Howdy, Stranger!

It looks like you're new here. If you want to get involved, click one of these buttons!

Sign In with Google

Ask a Question

Thyroid Cancer Survivors!

No one has posted on this board! Is anyone else out there a Thyroid Cancer survivor?

I'm Paula, I was diagnosed with Papillary Cancer in May/June 2010 at age 21, I had surgery in June 2010, had RAI treatment in July 2010 & got married in August 2010. I also graduated college 2 weeks before I was diagnosed!
«1

Comments

  • 33 Comments sorted by Votes Date Added
  • Hi Paula,

    We have many Thyroid Cancer survivors in our group. I will encourage some of them to become active on this board!

    Jason
  • vivaviva Community Member
    Paula Merrill;563 said:
    No one has posted on this board! Is anyone else out there a Thyroid Cancer survivor?

    I'm Paula, I was diagnosed with Papillary Cancer in May/June 2010 at age 21, I had surgery in June 2010, had RAI treatment in July 2010 & got married in August 2010. I also graduated college 2 weeks before I was diagnosed!

    Hi Paula, I thought I left a message yesterday.. But I gues it didn't saved. Guess what? Me too I was diagnosed with Papillary Cancer in October 2010, Surgery on December and last week was my RAI. Oh I'm 27.
    You see we are not alone.. How are you??
  • I am another one... I was diagnosed in 04 and had surgery and RAI then (treatment) and three more times (just scans). Now I just do ultrasounds. RAI and I don't really get along - I had some really rare side effects - so I stopped doing that after I had 3 negative scans. I think I had papillary, but I am not sure. I was on vacation when I was diagnosed (based on a test taken before) and then I went straight to surgery and treatment once I got back.
  • Hi I am new to this group, I had TT on Oct 6th and found out that I had Papillary Cancer on the 11th of Oct. I had my RAI in Dec. and then body scan.
  • I was diagnosed in April 2010 with papillary carcinoma. Had a TT May 10, 2010, and radioactive iodine treatment (150) at the end of June. I Was 28 at the time of diagnoses and three weeks out from finishing college. I walked the stage on Saturday and then had my surgery the 2 days later on Monday.
  • Hey!
    I'm doing good now! I just got back on my parents insurance (because in NY we had to go off when we got married, but then on 1/1 we were able to go back on our parent's insurances), and I have an appointment with my endo in April, so I'm trying to figure out how my scan needs to be set up.
  • Glad you got back on insurance, Paula!!

    Read in NYTimes that the bill has been repealed. Regardless of politics, I was really into the no discrimination against pre-existing conditions rule...

    Heather - welcome! It always has bad timing, doesn't it? How are you doing now?
  • Hey guys! I have thyroid cancer as well! Diagnosed Feb 8th. Going in for surgery in just a week and a half! No idea if I need RAI yet but I guess I'll know more after my TT!
  • JayMrhJayMrh Community Member
    I am a thyroid cancer survivor as well. Was diagnosed January of 2010, TT February 2010, RAI March 2010. Had papillary thyroid cancer with follicular variants. I will be going in for my one year follow-up appointment in a couple weeks and am doing okay.
  • Hey guys! sorry I'm a bit behind the ball.. I just joined this site yesterday. I'm 22 and I too had papillary thyroid cancer, had surgery Aug 09, it spread to my lymph nodes, they took out a parathyroid gland accidentally so i can't absorb calcium... still, had iodine radiation in Dec 09, my body still hates me and they are looking into other reasons why it's freaking out, etc. etc. lol I'm graduating from my undergrad in two weeks from Ohio State.. it's definitely been a rough 4 years, but it feels good to be almost done! :)

    Look forward to getting to know you guys :)
    --Julie
  • Hi all,

    I'm new here! I was diagnosed at the end of Oct 2011 with papillary carcinoma, at age 21. I am on the road to recovery from my radical neck dissection and have my RAI treatment in January. I'd love to connect with people here.

    Kaylee
  • Hope your recovery is going well!

