(at the end of this post, check out the downloadable I made for anyone with “good cancer.”)
Good question. I didn’t know, either, and had a hard time finding information about it other than medical journals and academic papers online. I wanted stories, examples, personal perspectives, and there just aren’t many.
Quick overview: I was diagnosed in September 2018 with thyroid cancer (thyca). In November, I had a total thyroidectomy (TT) but no neck dissection. The tumor was big but didn’t involve any margins so we assumed the doc got it all.
In January 2019, I took the next step of treatment, radioactive iodine (RAI). This involved taking a radioactive pill and going into isolation until my body stopped being nuclear. This also seemed to work.
In July 2019, I had a follow-up ultrasound which revealed a suspicious lymph node. This was biopsied and proved malignant. Cancer was back, or rather, still there and now exposing itself. In January, another lymph node popped up.
Enter, ethanol ablation.
This is a procedure that isn’t done in very many places in the USA, but is done at Mayo Clinic in Rochester, Minnesota. It is only an option if there are three or fewer involved lymph nodes, if they are of a certain size and type of cancer, and if they are in locations amenable to the procedure. If these requirements are not met, surgery is the way to go.
After several consultations with multiple endocrinologists, a surgeon, a radiologist, blood work, ultrasounds, etc, we concluded that my cancer was a good candidate for the ablation treatment.
This certainly sounded better to me than another surgery. Though the first surgery, the one that removed the thyroid, was a much bigger deal since it removed a vital organ, a second one has risks involved, would mean more complicated future surgeries should thyca continue to poke up its head in my neck (which is pretty likely with this kind of cancer that is quite literally, a pain in the neck), and would require a much longer recovery time. It would also leave a scar from my neck to my ear, but I don’t care about scars. I kind of like them, even, in a dark and morbid way.
Ethanol Ablation could be sort of compared to a biopsy, or maybe a biopsy on steroids. Only instead of taking something (tissue) out, the doc puts something in (alcohol, or ethanol).
Under ultrasound guidance and with loads of lidocaine numbing up the area, and numbing it way down deep, the doctor very carefully injects the affected lymph nodes with small amounts of ethanol. The amount varies, depending on the size of the node. It needs to be done very carefully because should the ethanol leak onto nearby structures, they would be damaged.
It is done while the patient (ie, me) is awake and trying desperately to not move and to not think about what is going on in the neck. This is both to avoid general anesthesia and to enable the doctor to check in with the patient. For example, she had me talk to her a couple of times to make sure my vocal chords weren’t being impacted.
Depending on location, size, number, etc, the procedure can take between 30-60 minutes.
Of course the lidocaine helps but of course the lidocaine burns going in and isn’t 100% effective in masking all pain.
How to describe the pain?
For me, filling the first node was fine. Well, not fine, but with deep breathing, I got through it. The second one? DANG. I actually cried, it hurt so bad. And I have given birth to two of my three children without any pain medication (the other one was a c-section, so bring on the drugs).
Burning pressure are two words I could use, though “pressure” doesn’t sound all that bad. It was bad. It was all I could do to not jerk my head away but to stay still and tell myself, this is healing me, this is good for me.
Then it was over. Take an ice pack, load up on Tylenol, go watch a movie or take a nap.
And in the morning, go do it again. Twice, to give the darn cancer a one-two punch. To check on what was going on in the nodes and to fill them up again.
Only this time, the neck is already tender and bruised and my mind knew what was coming. I’m not sure that was helpful or not. It made me nervous but it also helped me brace myself.
After the first treatment, I felt a little nausea though I’m sure that was more nerves and emotions than due to the treatment. After the second one, I suddenly got the shakes. I had to sit down on a ledge at the hospital and cry for a second before being ready to go home. I’m sure that was also emotion and not from the procedure.
In the car, I fell asleep. Then I slept another 9 hours and woke up with a swollen, bruised neck, but no other side effects.
I ran an errand that next day and thought, “Oh, I feel good.” But then the next thought was, “I had cancer treatment yesterday.” And I almost had to sit down. It still just seems bizarre, like another world, that I have cancer. Or maybe I don’t now. Maybe it is gone.
Ethanol ablation requires follow-up in 3-6 months. There is a decent chance that I’ll need to do the whole thing again. And there is always the chance another lymph node will pop up. Thyroid cancer apparently has a habit of not really going away, especially once it has acted like mine.
All in all, not a bad way to treat cancer. Not good either, the only comfortable thing about all of it was the warm blanket they wrapped me up in for the procedure (life hack: when someone asks if you want a heated blanket, the answer is always, “yes”).
I think the emotional and internal work of all this since September 2018 has been harder than the physical. But, for now, I’m putting it behind me and moving forward. There’s nothing else to do besides schedule the next appointments and take my medication every day.