gulp), so I just popped on the net to see if I could get some basic education. She is donating a kidney to save the life of a friend. We were supposed to fly to St. Louis this morning for the surgery on Thursday. The hospital called a couple of hours before departure and informed us that she has a nodule that may be cancerous. Wow. Hows that for a new chapter in an already scary ordeal?

    Anyway, I'm so sorry to hear about your health. Please spend at least a minute truly thinking about what I'm about to say, because I think I was supposed to find your posting today. Stay with me - I'm not a kook...

    You feel like you have lost control in your life because you have. In fact, you never had it. God made your body and all the components that make it work. These "parts" are his wonderful crafts, created especially to fulfill a purpose for him. You may fall apart physically, but if you have a relationship with the creator of these amazingly intricate crafts (us), you will have a peace that will, in fact, pass all understanding. My wife and I will pray for your complete physical recovery and that your life will be used as an awesome testimony to the continuing sufficiency and grace provided by Christ. Please reach out to a Christian friend and God will take it from there. Or completely disregard this - your choice. Anyway, you will be personally prayed for each day and I truly believe God will work his plan through your incredibly important and unique life.

    FYI - I don't just go around the internet trying to "save" people who are hurting. In fact, this is the first time I've done anything like this. I just felt compelled to send this message to you.

    Here's a great resource - you'll love this guy (he's my wife's favorite) www.truthforlife.org

    Peace and healing to you, your husband, and your family. "Therefore we do not lose heart. Even though our outward man is perishing, yet the inward man is being renewed day by day". 2 Corinthians 4:16

    OK - now back to what I wanted to find out. Does a "hot" nodule from a scan absolutely exclude cancer, or is a biopsy the only absolute answer?

    Thanks,
  • sjspeds
    sjspeds Member Posts: 21
    #3
    cjhtexas said:

    Hi. My wife and I are waiting for test results (gulp), so I just popped on the net to see if I could get some basic education. She is donating a kidney to save the life of a friend. We were supposed to fly to St. Louis this morning for the surgery on Thursday. The hospital called a couple of hours before departure and informed us that she has a nodule that may be cancerous. Wow. Hows that for a new chapter in an already scary ordeal?

    Anyway, I'm so sorry to hear about your health. Please spend at least a minute truly thinking about what I'm about to say, because I think I was supposed to find your posting today. Stay with me - I'm not a kook...

    You feel like you have lost control in your life because you have. In fact, you never had it. God made your body and all the components that make it work. These "parts" are his wonderful crafts, created especially to fulfill a purpose for him. You may fall apart physically, but if you have a relationship with the creator of these amazingly intricate crafts (us), you will have a peace that will, in fact, pass all understanding. My wife and I will pray for your complete physical recovery and that your life will be used as an awesome testimony to the continuing sufficiency and grace provided by Christ. Please reach out to a Christian friend and God will take it from there. Or completely disregard this - your choice. Anyway, you will be personally prayed for each day and I truly believe God will work his plan through your incredibly important and unique life.

    FYI - I don't just go around the internet trying to "save" people who are hurting. In fact, this is the first time I've done anything like this. I just felt compelled to send this message to you.

    Here's a great resource - you'll love this guy (he's my wife's favorite) www.truthforlife.org

    Peace and healing to you, your husband, and your family. "Therefore we do not lose heart. Even though our outward man is perishing, yet the inward man is being renewed day by day". 2 Corinthians 4:16

    OK - now back to what I wanted to find out. Does a "hot" nodule from a scan absolutely exclude cancer, or is a biopsy the only absolute answer?

