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New and daignosed with papillary carcenoma

mommiofone
Posts: 2
Joined: Mar 2010

Hi , I am a 48 year old female and was diagnosed with papillary cancer. I was told they will remove my total thyroid and the nodules around it. I am scared for the fact that I do not know alot about this cancer I was told it is completely treatable and that if it is 100 percent papillary cancer I will do radioactive iodine treatment. I am scared but try to be strong. My husband seems to be the one falling apart and my 6 year old doesn't understand just the fact that I will have surgery and I will be okay I tell her. I have surgery March 17. Please pass along any advice ,,I am a little scared of what to expect after the surgery.

lynn2318
Posts: 41
Joined: Jan 2010

Mommiofone, Hi and just to start I know exactly how you feel. I was diagnosed April 18, 2008. I also had a total thyroidectomy and have papillary cancer. I have had 2 radioactive iodine treatments. The best thing for you to do now is to educate yourself. Read any and everything you can find. This website is good and google thyroid cancer. I didn't do that and I wish I would have. The surgery is not that bad. You will be sore but I was back to work in 6 days. This cancer is treatable but keep in mind it is still cancer. It took we a while to realize that. My doctor finally took my arm and said "you have cancer and any cancer is not a good thing." Be sure to ask what stage your cancer is and you really need a good endocrinologist to follow you after your surgery. He will be the one to order your RAI treatment and follow up scans. Good luck with your surgery and remember it is ok to ask questions, and it is ok to be scared. Let your husband hold you up right now. I will be thinking about you and praying for you and your doctors and family.

mommiofone
Posts: 2
Joined: Mar 2010

lynn2318, thank you for the advice. How often do you have the treatments. Did you do full body scans to see if that there is no cancer anywhere else. Thank you for advice and ..you will be in my prayers also.

Leeland51
Posts: 7
Joined: Mar 2010

I took an extra week from work to recuperate. I had the 1st surgery on Monday 2/22. I didn't find out nodule was cancerous until the following Monday. All of the biopsies (FNAs) prior to surgery showed it was non-cancerous. The analysis after the surgery found papillary cancer 2.3 cm which is Stage 2 (stage is based on size of tumor and a few other factors). Now I get to go back for a 2nd surgery. The 1st surgery--they kept me overnight--I was glad they did. I had honey lemon throat lozenges with me at the hospital--they really helped me through the night; also chap stick. I was able to eat breakfast in the morning. For the next surgery I have ordered the post-op mouth swabs--I want to have my own with me in the room after surgery. Your mouth is very very dry. I coughed for three days after surgery--every 30-45 minutes--because of the breathing tube during surgery. Again, throat lozenges really helped. Once the coughing was finished--I could sleep soundly. I learned that I could put my hand behind my own head and help support it and lift it when I wanted to get up or sit up. They did not put stitches in my neck--they used the new surgical glue. Good luck and God Bless.

lynn2318
Posts: 41
Joined: Jan 2010

I had s body scan after both treatments and I had a PET scan a year ago because my thyroglobulin was still measurable. So far sll scans have been negative. I have my yearly scan on Friday. The body scan consists fo going off your thyroid med until you are hypothyroid (low thyroid). Then they give you a dose of RAI wait a day and then scan you. I won't lie, everytime I have a scan I get very anxious and can hardly breathe. I will be glad when I hear the news on this one. My thyroglobulin is still 2.4. My endocrinologist wants it at 0 or below. Thanks for listening.

