I went to my Primary Care Provider (PCP) who ordered blood work and it came back Ferritin 10 (range is 10-232.) I emailed him when I saw the results and asked for a referral to a Hematologist. I received a reply that it wasn't needed because I wasn't anemic. I emailed again and received no reply. So I made an appointment to have a little chat: Me: "I really think I need iron infusions." His reply: "I don't know who is telling you that you are anemic but you aren't." I explained my symptoms again and I finally got him to refer me to a Hematologist. Me: "I get you are saying I am not anemic but do you have a problem giving me a referral? I'd like to hear that from a specialist." Him: "No, but you aren't anemic." Me: "Good."
I couldn't see the Hematologist that I'd been referred to a few years ago as my insurance no longer covered him and was sent to a new office and I mean brand new, they were still having furniture delivered, disorganized, not fully staffed. I wasn't pleased but New Hemo Doc was pleasant enough and said he'd put in for infusions but he didn't think they would be covered until I dropped below 10 (he was right they were initially denied) but he ordered more blood work said he'd resubmit as soon as my ferritin dropped below 10 and then he asked me about a nodule they had found in my neck via ultrasound this past summer.
Rewind... well over a year ago I went to a health fair with my Mum. We both had a free stroke test ultrasound. The technician told me after mine that I should tell my Dr that he saw something on the ultrasound and to give me a thyroid test. At my next appointment, I mentioned it and my PCP (yes, same one as above) said something to the effect of health fairs causing unneeded tests... he'd order a thyroid test and ultrasound but it was probably just a nodule... tons of people have nodules that they are only cancer in 1% of cases so it's "usually unnecessary to have a need stuck in your neck." My blood work came back "fine" and ultrasound confirmed a nodule but again he gave me the line about the needle in your neck... so I passed on the needle.
Fast forward...
New Hemo Doc: What's this nodule mentioned in your file. Have you had a needle biopsy on it?
Me: No, my PCP said tons of people have them, that they are only cancerous in 1% of cases so it's usually unnecessary to have a need stuck in your neck. Why? Could that be causing my issues?
New Hemo Doc: It could. It's no big deal. It's a fine needle... like blood work. Get it done.
I scheduled the biopsy for December 20th, trying to get in before the end of the year when my insurance was changing. I figured if I didn't just do it, New Hemo Doc might not push for infusions. It was a fairly easy procedure... sort of like the ultrasound of the neck I had in the summer but instead of lying down I was in a cool motorized reclining chair that tipped me back, I felt a little pressure, 2-3 needle pricks then ice. I waited in the cool reclining chair with ice on my neck while the Biopsy Doc examined the tissue. Instant pathology results. I remember thinking that's great I don't have to wait for days to get the all clear and I really want one of these chairs.
A few minutes later Biopsy Doc returned, "Well, it's thyroid cancer." I remember saying "What?!" She must have walked into the wrong room. "Yep, it's thyroid cancer but if you are going to get cancer this is the best cancer to have. It's highly treatable. I'll be sending your doctor the report and you should expect a call from him tomorrow but if he doesn't call you, call him. Do you have any questions?" I think I asked her what the treatments are? Do I have to have chemo? Am I going to lose my hair? Sort of in a rapid-fire string. I felt like I should have better questions but this was not supposed to happen. I remember her saying something about surgery and chemo only being necessary if it's spread beyond the thyroid. I could feel myself welling up and just needed to get out of the building. So I said thank you, was handed some aftercare paper and walked into the waiting room. My Mum was with me and I remember her looking at my face and I could feel my eyes widen in that "holy crap!" deer in the headlights look and she said "what, what" and I remember just saying, "come on, let's go" as I walked out of the office. I got to the parking lot before I burst into tears and told her. I remember straightening myself up and saying nothing has changed. I walked in there with this and the only thing that has changed is me knowing and how everything was going to be OK. So yeah... not a good day in my world.
I spent the rest of the day Googling, freaking out, crying, and a little cursing "WTH?! My PCP said 1 f---ing percent." (It's actually closer to 5% of nodules that are cancerous as I am learning more.) My Hemo Doc called me later that night and said, "So you got some bad news?" "Umm yep." He said he'd see me on the 27th and we'll talk about finding a surgeon to remove the thyroid." I already knew from my Googling I was looking at Full or Partial Thyroidectomy (perhaps removal of some lymph nodes in the area) then depending on the biopsy I might need I-131 treatment where you take a radioactive iodine pill and need to be quarantined for a few days from people and pets (it targets and kills any remaining thyroid tissue) and a lifetime of a prescription thyroid hormone replacement medication (oh joy) but that is usually it. Unless... cancer has spread beyond the thyroid and then well you know the drill chemo, radiation, that hair loss I was so worried about. But... one step at a time. I remember telling him I had new insurance starting in January, that I was hoping it wouldn't cause delays and he said to bring that information on the 27th. He said to try and have a Happy Holiday and I said you too.
