SCARED

HI I HAVE BEEN DIAGNOSED WITH PAPILLARY CARCINOMA HAVING THE REST OF MY THYROID REMOVED MONDAY AND WAS TOLD IT HAS SPREAD TO SOME OF THE SURROUNDING AREA. THEN I WILL HAVE TO HAVE THE IODINE TREATMENT JUST SCARED AND NERVOUS WOULD LIKE TO KNOW HOW OTHERS DEAL WITH THIS

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Good Morning!

I know exaclly how you are feeling, really I do. I have been a 7 year survivor and proud of it. I am not going to lie to you but it was hard. just go with the flow. God will give you Strength to go forward. You will have mix emotions, at times you will be sad, crying, mad,tired of being tired. Here is a little inpiration for you from me..... meditate the night before, think of God take deep breaths. That really helped me. I was so relaxed my husband was scared because he never seen me so "free".

Keep your faith alive!

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Welcome,

I am BRAND new to this board and to Papillary Carcinoma...woke up without my Thyroid as I went in to have HALF of it removed for a "cyst"....LONG story short..5 hours later I woke up with No Thyroid & a diagnosis of cancer and now, I'm here too for the same thing. First things first....It's OK to be scared, I am too. Second, alot of people have been helpful here BUT alot have also shared "horror stories" even though I KNOW they mean well!!! Just remember - every person is different! From what I hear, the good news is.....this is a treatable condition! We have great prognosis as I understand it. The surgery is not too bad, as you know because you had the one side removed already! This has come with its emotions for me...I started some Lexapro to help with my fear & anxiety and apparent depression type emotions following this diagnosis & surgery. Reach out to friends & your spouse, let them know what your going through emotionally & physically so you don't take it all on yourself. Maybe reach out to your doctors to get some help with the anxiety part of it....I did, and I also booked an appt. with a therapist to work through things....Stay strong! I'm in the process of moving forward with getting my RAI done sometime early Nov. I don't look fwd to the process BUT it is a MUST to take care of this situation so we can MOVE forward with our LIVES!!!
Best to you!! Marci

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I am in the same place as you - had a TT in late August and will most likely also need RAI too, as mine spread to lymph nodes and nerves. Having cancer is a scary new place, and it takes some time to get used to the idea. I found out on August 3rd, and still can't believe it, even after surgery.

Even though I am finding this hard advice to follow, the best thing is to deal with this one step, one appointment at a time, and not over-think or worry too much in advance. Recovering from the surgery takes a lot out of us, especially with a TT and neck dissection, which I had, and maybe you did too - where they remove lymph nodes.

I agree with Marci - a little "chemical" assistance (Xanax) has helped me a lot, and I have a therapist, and listen to calming tapes when I need to, especially at bedtime or when I am out doing errands or walking. Good nutrition and adequate sleep, with some daily exercise will make you feel as if you are actively healing yourself. I deal with this one hour (sometimes less) at a time and try to live only in the present. Having a good support system will help you when you need to talk or have someone just hold your hand and tell you it will be OK. This cancer is very treatable, is what I tell myself, and I hope that you know that it is.

Best of luck getting through this early stage. :)

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I just had the rest of my thyroid removed on 9/20 Pap Cancer and am scheduled for RAI early November. Remember that what we have is treatable. When I am having a rough time of it, I try to take a moment to breathe and calm down. Yes, it is really hard but if you don't corral your thoughts, they will go to the very dark corners of your mind. Keep those thoughts out of those dark corners! I think of this as being in a tunnel, knowing that I will get to the other end and it will be good. Educate yourself by reading a lot. Ask questions on this site. I have and the feedback has always been helpful, calmed my nerves. Not understanding makes your fears compound. You are not alone in this journey. I am grateful for the feedback from others. Hang in there and let everyone what you are thinking about.

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For me, it took some time to get over the shock of the cancer diagnosis--it was hard to get to the point of allowing cancer to be a part of who I am. And it was not always easy to find people who would listen to my fears and my grief. That was one part of it. The other was the feeling that I was on a conveyor belt that was taking me into things that I had no idea how to face, and didn't know how they would come out.

That's the hard part. But knowing that there are many here on this site who have gone/are going through the same things as you can be both comforting and helpful. Get through the surgery first, and then write again. We'll walk with you, step by step.

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Thanks everyone its good to have some input from others going thru the same thing. Im glad i found this site.

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Hugs to you. It is a HUGE shock to hear that cancer entered your live uninvited.
Take as long as you need to process this, it is a huge shock. It brings a load of fears and tears. It brings truck loads of questions followed by yet some more and then a great deal of anger and sadness.

When my hubby was diagnosed in February, the oncologist told him "you're in for a rough 6 - 9 months, treatment will be aggressive, but the cure rate is 90%". He was right. The road was long, it was hard, it was scary and just not a nice one, but when I look back over the past year, it has also been blessed.

My sister-in-law's advice came to me one day when I was in tears and bitter with "why" questions. Her advice was: "Instead of being angry and asking "why", rather find just one thing to praise God for". I thought she was crazy, but her words stuck and I've learnt to focus ont he little nitty gritty stuff that was a little ray of sunlight on a very dark day. Something like an encouraging text message. Or a hug from a friend. Someone who invites you for dinner to give you the night off. I'd really encourage you to do the same. When we find the positive, however small, we focus on that and start to feel better.

Good luck on your journey, the operations, the treatments and after-care. You're not alone. The guys and women here are truly wonderful. ♥♥

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So much good advice and encouragement has already been given. I just wanted to say that I have been through papillary with spreading into the throat bed. I don't know yet if I am cured. Think positively and know that we care.

