Diagnosed 3 days ago...need advice and positive thoughts!

kathleenbrd

Hi, everyone! I just found out 3 days ago that I have papillary carcinoma in my thyroid. I am so stressed and upset...and scared. Just wanted to talk to others about their experience and maybe get some positive support. Here's my story...

I am 38 years old, mother of four great kids, a wife, and a nurse. I have had an "underactive" thyroid since I was very young...about 5 years old, I think. When I was 20, my doctor felt some nodules on my thyroid and sent me to an endocrinologist. I was diagnosed with a multinodular goiter. I believe I had some type of radioactive scan at that time that was fine. I was then monitored for a few years with ultrasound and lab tests, and nothing grew or changed, and basically the doctors thought, okay, everything is fine. I went on with my life, having kids, going to school, etc. No problems. When I had my last child, almost 7 years ago, my OB/GYN had my thyroid levels tested as well as a thyroid antibody test, which showed I had Hashimoto's Thyroiditis. He then sent me to an endocrinologist who basically said it's an autoimmune disease that will eventually kill my thyroid. So, we just need to monitor my levels and treat accordingly. I believe that I probably had a thyroid ultrasound during that time that was fine.

Well, my life these past few months has been very stressful. Sometime in mid-April of 2009, I had an incident where I was laughing really hard and I just started coughing and coughing. After that, I had a "tickle" in my throat that wouldn't go away and I would have these dry coughing spells every 2-3 days. Went and saw a nurse practitioner who said she thought it was just allergies and gave me some samples of meds. Well, in the meantime, I had hysterectomy surgery scheduled May 13 to remove a large dermoid cyst on my only remaining ovary. These coughing spells were still occuring at my pre-op appointment, and the surgeon put me on an atibiotic just in case.

Well, I had the surgery and went home the next day. But the day after that, I was very lethargic and just sick. Doctor sent me to the ER where I was admitted for pneumonia. Stayed in the hospital for almost a week.

When the coughing first started, I didn't know what was causing it. Being a nurse (which may be a bad thing), I am always worried about worrisome symptoms. So, knowing my thyroid history, I thought, well, maybe I have thyroid cancer and it's gone to my trachea...resulting in my cough. So at that time, I thought maybe I need to have another ultrasound done on my thyroid.

So, I got through my surgery and pneumonia and am on the road to recovery. Then I had my thyroid ultrasound a few weeks ago. It showed a 1 cm nodule on the right lower area of my thyroid. I had very recently got a new doctor who was following up on my pneumonia who set me up for a biopsy right away, which I had this past Wednesday. I wasn't worried. I knew I had a multinodular goiter. I knew that it would come back benign.

Well, I got a call from my doctor the next day who told me that I had papillary carcinoma cells in the nodule. I was shocked. He was very positive...it's only thyroid cancer. They'll take it out and I'll be fine. Well, it's sunk in for a few days. I'm still in shock, but now I'm more scared than anything. I have an appointment July 1st with an ENT for treatment. Waiting is horrible. So, I have a few questions for all of you:

1- Has anyone had the coughing symptoms as I mentioned where the thyroid cancer had spread to the trachea?
2-What will the ENT do next as far as any additional tests?
3-I know the prognosis is fairly good, but how long have you all had this? Will I live into old age?
4-I want to do everything I can to get rid of this. What have you all done in your treatment to be sure it won't come back?

Well, thanks for listening. Please post with any advice and encouragement you may have. I really need it.
Kathleen

jcvolt

The good news is people don't die from papillary thyroid cancer and it is slow growing so you don't need to rush right in and get your thyroid out. Many people live to a ripe old age never knowing they had thyroid cancer. The bad news is that your doctors are probably going to tell you you need your thyroid removed right away. If the nodule is small there are other options. A partial thyroidectomy would be one and there are some clinical trials you can look into. Depending on your doctor they may also want you to have radio active Iodine treatment although that is not really used much for stage 1 and 2 cancer anymore and they don't always tell you about all the possible side affects so take your time and get all the facts first. Best wishes.