    Thanks,

    Thank you for your reply. I know in my heart you are right. I have to put more trust in God, and believe that everything happens for a reason. I feel that every day I have a new challenge to overcome and even though some may feel unfair, I have to believe that everything will work out in God's plan if I trust in him and follow my heart. I think you said everything I needed to hear, even though deep down I already knew that. I am sorry to hear about your wife's dignoses, does she have Papillary Thyroid cancer? That is really something that she went to safe a friends life, but now she is saving her own. What a shocker to you both that must have been. Why haven't they dignosed it yet with an aspirtation biopsy? Is the nodule not close enough to the surface of the neck? If she does have a thyroidectomy, they will remove half of the lobe and send to the lab for a stat cancer test to insure it wasn't a false positive. How big is the nodule? What type of scan were they using when they found the cancer, (CAT)? I will be praying for your wife also, and be here if you have any concerns or questions. I will check out that website that you sent to me. Thanks again for your nice message, that really makes my day.
  • sjspeds
    sjspeds Member Posts: 21
    #4
    cjhtexas said:

    Hi. My wife and I are waiting for test results (gulp), so I just popped on the net to see if I could get some basic education. She is donating a kidney to save the life of a friend. We were supposed to fly to St. Louis this morning for the surgery on Thursday. The hospital called a couple of hours before departure and informed us that she has a nodule that may be cancerous. Wow. Hows that for a new chapter in an already scary ordeal?

    Anyway, I'm so sorry to hear about your health. Please spend at least a minute truly thinking about what I'm about to say, because I think I was supposed to find your posting today. Stay with me - I'm not a kook...

    You feel like you have lost control in your life because you have. In fact, you never had it. God made your body and all the components that make it work. These "parts" are his wonderful crafts, created especially to fulfill a purpose for him. You may fall apart physically, but if you have a relationship with the creator of these amazingly intricate crafts (us), you will have a peace that will, in fact, pass all understanding. My wife and I will pray for your complete physical recovery and that your life will be used as an awesome testimony to the continuing sufficiency and grace provided by Christ. Please reach out to a Christian friend and God will take it from there. Or completely disregard this - your choice. Anyway, you will be personally prayed for each day and I truly believe God will work his plan through your incredibly important and unique life.

    FYI - I don't just go around the internet trying to "save" people who are hurting. In fact, this is the first time I've done anything like this. I just felt compelled to send this message to you.

    Here's a great resource - you'll love this guy (he's my wife's favorite) www.truthforlife.org

    Peace and healing to you, your husband, and your family. "Therefore we do not lose heart. Even though our outward man is perishing, yet the inward man is being renewed day by day". 2 Corinthians 4:16

    OK - now back to what I wanted to find out. Does a "hot" nodule from a scan absolutely exclude cancer, or is a biopsy the only absolute answer?

    Thanks,

    Sorry- I should have read the first line more carefully. You both do not know if it is cancer. I pray that it's benign and that it is nothing serious. I do remember not knowing if it was cancerous or not and not knowing the prognosis, and it was the hardest time. I do understand what you both are going through and it hurts me that it has to be re-lived through someone else. I hope you find out soon, so you do not have to worry anymore about the "what if's"..
  • CindyC
    CindyC Member Posts: 27
    #5
    I have been in your shoes or should I say I am in your shoes. Once you have had Cancer it is always with you. People do not understand that when they have not walked in our shoes. They think that once it's gone it's gone. You have to stay positive and upbeat. You feel much stronger that way. I have had two Radio Active Iodine treatments in four years. Something is still there. Test results were the best this time ever though. I wonder with your headaches if your Synthroid is at the right level. If it is not it affects so many parts of our body and our mood. When I have to go off for a body scan I even get depressed and feel like I have the flu. Maybe you should see if you need a different dose of the Synthroid. Cindy
  • LAF64
    LAF64 Member Posts: 20
    #6
    I had papillary carcinoma diagnosed in 1989 (you can read my personal webpage for details) and had a total thyroidectomy. No follow up at that time. I didn't know any better. It came back last year and I had I131 treatment but blood tests still not looking good.

    Early this year I had a PET scan (recommended by Nuclear Medicine) and they found hot spots in my neck. Neck dissection in April and follow up scan this week and all is clear.

    The net is that you need to take control of your own destiny. Ask questions, understand the disease, and make sure you trust your doctors.

    I am giving you the very short version of what happened here, but by having the best in care, my doctors drove me to get tests that would enable us to track and treat this cancer. You should be talking to you doctor about thyroglobulin which is a blood test that can tell if the cancer is back or not. This gave me peace of mind.

