Papillary Thyroid Cancer and Me

I’m doing the cliché thing and writing a blog post about my recent adventure with Papillary Thyroid Cancer, which obviously has nothing to do with movies or work, so we’ll squeeze it in under the “random” category and say it fits. I'm hoping that others in the same boat will read this and find out about some of the bumps and twists I’ve encountered that I hadn’t read about or been told of. I'm also hoping that others will share their experiences. Maybe you were recently diagnosed, or your surgery is in a few weeks, or you’re a recent post-op like me. Whatever your case may be, below is my adventure and I would love to hear yours, so please post comments or links to your blog, advice, or whatever you'd like to share below.

(Warning - Personal details are mentioned in this. I just want to give you a heads up before you start reading) It’s late August and while brushing my teeth I notice a small lump on the lower right side of my neck. Having never noticed it before, I decide to go to my doctor. He moves the lump around, pokes it and other stuff and doesn’t seem too concerned. He recommends an ultrasound and a specialist, just to make sure. The ultrasound reveals that not only do I have one thyroid nodule (the one I went to the doctor for), but that I have another one, on the left side of my thyroid. The specialist, an Endocrinologist, does another ultrasound and decides to do a fine needle aspiration biopsy. I’m terrified of needles, but I know it is important. He has a wonderful nurse who explains every tool to me and walks me through the biopsy. No panic attack, yeah! After another week of waiting (and a week before my 26th birthday) I get a call from the specialist. I don’t remember his exact words, but in summary the Endocrinologist says, “Your biopsy results came back as highly suspicious for cancer.” He mentions that since there are two nodules and one came back suspicious, surgery would be the best option. SURGERY! Eeek! This is when I tell my boss and my friends. I am not telling my immediate coworkers yet though, I am waiting until I have an actual surgery date to break the news to them as well as my extended family.

Another week or so goes by and I meet with the surgeon the Endocrinologist recommended. He’s extremely friendly and upbeat and reassures me that there will be no hideous scar. He tells me I’ll be out of work for 2 whole weeks. More time goes by before his nurse calls to schedule the surgery. I now have a date. November 17th, 2008 will be the day that, for me, lives in infamy. Now I can finally feel comfortable sharing my news with everyone.

My coworkers are great about it. Nothing but hugs and sympathy and advice. And that night I write my extended family an email. My close friends are happy for me that the waiting is over, they know how I hate uncertainty. My parents and brother start planning their time off from work to help and stay with me at the hospital. Everything is in the works – thank goodness.

My last week at work is a doosey. This is the week it seems that all my clients decide to call. It is exhausting. Conveniently, my last Friday is a potluck lunch! Yummy!

The weekend before the surgery is great. It’s Friday night and I’m going out to a dinner with just my girlfriends. One friend is a nurse at the Children’s Hospital for the Kings Daughters. I feel bad, I told her about the surgery during her bachelorette party. Our Girls Dinner is great. Everyone gives me hugs and well wishes on our way out.

Saturday I do things around the house to prepare for my stay at the hospital (which I have never done before) as well as a stay at my parents house while recovering for a few days. Saturday night I plan on sleeping a lot. Sunday is my day with my family. We go out to eat, to a movie and relax at the house. I am sleeping there the night before the surgery because my mom is taking me to the hospital in the morning.

November 17th - Monday morning – Surgery Day. I don’t have to be at the hospital until 12 pm, but, while in the shower, they call to see if we can come in early. My mom and I get a head start to the craziest part of my adventure. We arrive, check in and finally get escorted to the prep area. First there are a lot of questions that I have already answered 5 times previously. Then I have to put on a hospital gown and then the IV. As mentioned before, I’m terrified of needles. I freak out of course, which is the strangest feeling because it’s uncontrollable. And then it is done. The anasesiologist pays a visit. And finally my surgeon comes in, meets my folks, checks out my neck and where the incision will be made. A lot of other people come in with scrubs already on and introduce themselves, but I can’t concentrate. I know, since the surgeon has just been in that it is getting close to zero hour. And sure enough, I start to feel sleepy. At this hospital a lullaby is played over the loud speaker when a baby is born and as soon as the nurses administered the sleepy meds and start to wheel me away, the lullaby comes on. We all have a nice laugh. I have a brief flash of being wheeled down some halls and the actual OR, but then it’s black and my life’s about to change.

