Thyroid cancer and inputs from people

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Thyroid cancer and inputs from people

by lucie0304 on Fri Aug 31, 2018 08:52 PM

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Hi all, I'm new to this forum and just found it. Did not realize so many people might have gone through something similar. It seems more common than  I thought .

I went to my routine obgyn exam back in March and was told I had a big nodule on my thyroid that needed to be checked. I went through ultrasound and needle biopsy with inconclusive results. My surgeon recommended to remove the mass since it was 5 cm and too big to stay. He found 2 cancer and I had to go back 3 days after my first surgery to get a second surgery and remove everything. It's been a roller coaster of emotions as I wasn't expecting them to find cancer. 

I just went to see the endocrinologist I was referred to, after surgery and she walked me through the radioactive iodine treatment I have to do end of September.  So much information. 

I have noticed more fatigue after the surgery, as well a s getting colder faster than usual. so I hope it won't get worse after the treatment. 

How did you deal with your treatment and isolation ? I have to take off work since I work in close contact with animals and people. 2 dogs at home and a husband who will need to stay away for 5 days. And 2 weeks of low iodine diet prior to treatment. I was also told some people need to repeat the treatment or even go back into surgery to remove lymph nodes if body isn't responding to treatment? 

Anyone has tips and/or inputs of what they went through? I would love to hear what people did and how you cope with this. It's been so stressful for me, thankfully my insurance covered a lot, but there is a still a big chunk of debts I need to take care of eventually and I'm not even done with this yet...

Thanks for your time !

RE: Thyroid cancer and inputs from people

by ToddlerFather on Sun Sep 02, 2018 06:20 AM

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Been there, done that with 2 surgeries. 

On what you mentioned:

- The fatigue suggests lack of hormone. This might be part of the strategy to make remaining cells the more iodine-avid as possible, but should go away as soon as you find the right hormone dosage for you. 
- For the 2 weeks of low iodine, it would be better if someone in your state already researched what's usually available in markets that you should avoid, and what you might keep eating or drinking. Those things vary by region. 

- The isolation part was not hard for my case, even though I took a high dosage of radiation (200 mCi). I was only allowed to leave the hospital when the measured radiation was down to a safe level to be among people, and the only hazard I had to look after was body fluids. That meant reserving a bathroom (toilet and shower) for my own use for a week and doing laundry separately. The challenge you have here is your K9's, since they won't cooperate with your plan. 
- Repeating the treatment or removing lymph nodes is too much dependent on each specific case to be concerned at it now, since your MD will guide with your case as it progresses. The only preventive suggestion I have is for you to get a firm understanding where your tumor is stored and for how long it will be in good condition for further testing, if needed. If things go south, genetic testing of that tumor might reveal targeted therapy options to better handle bad outcomes like recurrence or metastasis. 

Note that while statistics give a trend of what is likely to happen, for you and your family the only outcome that matters is yours. So you can ask how people cope with this and know how some simply never had to do anything ever again, or how others are still fighting developments like local or distant metastasis. But you don't know yet whether your path is on the easy or the hard side... better face each new evidence with reasoning and keep doing the best decisions science can help you with. 

RE: Thyroid cancer and inputs from people

by Mamcg on Fri Sep 14, 2018 05:38 AM

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Did you have any lymph nodes removed during surgery? 

I had a total thyroidectomy Dec. 2017. I had this gut feeling I should not do the radioactive iodine treatment. My endo was very stern that I do it, especially since I had 6 out of 15 lymph nodes they took out were positive for cancer. Meaning there still could be more. I just have never felt good about doing it...plus the isolation thing really threw me through a loop. So, I have not gone through with it.

I get checked every 6 months and my most recent tests show no sign of cancer growth. whew! So did I beat the system? Only time will tell. Do I regret not doing the RAI? No, and sometimes yes. Yes mostly for peace of mind. It sounds as though your situation is a bit different then mine if they didn't take out any lymph nodes. There is a possibility it was just in the nodule, or it could have gone to some lymph nodes. Just go with your gut, listen to your body. Though the RAI sounds like a pain in the ass, it might just give you that peace of mind for the future.

RE: Thyroid cancer and inputs from people

by butterfly501 on Fri Sep 14, 2018 08:31 AM

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On Sep 14, 2018 5:38 AM Mamcg wrote:

Did you have any lymph nodes removed during surgery? 

I had a total thyroidectomy Dec. 2017. I had this gut feeling I should not do the radioactive iodine treatment. My endo was very stern that I do it, especially since I had 6 out of 15 lymph nodes they took out were positive for cancer. Meaning there still could be more. I just have never felt good about doing it...plus the isolation thing really threw me through a loop. So, I have not gone through with it.

I get checked every 6 months and my most recent tests show no sign of cancer growth. whew! So did I beat the system? Only time will tell. Do I regret not doing the RAI? No, and sometimes yes. Yes mostly for peace of mind. It sounds as though your situation is a bit different then mine if they didn't take out any lymph nodes. There is a possibility it was just in the nodule, or it could have gone to some lymph nodes. Just go with your gut, listen to your body. Though the RAI sounds like a pain in the ass, it might just give you that peace of mind for the future.

Just wondering, which tests show no sign of cancer?

RE: Thyroid cancer and inputs from people

by butterfly501 on Fri Sep 14, 2018 08:41 AM

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On Sep 14, 2018 5:38 AM Mamcg wrote:

Did you have any lymph nodes removed during surgery? 

I had a total thyroidectomy Dec. 2017. I had this gut feeling I should not do the radioactive iodine treatment. My endo was very stern that I do it, especially since I had 6 out of 15 lymph nodes they took out were positive for cancer. Meaning there still could be more. I just have never felt good about doing it...plus the isolation thing really threw me through a loop. So, I have not gone through with it.

I get checked every 6 months and my most recent tests show no sign of cancer growth. whew! So did I beat the system? Only time will tell. Do I regret not doing the RAI? No, and sometimes yes. Yes mostly for peace of mind. It sounds as though your situation is a bit different then mine if they didn't take out any lymph nodes. There is a possibility it was just in the nodule, or it could have gone to some lymph nodes. Just go with your gut, listen to your body. Though the RAI sounds like a pain in the ass, it might just give you that peace of mind for the future.

Just to clarify, if you get checked every 6 months, since Dec. of 2017 you've been checked one time since surgery? 

As an aside, I-131 ablation (RAI) is less than dramatic and less than a pain in the ass. I've been through it.  My child was 18 months, and I had 2 dogs to care for. Thankfully, my husband could pick up the brief slack for my few treatment days. 

RAI does not require "isolation".  It requires maintaining about 6 feet of distance for the first few days.

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