    I was going to mention this in response to your other post, but didn't want to take over the intro topic with too much thyca stuff. Thyroid cancer is a little weird; people either think "cancer, OMG!" and act like you're about to keel over, or they see you with all your hair and looking fairly normal and brush everything off like it's the flu. I've been dealing with it for about a year and a half now, and honestly I just don't tell people unless they really need to know. Makes things easier. The scars are bad at first, mine's about six inches across my neck, but now is so faded that I had a work friend tell me to my face that "You don't need health insurance - you're 22 and perfectly healthy!" Yeah, I got a good laugh out of that one :P

    Have you gotten the LID cookbook from thyca.org? It's really helpful, and it even has a recipe for iodine-free chocolate!
  • Hey! Thanks for replying :). Yea you're so right. I'm not sure how to handle it yet, I don't think. It all happened so fast. Being in college seems to be the most difficult part of this- people seem to not really want to understand. They say stupid things or just don't really care. Older people seem much more understanding and supportive.
    That's good to hear about the scars. I have two incisions. One is about four inches, the other about five. The incisions seem so clean that they should fade really nicely.
    I did get the cookbook. How was the LID for you? Difficult? Any recommendations?
    How did RAI go-- side effects??
  • I didn't find the diet that bad. It just made meals really boring.
    Going hypo wasn't much fun, although it didn't start to hit me too noticeably until the end of the second week. By the time I got back on my meds, I was cold all the time, forgetful, very tired, dizzyish periodically...the usual complaints. They faded pretty fast afterwards though. I didn't have any side-effects from the RAI at first. About six months later, however, my salivary glands started swelling up pretty badly, and that went on for a few weeks. Since then, even though they don't swell up anymore, they don't give enough saliva (I've heard this happens to people that get radiation in the throat area for other cancers too, not just RAI). I'm fine normally, but eating pretzels, bread, or anything dry is hard without water. As far as side-effects go, it's annoying but in the grand scheme of things not all that bad.
    RAI can make you shed a lot, and make your hair really dry too, but like the other stuff, it's temporary. A good hair dresser can work wonders with the dryness ;)
    You mentioned you have two incisions--did you have two surgeries? I'm going in for my second one next month, and I'm wondering if it's harder the second time around with all the scar tissue in there.
  • Okay, thanks for the information! I'm nervous for RAI, since I've heard some horror stories about salivary glands. I'm hoping my side effects are not too bad.
    I have two incisions because my tumor was so large. They think the tumor was growing behind my muscle before it protruded out to my skin- so they figure it had been growing for at least two years. I was only diagnosed 4 short weeks ago, and had my surgery two weeks ago. They figured the faster the better with treatment. Surgery went well though.
    What does your second surgery consist of?
  • Wow, two years! Good thing they found it when they did.

    I'm having a central neck dissection (modified radical). The first time I had the TT and right dissection, but since no center nodes showed cancer at that point, they left them alone as much as possible; the "new" cancer didn't show up until this summer. The only thing I'm concerned about is that my surgeon said there's a bit more chance of complications going in a second time. I just don't want to lose my voice since I work in a call center (although if it got me off the phones, it might not be such a bad thing...) Time will tell ;)
  • Oh okay.. I had a central and right dissection. They removed a ton of lymph nodes, since it had already spread. I'm sorry you have to go back a second time... such a crazy journey.
    My voice is still completely gone. I had a nerve specialist in my surgery to make sure there was no permanent damage done to my vocal nerve, but I was told my left vocal cord isn't working right. There haven't been any improvements, but I'm sure I'm just being impatient.
  • That stinks that your voice is still gone; the few people I've talked to who had the same surgery said it took them about six weeks to get their full voice back...hopefully you'll be shouting loud and clear in a couple more weeks :)

    Yeah, that's what I'm afraid of. I never lost my voice completely; it was just weak for about 10 days. Unfortunately, I"m the only one I've heard of that got off that easy.
  • @ Katydid

    Thought I would jump in on the surgery question: I had a total thyroidectomy and a central lymph node neck dissection with actually relatively few side effects. I never completely lost my voice and I remember being able to talk in the recovery room after surgery. I had a cough for a few days (Delsym worked wonders) and I sounded like Mickey Mouse for about a week, but other than that the central node dissection didn't put me out of commission for long. I had the TT + node dissection on a Monday and talked for an hour in front of a professor on Friday, and I just had to drink water during the talk to keep my throat moist. So I think that with a little luck you might be able to do call center work still.

    Having said that, I had an AWESOME surgeon and like someone else upthread I also had nerve monitoring done to make sure that my vocal cords weren't too damaged. So I was definitely given really good care during the CND and I am sure that played a role in the good outcome.