I wake up in my hospital room with the door open and a couple of nurses, my family and a family friend around me. Everyone tells me I am ok and that the surgery is over. The surgeon comes in and tells me it went fine but when he opened me up he could see that it was in fact cancer. I really did have thyroid cancer, I can’t believe it. He had to remove some Lymph nodes, which is very common and I will later find out he removed some muscle from my neck as well because the cancer started to branch out. Gross. He said that the surgery had taken longer than expected (3 hours), but that it went well.

Recovery – The rest of Monday is a blur but at some point my body realizes trauma has been done and freaks out. Commonly from this surgery the parathyroid glands go into shock. The parathyroid glands control calcium levels and when your body doesn’t get enough calcium it cramps up. My entire body starts to cramp, happening so fast. One minute I tell my mom I feel tingly near the bottom of my jaw, then it spreads to my eyelids, it twists my mouth to the left, my fingers contract and look like claws, my abs, and butt also contract and now I’m laying about 2 inches higher than normal. The nurses know what is going on immediately. They have to take blood from my claw like hands and one nurse frantically jabs me trying to get a working vein. I am too concerned my lungs and heart might contract to worry about needles though. It takes two nurses to straighten out my arm so they can draw blood and send it to the lab for the calcium levels. The lab takes an hour. It takes another hour to order the calcium for my tangled body still having muscle contractions. Thank goodness for my mom who messages my tired legs and jaw and wrists. I’ve never been more terrified for myself in all my life. Finally relief comes. Two pouches full. It takes a few minutes for my body to absorb the calcium and send it in the right directions, but it does. And I can relax (especially my rear end). The next morning I get ice cream for breakfast and have a quick meeting with the surgeon (who already knows about the previous night’s incident). He says he mentioned there might be a reaction from the lack of calcium, but I had NOT expected that. Once the doctor leaves the nurses come in carrying a bedpan. I am not happy about this. I beg the nurses, “Please, I really do have to go, if you could just help me up to the bathroom.” 20 minutes or so pass - nothing. “That’s common after being under anesthesia, just give it time,” they say. And soon enough they're proven right.

Tuesday - My dad and I watch talk shows and the news. I’m in and out of sleep during this first full day of post surgery recovery. About every 15 minutes a nurse comes in. Thank goodness for those nurses. That is not a glamorous job, but I need their help. My mom and brother come by. Tuesday night’s entertainment is two of my friends stopping by and me trying something new, “Percocet.” I like Percocet. Morphine kicks my butt and leaves me foggy headed, but the Percocet is great. After my friends and dad leave my mom and brother take me for a walk around the hospital. When I finally fall asleep, I sleep through the night despite receiving another visitor, which I will not know about until a day after I leave the hospital. There are some treats in a zip lock bag on a table next to my bed. During the night my mom hears a little noise. At first she thinks it is the heater, then she sees the newspaper covering the treats move. She lifts the paper to find a mouse enjoying a late night snack. She seals the bag and brings it to the nurse’s station who get the maintenance crew to take care of it. I have no idea about the mouse.

Wednesday - The nurses don't have to help me with everything today. Yeah! The nurses steal popsicles for me because I feel swollen. Breakfast is eggs and pancakes, I am so excited. I take a couple of bites and stop. Gross. Something isn’t right. And then I throw up. Dang it. For the first time since the surgery I couldn’t stop the nausea. Three times and it is over. I finally get permission from the doctor to go home and there is light at the end of this nasty morning. The surgeon’s assistant takes out the drains and about 10 surgical students watch. After that it is a sprint to get dressed, pack up and get to my own bed as soon as possible. At home, we have soup for dinner, which I inhale, I am so hungry. And then another visit from a friend which is when my mom tells me about the mouse.

