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Pappilary Carcinoma

nbudhram
Posts: 7
Joined: Dec 2010

I was just DX with Pappilary Carcinoma a few weeks ago. I am very emotional stress out by this. I am getting very tired and do not know why. Do we have any one in our cicle with this DX.

sunnyaz
Posts: 582
Joined: Oct 2010

Hi nbudhram,
Yes, many of us have a dx of Papillary Thyroid Cancer. I am one of them. First, stop stressing, it won't help you. Educate yourself, read the posts on this site and go to the thyca.org site for more information. You are tired because you are probably Hypothyroid if you have a tumor. Are you scheduled for a Thyroidectomy yet? My Total Thyroidectomy was in November last year. I tell every new person that you should never believe the "Cadillac of Cancers" bull---- that the doctors will tell you. No cancer is a good cancer. You will need treatment. Usually removal of the Thyroid and then in most cases Radioactive Iodine Treatment. Take this one day at a time and feel free to ask questions and post as needed. Hang in there, you are not alone.
Julie-SunnyAZ

nasher
Posts: 507
Joined: Apr 2010

i am about 1 year out from Papillary and Follicular cancer. trust me anytime they bring out the C word it is stressful.

defiantly thyca.org for a lot of good answers.

ask away any questions you have.

oh and if any doctor says anything about it being a GOOD cancer or you being lucky you got ... remind them its not comforting... I still get doctors mentioning things like that and its always disheartening to me.

i have posted my story on this board and so have a few others.. please ask any thing you have a question about we are glad to help

your probably tired from your thyroid problem. I know i got tired and forgetful and had lots of stress and i think i was forgetful now and then but i don't remember.

JC_hama
Posts: 14
Joined: Dec 2010

nbudhram,

I was dx with papillary carcinoma on November 10 of this year and had my thyroid removed on November 18. I am still waiting for my radio active iodine treatment. I fully understand your emotional stress over this dx. I still have my days when I feel like its all a dream and I am going to wake up any minute now! It is true what the others have said about taking it one day at a time. I find that it is easier to deal with when I am not stressing over what is going to happen. Also, stress can do amazing things to our bodies. It can make you feel tired all the time so it is important for you to try not to stress over it. Easier said than done, I know! Try and find something that will keep your mind off it. I like music so I will put on my headphones and listen. I also play games with my kids and I let myself get lost in books. It is really helpful. Arm yourself with information from TRUSTED sources! The thyca.org website is very helpful as is this one we are on now. Find a support group in your area so that you have local support and remember that we are here for you and you are not alone. Take care and GOD bless.

Cathy

nbudhram
Posts: 7
Joined: Dec 2010

Thanks for your supportive and comforting words. Yes, I now realize that I am getting much tried from the emotional stress and not knowing what would be the out come of the surgery. I am still in the denial phase and think also it is a dream and would be coming out of it soon. Family members do not even want to accept the fact that I have cancer, and are not supportive at all. I have double yammy, just got a divorce and all alone now.
Was just DX on Nov 22 and still waiting to see the surgeon? I have an appointment on Jan 6 at Moffit Cancer Center in Tampa.
Wish this was over and I can start my recovery process. I also will be having Total Thyroidectomy some time in late Jan. Tell me about your recovery? Did you have to stay in the hospital?

Everyone is right, I have people and family members telling me that this is the good cancer, there is no good cancer in my books.

Good Luck and God Bless.
Nalita

sunnyaz
Posts: 582
Joined: Oct 2010

Hi Nalita,

Julie-SunnyAZ again. The truth is that your life is never going to be the same again. I don't mean to be a downer, but this is what it is and it's time to start the process of accepting it. I am just now getting there after three surgeries an RAI treatment and another RAI coming up in the beginning of February. I go through periods of discontent and wish I could just give up and go to heaven but I have a teenage daughter to raise and family that would be very sad if I don't put up the fight. So I do, and I take every single day I can get as a blessing. I continue to work (in the Medical field) and try not to focus on my own issues. But, there are times I wish I could pinch myself and wake up from the horrible nightmare too. Before my dx is was a healthy 42 year old woman with a solid muscular structure and very athletic. Now, I am fifty pounds overweight and there are days it's very difficult to get out of bed, get my daughter to school and my butt down the road to work. I fight falling asleep on the freeway all thirty miles.

I hope that you have a support network. Maybe it's best to educate your family about this and let them read some of our posts. This is not a "good" cancer. Yes, it is treatable with a lower mortality rate, but it isn't any less serious than other cancers. I have said this in other posts and I will say it again, I know plenty of other cancer patients walking around without an organ, lung, kidney or whatever, and they don't have to take medication for the rest of their lives just to stay alive and sane. The Thyroid is a very important gland and without medication after it's removal, we will die. Your mental status will be different. Your blood pressure, your body temperature, heart rate and many other things are regulated by your Thyroid. It is a hormone secreting gland. This affects so many bodily functions.

Some words of advise. Ask your doctor to test your tissue for the B-RAF mutation gene before your Thyroidectomy (will be done in Pathology after removal). This mutation gene makes your cancer more aggressive and more difficult to treat but it's NOT a toe tag and you need to know if you are facing this in order to be more aggressive with initial treatment. About 40% of people have this mutation gene. Most people survive Papillary Thyroid cancer with the B-RAF mutation gene. It is just that you will need to be watched for recurrence for the rest of your life. After you are cancer free for ten years you can relax a bit, but will still need regular sonograms and blood work.

I am a B-RAF positive Papillary Thyroid patient with recurrent metastasis to the Lymph nodes. Some mistakes were made in my initial treatment and I hope to help others to understand more about this cancer in order to prevent them from having the same mistakes made in their care. Also, IF you should have metastasis after your Thyroidectomy, get a referral to an Oncologist. Most ENT's do not know the nature of cancer and are not qualified to do this kind of treatment. They (and General Surgeons) are great at the initial Thyroidectomy, after that you will need more specialized care. I was lucky to get in with an Endocrinologist/Oncologist/Surgeon in Tucson at the U of A Cancer Center. I don't mean to brag, but what a difference this is making in my prognosis. He works along with my regular Endocrinologist to help me get the best possible outcomes from each surgery and treatment.

My prayers are with you for your comfort and ease with your upcoming surgery and any and all treatments. Please keep us posted and don't hesitate to post questions or concerns.

God Bless,
Julie-SunnyAZ

sunnyaz
Posts: 582
Joined: Oct 2010

I forgot to tell you that you will have to stay overnight in the hospital so that they can watch your calcium levels, but other than that the recovery time is mostly at home. I went back to school/work one and a half weeks after my Thyroidectomy.
Julie

nasher
Posts: 507
Joined: Apr 2010

yes definatly make sure they watch your calcium

when they removed my thryoid (2 surgeries) they took out one of my parathyroids on each surgery as well (i have 2 of my 4 left) the other two went into shock and my calcium level droped through the floor... 10 months later i am still haveing minor calcium issues.

amorriso
Posts: 186
Joined: Oct 2010

Hi there. I was diagnosed with Papilary Carcinoma in september. I remember being exhausted by the time I had my surgery. I had my RAI treatment in November and started on Thyroxine after that.(the doctors decided to wait to start meds till after the treatment - I dont recommend waiting). I feeling pretty good now - went back to work and am slowly getting back to normal.

I agree with other posts - this forum has been great in helping me get trhough this. Take it one day at a time.

TAke care

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