# Newly diagnosed--what to expect?



## havehope (Sep 26, 2010)

I was diagnosed with papillary thyroid cancer a week ago. I know I need to have a thyroidectomy and that RAI treatment also is likely. I am an otherwise healthy 54 year old woman.

My questions (and thank all of you who share your wisdom and experience):

1. I've read that quality of life can decrease substantially after surgery and RAI, i.e., symptoms of hypothyroidism like fatigue, etc. What is your quality of life like? Do you feel better since having your thyoid removed?

2. I have a job interview in another state in a few days and am unsure if I would be able to even take the job if it were offered to me given that I am facing surgery and possible RAI treatment. Am I going to be able to go on with my life or should I decline the interview?

3. As I go into this process, what would be your best piece of advice? Is there anything specific I need to do or watch out for?

Thank you for your responses and know that I appreciate your help!


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## chopper (Mar 4, 2007)

Hello and welcome. Sorry about your diagnosis.

Although I have not had my TT yet, I created these boards several years ago and have had the chance to speak with hundreds if not thousands of people in a similar situation and I can tell you with 100% certainty that life goes on like you never missed a beat.

The people you read about who have problems are there because they have problems and are a select few relative to the total number of people who go through this.

Think about it - its 4 months later and your done with RAI and thyroidectomy and your levels are perfectly normal and adjusted properly. You feel 100%. Are you going to come onto a message board to sound off how great you are feeling? Not likely although a few people do. You are going to come to a board to complain about problems and to seek help. Problems are not the norm except online.

More than likely you will have your thyroid removed quickly. Your calcium may be slightly off for a week or two and when it is, you get the "tingles" - a tingly feeling in your lips and fingertips typically. No problem there....you take calcium supplements until your parathyroid glands heal back up - usually about 1 or 2 weeks for most people IF it hapens at all. If you have a great surgeon he or she might not even touch the parathyroids. Calcium usually acts fast and gets rid of the tingles pretty quickly from what I understand.

ok...so now you have no thyroid.....you start going a little hypo at first as you wait for RAI. Im hypo (and hyper) and can tell you it feels sort of like a hangover. Your tired and moody and sleepy and puffy. It's not horrible. Having experienced both, I'll take hypo over hyper any day. Your doctor will probably give you pure T3 like Cytomel to get you through this period. The T3 will keep you awake for the week or two between your surgery and the RAI. T3 works very fast so when it comes time to get RAI they can stop you from taking the T3 which makes any remaining thyroid cells crave thyroid hormone (and iodine) and you get the RAI. Since your body wants iodine and thyroid cells suck up iodine like a sponge, the radioactive iodine will be sucked up by any remaining thyroid (and cancer) cells that the surgeon might have missed and kill them dead. You will now be totally cancer free. Within 5 or 6 days you go back to normal life and the RAI is out of your system (drink plenty of water after RAI and suck on lemon drops so you keep your salivary glands flowing).

Now you have no thyroid and no cancer - you are on your way back to a totally normal life. Your doc will prescribe Synthroid or Armour or something else to replace the hormone your thyroid can no longer produce and it may take a good month or two to get the right dose but if you are very proactive and insist on full thyroid panels every 8 weeks, you'll get there a lot quicker. 2 months later, you've got no cancer and no thyroid and life is terrific and like the thousands and thousands of others who have gone through what you did, you will forget about ever visiting another thyroid board again.

Regarding the job interview...personally I would wait on it. You are fighting cancer afterall and some things are just more important. Give yourself some time to heal afterwards.


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## havehope (Sep 26, 2010)

Nasdaqphil:

Thank you for your rapid and optimistic reply! I do realize that people doing well aren't on forums but you know how it is...the newly diagnosed tend to read too many internet sites and sometimes it can freak you out.

Great to know I'll be back to normal soon. Thanks again.


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## chopper (Mar 4, 2007)

You absolutely will be perfectly well but don't let yourself get complacent either. DEMAND full thyroid panels. DEMAND a copy of the path report and labs. Be proactive in your treatment and you'll be fixed up a lot sooner. And if you have any problems come here for advice and we'll tell you exactly how to kick some doctor butt to get things done. We've all been through it before and know it can be smooth as silk with the right doctor or it can be a nightmare with the wrong doctor. It's those docs who refuse to test or refuse to listen to symptoms that you need to kick in the butt every once in a while to get things moving along in the right direction. We've heard war stories here I'll tell you. Seemingly credible doctors refusing to test after a thyroidectomy or scheduling followups 3 months out while the patient suffers. Don't go for any of that BS. Do what you need to do to get yourself well and if your doctor doesn't respond to your symptoms, move on.....and in the interim, read all you can about the process so you know the protocol and know about treatment options and what to expect. The more you know the less you'll be off track.


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## kitemom (Aug 19, 2010)

Nasdaqphil, I just wanted to say Thank You for a wonderful response. It just answered alot of my questions too. I love having this board and all of you wonderful people here in a time of such chaos and uncertainty. Your all a breath of fresh air. Thank you for a job well done!!!!


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## chopper (Mar 4, 2007)

You're welcome. We have some great people here and most of us have been through hell. We put our experiences out there to hopefully help others get through their problems a bit easier. That little ridiculous gland can really cause a lot of problems and figuring it all out is somewhat subjective. A broken arm is easy to fix but how do you fix something that controls so many things? How do you diagnose a bad thyroid when most symptoms are vague and so common to other problems? It's an amazing little gland but it can sure raise hell when it's not working correctly.


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## Hope57 (Sep 16, 2010)

I appreciate your great explaination also nasdaqphil, Since joining this forum a week ago
i have had some wonderful support.

