Add me to the Cancer List-I've got it...HELP!!!

[rellyrooly]

Just got my FNA results...cancer in all 3 nodules.  Great, right???  I am numb...a walking zombie...  I did the crying thing at first...now just numb...

My endo wants me back tomorrow for more biopsies.  Is this normal protocol?  He says he wants to check other areas in my neck.  I am scared to say this but I think he knows (or suspects) more is going on than he is telling me.

Sooooo, I know I will be having at least a TT but there may be more.  I meet with the surgeon on thursday.  Do people usually have radiation, chemo even?  I don't even know what to say anymore, I just need support...PLEASE!!

Cindy

[Reese120]

I know how you feel, I am in your shoes!  I just found yestedray that I have it too.  The support here seems great!  At least we all have each other.

Take care~

[nissah46]

Cindy, try not to panic about this..Although it is good to be informed, sometimes too much information can be scary. That is how it was for me.  At the beginning, I would read something on the internet and then get upset. I just decided to wait for surgery and then go from there.  I had a TT, followed by radio active iodine 5 months later.  There is a book , The Thyroid Cancer Book, Second Edition, by M. Sara Rosenthal, Ph.D.  I found it very helpful and easy to understand.  It prepared me for each stage of treatment.  Good luck.
Trish

[rellyrooly]

Thank you all for your positive thoughts.  I'm sure you know, though, that it is still just a shock to the system.  I never envisioned that I would hear the words "you've got cancer" at least, not yet.  I am 39 years old and just never saw this coming.  I am really down today.  Right now I am just focusing on getting these horrible FNA's again and I am freaking out.  I almost think it was better the first time when I really didn't know what to expect.  And now, I know what to expect and I think this time he is going to have to go deeper than before as he mentioned having to check behind my thyroid.  SIGH....

[onlyme27]

I had three nodules in 2002 that were cancerious.  They were quickly removed the left side where the nodules where and I never had to go thru any RAI treatments.  The nodule were small enough that the doctor felt certain that it had not spread.  I did develop 2 more nodules less than a year later.  I had the right side removed then.  These nodules were not cancerious.  The point to all of this is not to panic.  I was scared to death when I found out it was cancer and got myself sick with worry over it.  Everything turned out fine and you will be fine too.  Just stay positive.  If you have to have cancer this is the one you want.

[bet643]

Sorry about your diagnoses. I had pap. carcinoma when almost 50. With 3 quite large cancerous nodules, a large goiter and it was found in my sturnum. Had a T.T. followed by I-131. Though because of my age and size of my nodules, I was told about a 70 to 75% survival rate. But no one really truly knows the exact figures. But if you're going to get cancer, papilary is the best.;Don't let it get you down. You must not let it control you. It also helps to be positive when going into surgery. Plus don't worry about the surgery. It's not that bad, very little down time. We will help you through it. We are a great cpmmunity that offers support and our own personal experiences. Hey, look at me, I'm still here and I will be here for you.

[Thypatient]

I'm so sorry your facing this diagnosis.

I hope you find here some practical information that helps you and give you some hope.

We are here to support and be with you.

[utahmomma]

Here's more good news:

*ALL* papillary carcinomas diagnosed in a patient less than 45 years old are only classified as Stage I or Stage II (even with distant metastases).  You don't even become eligible for Stage III or Stage IV until you are 45 years old or older.

The 10 year survival rate for Stage I papillary carcinoma is 100%
Stage II is 98%
Stage III is 82%
Stage IV is 38%  

(American Cancer Society Statistics)

My youngest sister (24 at the time) had the worst case of papillary carcinoma of the entire family.  She had spread to her lymph nodes and needed three doses of RAI (the last one showed metastases to her breasts and liver).  Since then (4 years ago) she is 100% cancer free (no thyroglobulin detected - the thyroid cancer marker); has a 2 1/2 year old daughter, and is pregnant with her second baby!    There is a *cure* and there is life (and hope) after this diagnosis!!!

Stay strong (and ask all the questions you want)

Utah

[ChitChatNine]

Please read this .. from our Health Pages which I posted awhile ago. ThePsychological Impact of Cancer (let's face it .. this is a new chapter of your life and it is yours and NOT by choice).

http://www.medhelp.org/health_pages/Thyroid-Disorders/Psychological-Impact-of-a-Thyroid-Cancer-Diagnosis/show/90?cid=62

C~

[rellyrooly]

Ok so one more question...SORRY!!!

my doc says he thinks that I have had this for 10-15 years...so does that sound like it is enough time for it to spread?  If I have had it that long do you think it is at stage II??  just trying to get a frame or reference on timelines of this cancer...THX!!!