Lilypr

Hello Kathleenbrd
I'm kind of new at this ... let's just say a couples steps ahead of you...On march this year I was diagnosed of Papillary CA and had a complete thyroidectomy...my first and only (by now) RAI it was on may 22nd. Tomorrow I'm going to see my Oncologist for the first time, so' we'll know. About your questions; I'd have those coughing but nobody told me about a relation between that and cancer. As I told you before, I'm new at this, but on this site there's people (thyca) survivors for many years. I respect how jcvolt think but as nurse you know that no matter if the diagnose is the same, in the patient it may have variants...but in my case I did it all done, at least trying, it won't come back...just ask your doctors and look for the most information you can...and it's okay to be scared.

No matter how much time, I believe we all know and been stressed, upset and most of all scared. I understand you'll have lots of questions, worries but you'll get thru this. The important thing is to stay positive and to hold on your people (family, real friends..the people you love). It won't be easy but as other been there, I'm there...I can tell you... you'll be okay.

= )

kathleenbrd

Lilypr said:

Hello Kathleenbrd
I'm kind of new at this ... let's just say a couples steps ahead of you...On march this year I was diagnosed of Papillary CA and had a complete thyroidectomy...my first and only (by now) RAI it was on may 22nd. Tomorrow I'm going to see my Oncologist for the first time, so' we'll know. About your questions; I'd have those coughing but nobody told me about a relation between that and cancer. As I told you before, I'm new at this, but on this site there's people (thyca) survivors for many years. I respect how jcvolt think but as nurse you know that no matter if the diagnose is the same, in the patient it may have variants...but in my case I did it all done, at least trying, it won't come back...just ask your doctors and look for the most information you can...and it's okay to be scared.

No matter how much time, I believe we all know and been stressed, upset and most of all scared. I understand you'll have lots of questions, worries but you'll get thru this. The important thing is to stay positive and to hold on your people (family, real friends..the people you love). It won't be easy but as other been there, I'm there...I can tell you... you'll be okay.

= )

Thanks for your support...
Thanks for being so positive! It does help to talk with people who know what I'm going through. How big was your cancerous nodule? Just curious.

Lilypr

kathleenbrd said:

Thanks for your support...
Thanks for being so positive! It does help to talk with people who know what I'm going through. How big was your cancerous nodule? Just curious.

You are welcome Kathleenbrd
It's okay...I don't mind to tell...the patology perform it revealed multinodular goiter with papillary carcinoma of 0.9cm. The bigest I had it on my left lobe but had some nodules on the right lobe too.

= )

kathleenbrd

Lilypr said:

You are welcome Kathleenbrd
It's okay...I don't mind to tell...the patology perform it revealed multinodular goiter with papillary carcinoma of 0.9cm. The bigest I had it on my left lobe but had some nodules on the right lobe too.

= )

Biopsy?
Did you have a biopsy of a nodule before surgery? If so, did it come back papillary cancer for sure?

Lucerne25

Newly diagnosed as well
Hi Kathleen,

Just wanted to let you know I have the same kind of cancer which was diagnosed in May. I had surgery on June 16th and get my sutures out tomorrow. Everyone is different, but I never took anything stronger than ex-strength tylenol for the pain. I am waiting to see how it goes while my hormones totally deplete and then they give you the radioactive iodine. I think that while everyone tells you this is the best cancer to have..it is still cancer and can be scary to think about.

I am also a nurse and now I think that this tiny cough that I have had for a year is not allergies but may have been my thyroid as well. I think the hardest thing for me is not knowing how I will feel as my thyroid hormones disappear, and the fear of gaining weight. I just took 2 years to lose 40lbs and don't want to regain.

Good luck...and don't worry about waiting...this is sooo slow growing nothing will change in weeks or even months. Hope all goes well

Nancy

kathleenbrd

Thanks for your support, Nancy!
Thanks so much for your post! I was wondering how big your cancer was and had it spread? did you have a total thyroidectomy? How are you feeling? It's hard being a nurse and patient at the same time!