Thursday is a big day. I take my first shower since the surgery, my mom and I run errands and pick up Panera for lunch. I am exhausted after just blow drying my hair, so by the time we are done with errands and lunch, it is naptime. My neck and back are miserably sore from the previous night, so I take Tylenol and head to bed. I fall asleep with the TV on and wake up at about 4 am and like a little baby I wine about my back and neck hurting and cry myself back to sleep.

Friday – Friday is not a good day, which is frustrating to me. Thursday was great with the errands and such. But Friday, all I want to do is sleep and eat. I wake up and have breakfast and go back to bed. Wake up around 12, eat lunch and back to bed with my mom calling after me, “See you for dinner then.” It is true. I sleep about another 2 hours. I shower and eat dinner with my parents then there is a knock at the door. My ride is here. I am going to the movies and my friends are nice enough to pick me up. The trip to the movies is great, but I am pooped by the time I am dropped off. I get into bed hoping that maybe this night I’ll sleep comfortably. You know, the last thing you think of as part of a recovery is to be your back and the back of your neck hurting. I sleep a normal amount of time this night.

Saturday – Everyone has something to do, so I decide it is time to go back to my own place. I am worried I have forgotten how to drive, but, as I told my dad later “I didn’t hit anyone or get lost!” Having ADD, not taking those meds for a week after you’ve taken them every day for 5 years, along with still having some minor effects of anesthesia, make a person a little loopy. So I’m worried about driving. Later, my friends are celebrating a birthday, so I join in. Tonight I get to sleep in my own bed again. Sadly, it is just ok. I still can’t get totally comfortable.

Sunday - My mom calls in the morning to make sure nothing happened to me during the night, which it didn’t. I run an errand and go to my folks. We go to an early dinner and enjoy some TV. The night ends with a million “Be careful driving” wishes and I am off. I don’t get to bed until late, but that is ok, because tomorrow I don’t have work. I am still on medical leave. But Sunday is my worst night of sleep yet. It takes forever to fall asleep. I sleep for about 3 hours, wake up and can’t go back to sleep no matter what I do. I decide to make breakfast and try sleeping again. It doesn’t work. My throat is starting to feel tight so I go to the store and buy a ton of popsicles and some Tylenol PM. My meals consist of soft noodles and popsicles, which is ok by me. At 10 pm I take the Tylenol PM and conk out around 11 pm but wake up at 4 am again. At least I slept straight through until 4 which is a good 6 hours of sleep and I am fine for the rest of Monday.

Tuesday – I have an afternoon appointment to see my surgeon, get the Steri-Strips taken off my incision and check out my scar for the first time. I arrive early, and they see me early. He does an EXTREMELY fast check up and examines my neck. Everything seems fine to him. He has me look at my scar in the mirror. “Oh ok.” I say with mild enthusiasm. “Worse than you expected?” He asks. “No! It looks totally fine. I didn’t know what to expect.” And that is the truth. I was keeping an open mind about my scar on purpose. I didn’t want to picture a horrific scar and then cry at the sight of a fairly good one and I didn’t want to imagine no scar at all, because I didn’t want to be disappointed when there was one. But mine is fine, it really is. Small and healing well, what more can you ask for. I try to hand him some paperwork so that I can go back to work on Monday. He tells me to hand it to his nurse. I try to give it to her and she says to hand it to the patient check out coordinator. I hand it to her, emphasizing its importance. Later, I call with the fax number for the paperwork and again emphasize the importance of it being done that day or the next. The rest of the day goes by quickly. At night I take more Tylenol PM and Tuesday night turns out to be the first night I sleep through it completely. I do a little happy dance in the morning.

