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life after thyroid cancer

kstewart19
Posts: 1
Joined: Sep 2014

Hey all I am sure everyone has talked about this, but i need someone else to talk to besides my family.  It was May of 2013 that i went to the doctor because I found a mass in my neck. I was talking to one of my friends about a mass that I found in my neck and asked him if it was normal. He said that is for sure not normal. I hadn't really felt like myself for a while. I had gained 70 pounds in a month and a half and I was really depressed. I figured it was because of the weight gain, but I decided to go anyways. The doctor said it was probably my thyroid and that it was possible that there was goiters but it was completly normal and probably nothing. My levels were slightly off, but she went ahead and scheduled me to go see a ear throat and nose doctor anyways after an ultra sound. The beginning of June 2013 I saw that doctor and I was informed that I have 6 or 7 very large nodules on my thyroid so big in fact that he didn't understand how my thyroid was functioning at all. He said I needed to have them removed. I was like what? I thought this was just going to be an in and out deal. Not that I had to have them removed. I of course started crying well more angry then anything else. I didn't have time for this. I didn't have the money to lose if I had to take time off of work. I was 24 had my own house, car, finishing school. It took me so long to get all of those things. I felt as if i was moving up again. I lost everything, my house, my car, I had to drop out of school. I was left with nothing. That of course added to the depression i was already feeling. Everyone kept telling me it was going to be fine, I was going to get thru this. it was nothing. So June,19th of last summer I had a total thyroidectamy. The doctor didn't want to chance taking a biopsy and miss if there was cancer. It was not as bad as I thought it was going to be if anything I was pist they made me stay in the hospital over night. I am a terrible patient. I am stubborn and I really don't like having to depend on others to take care of me so Im sure my parents loved having to deal with me. It was painful I of course tried to do more then I could handle and it did slow down my healing process. While I was at home recovering I recieved a phone call from the doctor a week after surgery telling me the results of the biopsy that had performed. I sat at the dining room table waiting for her to say something. My parents around as well. She informed me that it was cancer. I was like what? I was numb. Didn't really feel anything about the news. My parents were comforting as best they could be, but when you get that news i expected to feel something completly different. I didn't care almost. I was informed I had to do radioactive iodine and be off my meds for 3 weeks. I will tell you one thing that was probably the worst. I was so emotional, angry, and cried at the drop of a hat. I had to stay away from people for a while because I had no control over my actions. I continued to work through this whole things. My family telling me it was fine, but I got so sick of hearing everyone tell me. Oh, if you were to get cancer this is the one to get or just be glad you don't have terminal cancer. Its no big deal. I had to be strong for everyone. Fight through the pain i was really feeling about it all. I still do it now got to keep my head up so no one else gets weird about it. I just want to scream sometimes. So that is my thyroid cancer story. The aftermath of the surgery has been difficult. Its been a pain in the *** trying to find an endo who will listen to me. My body feels different. I don't feel the same. I get heart palpitations all the time and my endo says thats probably my anxiety and im like excuse me. I feel as if not enough is being done. Your thyroid does so much and you really don't notice what it does until its gone. I shouldn't have to fight so damn hard to get some help. Its exhausting. It isn't only checking my t4 and t3 levels its a lot of other things that happens once that thyroid is gone. I want to find an endo who will actually listen to me not just give me a pill and send me on my way. Im just pist off that not enough is being done. I am so sick of this having to be a damn fight just to feel semi normal again. Im getting by better but I don't want to just get by. I want to be me again. Not just this half version of me. Any advice on how to deal would be greatly appreciated. 

