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Lessons Learned? Papillary Cancer

iggymurphy
Posts: 34
Joined: Sep 2011

I found out that I have papillary cancer late Friday. I am just diving into finding out what all this means for me, but I wanted to ask those that have been there for a little advice or "lessons learned" or "wish I would have done that from the begining". They are going to do another ultrasound this week to see if they can see if it has spread into the lymphnoids or neck, and a total thyroidectomy as soon as they can schedule it in.

Trying to stay positive with my "good cancer" but would love to hear back if anyone has some good advice for me.

CLRRN's picture
CLRRN
Posts: 126
Joined: Jun 2010

Welcome to the CSN board!

I'm sorry that you've have found your way to this board but glad you are here. You will find members to be not only helpful and full of lots of resources but also honest as they (we) share our personal experiences.

There are lots of websites but this one is what I consider "reputable". I'm also going to suggest visiting www.thyroidboards.com and www.thyca.org. The thyca website is referenced by my endo and the publications on thyca are excellent. In addition, I personally purchased a book referenced on thyca called "Thyroid Cancer, A Guide For Patients" . I found this book to be an "easy read" and has helped me through my journey (so far). The thyca website has a documents on "questions to ask your doctor". I printed it and hightlighted the questions for my endo.

I was recently diagnosed as well.
Jun11: Primary care-felt like something was in my throat, constant clearing throat and felt a lump on the left side of my neck. Ultrasound showed a left thyroid nodule and 3 on the right.
Jun11: Fine Needle Aspirate (FNA) was inconclusive however "raised the possibility of neoplasm"
Jul11: Consult w/ENDO and ENT and both recommended partial thyroidectomy since most nodules are benign
16Aug11: Left partial thyrdoidectomy- pathology proved them both wrong...follicular carinoma
23Aug11: Rest of thyroid removed and started on Cytomel
Scheduled for radioactive iodine on 13Oct11.

Advice/lessons learned:

1) My advice is to familiarize yourself with this disease and the function of the thyroid. There is so much to learn about labs, how your body responds to medications and adjusting without the thyroid can be challenging. I call it a "PROCESS".

2)You will find that most tend not to refer to thyroid cancer as "the good cancer". Bottom line, its cancer and scary and you have to remain vigilant with your health care. Yes most thyroid cancers are treatable and have a high cure rate but it's scary.

3) You want to have a good relationship w/your endo or your treating physicians. Most people think you just "take a pill" and it's all better. If that was only true we'd all be in a better place.

4) Get a step ahead. You know the thyroidectomy is next, now you want to know what happens after that...what meds will you be put on after surgery, will you get radioactive iodine. If so, ask your endo NOW about thyrogen(a med that helps your body get to a state needed before radioactive iodine and there is a world wide shortage).If it's not available, you will do it the "au naturel way"...What med if any will you be on after surgery.

5) Have patience. Nothing happens quickly including adjustment to meds...again, a process.

It can be overwhelming but you are amongst a very supportive group!!

That's all for now. Good luck in your journey and know that we are all here to help!!! Keep us informed.

Chris

sunnyaz
Posts: 582
Joined: Oct 2010

Sorry to hear of your diagnosis. I too had Papillary Thyroid cancer. Diagnosed in October 2009. You have come to the right place for support, information and help. Also, check out www.thyca.org. Lots of good information there. You would benefit to read some of the posts on the boards if you haven't already.

There is a lot to know but as you go through your battle; you will have some questions, just ask as they come to you. I see you got the "this is a good cancer" routine from your doctor. This is one of the statements that we have all heard and rebel against. I hate to tell you, this is still cancer and it doesn't make it any less difficult. You will be on medication the rest of your life. Sometimes they get the dose right the first time, sometimes it takes a few tries. Get used to needles if you aren't already. I have been through three surgeries, two neck dissections to remove lymph nodes and two RAI (Radioactive Iodine) Treatments and my cancer was caught very early (by my own insistence and persistence). I am in the medical field and knew the signs and symptoms. Even then, it took some convincing of my Primary care doctor to take appropriate action.

I am "B-RAF" positive. You will want to ask you doctor to test for this genetic mutation when he does your Thyroidectomy. The gene makes our cancer more aggressive and harder to treat. Aggressive treatment is the best approach if you are positive. Forty-three percent of people have the B-RAF mutation gene.

If I had any other advise at this point, it's to make sure you have several good doctors working for you. I always recommend an Oncologist that specializes in Endocrine cancer if one is available in your city. Research them and pick one that you like and will answer your questions. I got lucky and found an Oncologist/Endocrinologist/Surgeon where I live. I wish I had found him before my third surgery or I might not have had to go through the third surgery and second RAI. My ENT botched the second surgery so my regular Endocrinologist took him off of my case and assigned me to the new specialist. This was the best move for my prognosis.

