Aa
Neck Swelling
It has been a long time since I last posted here.....had papillary thyroid cancer in 2006 - had total thyroidectomy in Aug of '06 then RAI 175mci and "clean" scan in November of "06.
In July of 2007, I felt a hard lump on the left side of my neck and of course, decided to have it checked out. After scan, found three large nodes and had biopsy done...cancer wasn't gone after all....Surgery again Dec '07 - radical neck dissection. Took 34 lymph nodes - 6 were cancerous.
I have healed pretty well and haven't had alot of problems - other than the usual stuff....soreness and stiffness - but still doing some neck rolls and shoulder rolls to keep everything smooth!
Yesterday, I started with my neck swelling and now my ear is huge and my face on that side is puffy. I am wondering if maybe I am coming down with something and since I don't have any lymph nodes in that area, maybe that is causing the swelling....does anyone have any idea what could be causing this? I really wish that I could have one year without having to worry about cancer! I certainly hope 2008 is going to get better!
Thanks so much for any advice you can offer!
Giggles
In July of 2007, I felt a hard lump on the left side of my neck and of course, decided to have it checked out. After scan, found three large nodes and had biopsy done...cancer wasn't gone after all....Surgery again Dec '07 - radical neck dissection. Took 34 lymph nodes - 6 were cancerous.
I have healed pretty well and haven't had alot of problems - other than the usual stuff....soreness and stiffness - but still doing some neck rolls and shoulder rolls to keep everything smooth!
Yesterday, I started with my neck swelling and now my ear is huge and my face on that side is puffy. I am wondering if maybe I am coming down with something and since I don't have any lymph nodes in that area, maybe that is causing the swelling....does anyone have any idea what could be causing this? I really wish that I could have one year without having to worry about cancer! I certainly hope 2008 is going to get better!
Thanks so much for any advice you can offer!
Giggles
Okay - now I'm totally confused. I know there are some strains of thyroid cancer that are "treatment resistant" meaning they won't absorb the iodine (and radiation). So . . . if you have resistant papillary *why* did they give you RAI?
Usually it is medullary an anaplastic cancers that won't absorb I-131 or I-123 but there are some strains of papillary and follicular. Unfortunately
I can see why they want the PET scan. If the cancer won't absorb iodine it will absorb sugars (because of the increased blood supply and their need for energy) and the radioactive sugar used will show cancers (usually). Will they be using calcitonin levels as your cancer marker in addition to your Tg?
****-o yeah, get that PET scan and a CT scan. Is it possible they misdiagnosed the *type* of cancer?
Whine away hon - you have every right to. I'll bring the cheese. We'll have a "We are tired of being the exception to the rule!" party.
(((HUGS)))
Usually it is medullary an anaplastic cancers that won't absorb I-131 or I-123 but there are some strains of papillary and follicular. Unfortunately
I can see why they want the PET scan. If the cancer won't absorb iodine it will absorb sugars (because of the increased blood supply and their need for energy) and the radioactive sugar used will show cancers (usually). Will they be using calcitonin levels as your cancer marker in addition to your Tg?
****-o yeah, get that PET scan and a CT scan. Is it possible they misdiagnosed the *type* of cancer?
Whine away hon - you have every right to. I'll bring the cheese. We'll have a "We are tired of being the exception to the rule!" party.
(((HUGS)))
I forgot to mention (how could I forget?!) that I have treatment resistant papillary. I did the RAI and had a clean scan....however, after doing the thyrogen shots last year, my Tg was 0! Nothing showed. Then they did the WBS and it showed no uptake. Doctors at UNC Chapel Hill - Lineberger Cancer Center said that they had a few other people like me.....guess I am just going to be different and my cancer is going to be stubborn.
I really wish I could go atleast a year before having to deal with this all over again. I am drained physically and emotionally these days.
Since I posted my last question, I have been to the doctor and she put me on antibiotics but also sent me for CT scan. She sent my results to UNC and my oncologist and the nuclear medicine doctor want me in for PET scan....I swear, this is a never ending battle! I hate to sound so whiney about this - I mean, they tell you this is the "best cancer to have if you have to have cancer"....so I try to be thankful that I do not have something with no chance of survival. But this just interferes with my life on so many levels. I am a single mom, I work at the dept of social services (high stress - but I actually like my job) and I am taking some classes at night to finish my degree.
Ok, I'm done whining now....just need to get that out with someone who has some sense of what this is like for me! Thanks for listening and responding!
Giggles
I really wish I could go atleast a year before having to deal with this all over again. I am drained physically and emotionally these days.
Since I posted my last question, I have been to the doctor and she put me on antibiotics but also sent me for CT scan. She sent my results to UNC and my oncologist and the nuclear medicine doctor want me in for PET scan....I swear, this is a never ending battle! I hate to sound so whiney about this - I mean, they tell you this is the "best cancer to have if you have to have cancer"....so I try to be thankful that I do not have something with no chance of survival. But this just interferes with my life on so many levels. I am a single mom, I work at the dept of social services (high stress - but I actually like my job) and I am taking some classes at night to finish my degree.
Ok, I'm done whining now....just need to get that out with someone who has some sense of what this is like for me! Thanks for listening and responding!
Giggles
Oh Giggles, I'm so sorry!
Did they do another course of RAI after the neck dissection? If not, ask why! Your recurrence would put you at, at least, Stage II if not Stage III cancer and they *should* have done another course of RAI.
What are your Tg levels??
They *at least* need to do a WBS and Tg on you to see if it spread anywhere else besides lymph nodes.
I know that salivary glands often get messed up after thyroid problems. My sister nearly had to have hers removed because of the problems. I'm wondering if that is what is going on with your ear/face.
Call your doctors and insist on more testing. Papillary carcinoma has a preponderance for spreading into the neck and chest area - not just lymph nodes.
Wow - I'm so sorry.
Utah
papillary carcinoma '03, recurrence and RAI '06
Did they do another course of RAI after the neck dissection? If not, ask why! Your recurrence would put you at, at least, Stage II if not Stage III cancer and they *should* have done another course of RAI.
What are your Tg levels??
They *at least* need to do a WBS and Tg on you to see if it spread anywhere else besides lymph nodes.
I know that salivary glands often get messed up after thyroid problems. My sister nearly had to have hers removed because of the problems. I'm wondering if that is what is going on with your ear/face.
Call your doctors and insist on more testing. Papillary carcinoma has a preponderance for spreading into the neck and chest area - not just lymph nodes.
Wow - I'm so sorry.
Utah
papillary carcinoma '03, recurrence and RAI '06
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