Papillary Cancer -- please help

[cynlynne]

On Monday, Sept. 14th, I had a TT due to suspicious cells found during an FNA.  The pathology report came back showing that I have papillary thyroid cancer with conventional  and follicular variances.  The report said that they found 15 to 17 places that showed this cancer and that it was throughout the both sides of the thyroid as well as the isthmus.  The good news is that the cancer had not spread beyond the thyroid.  My surgeon is recommending a low dose of RAI.  I'm meeting with him on Tuesday the 22nd.  I'm wondering what questions I need to have him answer for me.  Any suggestions would be great. I'm a little nervous and I'm just not sure what to expect.
The surgeon also told me that my thyroid had become very enlarged and that it had basically stopped functioning.  He said that my body had tried to compensate for this and muscles has surrounded and had attached themselves to the thyroid.  The surgery was a little bit tricky and took a little longer due to these muscles. Has anyone ever heard of this happening?  I feel as if I have a ball stuck in my throat.  He said that feeling is because of all the muscle that had to be moved during surgery and that it would take months for the feeling to go away....sigh...I guess I would just like to have any insights or experiences that people on this site would like to share with me.   Thanks
Cindy

[spanky77]

Just had a TT last week. Results are PTC.  Don't have all results back yet form pathology.  The Drs. are waiting to see what the variance of the cancer is but the kicker is I can't have RAI treatment due to a renal transplant years ago.  Anyone have any experience or advise,on subject?

[mahendra9]

Your case is similar to that of mine. I am 67 years old. As the Cancer  has not spread outside the Thyroid Gland, the Surgeon told me the same.
The Staging process does not apply to cases of this nature. So just relax and get the thyroid medication adjusted as any other non-cancerous thyroid problem paient.
Cancer cells are found in all human beings.Sometimes a slight 'electric shock' most likely the many presevative/chemical food may trigger the cells to be called 'Cancer'. It is fortunate that you have a good competent surgeon who could assure you a 100% cure by doing a TT as yours is in the early stage as the proverb goes - A Stitch In Time Saves Nine. I had a freind who was passing uncalled remarks on a friend who got Corectal Cancer and to our shock the very friend was later diagnosed for Liver Cancer. Anyone can get cancer anytime as it is in the body.
You will be cured 100% and need not worry about the word Cancer as it is just a Word Cancer and noone is safe from cancer. God Bless.

[AnglLdy]

I know how nervous you are!  I had TT May 29th - and followed that up with the RAI on Aug. 26th for papillary cancer.  Thankfully I was able to take thyrogen shots the two days prior to RAI and never had to go off of the meds at all.  After being hypo postop I could not imagine putting myself through that again if it could be avoided.  The whole body scan after the RAI showed full uptake of iodine in the thyroid (which is exactly what you want) so the thyrogen shots and most importantly to me, remaining on the thyroid meds the entire time, really helped me.

The worse part(s) of RAI, for me, were staying on the low iodine diet 2 full weeks and the 48 hours of complete isolation.  If you have a craft you work on or enjoy reading, etc. stock up on material to keep you busy ... I crocheted and read books and it did help.  Amazing how 2 little days can drive you nuts because you 'know' you CAN'T leave that room!  LOL

You can find some great recipes here for the Low Iodine Diet: (www.thyca.org/ablation.htm)  and I'm sure a lot of folks here can give you their favorites - I made extra meals / applesauce, etc to have after the RAI so I wouldn't be in the kitchen cooking - my wonderful husband simply reheated them and left them outside my bedroom door for me.  Made things easier at mealtimes for us both.

As for this 'knot' feeling in your throat / neck:  I am just now, 4 months post op, feeling as though my neck is beginning to be 'my neck' again!  I had a great surgeon, most people can't even see the scar from the surgery and have no clue I had surgery unless I tell them then they're amazed at not seeing a scar - but those internal issues do take time to heal - sometimes longer than what we can see on the outside.

Bless you and know you're in my prayers - it's scary, but it does all work out well.  Take comfort in remembering thyroid (papillary) cancer is one of the easiest to treat - being hypo and regulating your meds are usually the most frustrating parts and where most of our 'issues' come from!

Jamie

[Barb135]

cynlynne and jeano22383 --I haven't had any kind of cancer and can't answer any of your questions on that issue - but I would like to let you know that I am a fellow thyroid patient and can only hope to give you both some encouragement and support.  

There have been several members of my family that have had various types of cancer (none thyroid) and they've all done well so far.  

This forum is here for you and the members are fantastic............
Praying for both of you..............

[jeano22383]

I just wanted to tell you that I am going through the same thing you are right now.  I had a TT on September 2nd, and was diagnosed with Follicular Cancer on September 10th.  it's been 2 1/2 weeks, and the "big ball" in my throat is smaller.. but still there.  The nurse in the hospital told me I could expect to feel that for up to 3 months.  I am meeting with the radiation oncologist on Thursday to prepare for a dose of RAI.  I have no idea what to expect, other than he will probably tell me to go on a low iodine diet for a while.  As much as everyone says this is the cancer to have.. it doesn't make it any easier to have it... and I think I can say pretty positively I know how you are feeling because I am feeling the same way right now.  I wish the best for you and will keep you in my prayers.

