Thyroid Cancer
I wasn’t sure where to post I could just use support. I finished treatment in October 2015. IDC, lumpectomy, chemo, rads. Actually the last couple years I’ve really felt my body heal from everything I went through. I was in a good space mentally and physically. The last few months though I’ve been having trouble swallowing. Thyroid issues run strong in my family. Not cancer though, just hypo/hyper, graves and goiters. I figured at some point I might have issues but not cancer. Well the did an ultrasound last week and found a nodule that’s suspicious. Solid, micro calcifications, all signs pointing to cancer. Referred me to an ENT. They called to schedule an appointment and the earliest I can get in is January 4th. I’m struggling today. Feeling anxious but mostly sad. Has anyone else gone through this? How am I going to get through three months of this feeling? Idk. I could just use words of support and encouragement.
Comments
-
Hi @fiona70 , I'm sorry that you have to wait three months for an ENT appointment and probable biopsy. Possible thyroid cancer isn't considered a medical emergency since it grows very slowly and is extremely survivable. Sometimes observation is prescribed if the tumor is small.
I don't have any family history of thyroid issues but five years ago had a near total thyroidectomy to remove a large goiter which was obstructing my airway unless I was sitting upright. The surgeon left a small strip of tissue to preserve two parathyroid glands. Since bc radiation my thyroid has been growing back with a vengeance, is once again quite visible and is deviating my trachea. Two nodules were biopsied (benign.) My endocrinologist is keeping an eye on it since I am supposed to avoid intubation (pulmonary issues) and waiting/buying time until my trachea opening is at 20%.
Thyroid surgery was easy to recover from even though I had an annoying drain. The scar across your throat leads to all kinds of slasher comments but mine is now hardly visible. Benign thyroid nodules can cause swallowing problems. There are ways to shrink these without surgery (medication, radiofrequency ablation, radioiodine treatment, ethanol ablation and laser photocoagulation.) It's tough to wait since you imagine the worst but in this situation the worst is not too bad. Come back and let us know what the ENT has to say. Here's hoping for good news!
1 -
I'm sorry you are going through this. I have been going through something similar. My IDC diagnosis was in April of '22, and my MO ordered a staging CT scan. A large nodule was seen on the right side of my thyroid. An ultrasound was performed and immediately after that I started developing symptoms- trouble swallowing and feeling like I was being strangled when I lay down. The ultrasound came back suspicious for cancer and a biopsy was scheduled for 8 weeks later. I was going through chemo while all this was going on and I was terrified. Shortly after my double mastectomy I had the biopsy and it came back benign, but I developed a new symptom- every time I talked it felt like a cat was using my throat for a scratching post.
I met with a surgeon and he recommended I have it removed due to it's size alone (3.5 cm). Three months after my breast surgery I had a right thyroid lobectomy and also the isthmus removed. My symptoms prior to surgery are gone, but now, where the isthmus was, is a feeling like I have a lego stuck in my throat. It's been 10 months (I was told it would go away in a few months.)
I just had a follow-up ultrasound and one of the two nodules I have on the other side came back Trirads 4 but is too small to biopsy, so I will have another U/S in a year.
I hope you have a benign result and I know how awful it is to have this hanging over your head!!
1 -
Another one with thyroid issues but not cancer. I have had benign thyroid growths for well over 20 years. I have been treated for both under active and over active thyroid as well as having radioactive iodine therapy and numerous biopsies.
Waiting is difficult but as has been said, possible thyroid cancer is not an emergency. Still, the waiting is stressful. Can you put yourself on a cancellation list to be seen sooner? Take care1 -
I am going to try the only other ENT in my network Monday. If they can’t get me in sooner the original Dr. said to call every day to see if they have a cancellation. It’s good this is probably slow growing. Having to call everyday is just a reminder of this crap and I’m not sure I’m willing to do that every day. But then again all the symptoms I’m having are also a dumb reminder so I guess I’m just gonna feel sad today then do what I gotta do.
1 -
Fiona, this is anxiety provoking but you really don’t have much to worry about. I went through this while being diagnosed with breast cancer. My endocrinologist told me to deal with the bc and the thyroid issues could wait. Even thyroid cancer is highly curable. But you do not have thyroid cancer yet. After an ultrasound, I was recommended a biopsy. Thyroid biopsied are often inclusive. Even after having a Tirad 5, and a full removal of my thyroid, it was benign. So please, not only should you not panic, but take your sweet time to gather all the facts (that often are inconclusive) and make the best decision for you. When I was told benign after every negative indicator, I didn’t know whether to be relieved or mad. Now survival depends on synthroid. You situation is so common. So please relax and take the time you need to make the most educated decision. Even the worst case scenario is very optimistic. All the best!
1 -
Just an update on current thyroid biopsy options. If the result is Bethesda 3 - 5 with a malignancy chance of 10 - 50% a lobectomy or total thyroidectomy is SOC in the USA since thyroid biopsies usually can't provide a definitive diagnosis. Malignancy is only determined after post surgical cytology. There is a genomic test available, ThyroSeq v3 which analyzes 112 genes in the biopsy sample and is pretty accurate at predicting which cases are benign. The company claims a <3% false positive/negative rate; a clinical trial run by UCLA found the false positive/negative rate at <1%. A benign result means many can avoid dependancy on synthroid along with other SEs like parathyroid and vocal cord damage. Medicare and some insurances cover the cost. The company says they will offer the test for a much reduced rate ($300 quoted) if someone's insurance doesn't cover it.
There are instances where surgery must be done for compressive symptoms, hot nodules or lymph node involvement but even then there are new options. In Europe and Asia radiofrequency ablation is frequently used to shrink nodules and eliminate small cancers. There are not many doctors who have trained to do this in the US. My hospital based thyroid surgeon told me that if someone's insurance denies this as "experimental" she refers them to a surgeon in a nearby state who will do an office based procedure for about $6,000, not cheap but maybe worth it to avoid all the problems that can come with thyroidectomy.
Thanks to radiation scatter I need a repeat thyroidectomy five years after an emergency surgery for compression. Since I am down to 25% of my airway, intubation is risky for me, repeat surgery has a much higher complication rate and my ThyroSeq was negative for cancer genes I'm cleared to have RFA done on a 5.5 cm nodule in April (paid for by Medicare.) I spoke to a professional trumpet player who paid to have RFA for a small cancer in his neck. He was back performing within two weeks rather than the 3 months he would have needed off and had a positive opinion of the procedure which is done awake with local anesthesia.
The ATA has not updated its guidelines since 2015 so none of this is in the US standards. There seems to be resistance from thyroid surgeons even though mine thinks it is unwarranted given the number of thyroidectomies and other head/neck surgeries which still need to be done. While no causal relationship between breast and thyroid cancer has been found there is a high statistical correlation between the two. I hope this helps anyone with both bc and thyroid issues.
2
