Papillary Thyroid Cancer
Hello all, I have PTC with one or more Lymph nodes involved, left side. Having total thyroidectomy soon and probably RAI.
I had SCC base of tongue in 2018, I went to the head and neck cancer forum in 2018 and joined and received so much helpful information and tips that helped me through that ordeal. Please check my bio if you would like to know more.
I am looking for the same on this forum. If you have any info or tips that may help me navigate through this next adventure I would greatly appreciate it. Thank you
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Can you still speak? That is a good sign. Lymph node involvement kind of sucks. I had total thyroidectomy and parathyroidectomy in 2022 and just got diagnosed with multiple myeloma. I wont know until the bone marrow biopsy if the thyroid cancer metastasized or what kind of cell it is. I didn't go for RAI. Maybe I should have?
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Hello. My name is Barbie and I got the call about an hour ago telling me that my thyroid nodule was cancerous. Papillary thyroid cancer. My blood work has all come back good. There is hyperthyroidism on my dads side of the family pretty bad with all the females suffering (not me … in fact my thyroid levels still came back fine) from it - but never cancer. I’m definitely scared. I have a 10 year old son who is my everything and I can’t leave him until he’s at least in his 50s :) So whatever I need to do I’m going to do it. I have no idea yet what doctors may want to do. I guess I’m curious about how the surgery went for removal of the thyroid and the process of getting in he right dosage of medicine. Or if the was the RAI ablation was really bad. I guess I just want to talk to someone who is or has gone through this. Thanks.
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Hi Barbie Leigh, the TT I had with neck disection took me about 4 weeks until I could feel somewhat normal. I started Levvothroxine the very next day. Could only eat soft foods foor the first 2 weeks then was able to try other things. I will have to wait another month or 2 because I had a CT with contrast. The contrast contains iodine so that will have to be dissapated from my system before I start RAI.
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I was diagnosed November 16th 2023 with SNMM (sinonasal mucosal melanoma. Tumor in left side) I was having left side neck dissection because they thought the mucosal melanoma metastasized to my left lymph nodes. During frozen and surgery, it came back as thyroid cancer. They then removed my thyroid. I will be starting radiation on my mucosal melanoma as well as my thyroid. For my thyroid I’m doing radioactive iodine therapy also.
I'm very, very new to this, especially with two different cancers at one time, (hoping my breast biopsy is benign), so I’m flying solo here. Anything at all helps.
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Hi, my name is Tammy and I am 53 year old newly diagnosed with Papillary Thyroid Cancer in early 2023. I was having issues with my parathyroids and when a neck US was done, they found a metastatic lymph node in the right supraclavicular area. After biopsy they were surprised to find out it was thyroid cancer. On March 2023, I underwent a total thyroidectomy as well as lymph node dissection and parathyroidectomy of 2 of the parathyroids. They additionally removed 25 lymph nodes and 10 did come back cancerous. On May 30th, I then had radioactive iodine ablation (98.9 mCi) with a thyroglobulin (tumor marker)of 45 and a TSH of 144. On June 6th I had a whole-body scan with SPECT-CT that showed uptake only in the thyroid bed, which was good news. I have been told even with the metastatic lymph node that I'm considered stage 1. This is a very slow growing cancer and if I had to guess I probably have had this most of my life and it just started causing me issues. I am having issues with weight gain adn hair loss. Prior to radiation, I was taken off medication and so I had no metabolism as they wanted my TSH to get high, which it did so the cancer cells would be starving for the radiation. In turn this put me in hypothyroidism and I gained over 40lbs since and at 53 we all know how difficult it is to lose the weight. Just thsi past month it is slowly coming off with change in diet. The radiation I will say was not fun. I had to go on a low iodine diet two weeks prior and once I received the iodine, I had to isolate for 3 days and I did have 1 bad day of nausea, but otherwise it went okay. I had another neck mapping done on Nov 7th and lab follow up. At my appt. on Nov. 14th to go over my US and lab results I found out some not so good news. Although the radiologist that read my US indicated that all looked good, no abormal lymph nodes were noted, my endocrinologist indicated that he felt there were a few abnormal lymph nodes. He said my thyroglobulin (tumor marker) did have a significant drop from 45 back in May to 1.8 (the goal is to be <0). My TSH dropped to 1.62 which is huge also from 144 and puts it in the normal range. He does want to keep this in the lower end of the range which is 0.55 -4.78 . There is definitely good progress, but I was still a bit concerned about the abnormal lymph nodes, but the endocrinologist reassured me that it can take up to a year for the radiation to get to all the cancer cells. We have over 200 lymph nodes in our neck region and so he said 1.8 could be many very small cells, not seen with the naked eye so we will just monitor and get another neck US in May 2024 and set up lab in another 4 weeks to see where the thyroglobulin (tumor marker) and TSH is at and as long as those are decreasing things will be okay. He increased my Levothyroxine medication from 125mg to 150mg to keep TSH at the lower end of normal range. I also found out that although I only had 2 of the 4 parathyroids removed, the other 2 he feels died off as my PTH level is still off so he is monitoring that as well. My hopes that I could stop taking calcitriol and Tums is now off the table as those medications will keep my calcium at the level it needs to be. On Jan. 2nd, 2024 I had my labs drawn again. This is where I'm lost at what to do. I have access to review my labs online and so when the results showed up yesterday (1/3/2024) my Thyroglobulin (tumor marker) went from 1.8 to 2.6 and my TSH went from 1.62 to 3.19. I