Since I was diagnosed with thyroid cancer, last month, I’ve been waiting to breathe a sigh of relief. I’ve been counting the days to celebrate, have a kicked-cancer’s-ass party, and buy a something special to mark the special occasion (shoes? a new handbag?).
After a night in the hospital post-total thyroidectomy surgery, I could leave the hospital leaving my diseased organ in a jar and dance out a “cancer-free” woman, right? But it didn’t happen the way that I had expected it to. I learned that I had to wait until the follow up to hear the pathology report on my two 3+cm thyroid nodules and the lymph node the surgeon removed “just in case”. I had to wait to hear if I still had to do the radioactive iodine therapy.
So I waited. I recovered at home, gained some energy, watched bad tv and monitored my seemingly small scar to see its true size, nursed damaged vocal cords, took calcium meds to bring my levels back up to the norm and started my new thyroid medication. I waited for that follow up appointment…the day that I could have my celebration that cancer was now BEHIND me and I could move forward.
The pathology report was good. The best we could have asked for, in fact.
I was happy at my post-op appointment when the surgeon reviewed the report with Paul and me, in his office last week. My cancer was papillary carcinoma and was encapsulated (not free-flowing) on only the left lobe. The huge right nodule and the lymph node that was removed did not have any cancer cells. Amazing news, right?
Right, and wrong.
When I asked him if this means that I’m now “cancer-free” he said this…”you’ll never be able to say cancer-free. We will do regular follow ups but thyroid cancer has a 20% recurrence rate (due to rogue cells that are missed). As you know, that would again, be treatable. You won’t die from this.” and he sent me on my way with requisitions for blood work to check for those rogue cells in a month.
So here I am, still nursing a brutally hoarse voice and happy to be able to work from home, waiting for the blood test at the end of May, when I’ll learn that there is “no trace of cancer cells at this moment”. It is then that I will know if my “grey-area” risk level will warrant the radioactive treatment.
Am I being pessimistic and not my usual perky optimistic self? Maybe. Why am I not celebrating that I survived a treatable cancer while so many others have an experience that is far worse? I don’t know, but I feel like I’m still in limbo.
I just want a certificate?, a tshirt?, a medal? that says that cancer is BEHIND me and that I kicked its ass. I want a sign that I can move forward with relief for me and for my family, breathe deeply, feel healthy and not worry about what’s to come.
I don’t know if that will ever happen? Maybe those who have been through this and worse, can be my guides. Maybe they will know if I will ever stop worrying about that 20%?
Is this the cancer “aftermath” for survivors? The worry that it will come back again? Be worse next time? I suspect it is. I suspect that is exactly what happens after you have “no trace of the disease”. You wait.
I’ve been here before. I know this unsettling feeling will pass, as all worry eventually does, but for today, this is where I sit. Not looking back, because I DID survive cancer surgery, but not entirely able to rest and relax that I can move on. I guess that makes me a “survivor”?
But for now, if you find my “cancer-free” bumper sticker, be sure to pass it along, okay?
connie gorsline
May 3, 2016 at 5:13 pm (8 years ago)Yup. Join the club. You have not experienced a cure for there is as yet none. You I hope have received successful treatment for the cancer you had last week that required this surgery. So..like a chronic disease.
Believe it or not…the medical profession design your treatment…your continuum…chasing the probability of recurrence. That is how cancer works. It recurs. Some profiles make it far more likely than others. Your probability for success is excellent for thyroid cancer is perhaps the ONLY cancer today that is treatable. People do not die from thyroid cancer. Stay under the microscope…stay tested…take your hard earned medication and you could have a healthy long life ahead. Even I can tell you this. For me, I try not to look every day, but I live under a black cloud….waiting…wondering. That feeling never goes away.
Linda P.
May 3, 2016 at 8:33 pm (8 years ago)I can’t guarantee how you will feel in the future. I can tell you this. I remember the first time that I learned that a friend had breast cancer and was doing my very best to be supportive, echoing her statements and expressing how tough it must be. It was only when I left the gathering and was getting in my car that I remembered that I knew exactly how tough it was. I’d had bilateral mastectomies and reconstruction many years previously for a very early breast cancer, and chose the drastic course because my mother’s family was rife with women with pre-menopausal breast cancer. We had two mother-daughter pairs (Mother and I, Mother’s sister and her daughter, my cousin) as well as another cousin. Out of eight women in two generations of my mother’s family, I was the fifth to be diagnosed. So, yes, after a time, you won’t hear that siren going off in your head all the time. Cancer won’t be your first thought when you get a vague ache or an illness that seems to linger. It takes time, and I hope it’s not too much time for you.
Mindy Peltier
May 5, 2016 at 1:52 pm (8 years ago)I wish I could give you some wonderful words of assurance, but you are living the thyroid-cancer reality. It isn’t a cancer big enough for people to even notice unless you tell them. We don’t lose our hair, we don’t go through months of treatment, but we never really will be loosed from the grasp of this disease. My doc told me the same thing. “You won’t die from it, but you will die with it.” It is always good news/bad news. You are doing a good job of processing that uncertainty. We will always feel as though we are looking over our shoulders, watching, wondering, and waiting. Learning to live with this reality will be a life-long pursuit. Some days I’m fine and don’t think about it, but other days it is frustrating. I feel like Eeyore’s little black cloud follows me.
You have the right passion to live your life fully with whatever strength you have, and love your family no matter what. This is wonderful. Just be kind to yourself as you adjust to artificial thyroid hormone and the fact that it will never really end.
Blessings to you, friend!
Peady @ Tempered With Kindness
May 22, 2016 at 6:24 pm (8 years ago)I am still wrapping my head around this, tbh, so I can’t even begin to imagine what you have been going through.
I do know that *you* are one of the strongest people I know (virtually or otherwise) and that ultimately you’ll be fine.
I will just keep on hoping. It seems to be what I am good at. 🙂