Thyroid Cancer, Anyone?

[MrsDuck]

I'm glad everything is going well kenzi and thanks for all the information it is really interesting and things you wouldn't think of such as needing to use paper plates?

Your numb hands are a mystery though.

I hope your neck gets better soon and keep us posted with how your scan goes on Monday, good luck xx

 

[wamommy]

Hey ladies! I just found this thread, and it's amazing to know other women who have gone through this!

I had thyroid cancer when I was 15, complete thyroidectomy, along with 12 lymph nodes and 2 parathyroids. It's been 18 years since then, and I have 2 beautiful kids (and one on the way!) and have been able to manage thyroid levels fairly well.

I would be HAPPY to answer any questions about treatment, long-term care or medical management. I'll even post my scar if you want to see how awesome it can look once it heals and loses the red color. It's so rare that I meet other thyroid cancer survivors!

I'm sorry you guys are going through this, but is sounds like you're fairing VERY well!

 

[wamommy]

Oops, once more thing... Kenzi, did you have them check your calcium levels? When mine dip too low (no functioning parathyroids) my hands tingle or get numb, and eventually cramp up.

 

[kenzi26]

Welcome!! That must have been tough to go through everything when you were just 15 years old!! What kind of treatment did you receive after the surgery??

I had my entire thyroid removed during surgery, plus 2 or 3 lymph nodes because they originally thought the cancer had spread (it didn't). I still have my parathyroid glands. I know they checked my calcium levels immediately after surgery, but they were fine. I'll be sure to ask them at my follow up appointment!!

I'm going a bit crazy at home. Something happened today (I don't feel like going into the details right now-I didn't break any of the isolation rules, but a family member's reaction really really hurt my feelings). I just feel contaminated and worthless. I'm just really sensitive these days. While in the hospital, the implications of my diagnosis and treatment really hit me hard. I know thyroid cancer is very treatable, but no one likes to hear the "C" word and I just feel super emotional about everything.

I don't mean to sound super negative; I basically come onto the internet to let out frustrations that I cannot show in real life. I don't want anyone in my life to see any kind of sadness on my part, so I try and make jokes and keep everything light. Today was the first time my husband saw me cry over anything, and he was beside himself. He didn't know what to do.

I suppose I will just crawl in bed and feel sorry for myself until tomorrow! I get to see my girls briefly tomorrow. I'm so excited. They are currently with my mom. She is going to drop them off at my SIL's house tomorrow, and I'm going to see them at a distance. It's going to kill me not to be able to hold them/hug them, but at least I can see them even for 5 minutes.

 

[wamommy]

Kenzi, I'm so sorry you're having a tough time It's probably a good thing that you broke down though. It's better to let it out now then hold it in and let it fester there. The "C" word is scary, no matter what kind it is, and you have every right to be scared and upset! Take the day and pamper yourself, and I'm so glad you get to see your girls tomorrow.

My friends used to make jokes after I had treatment and call me "radioactive girl." and make a superhero noise. They would joke that we had to hide all of the forks! and ask "is the toilet seat glowing?" after I went. It was all in good fun, and I loved them for trying to lighten the mood, but I don't think anyone quite understands how it is being told you're quarantined like a leper.

As for my treatment after surgery, I had radioactive iodine treatment, but they kept me in the hospital for 3 days afterward. I had the liquid kind, where you drink it out of a straw with a needle on the end that pokes into a vial of metallic-tasting awfulness! After that I had scans every 6 months for 3 years (the kind where you get a lower dose of radioactive iodine the day before) and then every year for 2 more. Finally at 5 years post surgery they told me I was officially cancer free

The only issues that I've had were more form being young and stupid. I went through the whole "this isn't fair, I shouldn't have to take pills the rest of my life!" phase, where I simply didn't take my thyroid meds.

 

[Whisper]

wow so much has happened, so pleased you are doing well Mrs Duck, was your follow up appointment today? I really hope it was good news for you. x

Kenzi, you are so brave to deal with everything and have a young family to look after it is no wonder you are feeling emotional, cry away you are allowed - you don't have to stay strong for anyone, they are there to support you and its probably good they know how you are really feeling deep down.

