Thyroid Cancer Group: Introduce yourself and connect with others

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.

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

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!

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 has been confirmed that it is cancer. However, doctors here are saying to wait for 3 months to see if the tumor grows. They are also saying the size of the tumor might stay the same size for years. So, they are suggesting to only go for surgery if it grows within 3 months. Hence, we are getting confused more.

Welcome @san99999, that must be confusing when your doctors don't agree when is the right time to do surgery. First of all, it is great that the tumor was found so early. Early stage thyroid cancer is very treatable. Most thyroid cancers are treated with removal of the thyroid gland (thyroidectomy).

San, has it been confirmed that you have papillary thyroid cancer? Did the doctor explain why they prefer to wait until the tumor is 10 mm?

with fnac report shows suspicious papillary thyroid..and ultrasound shows right thyroid lobe--1.8x1.5x5.55cm(apxwxh) left thyroid lobe--1.5x1.11x3.33cm(apxwxh) nodule measuring..8.9x5,8mm(widthxap)is seen in right lobe and right isthmus,,m wondering to know to do surgery or not??

m san from nepal,,with fnac diagnosis shows suspicious papillary thyroid,,and ultrasound shows 9.1mmx6.5mm..so is it necessary to do surgery or not,,some doc saying do surgery n some saying wait till 1cm so m confuse what to do ,,can anyone suggest me,,

@fcast1334, getting a rare diagnosis is scary. But you are not alone. You can connect with others who have experience with Anaplastic Thyroid Carcinoma in this discussion:
- Daughter, 45 anaplastic thyroid cancer. Had surgery, chemo, radiation. https://connect.mayoclinic.org/discussion/daughter-45-anaplastic-thyroid-cancer-had-surgery-chemo-radiation/

As you prepare for your meeting with the medical oncologist, here are some questions you might wish to ask:
What stage is my thyroid cancer?
What treatments do you recommend?
What are the benefits and risks of each treatment option?
I have other health problems. How can I best manage them together?
Will I be able to work and do my usual activities during thyroid cancer treatment?
Should I seek a second opinion?
Should I see a doctor who specializes in thyroid diseases?
How quickly do I need to make a decision about thyroid cancer treatment? Can I take some time to consider my options?
What might happen if I decide to have regular checkups but not have cancer treatment?
Are there any brochures or other printed material that I can take with me? What websites do you recommend?
Am I able to access my medical records through an online patient portal?

Sending you warm wishes for the holidays and hope you will have time to spend with family and not think about cancer.

Hi all. I had a lump and my Thyroid removed 12/2/22. I received results on the pathology report yesterday saying I have Anaplastic Thyroid Carcinoma which I am told is rare. I have an appointment with a Medical Oncologist next week to determine treatment.
Does anyone know of a case like mine? Scary since it is rare and not much information on it. My surgeon said he had only seen it 3 times in the years he has been practicing.