[utahmomma]

Cindy,

Papillary carcinoma is the slowest growing, and easiest to kill, thyroid cancer.  It can spread but it spreads slowly.  Usually the spread is into the lymph nodes which is probably why he wants to check those.

Papillary carcinoma doesn't turn into any other type of cancer.  It can grow *along side* other cancers (most often follicular - the other common form of thyroid cancer) but usually is found by itself.  (By the way, follicular carcinoma is treated the same way.)

He probably just wants to biopsy the lymph nodes (and any other smaller nodules) to get a good idea about any spread and to come up with a treatment plan.  Your endo will be in charge of treatment after your surgery so he probably wants to give the surgeon (and himself) as much information as possible about your cancer and the possible treatments.

I'm sure you are scared and the confusion adds to that.  Take a breath - we'll get you through this!!!

HUGS

Utahmomma

P.S. - read through that link and come up with some questions you want to ask your doctor tomorrow

[ChitChatNine]

I saw your post on the other post and was going to reach out and ask what is up .. I am sorry you are going through this but your Doc is really on top of this and that is awesome! Best to know NOW what is going on best they can before surgery...to be prepared.  And you as the patient will heal better with less stress knowing the outcome ahead of time ...  During surgery they generally will sample some of the lymph nodes for involvement.

Mine were clear.  

C~

[rellyrooly]

Thank you, thank you, thank you!!

I am feeling really sorry for myself today (I am going to only give myself today).  I have been feeling pretty ignored here lately.  I appreciate you responding.

Yes, I believe it is PAP.  I am just confused as to why he is doing more biopsies.  He did mention lymph nodes...

I will definitely ask him tomorrow when I see him.  If it spreads, is it still PAP or does it turn into something else?  Some other kind of cancer along with the thyca?  I am just so confused and scared.

Cindy

[utahmomma]

Wow - it must be cancer diagnosis day!   I'm sorry Cindy.

I'm assuming it's papillary carcinoma, right?  (as far as I know that is the only one they can positively identify from FNAs)

Here's some of what I posted to Reese on her diagnosis then I'll throw in a bit more just for you at the end:

*********************************
Hi, welcome to the thyroid cancer family!

First of all, you won't die from this.  There is a very effective, very targeted treatment for papillary carcinoma after your surgery.  You won't need chemotherapy or that radiation that you associate with *other* cancer patients.  You won't go bald or have to have IVs stuck in your arm a couple times a week and end up puking your guts up the rest of the time.

After thyroid surgery to remove the entire thyroid you will be off medication for a month or so and on a low iodine diet (your hospital will give you that diet or we can give you a link here too).  When your body has flushed out all of the iodine they will give you what we call RAI (radioactive iodine or I-131).  The thyroid (and thyroid cancer) absorbs iodine so it is very effective to radiate iodine - then the thyroid and thyroid cancer tissues absorb it (kind of like an ant taking ant poison back to the colony and wiping out the entire thing).

There will be radiation precautions you will have to do for a week or so after (like staying so far away from kids, sleeping alone, not sharing utensils, etc.).  Don't worry, we'll help you through it all.

Papillary carcinoma has about a 90% cure rate (98-100% if caught early)!!!!!  Compare that to any other form of cancer - pretty impressive!  That's because of the RAI treatment and how slow growing papillary carcinoma is.  Here's some info:  http://www.endocrineweb.com/capap.html

We'll get you through it.  

Utahmomma
papillary carcinoma '03, second surgery '04
three sisters with papillary carcinoma; another sister with precancer; and daughter with precancer

***************************************

Okay - a few additional things for you Cindy:  get your endo and surgeon to TALK to you and write stuff down (questions to ask then the answers you get plus anything else he says).  Find out if your endo is looking for spread to the lymph nodes of if he is looking for spread anywhere else (like sub-sternum).  Ask your endo exactly what he *KNOWS* and what he *SUSPECTS*.  Ask him for his treatment plan and what the outcomes may be.


HUGS (and ask all the questions you want)

Utah