Christmas. Wow, I really had forgotten. I would try and enjoy it. It was just my Mum and I. My sister just had her 2nd knee replacement so was recovering from that still and my brother had visited earlier in the month. We went shopping for a few things on Christmas Eve. I made a few seafood dishes, it's tradition and I tried to be cheerful but my mind kept going back to worst-case scenarios and what-ifs which only got me upset and gave me a gnarly headache and the Tylenol I kept taking wasn't doing a thing for it, so I went to bed pretty early. It was a quiet Christmas Day we stayed home and watched movies, I made a couple of steaks with sauteed mushrooms and I made a super yummy loaded cauliflower side dish.
On the 26th we decided we needed some things from the store and at around noon when I walked around the corner of my house... I was staring at... an empty driveway. My car was gone. Seriously... you can't make this shit up. We think based on our neighbor not seeing it on Christmas Day it was gone late Christmas Eve (he got one of those hovercrafts for Christmas and was flying it down the street and thought we were out visiting for the holiday... it's our only car.) I filed a police report and as of today they still haven't recovered it. I remember waiting for the cops to come take the report and thinking well had this happened a few days ago I would have been way more devastated but hearing the word cancer sort of puts everything into perspective but... WTH?! Seriously?! I actually had to Uber to my Hemo Doc appointment on the 27th to hear about my cancer diagnosis. And OK, I know it's bad karma but I figure I'll get a pass on this one... my car trunk, if you aren't careful can fall on your head. I know about it and it's still happened to me, twice... and it's gnarly-knot-creating-concussion-hard. Gosh, I hope the creeps who stole my car need to put something in the trunk ;)
Anyway... the New Year came and with it a new attitude. I went to Denver for the Obesity Action Strategic Planning Meeting/Retreat and am really excited about all the plans we have for the year. I'm serving as Chair of the National Board this year. All the great plans are keeping me busy and sane. I can't wait to share all those throughout the year and am hoping to see everyone in July at the Your Weight Matters National Convention. Big plans this year so I need to kick cancer's ass and move on...
So where I'm at now... my insurance change caused some delays for new pre-authorizations but I think we are good on that front now. I had an iron infusion this Friday (my Ferritin dropped to 9 on my last blood work) and while the only in-network surgeon is about 50 miles away I understand he's top notch in his field. I see him this Tuesday for a consult and we'll hopefully schedule surgery in February. Thyroid cancer is very treatable and I'll likely be all good with the removal of some or all of my thyroid. Fingers crossed and prayers welcomed. I'll put some resources I've found helpful at the end of this post for anyone recently diagnosed and Googling who stumbles upon this. I Google a lot and I would be lying if I didn't still sometimes start worrying about what if's (damage to vocal chords during surgery, medication-related weight issues, calcium issues, etc. etc.) but I try not to stay in those thoughts too long. There is power in positive thinking.
If you are still reading along... sorry I know this was loooong... thank you. I have lived the last decade sharing my life post-Bariatric Surgery on this blog so it felt strange not sharing this past month, I just needed a little time to process. I thank you in advance for prayers and good thoughts. They are much appreciated.
Oh and if you take anything away from this blog entry I hope you take this: if you know something is not right DO NOT let anyone push your concerns aside. You know your body better than anyone.
Thyroid Cancer Facts:
• Thyroid cancer is the most common endocrine cancer.
• The cause of most thyroid cancer is unknown.
• Thyroid cancer is one of 13 cancers associated with overweight and obesity.
• Thyroid cancer is a malignant tumor or growth originating within the thyroid gland. It is also called thyroid carcinoma.
• Thyroid cancer is one of the few cancers that has increased in incidence over recent years. More than 56,000 people will be newly diagnosed with thyroid cancer in the United States in 2017 and more than 600,000 people in the U.S. are living with thyroid cancer.
• 2 of every 3 people diagnosed with thyroid cancer are between ages 20 and 55.
• Thyroid cancer is more common in women than in men. More than 7 of 10 people diagnosed with thyroid cancer are female.
• Thyroid cancer is usually highly treatable when found early.
For those wanting to learn more about Thyroid Cancer:
American Thyroid Association - great resource, current treatment guidelines.
ThyCa - this website has been a great resource for information, videos, and patient support.
Here's a great UCLA video presentation: Thyroid Nodules & Thyroid Cancer: What You Need to Know
Thyroid Awareness - Check your neck.
American Thyroid Association - great resource, current treatment guidelines.
ThyCa - this website has been a great resource for information, videos, and patient support.
Here's a great UCLA video presentation: Thyroid Nodules & Thyroid Cancer: What You Need to Know
Thyroid Awareness - Check your neck.
