Recurrence of papillary thyroid carcinoma

Petsy_33

Hey!

I was 21 when I was diagnosed with papillary thyroid carcinoma and underwent a total thyroidectomy followed by RAI.

Now after 2 years cancer reoccurred and I had to undergo another surgery.

Just wanted to know if anyone is out there experiencing the same thing so I find someone to talk to about how to deal with it.

Miles' mom

hey friend. Yes I have gone through this same thing and then a third time as well. Every 1 1/2 to 2 years seems to be the trend. My surgeon did tell me from the get go that this type of cancer likes to jump around and will most likely return. She said she would see me again. Well, of course, I dismissed her. She has done all my surgeries.

I am 54, so much older than you. I am so sorry you are going through this at such a young age. It is no fun. It is the pits. But your reaching out shows how strong you are. Please let me know if I can try to answer anything else, or just share my experience. Feel free to private msg me too.

God Bless,

Lora

p.s I have been assured from said surgeon that this cancer does not kill. If you stay monitored and catch anything before it spreads..

mamamia1962

Petsy and Lora - bless you both and many wishes for your good good health. My 22yo daughter was just diagnosed with papillary cancer yesterday. We are meeting with the surgeon in the next couple of weeks. I'm terrified for her and thank you for sharing your stories and things that worry you. It sounds like this might be something she may continue to face. I feel like we just stepped over a very special threshold and I'm determined to keep her spirits up and do what I can to support her through this. I hope she will join a group like this to get support from other strong people like you.

Petsy_33

https://csn.cancer.org/discussion/comment/1701165#Comment_1701165

All the best to you and your daughter. I wish her good health and hope everything goes well. You just have to be strong and patient and this will pass soon. Let me know if you have any questions. Sending good vibes your way ☺️

magali

https://csn.cancer.org/discussion/325708/recurrence-of-papillary-thyroid-carcinoma

Hi ! I'm glad to have found this forum . I'm sorry to hear your having to deal with this again . I'm here bc my mom has had another recurrence for PtC 3rd surgery almost about every 12 months since 2020. I worry sometimes but it helps to stay in touch with people going through the same.

How are you doing ? Did you have another surgery

magali

https://csn.cancer.org/discussion/comment/1700663#Comment_1700663

Hi there! My mom is 50 yr and this is her third recurrence scheduled for surgery on the 19th this month. I worry bc she worries but helps to know at least everyone is being told they are going to be okay

mamamia1962

https://csn.cancer.org/discussion/comment/1702881#Comment_1702881

Wishing all the best for your mom and her healthy future. My now 23yo daughter is going for surgery next Wednesday. We've been told by every doctor and surgeon we've seen, every person who has been through this, to not worry and she will be ok. All of that helps but it's still hard not to worry. Blessings to each and everyone 🙏

Hh97

I know this is a bit late, but seeing as someone else recently wrote here it is not like I am necroing a dead thread, but with recent CT scans for something else it very much looks like I might very well be in the exact same boat. Two and a half years ago while trying to figure out why I was coughing up blood every hour for like 7 weeks straight they never did figure out what was causing that but did find Thyroid cancer, so I had surgery and had the RAI mid 2020. After doing so the cough just went away, so great. But then in the last few months while the cough is not as bad yet the cough has started coming back, so did a bunch more tests again and recently a CT scan and in that CT scan it found a "redemonstration" of a thyroid nodule that would have been removed when I had my thyroidectomy. Obviously the word "redemonstration" is not correct seeing as it would be a new one since the old one was removed, but the reason it was worded redemonstration is because the CT scan was being compared to the previous one which was done before the surgery. Nothing is confirmed yet, still have to do other tests, but seeing as the entire thyroid was removed and there is indication of a nodule there it stands to reason that there is a better than 50% chance that there might be a reoccurrence seeing as everything was removed and it is back. There is still a chance that maybe the CT scan was read wrong.

I hope everything went well for you, but all I can say is luckily it is an easier one to deal with (though I am dreading the having to intentionally have low thyroid hormone, last time it took a year and a half to finally have the medication give me some semblance of normalcy, I am really hoping that it was just the CT scan was misread but I doubt it). Hopefully you have a supportive family and friends who can understand and help you because man it is way rougher being constantly fatigued and having a family who doesn't comprehend that it isn't a case of lack of sleep, that you could sleep 3 hours of 30 hours and you would still feel like you just finished two back to back 20 work shifts goin in for a third one in 3 days.

deezbiz23

I'm so glad to see these comments. I was diagnosed with PTC Oct 2022, had surgery Dec 15th, 2022. My thyroid was completely removed and my right lymph nodes were removed. After seeing the results from pathology the cancer had spreaded to surrounding lymph nodes and areas. I'm scheduled to start the radioactive iodine treatment and iodine scan in a couple of months to see if there are still some cancer left. So Im getting use to everything. I had radioactive treatment before so my dr did inform there is a chance of reoccurence. Now I'm waiting to get a scan of my lungs to see if it has spreaded there and see that others have experienced that. But I wish everyone the best and we got fight in us for any obstacles that show up. I'm glad for this network chat😊

Hh97

https://csn.cancer.org/discussion/comment/1702946#Comment_1702946

Yeah I had no issues with the RAI, the surgery was fine, the worst part about the thyroid cancer for me was how long it took to get my thyroid hormones to a place where I felt normal again. I am assuming you had radiation for something different. But yeah the two worst times for me was the having to go two months without thyroid medication to allow the RAI the best chance at working and the time it took to finally get the hormone levels where they belong with a brand that worked for me. While it may not be fun to go through just remember that as they are working on getting your hormones to where they should be that the fatigue will not only be physically draining but emotionally as well but once you get through that fatigue it is worth the annoyance. I spent a year and a half, nearly two years of trying to get on the right medication before I finally got back to being to a state in which I can call normal, and there were definitely days where I questioned if I should have chosen "wait and see" instead and days where even just looking at the stairs I have to go up to get to me bed room made me cry because the fatigue was just that bad.

Honestly after having gone through it the first time a few years ago (might be having to go through it again based on recent scans but that still needs more tests done) I would definitely say that I would rather have to deal with the surgery and short period of trying to get the thyroid hormones right than go undiagnosed with hypothyroidism, because the cancer part of the cancer treatment was the easy part, the hypothyroidism part of the cancer treatment was hell, I could barely cope with having to deal with that level fatigue for a year and a half, I can't imagine having to deal with it for longer than that, and it is definitely something that can go undiagnosed for a long time.

But yeah, just remember that if the recovery part of getting the hormone levels correct feels like hell that you will get back to feeling normal again, it just takes time, some people get their meds after the RAI and recover fairly quickly and others it takes a long time and it ends up where x brand works for them but y brand doesn't so it is not just the levels but also the brand itself. I do not regret having had the surgery and RAI but it was definitely not a fun recovery as far as the hormones went.

Still Surviving

I was diagnosed with PTC in 1963 at the age of 6. Several surgeries for thyroidectomy and dissection to remove right lymph nodes followed by two rounds of RAI treatment. I was fortunate to have a great endocrinologist who save me as a patient in need and not a science experiment! So now 60 years later monitor the TSH and T4 levels with my PCP. The dosage over that time has only varied between 125 - 175 mcg, currently at 150 mcg. A good endo is key to successfully managing your response to the medication, which also needs to be right for you. I have had good results with Synthroid/Levothyroxine hormone replacement. Critical to take it as directed and allow it to be absorbed properly before eating breakfast. Sixty years so far, a couple kids and grandkids, wife of 46 years… someone is watching over me!