Dear Havehope,
I too have just been diagnosed with Papillary cancer with some neck lymph gland spread,
so i understand how you feel. Its very confusing at first, and when the dr. said lymph gland spread i thought the worst, but even with lymph involvement there is a great positive outlook. Im 53yrs and going through menapause, so my moods are up and down and this just sent them off balance for a few day's. Please stay intouch. take care.


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## havehope (Sep 26, 2010)

Hi Hope57:

I am also 53 and was diagnosed last week. Saw an endo. in May but he led me to believe a biopsy really wasn't necessary so I put it off. Thank god I did it two weeks ago, but still wasted four months from when I saw him. Guess I won't know until surgery if there is lymph node involvement, but I am determined that the surgery and treatment will be easy and smooth so I can get on with my life. I see a surgeon on Thursday. Have you had surgery yet?

Thanks to all for your replies. It's a little scary here at the beginning.


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## Hope57 (Sep 16, 2010)

Hi havehope,
Im seeing specialst next monday and i think at that point he will arrange surgery A.S.A.P
I hate hospitals and anesthetic's give me panic attacks once i wake up, its very scary, so they will have to have plenty of valium to calm me down.
I have had hashimoto's for about 8 years, but never had any nodules, in fact i cant even feel the one i have now as its on the lower right pole of the thyroid lobe. I first noticed an enlarged lympy gland just above my collar bone about 4 weeks ago. I didn't have a cold at the time, but i do suffer from allergies, but i was due for my 6mth blood work check up so i went to gp. He ordered ultrasound on lymph gland and check thyroid as well. I went one week later and got the results, which showed nodule on thyroid and enlarged lymph node but stressed needle biopsy A.S.A.P. did that, the next week and gp rang and asked to see me. I knew what that meant and when he hold me that it had spread to the lymp gland i thought, that's it, life is over as my grandfather died of lymphoma, my grandma breast cancer, both at 53yrs and my dad of melenoma at 76yrs.
G.P,. explained that this cancer usually stays withing the neck lymph glands and has a very good chance of a cure, but reaccurance must be watched. I think its watched with regular blood tests and scans to detect any eary sign. Im feeling a bit more relaxed now, and i know that i don't have any choice other than day by day.I had to quit my job as they don't know when i will be ok for work and they cant hold my job open, i work as a pharmacy assistant. So no job, our government sickness benefit is $230 p.w. australian dollars and im single so i dont have an extra income. I have spent the last week being pro-active and ringing all the utility company's to see if they can come up with a payment option plan for a few months, most have been really good, but i may have to live off sandwiches for the next 6 mths. LOL. Let me know how your going. xx


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## CareBear3030 (Jun 9, 2010)

My quality of life will not be effected at all... if at all it will be better. I was hyper and crazy... now I'm still been crazy through all this, but I see the light at the end of my tunnel finally! Its been a bumpy road, but a year from now I'll look back and realize it was MUCH easier than I thought while actually going through it.

As far as a new job... that would depend on if you can get time off. You dont need much at all, so definately negotiate that when you get an offer. I'd say if you are a go-get-er type one week for surgery, one week for RAI. If this job is something you've wanted and deserve then go for it!

My best advice would be to stay CALM and yet be proactive. I have been an over researcher, which caused me a bit of anxiety, BUT also gave me a ton of information moving on. In hindsite, I know that I would not have been as informed during this process had I not been armed with knowledge of what to ask.

After my surgery they started me on Synthroid right away. I am not coming off my meds for RAI as they are using thyrogen shots for my RAI treatment. Its basically a synthetic TSH so that your body does not have it go hypo on its own. Definately ask about that!

And Phil said it perfectly... that little gland raises alot of hell for sure!! LoL!


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## havehope (Sep 26, 2010)

An update:

Today I saw a surgeon. I don't know how you can tell if these guys are good or not, but even though he's young (about 40) he looked me in the eye the entire time we talked and answered all of my questions. He did a physical exam and told me he didn't find anything that alarmed him.

I've scheduled surgery for October 18 and will do RAI after Thanksgiving. Like CareBear, my doc will put me on Synthroid so I will not need to come off of meds for RAI. The doc also said attitude is huge in getting through this, and I plan to have the best attitude ever.

I also got copies of the reports from two ultrasounds I had. One was in March and one was a couple of weeks ago. The weird thing is they estimate the size of the nodules differently. The earlier u/s had them twice the size as the one I had two weeks ago. Anyone else experience this?

Thanks for your stories. You give me hope!


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## CareBear3030 (Jun 9, 2010)

With such small areas I wouldnt be too concerned with the change... two different people and two different machines... unless it was 4cm vs. 8 cm... or something like that??

My first ultrasound showed 1.4cm, second 1.6cm.... when it was actually taken out and sent to pathology, it turns out it was just over 2cm. When asked if it grew that quickly, he said no, the ultrasounds were performed two different place and they are not always 100% perfect in measurements. If you have ever had a child its the same there too. They tell you the baby is measuring to be consistant with an 8-9lb baby and yet he is 7lb 6oz.

Of course bring it up to your doc, but I wouldnt worry too much over it.


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## Hope57 (Sep 16, 2010)

Good luck havehope,
Im due to see surgeon this Monday and hope my wait for surgery won't be too long. I think, from what other's have said, that cancer is alway's classed A.S.A.P. on the hospital waiting list. On my ultrasound my thyroid nodule is 1.8cm and the spread to they lymph gland is also 1.8cm, but as CareBear said, once removed it may be different measurement. Is your surgeon going to take some lymph glands to test also?


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