    Let me know if I can help any other way. Good luck.
  • cherrie
    cherrie Member Posts: 38
    #7
    Hi! I was operated in 1988 I was only 18, when I heard the news I had cancer now I am 34 I've had 3 treatments(1989 after my baby was born I was pregnant when they operated the tumor, my second treatment was in 1993 and the last was Feb 2003)
    Last year I had a hysterectomy had cancer but found on time no need for treatment. I will lie if I tell you every time I go for the body scan I don't feel afraid because I do but I can't let the disease control of my mind and my life. My kids are 15 and 10 and it's hard to see mom locked up in a room like I was in Feb but they know that is for my health. They know about it but I try to be very strong and you have to be strong. If you feel like something is not right go to your dr. I don't want you to not go because you are afraid and then realize that if you get worst it's because you didn't go on time. I told my dr that if the small piece of thyroid that they left me is giving me trouble I don't like operations but if it will help I want another operation. I please beg you do not let the disease get control of your life. think always, I'm going to have my life! and always get checked
  • r11658h
    r11658h Member Posts: 4
    #8
    Hi. I just had a total thyroidectomy a few weeks ago and was scared to death. I understand your feelings. Seventeen years ago I had a tumor on my adrenal gland and had it removed. It was benign. When I received this diagnosis I thought for sure that I couldn't beat cancer again and I was right. I am now off of Cytomel and on a strict low iodine diet to prepare for radiation treatments on the 26th of this month. I am petrified of the whole idea and am, like you, always afraid of having more tumors. I can't imagine them finding more cancer any where else in my body and what that would do to my mind. My husband hurts and my daughter also. We are all in agony. I'm trying to always remain in a good frame of mind but it's not easy. Tell me how you are now? Did you gain weight. I have spent my life exercising and trying to look good and now I'm told that I might gain weight and it angers me. Anything you could say would be welcome. Thank you.
  • sjspeds
    sjspeds Member Posts: 21
    #9
    r11658h said:

    Hi. I just had a total thyroidectomy a few weeks ago and was scared to death. I understand your feelings. Seventeen years ago I had a tumor on my adrenal gland and had it removed. It was benign. When I received this diagnosis I thought for sure that I couldn't beat cancer again and I was right. I am now off of Cytomel and on a strict low iodine diet to prepare for radiation treatments on the 26th of this month. I am petrified of the whole idea and am, like you, always afraid of having more tumors. I can't imagine them finding more cancer any where else in my body and what that would do to my mind. My husband hurts and my daughter also. We are all in agony. I'm trying to always remain in a good frame of mind but it's not easy. Tell me how you are now? Did you gain weight. I have spent my life exercising and trying to look good and now I'm told that I might gain weight and it angers me. Anything you could say would be welcome. Thank you.

    Hi, I am sorry to hear about your cancer. I thought the iodine diet was the hardest part about that type of radiation treatment. My endocrine doctor has me hyperthyroid with my meds, I am on levothroid 150mcg right now. My doctor said that it helps suppress the cancer from coming back. When I was hypothyroidism for 2 or 2 and a half wks I didn't gain much wt. because the food that you have to eat is like no calories. On a diet like that you would expect to lose wt. but since you are hypo you don't. So I tried to continue light excercises like floor excersises to keep my stress managed. Are you taking the lowest dose possiable of the iodine radiation? It sounds that you have a family that cares about you, so that's a good support system. How old is your daughter? I am doing better emotionally by hearing other people's cancer stories. Some of the stories makes me look like I got off easy. But no matter what, it is not easy for anyone! I can say for sure I would not know how I would act or what type of decisions I would make unless it was happening to me. Before my cancer, it was easy for me to judge other peoples decisions. I am a student nurse and when I hear of cancer patients that are only in their 3o's-40's with a DNR status, I do not judge their decision. I just wonder what road their life took them on to make that decision. I am still worried almost every day about the what if's, but I try to take care of my health by having hope and staying positive. I was depressed for a couple of months after my surgery, and I thought I would never go back to my normal self again. But, I did. It almost seems it happened over night, because I don't remember waking up one day and saying, "Wow I am myself again!" Oh, ya, I am sure the doctor told you that it might take up to six months to get your thyroid levels balanced right, so hang in there. I hope you have a good doctor, and if not, look around for another one. I don't have any side effects from being hyperthyroidism so this treatment is working great. That might be something to look into with your doctor after your radiation treatment. I am going to my endocrine doctor in March to have another scan to see if I need another treatment of the radioactive stuff. FYI: if they haven't told you about the scan, each pic takes about 10min. and this board looking thing is like 4 inches or so from your face, so that really bothered me during the procedure. I wish they would have offered me a sedative or something, cause it made me anxious and I was crying. It's not enclosed or anything, and you can have your husband in the room with you, cause there's no radiation being put off. I hope your treatment goes well, hang in there! U are probably the strongest family on your block! Let me know how things are going. SJS
  • r11658h
    r11658h Member Posts: 4
    #10
    sjspeds said:

    Hi, I am sorry to hear about your cancer. I thought the iodine diet was the hardest part about that type of radiation treatment. My endocrine doctor has me hyperthyroid with my meds, I am on levothroid 150mcg right now. My doctor said that it helps suppress the cancer from coming back. When I was hypothyroidism for 2 or 2 and a half wks I didn't gain much wt. because the food that you have to eat is like no calories. On a diet like that you would expect to lose wt. but since you are hypo you don't. So I tried to continue light excercises like floor excersises to keep my stress managed. Are you taking the lowest dose possiable of the iodine radiation? It sounds that you have a family that cares about you, so that's a good support system. How old is your daughter? I am doing better emotionally by hearing other people's cancer stories. Some of the stories makes me look like I got off easy. But no matter what, it is not easy for anyone! I can say for sure I would not know how I would act or what type of decisions I would make unless it was happening to me. Before my cancer, it was easy for me to judge other peoples decisions. I am a student nurse and when I hear of cancer patients that are only in their 3o's-40's with a DNR status, I do not judge their decision. I just wonder what road their life took them on to make that decision. I am still worried almost every day about the what if's, but I try to take care of my health by having hope and staying positive. I was depressed for a couple of months after my surgery, and I thought I would never go back to my normal self again. But, I did. It almost seems it happened over night, because I don't remember waking up one day and saying, "Wow I am myself again!" Oh, ya, I am sure the doctor told you that it might take up to six months to get your thyroid levels balanced right, so hang in there. I hope you have a good doctor, and if not, look around for another one. I don't have any side effects from being hyperthyroidism so this treatment is working great. That might be something to look into with your doctor after your radiation treatment. I am going to my endocrine doctor in March to have another scan to see if I need another treatment of the radioactive stuff. FYI: if they haven't told you about the scan, each pic takes about 10min. and this board looking thing is like 4 inches or so from your face, so that really bothered me during the procedure. I wish they would have offered me a sedative or something, cause it made me anxious and I was crying. It's not enclosed or anything, and you can have your husband in the room with you, cause there's no radiation being put off. I hope your treatment goes well, hang in there! U are probably the strongest family on your block! Let me know how things are going. SJS

    I was so happy to get your response. Thank you for taking the time. How long have you been living with your cancer and/or have you gotten a clean bill of health? I have been trying to maintain my exercise schedule to some extent but haven't always felt energentic enough to do what I used to do. I don't have any idea on the dosage that will be administered. I suppose that would be something I would want to know. Since finding out my radiation schedule I have been frantically reading everything on RAI and can get my hands on and have read several articles regarding dosage amounts. At my initial meeting with the doctor and did not know to ask. I'll let you know how it goes. Thanks for describing the process. It helps to have some idea as to what I will encounter. It is very reassuring to know that my husband can be right there with me. I am petrified of these tests and what the results will be. Did you have more than one test and did they tell you the results shortly thereafter? I understand that they will tell me within a half hour after each test what the results are. I don't know if I even like that idea. I would prefer to take all of the tests over the week and then get the final results of all at the end of the week. I'm not looking forward to being the nuclear isolation unit of the hospital either. It all sounds very lonely and I'm a people person. Being isolated from the world sometimes seems more horrifying than the cancer itself. I'm curious about your cancer. Did you have just the thyroid removed or lymph nodes too? How are your calcium levels? So many questions, so little time......
  • sjspeds
    sjspeds Member Posts: 21
    #11
    r11658h said:

    I was so happy to get your response. Thank you for taking the time. How long have you been living with your cancer and/or have you gotten a clean bill of health? I have been trying to maintain my exercise schedule to some extent but haven't always felt energentic enough to do what I used to do. I don't have any idea on the dosage that will be administered. I suppose that would be something I would want to know. Since finding out my radiation schedule I have been frantically reading everything on RAI and can get my hands on and have read several articles regarding dosage amounts. At my initial meeting with the doctor and did not know to ask. I'll let you know how it goes. Thanks for describing the process. It helps to have some idea as to what I will encounter. It is very reassuring to know that my husband can be right there with me. I am petrified of these tests and what the results will be. Did you have more than one test and did they tell you the results shortly thereafter? I understand that they will tell me within a half hour after each test what the results are. I don't know if I even like that idea. I would prefer to take all of the tests over the week and then get the final results of all at the end of the week. I'm not looking forward to being the nuclear isolation unit of the hospital either. It all sounds very lonely and I'm a people person. Being isolated from the world sometimes seems more horrifying than the cancer itself. I'm curious about your cancer. Did you have just the thyroid removed or lymph nodes too? How are your calcium levels? So many questions, so little time......

    I had the surgery exactly a yr. ago and have been cancer free since March of last yr. I think I did get the results right away, and the cancer did come back clear. The surgeon was great, he didn't remove any of my parathyroid's so I have normal calcium levels. I had my whole thyroid gland removed and I think 5 or a little more of my lymph nodes removed. You have over 90 lymphnodes in your neck. So it's normal for them to remove some, to leave a clear margin. The thyroid is such a vascular organ that it didn't supprise me that a 4 cm nodule could spread to my lymph tissue. I had the lowest dose possiable for the radio active iodine so I didn't have to be in hospital isolation. You do though,hah? You might have a different experience than me if that is the case.. Don't know how they might do the procedure. how big was your nodule? Did they remove some lymph tissue? I think the isolation in a hospital would be really hard, cause you feel so alone. Your not though, cause there's lot's of out here feeling sad for you! Hope you are getting some answers now! SJS
  • cherrie
    cherrie Member Posts: 38
    #12
    sjspeds said:

    I had the surgery exactly a yr. ago and have been cancer free since March of last yr. I think I did get the results right away, and the cancer did come back clear. The surgeon was great, he didn't remove any of my parathyroid's so I have normal calcium levels. I had my whole thyroid gland removed and I think 5 or a little more of my lymph nodes removed. You have over 90 lymphnodes in your neck. So it's normal for them to remove some, to leave a clear margin. The thyroid is such a vascular organ that it didn't supprise me that a 4 cm nodule could spread to my lymph tissue. I had the lowest dose possiable for the radio active iodine so I didn't have to be in hospital isolation. You do though,hah? You might have a different experience than me if that is the case.. Don't know how they might do the procedure. how big was your nodule? Did they remove some lymph tissue? I think the isolation in a hospital would be really hard, cause you feel so alone. Your not though, cause there's lot's of out here feeling sad for you! Hope you are getting some answers now! SJS