Some people can be pretty careless and flippant with their remarks, not sure what was said but try not to let it get you down. Some people really don't think.

x

 

[MrsDuck]

Hi everyone

wamommy thanks for your post, I'm glad you are now fine and it has been a success.

Kenzi I'm so sorry you are feeling down at the moment, we are always here if you need to voice anything that you don't feel you can say at home, have a good cry it will make you feel better. I'm glad you got to see your children and I hope you are feeling a little better now xx

Whisper how is everything with you now?

afm things aren't good, I went back to see the consultant today and he has confirmed that is is cancer and that he removed 3 nodes also of which 2 were found to be cancer so now I'm waiting for a CT scan and then back in for total removal of the remaining thyroid and anything else that looks suspect then of course the radioactive iodine treatment.

It just all feels like it is never ending.

I came on B&B originally as I was pregnant which I later miscarried so I'm desperate for all these thyroid issues to be over so I can get back to baby making.

 

[Whisper]

Oh no I'm so sorry Mrs Duck i was really praying you would get the all clear as well. Very sorry you have the trauma of more surgery and the iodine treatment. It must all feel a bit overwhelming at the moment the only good thing is you know what the next step is, fingers crossed it goes really smoothly and quickly.

As you said above the same goes for you if you need to chat we're here to listen i know i'm not going through the same thing as you but i understand some of it.

Do you know if you can start trying straight away or do you have to wait a little while?

Things with me are ok, same voice very miniscule improvements (people keep telling me) but i don't feel like there is any difference, but its pretty insignificant compared to what you ladies are dealing with tbh.

Big

xxx

 

[MrsDuck]

I'm glad your voice is getting better even if it is very slowly x

I only know what I have googled and that is that you have to wait 6 months to a year after treatment before trying........I'm almost 33 aaaarghhhh.

 

[kenzi26]

Oh no Mrs.Duck, so sorry about the results!! Well, at least the waiting game is over and you officially know. That was the part that killed me. I hope you can get the second surgery done and the RAI therapy done ASAP. The radioactive iodine really isn't bad at all, and the discomfort I felt was minor. The worst part is having to stay away from people. I know you probably don't want to hear this, but my doc warned me against getting pregnant for a year after RAI. And if you need anything, remember we are always here to lend a listening ear or a shoulder to cry on!!

My kids are still at my SILs house, and I'm just feeling so tired and run down. I wonder how long the thyroid meds they have me on take to kick in. I seriously took a 4 hour nap this afternoon, and it is currently 9:00 pm and I'm ready to go to bed.

Wamommy: My husband is driving me nuts with the glow-in-the-dark comments. He means well, and doesn't want me to feel bad, but it gets old very quickly. And how did the radioactive iodine taste? I shudder to think . I was so relieved when he pulled capsules out of the metal container (they didn't tell me about it before hand) However, one of the capsules broke open so I had to eat the powder and it was salty and gross. The tech actually said "Shit. That's not supposed to happen" under his breath. Comforting, no?

The negative comments always seem to come from my husbands sister. Today my SIL actually had the audacity to tell me that I am "lucky that I get to lay around and do nothing" and that she wishes she had that time and then went on to complain that her back was killing her. Really? I got so angry. I would much rather be healthy and a little tired from working/taking care of my kids than unable to even hold my baby and having to stay mostly secluded from everyone. I do have sympathy for her if her back is hurting, but no one seems to understand that this is not a vacation. I called my husband and told him to go pick up the girls and bring them home immediatly. He just laughed and told me to call him back after I calmed down. All he does is laugh when I get angry. He thinks it is so funny because the smallest things set me off these days.