immediately messaged my endocrinologist to please call me so I can review these results with him. I didn't hear back from him until today (1/4/2024) and the nurse messaged me and said " the doctor looked at your labs and he said your TSH is normal but slightly above goal at 3.19 (your goal is 0.5-2.00). You are on 150mcg right now, he would like to increase to 162.5 mcg daily. You would now alternate with 150mcg and 175mcg every other day. Once you have done this for 2 months he would then check a TSH. Please let me know if you are willing to do this and i will send a prescription for 175mcg to your pharmacy. I responded and said, "but why did the TSH elevate from 1.62 to 3.19? That seems to be alot in just 2 months. Also what about my tumor marker increasing? It went from 1.8ng/mL to 2.6ng/mL. I’m fine with increasing, but he did increase it at last appt. I really would appreciate knowing what may be going on." The nurse then messaged me back, "doctor read your message and said your tumor marker has increased and decreased prior to the 1.8, it was 3.4. Nothing is going on, it just happens sometimes. He said we can check your Tumor Marker next time again if you would like to reassure you that it is not progressively increasing. Hope this helps, i will send a prescription for 175mcg every other day for you. Just remember to have a TSH, and Thyroglobulin Tumor Marker in 2 months. I just started crying. If he would of taken the time to review, he would of seen that when it was going up and down that was after surgery, prior to radiation and after radiation. I've only had it done 3 times since radiation. So why did that go up, he increased my Levothyroxine and that went up as well. These should of bother decreased. Does anyone have any ideas on why this happened? Is it normal? I'm just scared. I have also been seeing my PCP and trying to get answers as I've had a UTI 4 times since this all started back in Nov. 2022. That was my initial reason for seeing my physician and when she did a 24 hour urine, a bunch of my labs were off and that is when she initially sent me to an endocrinologist. But since then I have had 3 more and they put me on antibiotics and it just never completely goes away. It comes and goes, but its back pain and lower quadrant and groin pain. I don't have urgency or blood in my urine. I'm really scared that this is all tied together somehow. But am I over speculating?? I don't know. I have lost alot of loved ones to cancer and most the few that I know didn't get the proper care and so I may be paranoid, but currently I had a urine test done with my lab on Jan. 2nd 2024 and it does show some bacteria, but nothing else abnormal so why am I having the sever back pain? It was so bad this morning I had a hard time getting out of bed and then I had really bad groin pain. I have message my PCP yesterday again today and left her a message and I can see that my messages have been read in the portal, but no one has gotten back to me and it doesn't even look like they sent it off for a culture so not sure what to think about that. So frustrating. Any feedback would be appreciated.
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Hi Tammy, I am sorry you are going through this. The first thing I would say is to take a deep breath. Trust in your doctors. Give it some more time the doctors don’t get back with us too fast until after the holidays which you are there now. Hopefully they will contact you soon. Hang in there this is very treatable.
I also am going through this, currently waiting on my RAI to take place soon. Good luck Tammy
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Hi Tammy. Isn’t this all so scary?!? I don’t even know still what’s going on with my PTC. I got diagnosed about 3 weeks ago and I my consult for surgery isn’t for another two weeks. It’s all terrifying. I’m sorry you have to go through all this. The only thing I can touch upon is the UTIs. As a young adult I started getting them all the time. I could never get rid of them on my own and always had to take antibiotics. Eventually I started taking a daily cranberry supplement and it did wonders. As for you starting to get a lot of them since all this - I know that meds, etc can change your ph balance and that can lead to UTIs (which in turn can lead to kidney infections - been there too!). Cranberry supplements for the win. Also good in vitamin C. I’m hoping you get answers soon. The waiting game is so hard.
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I’m sorry you are going through all this. It’s so scary and the waiting game is so hard. When do you do your RAI treatment? How was your breast biopsy? I am new to all this too. Got diagnosed with PTC 3 weeks ago. Have two more weeks until my consult with the surgeon. Just don’t know how bad it all is. I’ve been told my nodule is small but I’m not sure that means much. It’s all so hard. I’m sorry friend.
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Thanks so much for your kind words. I try to be patient, but it has been very frustrating. I’ve been so positive since I was told I have cancer, but with all the issues I’ve been having there comes a time when it’s really hard to stay positive. Yes it is very treatable when things go well, but when they don’t and nobody explains things to you, it’s hard. I wish you the best of luck and hope radiation goes well for you!!
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Hi Barbie,
Thanks for the kind words. Please note that all cases are different and this is a very treatable cancer. I do feel blessed that if I was going to get Cancer that it would be Papillary. I’m just frustrated and so I apologize if my going on and on has scared you more. Please don’t be. I’m not sure how old you are , but with having a 10 yr old I’m assuming younger. That is a huge advantage. Even with all I’ve had done and my age, I’m still considered stage 1. I only have a 1% chance of dying from this disease. So please ignore my complaining, you will be fine. They may not even have to do a total thyroid removal, they sometimes will do a partial. Most cases don’t have the radiation either. They will have you take Levothyroxine and take the dosage is different for everyone. One huge note is don’t take the Levothyroxine with any other medication. If you have more questions about surgery, etc please let me know.
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