F*ck.

I need to vent. I need to get it all out there...But every time I start I just want to scream F*CCCCCCCCCCCCCCCCCCCCCCCCCCKKKKKKKKKKKKKKKKKKKKKKKK, and then sit down and cry for a while, because this isn't how things are supposed to be and this isn't how things were supposed to go AND IT SUCKS.


March 17, 2011 I was diagnosed with Papillary thyroid cancer. March 22, 2011 they took it out...and by "it" I mean my thyroid, a jugular vein, 55 lymph nodes ranged from the base of my skull to my breast bone- of which over 20 came back positive for cancer. The surgery took 8 hours. The scar formed a keloid. I had more surgeries in the following months to remove kidney stones that resulted from the calcium supplements. I was left with nerve damage, and significant damage to my shoulder that has taken about a year to reverse, though I still have strength issues. I had an AMAZING surgeon, it's just where he had to cut.

My treatment had to be postponed because of a scan I had in early Feb. 2011 that contained a of iodine. In July of 2011, I went off Synthroid and onto a drug called Cytomel in prep for therapy. I got tired...very very tired...then I had to quit the cytomel and take no medicine for 2.5 weeks and do a low iodine diet. The diet was bland, but manageable. Being off my medicine was horrible: migraines, nausea, always cold, always dry...puffy eyes, puffy face, stomach pains from decreased digestion, no energy..all I wanted to do was sleep, but i couldn't get myself to sleep through the anxiety, and my muscles hurt all the time.

Then I had the radioactive iodine- the thyroid cancer treatment of choice- 200 mci, the highest dose my doctor will start someone on. Felt a little nauseous, I now have some issues with my saliva glands sometimes, but it felt good knowing the cancer was dying...knowing that the radioactive iodine was catching it wherever it was and killing it.

I have been off my medicine and on the LID again for the past 2.5 weeks in preparation for my first post-treatment scan. This past week I went for my check up scan to see how well we cleaned up the first time. I was supposed to be told that "the scan shows a bit more cancer, so we'll need to give you another round" or "looks good for now, see you in another 6 months so we can look again".

I wasn't supposed to to have to get a biopsy during my ultrasound and for them to tell me it's the cancer. I wasn't supposed to be told I'll need another surgery. I mean the first one was 8 fucking hours, and my surgeon was BEYOND thorough. I wasn't supposed to hear from my surgeon that that cancer they found on the ultrasound is wrapped around my vocal nerve and he has no choice but to cut it out because he tried really hard to save it last time and it's already barely hanging in there.

I wasn't supposed to be told that nothing is lighting up on my scan. That this spot that they know is cancer, should be sucking up the radioactive iodine they gave me and it's not. I wasn't supposed to be told that this means the cancer I have has become RAI resistant after just one treatment.

I wasn't supposed to be told that after I heal from this next surgery that I was never supposed to have, that they'll need to do External Beam radiation on my throat....and that it will hurt very very badly...that even drinking water will be excruciating for months.

And I'm not supposed to know that if this fucker living inside my body, this cancer that consumes my cells from the inside out and turns them to necrotic tissue, that if has metastasized to my lungs or bones that it is going to be extremely hard to kill without the use of RAI. That I will have to do experimental therapies to see if we can get it.

I'm 26, I have papillary thyroid cancer, and it was SUPPOSED to be "the easy one", or so I was told. This isn't how it was supposed to go.

Comments

  • 9 Comments sorted by Votes Date Added
  • Wow, I am sorry you're having to deal with that! :( Yeah...easy...easy is when you have one surgery and are done (or as done as cancer ever gets). Thankfully that's the majority with thyca, but there are plenty of us out here who don't really qualify for that. Hopefully it hasn't spread anywhere else and zapping the neck will do the trick. Stupid cancer.
  • So sorry about what you are going thought and I can totally relate to your anger. It sucks! Did you try maybe going for a second opinion? Hopefully this next surgery isn't as long. Did you get a chest and neck CT after your treatment? Exactly one week after my RAI treament I had my post treatment scan so I wouldn't have to go on the LID again or take another tracer dose or RAI. During that time they gave me a chest and neck CT scan. I hope all goes well for you. Praying for you. Keep us posted
  • I'm so sorry about what you're going though. *hugs* I really hope things get better and soon!
  • Maryann;6293 said:
    So sorry about what you are going thought and I can totally relate to your anger. It sucks! Did you try maybe going for a second opinion? Hopefully this next surgery isn't as long. Did you get a chest and neck CT after your treatment? Exactly one week after my RAI treament I had my post treatment scan so I wouldn't have to go on the LID again or take another tracer dose or RAI. During that time they gave me a chest and neck CT scan. I hope all goes well for you. Praying for you. Keep us posted

    yeah, I had all of those scans too. There is a small spot on my lung we are watching that they found back then. This was my first 6 month follow-up. I feel like a second opinion is moot. I mean, they know the spot on my neck is cancer from the ultrasound and biopsy, and they can see it isn't taking up the iodine. Also, my oncologist is Dr. Ain who is, supposedly, the best in the country. I just happened to get referred to a surgeon who is very very good friends with him and thus referred on to him, so I'm lucky to have an amazing doctor and I fully trust his judgement, it just sucks. Bad. :/ He actually mentioned this possibility on my first visit with him, just based on how my cancer appeared to be behaving in their lab, but I think we were both hoping it wouldn't ACTUALLY come down to doing this treatment at the exclusion of RAI.
  • Thanks for all the encouragement guys <3
  • Don't be afraid to scream if you need to. It's surprisingly therapeutic. When I'm super frustrated, I find that screaming obscenities helps me calm down so I can then articulate what is really bothering me. Just don't scream them at passers by.
  • Oh man. I'm so sorry to hear about all of your troubles. *hugs* how are things going now? I see its been about 2 weeks since this news.
  • Thanks

    Thanks guys. I guess I'm doing okay now, I had my second surgery..... The 8mm mass they saw on the ultrasound was further back than they anticipated...they had to do a "live ultrasound" during surgery to find it again. It was about 8mm in diameter, but it stretched back a full centimeter and was "grossly adhered" to my trachea as well as my left laryngeal nerve. The nerve came out, which was expected, but they also had to cut a hole in my trachea to make sure they removed it all (this all grew in the last 6 months!). So I've been in the hospital since Friday with a trach tube in. I couldn't talk at all for 3 days. They kept downsizing the tube and Monday I could talk again a little bit. I no longer have a tube in my neck, and got released to go home yesterday. I have a bandage over the hole and have to put my fingers over it when I speak so that it will heal. I see my surgeon on Tuesday to discuss pathology and whatnot, so here's hoping for the best!! Thanks for caring <3