Lilypr

kathleenbrd said:

Biopsy?
Did you have a biopsy of a nodule before surgery? If so, did it come back papillary cancer for sure?

Hello Kathleenbrd
Yes, I had it first. Before anything I had full blood work and a sonogram, the sonogram reflected all the nodules, after that my surgeon did the biopsy and it came back positive for papillary carcinoma. After all I decided it was for the better to take it all to be sure because of the way I had my thyroid. I don't say this will be your case (remember what I told you before). I just tell how it went with me just to share me story with you, and in some way let you know that you're NOT alone. Feel free to ask.

You'll be okay, stay strong.

= )

Rainbow2110

Thyroid Cancer
Hi I live in Uk England & I too have just completed my rounds with Thyroid Cancer Papillary Carcinoma. I work fullitme, am 38 with a 3½ year daughter. Since the birth of her I have felt constantly shattered & a year later found a small lump where my thyroid was. The doctors kept telling me "what do you expect you work fulltime & are looking after a baby" SO carried on for another year, but new deep down knew they were wrong, as I knew there was problem with my Thyroid due to a lump, I also had slight coughing fit when I ate my dinner in the evening, but just thought I'd put too much pepper on!. I ended up changing Doctors & finally refered to an ENT specialist in April 2008. (Three years) Had needle Biopsy twice but was inconclusive,this didnt hurt! also had neck scan & lung scan, No spread, so it was decided to remove only one half of the Thyroid which was in Jan 09, I was in Hospital only for one night, back home next day, I have a 3" scar & felt a bit achy, felt more sick & woozy from the anathestic but not as bad as I had imaginged & back to work the following week. The Lump was found to be cancerous & was 2cm in size, so to be safe they decided to remove to other half I had 2nd surgery to remove 2nd half in Apri 09, it hasnt spread any further than the Thyroid, but due to the size I had High dose of radioactive Iodene treatment in May, I have agreed to a clinical trial that is currently being run over here, so I didnt have to stop taking my Thyroxine, just had an injection on both days before I was admitted.
Throughout all of this I have found that you need to carry on doing your everyday things as normal I have carried on working fulltime & caring for my 3½ year daughter, with a bit help from my other half & her being in fulltime Nursery! I explained to her about a lump in my neck & it was making me poorly & going into hospital to have it removed would make me better.
Its been tough but you get through it you have to be positive & strong mentally, especially for your kids. Everbody deals with things diffently, but I am sure all will be ok & you too will get through & beat this. I found the more I researched the better you deal with it, do as much research as you can.
Please be strong but dont worry too much it can be treated I have read numerous stories all over the world where it has spread but they were treated & have been give a long lease of life!!
Helen

LynnLevien

Rainbow2110 said:

Thyroid Cancer
Hi I live in Uk England & I too have just completed my rounds with Thyroid Cancer Papillary Carcinoma. I work fullitme, am 38 with a 3½ year daughter. Since the birth of her I have felt constantly shattered & a year later found a small lump where my thyroid was. The doctors kept telling me "what do you expect you work fulltime & are looking after a baby" SO carried on for another year, but new deep down knew they were wrong, as I knew there was problem with my Thyroid due to a lump, I also had slight coughing fit when I ate my dinner in the evening, but just thought I'd put too much pepper on!. I ended up changing Doctors & finally refered to an ENT specialist in April 2008. (Three years) Had needle Biopsy twice but was inconclusive,this didnt hurt! also had neck scan & lung scan, No spread, so it was decided to remove only one half of the Thyroid which was in Jan 09, I was in Hospital only for one night, back home next day, I have a 3" scar & felt a bit achy, felt more sick & woozy from the anathestic but not as bad as I had imaginged & back to work the following week. The Lump was found to be cancerous & was 2cm in size, so to be safe they decided to remove to other half I had 2nd surgery to remove 2nd half in Apri 09, it hasnt spread any further than the Thyroid, but due to the size I had High dose of radioactive Iodene treatment in May, I have agreed to a clinical trial that is currently being run over here, so I didnt have to stop taking my Thyroxine, just had an injection on both days before I was admitted.
Throughout all of this I have found that you need to carry on doing your everyday things as normal I have carried on working fulltime & caring for my 3½ year daughter, with a bit help from my other half & her being in fulltime Nursery! I explained to her about a lump in my neck & it was making me poorly & going into hospital to have it removed would make me better.
Its been tough but you get through it you have to be positive & strong mentally, especially for your kids. Everbody deals with things diffently, but I am sure all will be ok & you too will get through & beat this. I found the more I researched the better you deal with it, do as much research as you can.
Please be strong but dont worry too much it can be treated I have read numerous stories all over the world where it has spread but they were treated & have been give a long lease of life!!
Helen

