Multifocal Papillary Thyroid Cancer, spread to lymph nodes and maybe more

New Contributor

Multifocal Papillary Thyroid Cancer, spread to lymph nodes and maybe more

Hi All,

 

I'm a 43yo male in Brisbane, newly diagnosed with Papillary Thyroid Cancer (PTC).  Most cases of this cancer are mild and easily treatable but mine seems to be more "aggressive", much more.  

 

I noticed a lump in the base of my throat.  Read online about it and saw that 95% of these things are benign which was reassuring.  I went to my doctor who said the same thing and he then referred me to get an ultrasound.  Ultrasound came back saying I had 2 thyroid nodules, one left and one right, both about 2cm with "interesting" features that warranted a fine needle aspiration (FNA).  I had the FNA and pathology came back with a diagnosis of PTC for the right side nodule.

 

So now I had to deal with a cancer diagnosis but I was still ok because PTC is easily curable for most people.  The usual treatment is thyroid removal (TT), then you have regular checkups but just carry on with life.  Unfortunately, during surgery my surgeon saw the cancer had spread to my central lymph nodes, and did a central node disection at the same time as my TT.  Pathology results came back yesterday and the cancer had spread to 15 of 16 lymph nodes.  Alot.

 

Now i go for more ultrasound scans on my lateral lymph nodes and a CAT scan on Friday to see just how far this thing has spread.  It seems like everytime I get news, it's bad news, so I'm dreading the results of the next round of tests.

 

I'm confused about how to act.  Do i just carry on with life as normal.  Do i radically change how i live, in an attempt to cure myself of this?  Do I tell my kids?  What's strange is I feel somehow responsible for this.  I feel like my behavior must have caused this, or my mindset, or my diet, so I feel kind of ashamed of having this disease, but I also know that's ridiculous.  Could it have been an x-ray i had when i broke my collar bone back in high school?  There's no way of knowing which is frustrating.

 

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Cancer Council Team

Re: Multifocal Papillary Thyroid Cancer, spread to lymph nodes and maybe more

Hi there @pants and welcome to the Online Community.

I wonder if you might be interested in our Cancer Connect program which provides you with the opportunity to talk one-on-one over the phone with a trained volunteer who has had thyroid cancer. It might help as they can provide practical information and emotional support and hope. Many people newly diagnosed with cancer find this one-to-one support very beneficial.   For more information please email your phone number to ccconnect@nswcc.org.au and our staff will contact you and tell you more about how it all works.

 

In the meantime, does anyone have any advice as to how to deal with a new diagnosis and the uncertainty around that?  Maybe someone has some insight as to how to deal with the endless scans and tests.

Kind regards

Gabrielle

Online Community team member

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Occasional Visitor

Re: Multifocal Papillary Thyroid Cancer, spread to lymph nodes and maybe more

Hi @pants,

I completely understand how you feel, though I'm in a slightly different boat.

My story:  I had a TT back in 2009, while pregnant with my daughter & had the radiation therapy a couple of months after she was born.  2 years later my another dose as my blood levels were high (but I was "scan negative") - last July another, as my levels were up again and had been consistently rising & a PET scan showed a possible lesion in my hip. Turned out it was a metastasis of the thyroid ca, with multiple micro-metastases in my lungs. (Mmm, cancer in my hip bone and lungs? I nearly crapped myself - but at least it's thyroid cancer and not a whole new variety.) So, another, higher, dose last month, which may have knocked out the little buggers in the lungs BUT the hip may be bigger. Off for my first ever MRI soon to have a better look at that, as I'm not having other symptoms of that lesion getting bigger (eg pain or limited movement in the joint).  I have regular neck ultrasounds (always clear) & less regular CT scans of various bits (neck, hips, lungs) & now a couple of PET scans under my belt.

ATM I'm tired of having scans every 6mth or more, and the last RAI131 dose made me fell awful for a few days - having to go off thyroxine for 5 weeks was much worse, mind you! 🙂  BUT it's all done to catch anything sooner than later, which I'd prefer to do considering I have a little one to look after (on my own for the last year).

Regarding my child, I tell her that I have an illness that means I have to go to hospital every now and then (for a few days) to get "special medicine" and that there are rules about this medicine (like staying 1-2m away for 1-2 wk after treatment). Luckily I have family who help me look after her then.  I don't go into detail about the cancer - I don't even use the word, although I'm pretty sure she's heard me use it talking to other adults - and I tell her that I'll always be there for her (even if sometimes I'm scared that that's a lie). Most importantly, I try to keep it positive so that she's not scared by it - I feel healthy, regardless of what those pesky thyroglobulin levels are!

I understand your frustration - especially about wanting to know how it was caused. I had full jaw dental ex-rays in the 70's, now considered a possible cause; I ate very little salt in my 20's and 30's - could that have done it? Someone even suggested it was because my throat chakra was blocked from not speaking up for myself enough. Honestly, there's no way to tell for sure and your energy is probably better spent thinking what you want to do NOW rather than what happened then (I'm still working on this, mind you).

As for radically changing your life - that's up to you. I went vegetarian for a while, but I don't know if it helped.  I'm trying meditation, as I think stress could be a contributor or trigger. If something feels right, try it, I say.

I really wish you all the best @pants (& I love your handle).  This really is a journey. And I hope my story, albeit lengthy, has helped in some small way.

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New Contributor

Re: Multifocal Papillary Thyroid Cancer, spread to lymph nodes and maybe more

Hi @JenniD,

 

Thanks for sharing your story.  You are a fighter and an inspiration for me.  

 

Looking back, i know it's impossible to identify any one thing that could have caused this.  Was it a collar bone xray I had in high school?  Was it dental xrays?  Did I binge drink too much?  I'll never know and it's irrelevent.  All I can do is look forward now and battle hard, like you have been doing.  

 

I find now that I am really appreciating the little things, especially spending time with my daughters.  Like tonight, I just sat on the couch and watched a movie with them.  Funny that I never realized how those times are some of the best times you have, until I got this perspective.

 

Not sure if I can help you, but it's good to know I'm not alone, that someone out there understands.

 

Cheers,

 

Pants

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