Papillary Carcinoma with metastasis status that spread to 2/7ths of lymph nodes

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volokor96
volokor96 Member Posts: 1
edited November 2022 in Thyroid Cancer #1


Hello.



My girlfriend has been diagnosed with papillary carcinoma at the age of 24 with a metastasis status that has traveled to 2/7ths of her lymph nodes. She has had a hemithyroidectomy a couple of months ago. She recently went in for a checkup and a few noncancerous nodules were found. A complete thyroidectomy has been recommended, however, she is reluctant on getting it as she is worried it will affect her quality of life.



Her mom is pushing her to get the complete thyroidectomy just like almost any other mom would. She wants her daughter live cancer free as a complete thyroidectomy reduces the chances of the cancer coming back. I do believe, however, that her mom is acting purely on her emotions and not relying on any kind of logical information, aside that provided from her primary care provider surgeon. She is pushing her to get the complete thyroidectomy as soon as possible. While I understand her reasoning, I feel like my girlfriend should visit other professionals and get advice from them before making that final decision. Upon reading an article by the American College of Surgeons (https://www.facs.org/media/press-releases/2018/ullman102218), a hemithyroidectomy procedure has been growing in popularity.



I am just trying to help as much as I can. I have been reading research papers and scouring forums to find any kind of information that may help my girlfriend make a sound decision. In no way, shape, or form am I trying to influence her choice.



If anyone here has had a hemithyroidectomy and/or a complete thyroidectomy, may you please explain your experience with these procedures and post-op experience and quality of life? If you can give a recommendation, I would be happy to hear this out as well.



Thank you for your time.


Comments

  • Misty1268
    Misty1268 Member Posts: 1 Member
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    Hello. I had a total thyroidectomy in October 2021. It was found that the cancer spread to lymph nodes. The surgeon only took out 2 lymph nodes because they looked “abnormal” to him. Both had cancer. This surgery has been my most difficult (it was my twentieth). The recovery was hard as my TSH skyrocketed and my surgeon did not put me on any medication for weeks after my surgery. I am now on Synthroid and waiting to see an endocrinologist for the first time in February. My thyroid cancer was found by mistake on. PET scan ordered by another doctor for another medical condition. I had no problems with my thyroid. I was diagnosed with Tall Cell variant of papillary thyroid cancer but was then told I have “classic” papillary thyroid carcinoma on the surgical pathology report. am refusing RAI. I was told by the radiologist at the cancer center I go to that the current level of thyroidglobulin can be my baseline as it is very low. The surgeon is not happy, he is pushing for RAI. As I only have Stage 1 cancer, RAI is not always necessary. It is my choice and for now I will wait and see what happens. I will get necessary scans and bloodwork. I believe that I can exercise my right to refuse treatment. I believe that armed with the correct information, we can tell our doctors how we want our bodies treated. That goes for family and friends also. If the people in your life want you to have a surgery or treatment, they need to be armed with knowledge. They also have to learn to accept your choices. Having a total thyroidectomy has interfered with my quality of life. I have had hypothyroidism without proper medication as the surgeon will only give so much and I have to wait to see an Endocrinologist. I have not had one before now because the surgeon said I did not need one. Your girlfriend should get and be be given as much information on they surgery and post op and then she should be given a bit of time because it’s a lot to digest. You are doing the right thing by helping her.

  • Miles' mom
    Miles' mom Member Posts: 39 Member
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    Get the total thyroidectomy. This cancer jumps and jumps around. Do the RAI treatment also- to the reply above mine.

    That is my advice. THAT said, listen to a good group of Doctors. If you have not found any you trust, find them. They are out there and they have GOD GIVEN skills. Mots importantly, however, listen to HIM..

  • MissSerra
    MissSerra Member Posts: 2 Member
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    I had stage 2 thyroid cancer that had spread to lymph nodes which was diagnosed when I was 35. I was not given the option of anything other than complete removal (partial surgery then full removal a week later), and I would not have cared to choose any other option if it had been given. Perhaps my experiences with loved ones that died of cancer impacted my decisions, but for me cancer wasn't something I wanted to mess around with. While I understand the desire to have control over your life and choices, cancer doesn't care about that. It is insidious and seems to have no end. When I heard the words "you have cancer" my only thought was to get it out of me. I ended up having 2 surgeries to remove the cancer and also had RAI treatment. That was in 2015 and I have been cancer free for 7 years. There isn't a day that goes by that I don't wonder when it will come back. Not if, but when. I can only imagine where I would be now if I had not had the surgeries and treatment. Everyone has to make their own informed decisions and all I can say is that having the surgery and RAI has not drastically impacted my life and has given me 7 more years that I may not have had.

  • mamamia1962
    mamamia1962 Member Posts: 8 Member
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    I am the mother of daughter facing the same choice. I lean towards the total thyroidectomy and thank you for sharing your thoughts. This helps.