Oh, and yesterday I had a full body scan. I never think of questions to ask until I get home. The attending physician talked to me about the scan afterwards, and showed me a picture of my neck. He says there is a lot of activity there, which is good because that means the RAI is doing what it is supposed to do. He also said that the cancer has not spread to anywhere else in my body, which is very good. He said he will write up a report for my doc, and that the results are good. Whatever that means? I should have asked when I am getting another scan, and how will they know if the treatment was successful? I have an appt with my endo doc on September 7th, so I'm going to write out a list of questions so I don't forget anything.

Ok. Now that I've written a novel, it is bedtime .

 

[MrsDuck]

Thanks kenzi x

I can't believe your sil she needs a slap I really hope she was just trying to lighten the mood but still I can't believe she said it

I asked how they know it's worked and was told because you get scanned again and they can see that there is no activity with cells and the iodine, if there still is then they will give you more RAI and repeat the scanning until they can confirm all the cancerous cells have been killed

Great news that it hasn't spread

Do you know when you'll be scanned again?
When do you get your radiation level checked again?

Xxx

 

[MrsDuck]

I have my ct scan booked for Tuesday

 

[kenzi26]

Good luck with your CT scan! How are you feeling from surgery? And do you know when you'll have your second surgery?

 

[MrsDuck]

I feel fine from surgery now still some pains of I move my head too quickly or sneeze but other than that I'm good.

No I don't know when the second surgery will be yet I'll find out after the ct scan, I can't believe I have to go through the surgery again.

How are you doing?

 

[kenzi26]

That is so unfortunate that you went through the first surgery only to have to go through it again. Tbh, I would be very frustrated. Hopefully it goes as well as the first one did for you.

How is everything going? How is your family taking everything? I hope you have a good support system.

I'm alright, just waiting until I can bring my girls home. I miss them so much!!

 

[Lottieloux]

Hi.. i have no experiance either sorry! But good luck with it all! xxx

 

[MrsDuck]

I am a bit frustrated but I would have been more frustrated if they had taken all my thyroid out on the first op and it turned out just to be a cyst and I has to be on meds for the rest of my life when it wasn't necessary so I don't really mind at least I know what to expect so won't be so worried.

My concern is my ct scan on Tuesday I just hope the cancer hasn't spread anywhere else.

My hubby is being wonderful and all my family live close so I'm getting lots of attention. I'm going back to work Monday now that I can drive until my next op.

I bet you can't wait to have your children back home, any idea when it will be?

Thank you lottie x

 

[kenzi26]

Thank you Lottie!

Ms.Duck~ Thats good that you have support! It is really important. I wish I lived closer to my family; my mom and sister seem to be the only ones who really understand. DH just throws himself into his work.

I brought the girls home tonight. Originally was going to wait til tomorrow, but we changed our minds. Each doc had a different opinion anyway. It has almost been two weeks. It is so nice to have my babies home. I don't go back to work officially until Thursday, so I have a few free days at home with them. I am supposed to go to a 3 hour work meeting on Wednesday night, but I'm trying to think of excuses on why I can't go . I've also been a bad friend and have been screening calls from everyone. Time to stop being antisocial I suppose. Phew. I probably sound like a horribly negative person.

Good luck with your scan on Tuesday. Fingers crossed that it hasn't spread. You will be in my thoughts.

 

[MrsDuck]

Oh you poor thing kenzi it's been great having everyone around me and I think it's going to be even more important after my second surgery and then after RAI treatment, I don't know how you have coped

I'm so pleased you have your children back home now and I hope you got out of your work meeting x

I have my scan tomorrow and my results on Thursday then my pre ops next Tuesday and my second surgery next Friday so all is moving fairly quickly, thankfully

 

[MrsDuck]

Just got back from the hospital, the scan was over and done with in 10 mins. The contrast dye made my heart race and gave me a yuck taste in my mouth but nothing serious so I just had to wait 15 mins before they would let me go home.

Unfortunately I have to wait until my pre op assessment next Tuesday to find out my results, Oh and whilst typing this the hospital has just called and has asked me to return tomorrow because they want to scan me further so that doesn't sound very promising!!