Papillary thyroid cancer
I was diagnosed in 1998, had a thyroidectomy and treatment that year and have never had a recurrence to date. I know that if it comes back it is easy to treat. The doctors all told me that it was the best cancer to get, which I thought was a terrible thing to say but they were right. There are so many worse cancers to get. This one will not kill you. I have tests to check my blood levels and have not had a scan in 7 years. I will probably have one soon but i am not worried.

kathleenbrd

LynnLevien said:

Papillary thyroid cancer
I was diagnosed in 1998, had a thyroidectomy and treatment that year and have never had a recurrence to date. I know that if it comes back it is easy to treat. The doctors all told me that it was the best cancer to get, which I thought was a terrible thing to say but they were right. There are so many worse cancers to get. This one will not kill you. I have tests to check my blood levels and have not had a scan in 7 years. I will probably have one soon but i am not worried.

Thanks, Lynn!
Thank you for your support! Is the surgery difficult to recover from? Or is it just painful for a few days?

Thanks!
Kathleen

kathleenbrd

Rainbow2110 said:

Thyroid Cancer
Hi I live in Uk England & I too have just completed my rounds with Thyroid Cancer Papillary Carcinoma. I work fullitme, am 38 with a 3½ year daughter. Since the birth of her I have felt constantly shattered & a year later found a small lump where my thyroid was. The doctors kept telling me "what do you expect you work fulltime & are looking after a baby" SO carried on for another year, but new deep down knew they were wrong, as I knew there was problem with my Thyroid due to a lump, I also had slight coughing fit when I ate my dinner in the evening, but just thought I'd put too much pepper on!. I ended up changing Doctors & finally refered to an ENT specialist in April 2008. (Three years) Had needle Biopsy twice but was inconclusive,this didnt hurt! also had neck scan & lung scan, No spread, so it was decided to remove only one half of the Thyroid which was in Jan 09, I was in Hospital only for one night, back home next day, I have a 3" scar & felt a bit achy, felt more sick & woozy from the anathestic but not as bad as I had imaginged & back to work the following week. The Lump was found to be cancerous & was 2cm in size, so to be safe they decided to remove to other half I had 2nd surgery to remove 2nd half in Apri 09, it hasnt spread any further than the Thyroid, but due to the size I had High dose of radioactive Iodene treatment in May, I have agreed to a clinical trial that is currently being run over here, so I didnt have to stop taking my Thyroxine, just had an injection on both days before I was admitted.
Throughout all of this I have found that you need to carry on doing your everyday things as normal I have carried on working fulltime & caring for my 3½ year daughter, with a bit help from my other half & her being in fulltime Nursery! I explained to her about a lump in my neck & it was making me poorly & going into hospital to have it removed would make me better.
Its been tough but you get through it you have to be positive & strong mentally, especially for your kids. Everbody deals with things diffently, but I am sure all will be ok & you too will get through & beat this. I found the more I researched the better you deal with it, do as much research as you can.
Please be strong but dont worry too much it can be treated I have read numerous stories all over the world where it has spread but they were treated & have been give a long lease of life!!
Helen

Thank you!
Hi, Helen!

Thanks for your words of wisdom! I appreciate your support so much. How are you doing now? Did it take a while for you to feel "yourself" after the surgery? Were your hormones all out of wack?
Kathleen

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