There are those that have their first surgery, one RAI and are done. Then there are those that have recurrence. I hope you are one of those in the first scenario.

Ask any questions you like and know that we are all here for you. Just don't be fooled by the "this is a good cancer" because there is no good cancer.

Blessings and best wishes,
Julie-SunnyAZ

nasher
Posts: 507
Joined: Apr 2010

ok here goes...

my story is here

http://csn.cancer.org/node/204377

this details my first year with discovery to treatment of papillary and follicular thyroid cancers

as far as misconceptions and life lessons I posted here as well

http://csn.cancer.org/node/225537

there are also a lot of posts about "good cancer" misconception.

please ask questions from us we will help get you up to speed
every question you come up with and every answer you come up with will help other people as well as yourself

print out 2 copies of every one of your questions to the doctor hand one to the doctor and discuss them.

any questions and answers you still have questions about or want to discuss with us post here... at least try to post the questions we might be able to rephrase the questions to get a more useful answer and may be able to give you better knowledge.

always remember its your body and you need to be the one making decisions about it not the doctors... they can give you advice and schedule blood tests and surgeries and the like but you need to be in charge of your own treatment.

iggymurphy
Posts: 34
Joined: Sep 2011

This is all really great information/advise. Time to start educating myself! I am sure once I start reading info and talking to the doctors more I will have more questions. Thank you for taking the time to respond.

iggymurphy
Posts: 34
Joined: Sep 2011

They moved my surgery up to last Wednesday. They said they wouldn't test for BRAF because it wouldn't change the treatment. They told me before the surgery that they would take out the entire thyroid along with a few lymphnodes just to be safe. Lymph nodes looked normal during presurgery ultrasound and during surgery but came back positive for cancer. Now worried that there is more in there. They have no plans to go back in. Rai in 4 weeks. Will rai process show if any lymph nodes were missed?

amorriso
Posts: 186
Joined: Oct 2010

Knowing you have the BRAF gene or not may not change the treatment, but it certainly would mean you need to be much more aggressive in your follow up. I'd try again to have it done. I didnt, and am going to try to have the test for it (apparently they keep pathology samples here for about 1 year)

I'm thinking the scans after your RAI may show if there are any other nodes affected - cant be sure right now though - long day! Ultrasounds and PET scans can show them though.

Take one step at a time.

Hope recovery is going well.

JJ_2011's picture
JJ_2011
Posts: 14
Joined: Feb 2011

Hi Iggy,

I was in a similar position back in April. Even a month after my surgery I decided to ask my doctor to go back and conduct a BRAF test should I need to cross that "treatment bridge" again in the future. Even if you already have had your surgery they will still have your specimen in a medical storage locker. You can even have it sent out to a lab of your choosing.

Just a gentle suggestion. :)

teamwink
Posts: 97
Joined: May 2011

First of all, make sure you have a good support system and that you have a doctor that you trust - these are essential, as folks tend to minimize the whoel thyroid cancer experience (particularly those who have not been through it). You will probably feel like you'r eon a roller coaster at times, and that's OK. Joining a cancer support group in your area might be beneficial to help you learn from others who've been through cancer; many of us experience the same things emotionally - things that others don't quite understand. Surround yourself with good people who focus on what's best for YOU (not what's best for them).

With regard to the doctor, make sure you find one that focuses on YOUR needs - not his/her timeline or convenience. You need as much help and support as possible, and you owe it to yourself to find a doc that is willing and able to help you. Ask questions and constantly check in to make sure you understand everything (you know, pay attention to that little voice in your head that nags you!). Having a good doctor will eliminate a LOT of anxiety.

This forum is immensely helpful - it was far more useful than my first doc (hence the second rec). Good luck!!

lookingforspring
Posts: 14
Joined: Oct 2011

I heard, waaaay after the fact, that it would be good if everyone who goes in for a TT would be checked for Tg antibodies. Mine came back, on my 6-month post-RAI check, extremely high. It has now been established that I had hashimoto's before surgery; but had somebody checked the level of my antibodies, we wouldn't have had the extra worry when they showed up so strongly. It would be so simple to do . . . why don't they do it as a matter of course?

FLT292
Posts: 2
Joined: Feb 2012

I echo the sentiments expressed above about surrounding yourself with medical professionals that are there for YOU, they are out there and they are very easy to find if you look. I had a nurse call me up one day not long after my diagnosis and tell me that the cancer had spread to my lungs , brain, and bones. She told me this over the phone ! I insisted I come in to see the doctor, turnes out she had gotton my chart mixed up with someone elses and gave me the wrong information. Make sure you ask lots of questions as you are your own best advocate, be honest with your doctors as they can't help you if you don't give them specific infomation. You got lots of good advice above. Stay positive and surround ytourself with people who will FIGHT for you.

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