    Also, Katydid, can I ask what dose of RAI you had? I'm kind of worried about long term salivary gland effects because I'm a runner, and obviously getting your mouth dry every few minutes on the trail would be a bummer. I received 100 mCi and I was told that people at that dosage rarely ended up with permanent problems. If you don't want to share publicly I totally understand!
  • That's really good to hear! I had/will have a very good surgeon with intraoperative nerve monitoring as well, and I do think that makes a big difference. Everyone else I know went to smaller places, either local or UVA, and they didn't get off nearly as easily. They're all fine now, it just took longer to bounce back completely.

    I didn't have much RAI, only 73.9 mCi. The dry mouth doesn't bother me except when eating dry food, so although I'm not a runner I don't think it would be a problem. Besides that, I'm only a year out, so I doubt I've quite hit the "long term" mark; it might go away.
  • Hey Katydid,

    Wow, I am surprised you had salivary problems at 74 mCi! That really sucks, I'm sorry. I guess I'll just have to wait and see - I only had mine in July. Thanks for the info! I hope your central neck dissection goes well.

    Take care.
  • I'm receiving 150 MCi... I hear this is high.
    I was also told to stay up for 24 hours straight and suck on candies to keep my salivary glands moving.
    Did either of you do anything similar to this?
  • I was told to suck on sour candies, which I did off and on. Never heard of staying up for 24 hours though. Even if I had tried, I don't think it would have worked, haha!

    Medstudent, yeah, I had a pretty low dose...guess I'm just special lol. I've heard from plenty of people on other boards who don't have any salivary gland problems at all, so hopefully you'll fall into that category :)
  • kayleed;5772 said:
    I'm receiving 150 MCi... I hear this is high.
    I was also told to stay up for 24 hours straight and suck on candies to keep my salivary glands moving.
    Did either of you do anything similar to this?
    Hey Kayleed,

    Recommendations on this vary. I was initially all set to do the 24-hour lemon candy marathon, based on stuff I'd read. However, my radiation oncologist told me that there was some newer evidence that maybe sucking candy was not helpful so he told me not to do it or to start sucking 24 hours AFTER I took the radioiodine.

    If you PM me with your email (I am assuming there is a way to do that on this forum - correct me if I'm wrong) I can send you a few scientific papers on this.

    If I remember correctly, the paper in question that my rad-onc cited basically talked about two arguments:

    1. If you suck lots of candy, you will make lots of saliva, which gets the iodine out of your salivary glands faster so you have less damage to them.
    vs.
    2. If you suck lots of candy, you will make lots of saliva, so your salivary glands get more blood delivered to them than normal so they actually get MORE iodine. This is why my rad-onc told me to wait 24 hours - by then, you should have peed out most of the iodine anyway so THEN you start your salivary glands up by sucking candy and they will dump the remaining iodine.

    That said, there were definitely some methodological problems with the study so it's not as clear cut as I would like it to be, as a scientist or a patient. The impression that I got, both from my rad-onc and from the literature, is that people don't really know what is better. Which, as a patient, is SUPER frustrating because, seriously, I need my salivary glands for the next 60 years! Just tell me what to do! arrgh.

    I don't mean to overwhelm you with information so sorry if you're freaked out now. I'm not sure if you're at a big academic center, but if you are unsure about your oncologist's recommendations, maybe you could get a second opinion or take him/her the paper and ask them what they think of the arguments. That's what I did with my rad-onc - but I'm also in the field and I'm a student at the hospital I got treatment at so I'm pretty comfortable doing that.

    Let me know if you need anything - I'll try and check back here more regularly! Sorry again if I'm overwhelming you with info.

    M
  • Hey! I stuck with my endocrinologist's recommendation of sucking on candy for 24 hours and I didn't have any side effects.
    I'm sure everyone reacts differently to it, though.

    I'm still super hypo and having a really hard time getting through my days. How long did it take you to start feeling normal again?
  • Glad to hear it went well! I think I was feeling pretty good within a week or two, but I don't remember exactly. I was on a full dose (same I've been on since) of levoxyl though, but I know some endos start people off really low...don't know what your dose is, but if it's not quite right yet that could make a difference. Hope you start feeling better soon; being that hypo majorly stinks.
  • Hey all!

