External Beam Radiation for Aggressive Papillary?

zipperneck2012
zipperneck2012 Member Posts: 27
in Thyroid Cancer #1
First some background:

I'm a 26 year old female

Background: Diagnosis of Papillary Thyroid Cancer March 17, 2011

Treatments: Radical Neck Dissection on March 22, 2011. The surgery took 8 hours. They removed my entire thyroid, one of my jugular veins, and 55 lymph nodes ranging from the base of my skull to my breast bone on the left side. Of the 55, +20 came back positive for cancer.

I had my first round of RAI in August of 2011, with 207mci.

Tracer dose of 5 mci RAI in February 2012 for my 6 month follow-up showed (after going hypo and low iodine diet for preparation) showed no uptake.They also ordered an ultrasound on my neck.

During the ultrasound, they saw an 8mm spot in my thyroid bed and biopsied it. It came back positive for Papillary thyroid cancer.

Having received an RAI scan, and knowing that this spot was cancer, naturally my doctors were looking for this spot to light up on the scan. It didn't. They checked twice with two separate scans. According to my doctor, this means that any remaining cancer is no longer reactive to the RAI.

Second surgery, February 2012: the cancer was back further than expected and they had to do a live ultrasound during surgery to find it. It was 8mm wide, but grew backwards about 1 centimeter. It was wrapped around my left laryngeal nerve (that controls the left vocal cord), so that had to be removed. It was also growing into my windpipe, so a portion of my trachea was removed and I was hospitalized for a week with a trach in.

My doctor has advised me to get external beam radiation since my cancer is behaving so aggressively and is no longer RAI avid. He said without XRT (or EBR), the chance of recurrence in my neck within a year is 100%.

I will be beginning radiation towards the end of the month, 5 days a week for 6.5 weeks, and was just wondering if anyone could give me an idea as to what I can expect? I know that I will get a very bad sore throat...

Is there anyone else out there like me who has a "normal" papillary thyroid carcinoma that is behaving aggressively?

Comments

  • alapah
    alapah Member Posts: 287
    #2
    yes, i have aggressive pap thyca
    Pretty sure I responded to you on another site, though I can't remember where...
    My thyca had not been encapsulated and was adhered to the trachea and though they scraped it in surgery, EBR was recommended as a follow up to my RAI. I had 6 weeks of EBR to my neck in a pattern that included a 'dip' into my chest to cover the trachea as much as possible. Here are links to posts I wrote in 2010 offering advice: http://csn.cancer.org/node/202742, http://csn.cancer.org/node/204468. You can cut and paste those into the URL line of your browser. Sorry they aren't hot linked here.

    Sore throat, raw skin and exhaustion are common. Because so few thyroid patients ever go through EBR, I'd actually recommend posting your questions about it on a throat cancer or esophageal cancer board as there may be more people on those message boards with advice to offer. I was staying at an American Cancer Society Lodge while going through my EBR and it was actually those patients that helped me out.

    best to you.
    eileen
  • zipperneck2012
    zipperneck2012 Member Posts: 27
    #3
    alapah said:

    yes, i have aggressive pap thyca
    Pretty sure I responded to you on another site, though I can't remember where...
    My thyca had not been encapsulated and was adhered to the trachea and though they scraped it in surgery, EBR was recommended as a follow up to my RAI. I had 6 weeks of EBR to my neck in a pattern that included a 'dip' into my chest to cover the trachea as much as possible. Here are links to posts I wrote in 2010 offering advice: http://csn.cancer.org/node/202742, http://csn.cancer.org/node/204468. You can cut and paste those into the URL line of your browser. Sorry they aren't hot linked here.

    Sore throat, raw skin and exhaustion are common. Because so few thyroid patients ever go through EBR, I'd actually recommend posting your questions about it on a throat cancer or esophageal cancer board as there may be more people on those message boards with advice to offer. I was staying at an American Cancer Society Lodge while going through my EBR and it was actually those patients that helped me out.

    best to you.
    eileen

    :p
    Yeah, I think I do remember you....was it stupidcancer.com maybe?? Thought I'd check the thyroid cancer thread before moving on to other ones... I did a search for External Beam Radiation and didn't find much useful info.
  • alapah
    alapah Member Posts: 287
    #4
    zipperneck2012 said:

    :p
    Yeah, I think I do remember you....was it stupidcancer.com maybe?? Thought I'd check the thyroid cancer thread before moving on to other ones... I did a search for External Beam Radiation and didn't find much useful info.

    ah
    i hadn't heard of that site! Cancercompass is one i am on sometimes (as Fireweed).
    another good group for complicated thyroid cancer cases is a yahoogroup called adv-thyca. some folks there have had EBR.
  • zipperneck2012
    zipperneck2012 Member Posts: 27
    #5
    alapah said:

    ah
    i hadn't heard of that site! Cancercompass is one i am on sometimes (as Fireweed).
    another good group for complicated thyroid cancer cases is a yahoogroup called adv-thyca. some folks there have had EBR.

    I am on the yahoo group... I
    I am on the yahoo group... I think that's where I know you from! Small world huh ? :)

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