    Hi,I had the isolation treatment twice one in 1989,I was 18yrs old and I wasin the hospital for 3 days but when I came home I couldn't be near my baby for 2 weeks, the reatment was I131,the dose was 100, In 1994 I needed another treatment,the dose was 125 and I was also hospitalized,but in 2003,last year I needed a third treatment the dose of this one was alot stronger 152,and the dr said that now they give you the Iodine and you go home and you lock yourself in a room for 5 days.I told my Endocronoligist that if I need another treatment I don't want to come home. It was a real bad experience for me.I got really sick to my stomache and had to come out running from the room to the bathroom.I had to let my kids I was leaving the room,I had to clean everything with Clorox which made things worst,cause of the smell,and my grandmother lives with us and she had to open the door to almost throw me my food. I do not recomend doing this at home it is a risk for your family unless you have another house where you can be alone.Trust me,you go crazy also,but cleaning after you go to the bathroom with Clorox makes it worst.I felt the smell of Iodine come out through every pore of my body and I was real swollen and was sick for 3 days I smelled so bad no matter how many showers I took it wouldn't go away.Here the Iodine that I take is liquid not a pill(I live in Puerto Rico).It doesn't taste bad but trust me you feel it working.It's already time for another body scan I first have to go get blood test and then go for the synthroid withdrawal. I say that cause the take me off of my meds for 6 weeks. For 2 weeks I drink Cytomel then I take nothing and I feel like crap cause it feels like instead of 4 more weeks like months. Since I got so sick last year being off of my meds the dr said that maybe this year it was going to be different.My meds are so high(300mg) that after a week I already feel the body complaining. I hope everything came out ok. and I will let you know how mine comes out
  • sjspeds
    sjspeds Member Posts: 21
    #13
    cherrie said:

    Hi,I had the isolation treatment twice one in 1989,I was 18yrs old and I wasin the hospital for 3 days but when I came home I couldn't be near my baby for 2 weeks, the reatment was I131,the dose was 100, In 1994 I needed another treatment,the dose was 125 and I was also hospitalized,but in 2003,last year I needed a third treatment the dose of this one was alot stronger 152,and the dr said that now they give you the Iodine and you go home and you lock yourself in a room for 5 days.I told my Endocronoligist that if I need another treatment I don't want to come home. It was a real bad experience for me.I got really sick to my stomache and had to come out running from the room to the bathroom.I had to let my kids I was leaving the room,I had to clean everything with Clorox which made things worst,cause of the smell,and my grandmother lives with us and she had to open the door to almost throw me my food. I do not recomend doing this at home it is a risk for your family unless you have another house where you can be alone.Trust me,you go crazy also,but cleaning after you go to the bathroom with Clorox makes it worst.I felt the smell of Iodine come out through every pore of my body and I was real swollen and was sick for 3 days I smelled so bad no matter how many showers I took it wouldn't go away.Here the Iodine that I take is liquid not a pill(I live in Puerto Rico).It doesn't taste bad but trust me you feel it working.It's already time for another body scan I first have to go get blood test and then go for the synthroid withdrawal. I say that cause the take me off of my meds for 6 weeks. For 2 weeks I drink Cytomel then I take nothing and I feel like crap cause it feels like instead of 4 more weeks like months. Since I got so sick last year being off of my meds the dr said that maybe this year it was going to be different.My meds are so high(300mg) that after a week I already feel the body complaining. I hope everything came out ok. and I will let you know how mine comes out

    Wow! Sounds like you have tried everything to beat this! That sounds tough doing that isolation at home! With kids and everything! I hope your scan comes back good. Don't want to have to go through all that again. What type of thyroid cancer do you have? I have papillary Throid cancer. I am going to my new endocrine doctor next week, I hope I won't have to go through the iodine treatment, cause the process does suck! Take care, SJS
  • moniqueca
    moniqueca Member Posts: 1
    #14
    I too am in nursing school. I was diagnosed in August of 04. I had a total thyroidectomy and have had the I-131 treatment. (it was worse than the surgery) I recently found out that I have mets to multiple lymphnodes and will be going next week to decide if I have to have a neck disection. I cannot help you with the ovarian tumor, however, I know the best way to beat this is to keep your head up. I is hard to see your husband struggling. But he will pull through just fine. You focus on you and your health. I know you tire of hearing this. (so do I.) But it really is the truth. God can do miraculous things. I also feel like i have lost total control. Everyone else is telling you what to do, and then being in nursing school makes life very hectic. How is your school dealing with your illness? I wish you well.
  • Unknown
    Unknown
    #15
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