Thyroid Cancer Group: Introduce yourself and connect with others

Hi everyone, my name is Lise and it's been about 3 1/2 months since my cancer diagnosis.

@san99999 I just went through a similar experience. I hope that since you posted things have become less ambiguous.

For me, ultrasound found 9 mm nodule that was determined after FNA to be (high likelyhood bethesda cat5) papillary carcinoma. My doctor considered it low risk so advised active surveillance since, like you mentioned, these small cancers can in fact stop growing and potentially never become a problem. He communicated his concerns about overtreatment of low risk thyroid microcarcinomas, but said that if it does start to change/grow we can still remove it without impacting positive outcome. Bottom line, he basically said it was up to me and what I felt comfortable with (some people just want it out asap) -- I decided to proceed with the active surveillance approach. We decided to do another ultrasound to make sure there was no change since December and, unfortunately, it grew 2 mm in 3 months ... so I am scheduled for surgery next month to remove the left lobe.

It was a bit of a difficult decision to make -- wait rather than opt immediately for surgery -- but once I did I actually felt a bit of relief. I have read every study I could find on active surveillance and asked my doctor a lot of questions. With the information I gathered I was able to actually calm down my anxiety a little and let myself trust that this is in fact slow growing and that I had some time to weight my options, get educated and settle in with a care team I feel I can trust.

Now that I am proceeding with the surgery I am feeling more of that anxiety creep back again -- worried about what it will feel like when I come out of anesthesia ... if I will need hormone replacement ... living with fears of recurrence ... etc ... and I'm very concerned about damage to my voice as I am a singer. I know its counter productive to get turned inside out about things that have not actually yet happened, but it's really hard. Trying to stay positive and not feel sorry for myself. Reminding myself that all things considered I am lucky it is treatable and was caught early.

It’s hard not to be worried about having surgery! If you are concerned and having doubts, have you consider a second opinion? My nodule was over 5 cm so I don’t know what size and growth is significant to predict cancer… mine was big but they didn’t think it was cancerous… and then it was!
Are you being seen by a cancer specialist? I had Affirma testing with the FNA which appears to have a high rate of accuracy for predicting cancer.
I did not find the surgery overly painful… I ended up with back/ shoulder pain from the positioning that caused me more pain than the neck…, and Advil and heating pad helped it. From a pain perspective. The healing process is ongoing however it was never excruciating pain. The change to the hormones is a bit tricky. I ended up having to take Synthroid and it is hard to decipher what is related to thyroid and what is related to side effects of medicine…. However this seems like an expected process…. It is tricky!
Good luck!

I had cancer in right lob, opted to remove only that side. Came out of surgery easy, but after 3 months needed medication. A year later left love had to be removed. I wish I had removed all of it the 1st time.
Like you I was hoping no meds.
Good luck, God Bless

Hi @koh14 Thanks for sharing your experience! Yes, I did get a second opinion -- one opted for lobectomy right from the get go and the other suggested watching waiting or lobectomy if it grows, which it did. Both doctors are otolaryngologists who focus on cancers of the head and neck and the surgeon who is performing the lobectomy is the director of the cancer center I'm going to, so I feel like I'm in good hands. The results of my FNA came back highly suspicious for papillary carcinoma (plus irregular margins and microcalcifications), so it needs to go.

Will just need to take it one step at a time -- it seems there are a lot of little moving parts to all this! Best of luck to you too with your process and healing.

Hi @dnedz Thanks for your reply! I am concerned about the possibility of having to undergo a second surgery -- I know its a risk. Taking the whole thing out presents more of a risk to two of the things I have devoted my life to, so keeping my fingers crossed that the right side will stay clear. So sorry you had to go through the second surgery. Wishing you well!

Im Teanna, I had papillary cancer three years ago, and had my thyroid removed I did not do the radiation pill, and have been taking Thyroxine everyday since then. I do labs, and ultra sounds about every six months to monitor it, seems to be stable at this time.

Hi, I was diagnosed with papillary thyroid cancer last week, my doctor is hopeful that I'll only need a partial thyroidectomy, but there aren't any guarantees. I'm in my late 30s and I'm guessing that I've had this for awhile (the cancerous nodule is about 1.5 x 1 x 1.5 cm; I additionally have a benign nodule that's about three times the size of the cancerous one).

So far my doctor has been pretty up front about what surgery and treatment path I'm probably looking at, but no information on what my quality of life will be after treatment, or if there are any cancer support services available in my area.

I'm quite nervous and I feel like I'm having to take most of this journey alone. Should I get a second opinion before my surgery? How do I find support groups or patient advocates in my area? The brain fog is absolutely terrible, and being suddenly thrown into the cancer care system has been overwhelming.

While my doctors are sympathetic, I've also faced a lot of judgement from medical staff that don't know my diagnosis, I think because they don't believe that a middle aged professional woman could be sick with something like this, which has made it much harder.

It’s hard not to worry but “ don’t worry.” 😆
Definitely get a second opinion! Before you have surgery it’s always good to get a second opinion to try and rule out false positives. I was told that they can’t definitively diagnose cancer until they actually do the surgery, so a second opinion might help rule out a false positive.
There is also Affirma testing ( they send the material from the fine needle biopsy for Affirma testing) which has a high rate of accuracy for identifying probability of cancer, which might be a good option.
It is scary to hear you might have cancer but of all the cancers, this one is usually a very slow growing one so you don’t have to rush to make a decision and can get a second opinion.
I have found that the online group is helpful for information, so you don’t feel alone to make decisions.
Good luck!

Hi everyone I have been diagnosed with Papillary Thyroid Carcinoma, and am very scared. What should I expect, dying or living? to be or not to be

Although hearing you have cancer can bring your mind to the worst case scenario, it is important to know that Thyroid cancer is usually contained to the thyroid and very treatable. Also, it is very important to state that FNA is not always accurate for predicting cancer…. False positives can cause a lot of unnecessary stress!
Did you get diagnosed post surgery? If so, they should be able to tell you if the cancer was contained in the thyroid or if it was also outside the thyroid. The treatment seems to vary greatly!!
If you have not had surgery yet, maybe you can ask for Affirma testing on your FNA because it has a high accuracy rate for PREDICTING cancer. Since I am not an advocate of removing organs “just in case it’s cancer,” I think going with the best predictor would be worth it. If you have a large goiter and the Affirma testing shows a low level of concern for cancer, you might qualify for Radio Frequency Ablation (RFA) where they shrink the nodule instead of taking out the thyroid gland.
It is important to mention, removing the thyroid gland will result in the need to take medicines that are not always easy to get regulated on (I am having difficulty with this), so in my opinion, surgery is the last option unless definitely necessary..
If you already had surgery…I read that Papillary cancer has the best odds of being self contained and people make a full recovery. If you need to take Synthroid, definitely keep a symptom list with your dosage….it is very easy to think the symptoms are from other causes but collectively they are usually associated with too high or too low of a dose of medication.
Good luck!