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thank you for your positive outlook and the focus on God to take away the craziness through the months and dates we have to endure,
actually I have been toying with the idea of not going to anymore doctors

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what is the throat bed and what does it feel like?

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I'm nearly 2 years out from my original diagnosis and about 10 months out for my second RAI. I'm still dealing with a small cluster of "suspicious" nodes in my upper chest but I'm feeling pretty good and can function well most of the time. It just takes time to get through the initial stuff and get your meds in the best range... I hope things go well for all the folks on here, and we can all lead normal lives in the future!

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Hello my name is Brenda and I had my thyroid removed maybe 7 years ago same cancer as you ...It is not easy dealing with having a thyroid problem but add cancer and we all get scared ...I have gone though the same feeling you are going throw now I cried and did not what to expect but papillary cancer is one of the slowest growing cancers and yes mine spread to my neck and had and I131 pill(3 YEARS AGO ) which is not painful and a few biopsy but the going on the diet is the worst of it lol waited 6 month in worry and had another full body scan and didnt need no more treatment at the moment I have gone every 6 months for one and in 2 weeks I go again so what I am trying to say is eat right take your meds and go for all your scans at least once a year see and endocrinologist and remember you are your voice to your health .so stay positive will be fine no biggie dont worry so much hope this help Brenda

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As far as I know, what is referred to as "the throat bed" is just the area of the throat directly surrounding or adjacent to the thyroid gland or where the thyroid was. It's just an area. It's not something you "feel." Sending you positive thoughts and prayers for patience and for blessings.

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I had my TT May 30 2011 and 2 out of 4 lymph nodes they removed had microscopic amounts of cancer and they also said they found micro amounts in the thyroid bed also which was removed. It is very scary and I have to have rai soon I have a follow up appt next week so I'm sure I will be getting a date to do my rai. Anyway good luck to you and try and stay strong as time goes by you become less scared I've read so many stories on here everyone is helpful and you learn so much.

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Here's what helps me get through it: 1) focus on healing, not on cancer, 2) be your own advocate; if you feel you're getting the wrong message, advice, treatment, etc. don't be afraid to ask for a 2nd opinion, 3) learn about your illness through reading and research, 4) when you're feeling really low (and it will happen, chemically and emotionally) try to think about what you can do for someone else. Praying for someone, if you have the energy giving someone an encouraging phone call, writing an encouraging post on this forum, among other things. It so easy to focus inward, but focusing outward helps keep the anxiety and fear away. And 5) I was under a psychiatrist's care for a while and given meds for anxiety and depression. I'm weaning off of them now, but they really, really helped at the time. The anxiety and depression that accompany this type of cancer and treatment is not just in your head, its also in your hormones. Hugs to you!

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I hope you are on your way to recovery from the surgery. The first two weeks post TT were somewhat challenging. Once I got on Synthroid and once healing was underway, I started feeling much better and slowly started my regular activities. I almost feel 100% now at just over 2 months from TT.

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Hi, could you tell me what it feels like when it spreads there???

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Dear vasandy67,

I am in same boat with all these wonderful people. We are having similiar experiences that are unique to us.

Get your self a notebook to keep track of this experience. It will help you get through it.

When you have thyroid cancer pre-operatively your hormones are out of whack. Post -operatively it gets a little worse before it gets better.

In your notebook write down how you feel. Before your appointments with your physicians write down your questions, write his/her answers before he/she leaves the office. Ask for copies of labwork, reports, etc... staple in your notebook like a diary. Write down how you feel after the appointment. If you are nervous or scared tell your physician. If you have to refer - read to him/her what you have written in your notebook. Ask for something to assist to calm your nerves.

Take your notebook to the hospital when you meet pre-operatively with Anesthesiologist- put copies of all pre/post- operative instructions in your notebook. Sometimes we are overwhelmed to hear so much news that we don't get all the information. It takes time to understand everything. If you need a second opinion you can refer to your notebook.

If you have to stay in the hospital post-operatively have the nurses sign into your notebook and leave you a nice hello note. Tell them you're using the notebook like a diary to help you heal. Sometimes we are medicated post-operatively with pain medication and we aren't fully aware of what is going on and you would like to remember what happened. Write the directions on how to use for them. You may not stay overnight in the hospital because everyone's experience is unique to them, but it could happen.

Never write anything in your notebook that you wouldn't share with everyone - just the facts "feeling blue" "feeling better". Write what people say to you and quote them if you have to.

How is your support system? Do you work outside the home? Do you have a significant other or parents to help you? Do you have little ones or pets that like to cuddle or need to be taken care of during this time? Do you feel comfortable asking your physician questions? Do you need to take a more assertive person with you to your appointments? A notebook in hand sends the message to all your caregivers that you are serious about your health and allows you to be more in control of a situation that feels like it is out of control.

One day at a time. Deep Breath inserted here. Big hug and big kiss.

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i had 7 of 9 lymph nodes removed that were affected by the cancer. I also know of someone where the cancer had spread to her lungs. We both went to a great surgeon in NYC. I did have a tough recovery and my parathyroid function has been affected, but I am pretty well now in the thyroid dept. The friend who had the metastisis to lungs is about to run in the NYC marathon! She is doing very well, and cancer free several years out. This really is not the worst cancer to have. Most of us are still here and functioning and able to talk about it. My father who passed of bladder cancer is not. It was a very different story. See the best doctors, get second opinions, do research and plan for a period of recovery ... so plan for lots of help. You'll be ok.

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