    Figured I'd jump in on all this as well, but I have to warn ya I've been on a super negative kick lately so I'm going to apologize in advance. lol

    Kaylee -- I too had a super high dose of MCi .. 123 (i only remember it because it goes in order and I always thought it was funny lol) but I didn't have saliva problems right away, but I do notice that when I'm sick and i sleep with my mouth open I have to drink something in order to get my glands working. Also there are other times where I realize my mouth is drier than it used to be, but like everyone said.. it's doable, no huge issues. As for feeling "normal" idk what that even is anymore. I had my surgery and Rad I at the end of 2009 and I'm still dealing with a bunch of stuff. Doctors always made it seem like my cancer would be so easy and i'd be back to normal in no time so that's what I always thought... but at least for me, that hasn't been the case. My TSH jumps from hypo to hyper every 6 months I go in.. and my life has been so much more of a struggle than doctors led me to believe. I just want you do know that if you start feeling this way a year or month down the road.. you're not crazy lol I thought I was just being lazy or unmotivated or whatever (which I'm exactly the opposite personality so that's why it messed with my head so much) and to be honest I feel like my cancer was a piece of cake, but it's the aftermath of it all that's the hard part.

    I can completely relate to you going through this right in the middle of undergrad too and how shitty people can be to you.. I lost so many friends at my school for one reason or another all relating to my cancer. But I digress lol, It's so great you found this site because I didn't reach out to anyone for almost two years after my treatments and I think it's really took a toll on my psyche. My best advice is to ask questions of us fellow thyroid survivors when you feel like you're losing your mind because of something your body is doing because you'll realize you're not alone. I had the worst time post-radiation with my medical classes I was taking and I thought I was just not applying myself (even tho I really was I was just beating myself up because i had no other explanation), but thru talking with others I found out that my memory/concentration problems probably had a lot to do with my crazy thyroid. So I just want you to realize that you're not crazy and your support groups are the best things you can invest in for your emotional well being :)

    I hope my rambling paragraphs helped and most importantly made sense bc like i said my mind is all over the place lately lol Of course you can always message me if you need extra advice.. I wish I would have had someone to talk to who understood what I was going through so I'm here for ya :)
  • Hi!

    Basically everything you said is pretty relevant to my life. Things seemed to change so fast and I feel like I'm just along for the ride. I'm thankful that I'm in my last semester of undergrad. My concentration seems to be an issue, too, but I'm assuming that's just because my meds aren't regulated yet (not quite sure). It's all been really eye opening to me.
    I can definitely see how the aftermath can be difficult due to thyroid complications. I'm still SO hypo and it takes a toll on everything I do, which is annoying, so I am sure you are really frustrated, as well.
    Thank you for reaching out! I'd love to chat sometime!

    Kaylee
  • jadefujadefu Community Member
    I've actually been lurking on here for ages, since I was sick, and finally got up the nerve to post. :) I was diagnosed in August 2009 when I had a total thyroidectomy and when they biopsed it, surprise! There was cancer already. So I had RAI in September 09. It took until November for me to be able to work full-time again, but it took over a year to get my levothyroxine to the right dosage. So far, all my followup scans have been good.

    I also didn't tell tons of people. I told some, and a few were super supportive, but others weren't or almost acted like I was faking...like asking me "shouldn't you lose your hair if you have cancer?" and stupid crap like that. I got hit with depression really hard in Dec 09 when everything that happened really hit me. I'm still sad sometimes about the people who I thought were friends that I asked for support just weren't there for me. It did teach me who my real friends are.

    I'm still having problems with my immune system, I seem to catch every cold that comes around, but my endo says that shouldn't be a side effect. But I never got this sick this often before cancer. Plus I have trouble adjusting to changes in temp, which again, my doc says isn't a side effect. I'm seeing a personal trainer now to try to lose the weight I gained while sick and build up the strength I lost.

    Any of you going to OMG2012?

    -Jen
  • KatydidKatydid Community Member
    Hi Jen! It's a little quiet in this thread lately, but welcome :) Glad to hear that your scans so far have been good - fingers crossed they stay that way!

    I didn't tell very many people either...most don't seem to know what to say. The 55+ crowd gets it pretty well, but people my age not so much (except for one friend who somehow knows exactly what to say).

    I think Kaylee is going to OMG2012. Not sure if any of the other thyca people on here are; it sounds like it'll be a blast though!

Leave a Comment