Chez
Posts: 24
Joined: Nov 2009

Kstewart19...I am hearing you. It is the same for me. Hopefully it will get better. After having three appointments with an Endocrinologist, I asked to see an endocrine surgeon as blood tests were showing high level Parathyroid hormone and ultrasound showed a tumour on my partathyroid. I also had a large nodule on my thyroid which had been biopsied twice with a pathology result of benign. The surgeon said that he would remove the tumour from the parathyroid which was likely to be an adenoma (and was) and that he would do a hemi-thyroidectomy to remove the large nodule. The result of the surgey was that I had papillary cancer of the thyroid. Although the doctor seemed a bit surprised, I wasn't surprised as I felt something was wrong and had to convince doctors. I returned to surgery for the total thyroidectomy followed by radioactive iodine. Not nice. I also have all the emotional feelings that you are speaking about. I also want to be me again. I have had a rare high grade cancer 5 years ago( a fibrosartcoma on my arm) which resulted in 2 surgeries and 32 seesions of radiation. It was a worrying time and exhausting. This time the treatment for this cancer wasn't as intense but the emotional side is extreme and exhausting. I have always been able to care about others in need even when I was fighting cancer the last time, but this time I don't seem to want to care about anyone or anything. Hopefully this will pass. I feel that I am improving. My surgery was first in February and then again in May with radiation in July. 20months ago I was 72kilos, going to the gym 3 times a week and dancing zumba twice a week. Now I am 90kilos, not going to the gym but trying to get out for walks every day. We have just taken a 5 day holiday to pick up my spirits by getting away. We went through the bush fires last year and all the houses on the opposite side of our road have gone so our street community of friends has changed too. Kristine Mattheson ( I think that is the correct spelling) wrote a book, 'Cancer to Wellness' which is worth a read. She claims to have beaten cancer and puts on seminars and retreats. She focuses on having raw foods and making food as our medicine and our medicine to be food. We tend to use food as comfort. I think we all know that we should be eating food as close to raw such as salads, a variety of vegetables, foods that are organic with no preservatives, eat oily fish, (omega 3) concentrate on getting Vit D (as a deficiency of vit D is linked to cancer). Vit B12 I believe helps with depression. I have just bought a 'nutrabullet' and I am starting my diet tomorrow of healthy eating and a weightloss diet as being over weight and lacking in energy and fitness is my main cause of feeling low at present until the next cancer trial which I hope never comes. I am so glad that I persevered with nagging doctors that there was something wrong with me on both cancer occasions so I could get on top of these illnesses as quickly as possible.  All the best to you. Keep your spirits up. Healthy eating and exercise is a start to our recovery and keeping yourself busy for a healthy mind although it is hard to do. GET UP, GET DRESSED, GET OUT has to be our daily exercise until it gets easier.  Chez

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beautifulbabyg
Posts: 3
Joined: Sep 2014

Hello, I just started into all of this. I found out in June 2014 that I had thyroid cancer,Aug 13th 2014 I had my surgery; full removal of thyroid and lympth nodes, Aug 20th 2014 I found out that they believe they got it all and that I had 2 different types. My surgeon told me that it would be up to another ENT in Oct 2014 on rather I would be going through the radioactive iodine. I am not as tired as before but still not up to my normal active level, also I have noticed that hair is shedding, now it always has but NOT like it is now. Now I hate to almost wash my hair, brush it, or even run my fingers through it. On top of being tired my weight goes up & down, my emotion is touchy. I keep it to myself so I don't worry my family. Now to make things better I woke up with pain (which has become more painful as the day has gone on) on the left side of throat/neck (hoping its a cold), but also worried if this is safe since surgery wasn't all that long ago. I was surfing around to see if I could find something and found this page.

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bdenny1954
Posts: 6
Joined: Sep 2014

hi.i too am new here and just read your delimma.i had my tt the first of febuary this year and had the RAI 131 dose af 100.i have since noticed aches and pains which i have found are normal afterwards.my throat too got a little sore and i did contact my endo about my concerns.she thinks it was my saliva glands.it finally went away.my aches and pains sadly have not.i have talked to people that have had the same as me and some are doing very well but most have aches and pains.i hope you will talk to your endo about the left side of your throat and express your concerns.it is your body.good luck and let us know how you are doing.

beautifulbabyg
Posts: 3
Joined: Sep 2014

Today the pain is gone, go figure since it's the day before my appt. But I do intend to bring this up anyways. Either way I am glad the pain has gone. See what tomorrow bringsLaughing

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