Redneckimber's picture
Redneckimber
Posts: 23
Joined: Dec 2009

Hi,
I'm so sorry to hear about your diagnosis. I do want to share with you that there is light at the end of the tunnel. The bottom line is you have cancer and it sucks! No matter what, it's scary and that's just the way it goes. I was devastated when I found out I had thyroid cancer. I had one of those doctors that said, it's ok, it's the good cancer! And that is not the case, there is no such thing as a good cancer! Some where along the line we were dealt a bad card, been exposed to something or was just simply handed down a bad gene, but it's ok. I'm sure my doctor didn’t mean anything bad by it, she just should have said this is one of the most treatable cancers with an excellent success rate.
So what you have to do is prepare yourself for healing! Cry your eyes out and get it all out then find that positive attitude and stick with it, take extra time for yourself and heal. If you have a religion now is the time to pray to it and take it easy, try and keep your mind clear and tell your husband that everything is going to be ok. My husband never missed an appointment, a blood test nothing, he was my rock! I know there were times when he lost it, but he tried to hide it from me, but his strength and the power of prayer got me thru the most horrible time of my life. The surgery went ok, but i had a bad reaction to the pain meds they gave me so I had to stay in longer than usual, but all in all, it went pretty smooth. I had my total thyroidectomy November 23, 2009 and I am still healing. I did loose the ability to scream, I cannot sing or get a high pitch in my voice anymore, but that's ok with me, considering. I still have swelling and my scar is still pretty pink but I look at it as a reminder everyday of what I went thru and what God spared me from! The worst part for me was the Radioactive Iodide treatment. I got a pretty big dose since my cancer had spread into my lymph nodes and the treatment made me very sick. Very ill, throwing up and numerous side effects as well. I just kept praying and before you know it I started feeling better. It did take about a month to get my taste buds back, so if that happens to you dont worry it comes back. I also have a weak stomach to begin with so dont forget alot of people dont throw up and handle it all just fine. The most important thing to remember is to stay away from your daughter for as long as you can. That form of radiation is very toxic to others as well as pets. I know this is alot and there is so much more I could tell you, but the more you read the more you will get nervous. My suggestion is to stick to the Cancer web sites, and stay away from all the other junk out there that will scare you. Everyone reacts different and everyone gets different medication levels prescribed to them depending on your cancer and your doctors recommendations. Just try and stay positive, you will be a survivor and live a very long wonderful life, this is just a speed bump! Good luck and I pray that God blesses you and your family. My birthday is tomorrow and every time I think about it, I cry and smile and thank Jesus for bringing me thru and giving me another wonderful year!
If you have time, you can read my story that I posted on my page.

Wishing you peace from one cancer survivor to another... :-)

ibeatcanser
Posts: 47
Joined: Aug 2009

Hi,
So sorry about your diagnosis. Like you, I had no idea that there was such a thing as thyroid cancer. My best advice is to get a TT and do the RAI if the endo recommends it. It's okay to be scared, cry and let it out. Let your loved ones in, you may think you're alone, but you're not. Let someone else 'drive the car' and take care of you. I know I felt like I was a burden to my parents, bringing this cancer in to ruin everyone's day. Upon the advice of my aunt, I let them in and saw a marked difference!

Everyone reacts differently. After the surgery, I was essentially back to normal, I was just a bit tired (but that's to be expected after surgery anyway). I slept alot, which your body needs at this time and when I was awake, I made sure that I exercised to keep my blood flowing and muscles refreshed. Also staying positive and praying is the key for fast healing and recovery. For me, most of my family and friends were amazed at how quickly I was up and about and only a few days of throat discomfort. No pain from the incision either!!!

It's been 7 months since my surgery and 5 for RAI, and I'm thankful for each day I'm alive and cancer free.

Stay positive and remember, the minor pains, aches and tiredness is way better than having the cancer still inside of you!

Stay well!!

jhix
Posts: 2
Joined: Mar 2010

Mommiofone,
My TT was March 10th - I just turned 49 yesterday and was also diagnosed with papillary cancer. I keep telling myself that this is a journey, not a destination - it will take time to adjust, heal, and recover. Here is my experience: my surgery went well, my recovery from the anesthesia took 8-9 hours (I don't do well with general anesthesia), I spent the night at the hospital (my sister stayed with me - which was really nice, although, not critical for my care - the nurses were awesome). It took me a long time to pee - one of the reasons they wouldn't let me out of recovery - but, I think that is not uncommon. I could eat and drink anything, although, my throat is still not 100% - feels like a sore throat like you get with strep - you know - physically hurts to swallow? My voice is still not right - although it gets better every day. My energy levels are okay - I started on cytomel the day after I got home - 2 days post-op.

I slept most of the first two days after surgery and then have gradually gotten back into normal sleeping patterns. My neck is sore and I have not driven yet, but, they say not for a week. All in all, recovery has been pretty quick - much quicker than I thought when I first came out of surgery! So - have faith that it does get better quickly!

I am struggling with the whole 'cancer' thing myself - my follow up with the surgeon and my endo is this Friday - I will deal with next steps once I know what they are....

For you, Mommiofone, concentrate on YOURSELF. If it means sitting your husband down and having a frank talk with him about getting a grip and that he needs to be the rock for you and your 6 year old, than that is what you will need to do. You need to have someone to lean on - if it can't be him, than a sister? brother? parent? friend? I can't tell you how important it is for you to be able to sit and listen and take care of yourself without worrying about them.

You will do great! You are strong and you will come through this! Remember that we only get what we can handle!! Good luck!

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