papillary cancer with extracapsular extensions

Hi, Roselady... sorry you are going through this.

It is not uncommon to have a pathology report read 'incompletely encapsulated', or 'extracapsular extensions', and, provided this is treated properly and thoroughly with both surgical technique and radioactive iodine treatment(s), there are no reasons to believe you would be at greater risk for a recurrence down the line. A certain percentage of us will end up having persistent and/or recurrent disease - but this isn't something that can usually be forecasted at this early stage (unless it was poorly treated surgically and/or the doctors neglected appropriate follow up down the line). Some pathologists cite 'extracapsular extensions' as anything that is outside the thyroid capsule itself, so even the terminology can mean different things in different areas to different pathologists. Please don't worry about this too much at all.

At the same time, with thyroid cancer, we must always be diligent with our follow up, as thyroid cancer, even the smallest and lowest risk early findings, can return a few or many, many years later and become a much more serious finding at a later date. We must always have follow up, for the remainder of our lives, ensuring IF there is ever a recurrence that it is caught quickly and treated rapidly. The most serious types of thyroid cancer evolve from cancerous cells left to evolve - so we must not let that happen.

This is an excellent document - quite clinical, built for medical professionals, but has some excellent flowcharts of recommended treatment protocols from the NCCN:
http://www.nccn.org/professionals/physician_gls/PDF/thyroid.pdf

I had 'incompletely encapsulated' follicular variant - and have now had a clean scan, as of a year ago January.

With thyroid cancer, the encapsulation is not a big issue, providing the tissues uptake radioactive iodine (ie are visable on the scans, and then absorb the radioactive iodine treatments). Often, things like our age, the size of the biggest finding (ie less than 2cm, or greater than >4cm), vascular invasion and distant mets are more critical - and even lymph node spread for us is not considered distant mets - mets would entail spread to bones, lungs, etc.

Please don't worry about recurrence at all. The best thing we can do is to have at least annual follow up, for the rest of our lives, ensuring that IF it every comes back, that it is caught rapidly. The best advice I received at about the same stage as you are now was to try to take it one day at a time, one treatment at a time, one step at a time... worrying doesn't help, and can really get us wound up otherwise.

I had an excellent link (before my computer crash...argh!) with all the pathology data, but cannot locate the website at the moment.... will keep checking, and if I can track it down will post it here for you, too.

Just be kind to yourself for now, and try to set your worries aside as much as you can while you go through the hypo and treatment stages. I know it's hard not to try to look far into the future, but for now, that will just add to your stress - honestly.

Roselady16506 said:

Thank you Rustifox for your very informative and assuring response. I appreciate the helpful link you included in the message and feel better knowing that the pathology report I received doesn't necessarily mean I will have a recurrence. Right now I am getting ready for RAI, will be glad to have it over with! Thank you again.

I'm glad it helped a little, Rose...and in preparation for your RAI treatment, this link is very helpful:
http://www.mythyroid.com/radioactiveiodinecancer.html
These guidelines are from the UK, but have some good info in them (just click 'open' when the dialogue box appears):
http://www.cancernorth.nhs.uk/portal_repository/files/ncct_radioiodine.pdf
and here is one more:
http://www.radiologyinfo.org/en/pdf/radioiodine.pdf

All the best with your treatment! The time in isolation after treatment doses is tough for us, but it will be soon be over, and in 6-8 weeks, once the hormones are replenished in your body, you will start to feel much, much better. Sending healing thoughts and a hug your way!