Just Diagnosed With Papillary Thyroid Cancer

Posted by mabfp3 @mabfp3, May 5, 2024

I have had three benign nodules on my thyroid for six or seven years. In 2021, one had grown and it was biopsied. It was still benign. Two months ago, I had a routine ultrasound for these nodules and two of them had grown, so I had another biopsy in April. I just had a call from the doctor who did the biopsy to tell me that two of the nodules are cancerous. Those two are on one side of my thyroid and there is a tiny one on the other side, which is too small to biopsy. She referred me to a surgeon who she highly recommends and said that he will present some options to me as to whether to have half of the thyroid out or the entire thyroid. After that, I will have to take thyroid medicine for the rest of my life. I have to admit that I was blown away when I received that call! I was told by the biopsy doctor that this is 100% curable, but I am concerned and nervous about the whole situation. I am 74 years old and other than a knee replacement, I am in good health. I would love to hear from others who may have gone through a surgery like this. All input and suggestions are very much appreciated! MaryAnn from Boston.

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Don Higgins, Volunteer Mentor | @dsh33782 | Jul 25 8:00am

In reply to @samamtha "Hello, what kind did you have? Did you remove your whole thyroid?" + (show)

Samantha
I just had partial thyroid removal and am not on any medications for it.
Don

koh | @koh | Jul 25 10:18am

Hi, I have been telling the doctors about pain, right where my nodule had been and I always mention the pain from specific movements, so when they do the scan they are thorough. My recent scan resulted in a report where they mentioned a nodule that they were monitoring on the right side, however my right side had been removed!…..I called them and was told it was a typo and should have said, “left side,” however I went for a second opinion which showed a cluster of enlarged lymph nodes.
Following surgery, I was told I have Hashimotos Thyroiditis and have to take thyroid medicine….Although my dose is low, I have had extreme side effects on some of the medicines. I have been told that the issues are not related to the medicine and that my T4 and TSH are all in the normal range….something that seems to be consistent. However, there are two areas that we need to monitor….our blood numbers AND our symptoms/side effects. I felt the side effects were better on Levoxyl and had been taking it for a year, however I just kept feeling worse. The fluctuations could be related to stress and other aspects but the side effects had gotten so bad I asked to change medication to see if it helped. Within a few days, the hip pain, which I had attributed to lifting while taking care of my mother, went away…..I have had the hip/back pain for a year!!!I had shortness of breath, nausea, muscle/joint pain, internal tremors, insomnia, headaches, word finding issues, etc. that kept increasing in severity. I changed medication to unithroid and so far, have had reduced side effects. I am hopeful that the side effects will continue to go away. I only take one medicine, so any changes are not due to combination of medications.

I am fortunate that I do not need referrals for medical care, so I have decided to follow-up on any issues to eliminate my concerns. I read a lot and have googled more thyroid research than I ever thought I would, so I feel comfortable with hearing about any test results. It is hard to start questioning doctors, however sometimes a simple question will have them explain the situation better.

In my opinion, one under represented area is the role of vitamins; when my PCP does my routine bloodwork I ask him to run a vitamin profile to make sure some of my symptoms aren’t just related to a vitamin deficiency….I often have a low vitamin D, which can help with some side effects.
My PCP sent me for a cardiac calcium screening and they found a lung nodule. I went back to cancer hospital for a PET/CT scan and they said the report said the issue is unchanged from previous PET scans…..however it is not listed on previous reports, (when I questioned this, they said they checked the images), so I am following up with Pulmonologist outside of the cancer hospital. The issue right now, is that the nodule is only 3mm and doctor said I had minimal invasion so it’s not related to Hurthle Cell carcinoma, however I do not understand how they could know this. Since this is the first I have heard about having a lung nodule (and I am having “side effects that include a cough, occasional chest pain and shortness of breathe) and I read that Hurthle cell carcinoma often goes to the lungs, I am following up outside of the cancer hospital. We will see.

I have found that the side effects from medication are individualized and can fluctuate due to many factors. They can really make you feel miserable!!! However, if the side effects are due to your body not tolerating something in the medication, I tend to think, it is going to remain an issue. I get tired of hearing how my symptoms are “unrelated to this” only to find out that it was.. A doctor recently told about the use of antidepressants for concerns and how they might help…..I asked how an antidepressant would help if the issues I am experiencing stop when the dose is changed or I stop the medication? …..although depression can be an issue with thyroid issues, I don’t think that is the issue for my situation since the issues fluctuate by dose.

I have found that medication changes can be felt immediately and waiting 6 weeks is for the blood levels to show. I don’t think people should suffer from side effects for weeks while waiting for blood levels to be checked. I have had doctors to have mentioned waiting 6 weeks before changing medications, however my focus is on feeling better so sometimes I cannot wait 6 weeks, so the doctor will change dose/medication.
Good luck!