[cynlynne]

Thank you for concern.  Even though I know that this is something that is pretty easily cured and taken care of, it has still been a very difficult and emotional week for me.  Knowing that there are people who have walked these steps before me has been a comfort.  Thank you for your comments and caring words. It really does help and has given me some comfort.

[loonette]

I think I sent you a note...can't be sure since I have had no thyroid meds for 4 weeks now and I am going crazy.  Have papillary carcinoma T2 and just had RAI on 9/11.  Ask what the dose is going to be.  I had 150-160 millicuries.  Some have lower or higher.  Ask when can you get back on meds.  I am finally starting tonight since I think I will go psycho otherwise.  

I think the worst part (well there are lots of them), but going on the LID was horrible for me at week 3.  Ask if you need to be on the low iodine diet.  Some say yes others say no.

Always get copies of labs and pathology reports. And write down your questions from this site or your own.  I would forget so this helped me a lot.

They will tell you what to do for your isolation time.  Know there are a lot of discrepancies in this whole thyroid experience.   I'm still learning as I go.  We can all learn from each other however.

Take care and let us know how it all works out.

[ChitChatNine]

Here's a list of good links from our Health Pages.   This first one I posted in there and found very helpful:

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


http://www.medhelp.org/health_pages/Thyroid-Disorders/Papillary-Thyroid-Cancer-Webcast-on-Patient-Power---Dina-Elaraj--MD--Endocrine-Surgeon--Northwestern-Memorial-Hospital-/show/492?cid=62

http://www.medhelp.org/health_pages/Thyroid-Disorders/What-is-Thyroid-Cancer---MedHelp-Glossary/show/93?cid=62

http://www.medhelp.org/health_pages/Thyroid-Disorders/RAI-Preparation--Step-by-Step-Details-/show/626?cid=62

[ChitChatNine]

Hello and welcome!

I am so sorry not only are you recuperating from your surgery, but now dealing with the emotions of the Big "C" Diagnosis.  This new dimension to your life has changed you forever and has changed your medical history forever.   This isn't a bad thing, however, because after you accept this, you'll find that anytime you visit any doctor for anything small, they LISTEN to you and you will be ensured (for the most part) of great medical care moving forward (well, sometimes tricky finding a good endo to regulate your meds LOL).

After I healed from my actual surgery I went through a long process of acceptance.  It took me weeks.  But when I came to terms with it, it empowered me even more to help others and know that if I'm going to get a Cancer, let it be this one.

Mine were two tiny tumors found incidentally, so I didn't get the RAI, but I can only imagine how you feel right now.

Hang in there -- we are al lhere for you.

C~
partial 1/07
synthorid 75mcgs

[cynlynne]

Thank your for your responses.  It has been a very difficult and emotional day for me. The idea that I have cancer is starting to hit me.  I've been weepy, tired and drained all day.  So I really do appreciate the both of your responses.  

[MANmom]

Cindy, I had 5 areas of papillary carcinoma in my thyroid tissue, I went through the RAI and it was not bad at all.  The weeks of hypothyroid leading up to the treatment is not fun, you will be tired, your face and body will swell, you will snore, you won't sleep well, despite being tired.  They will probably put you on a low-iodine diet before the RAI.  But you are lucky, the success rate for cure of papillary cancer is almost 100%, so you will be fine.  I had 100 Millicuries of radioactive iodine, you should probably ask how much you are going to have.  You should get some sour candies to suck on for the first day so your saliva will be stimulated.  You should also know that most of us lost our sense of taste for about 1 month, so prepare for food to not taste good for a month.  You will then need to be careful not to radiate anyone else, you will have to sleep alone for about a week, use seperate bath room and shower, and not prepare meals for anyone else.  All liquids you excrete (sweat, pee, spit) will be radioactive for a few days, so it is important to plan for that.  A week later you will get a gamma ray scan to check and make sure the iodine went where it was supposed to go.  Then you will be done, except for getting the synthroid dose you need.  That is another several weeks of guessing what dose is right, the doctor will test your blood and they will try to get your TSH down to .1 or so.  You should ask for copies of all tests and results, bring a folder and write everything down.  That way if you forget to ask something, you can look it up on line.  I also have my Endocrinologists e-mail so that I can ask questions without taking up too much of his time.  There are several great websites to read about what you will undergo, one is the Thyca.org website, it has a wealth of information. Google papillary cancer thyroid, you will find LOTS of information. Good luck, and you will be fine!

[dawnangela]

I myself dont know what to say as i haven't had to go through this..Someone will give you some advise soon im sure..Wishing you good luck tho when you see your Surgeon on Tuesday..Dawn