Wednesday – Today I have an early appointment with my Endocrinologist. He monitors my hormone and calcium levels. Today the Doctor explains that Papillary cancer sometimes can spread to the lungs, so I need a chest X-ray. We also talk about the radioactive iodine pill I have to take. Both of these things freak me out and Wednesday is not a good day. The radioactive iodine pill means I am out of work AGAIN for an entire week! This is very frustrating and I almost cry. The Endocrinologist emphasizes that there is no rush and says, “If there was an immediate threat to your health, I’d tell you to cancel your vacation.” Good to know because I am going on vacation in a month or so. Then I’m off to get blood work done and the X-ray. As soon as I get home I email my boss. I also email the HR lady to see if she’s received the paperwork I left at the surgeon’s office yesterday. The HR lady tells me she has not received the paperwork yet. Now I’m mad. I call the surgeon’s office and ask to speak to the nurse. The next hour is a series of phone calls that are way too boring to describe, but they do not go well, and I’m so angry I’m shaking by the time I actually speak to the nurse. I frantically explain the situation and she tells me that paperwork takes 7 -10 days, a policy I was not aware of. She mentions it was on the form. I ask, “What form?” She says, “You didn’t get a form?” I say, “No.” She says, “Ok well I’ll have to talk to the girls up front about that. And I’ll get your paperwork done as soon as I can. It won’t be today.” Even more frantically, I emphasize the severity of this paperwork and she finally says she’ll get it done on Friday. I find this aspect of the whole surgery very hard because it’s giving up control of when I go back to work to someone who has no idea how imperative it is to be there on Monday. I am panicked and upset for the rest of the day. Both parents encourage me to relax. Relax and let go of the possibility of the cancer spreading and let go of something I have no control over – the paperwork. I need to sleep because we’re getting an early start to a long drive to visit family in western Maryland.

Thanksgiving – This day is difficult because there’s so much up in the air and like I said, I hate uncertainty. Which dates I should pick for the radioactive iodine pill, if the Endocrinologist saw anything in my X-ray and if my paperwork will make it to my office by tomorrow. Today is not that great physically either. I’m weak from the stresses of yesterday in conjunction with the fact that I am still having some issues with getting my body back to normal. Also, I know there will be a lot of hugs and questions from my concerned extended family as this is the first time I will be seeing most of them since learning the news. The drive is unexpectedly more mountainous and takes a very long time. Traveling or anything that’s not a part of my regular routine is more draining than usual. I’m only a week and a half post surgery and still don’t have full range of motion, can’t sleep on my side yet and as mentioned above am still having certain difficulties.

Thanksgiving and Beyond – Now I am a month out from surgery. Full recovery is taking longer than I thought. It’s weird because some things such as singing to the radio, etc, feel different than they did before. The surgeon has cut things, sewn them back together, and other surgery stuff I don’t want to think about, so all my bits and pieces are probably not in the exact same place and getting used to them in their new locations will take some time. Also, I’m still numb on the lower part of my neck. Surprisingly (in a good way) I didn’t bruise. I’m still using Scar Guard on my incision and wearing turtlenecks to cover up the fresh scar. Thank goodness it’s the winter time. I am finally sleeping on my side comfortably and all functions are back to normal. I am pretty sore by the end of the day and my energy levels go up and down due to the temporary hormone I’m taking. It’s temporary because I’ll soon be taking the radioactive iodine pill and this temporary hormone is easier to get out of my system. That will be my next post, if you’re interested. So stay tuned because this roller coaster called Papillary Thyroid Cancer isn’t over yet.


Anonymous said...

Thanks for the post. I'm a 36 year old mom of 7 and I just had my surgery (total) on Monday and found out last night that it is papillary cancer that was in multiple lymph nodes. I am freaking a bit and have to do the radioactive iodine in NYC soon. I would love to talk to you further. If you could email me at adoptomom@hotmail.com maybe we could exchange numbers???
Thanks, Vanessa

BloggingFun said...

Hi Vanessa,
I emailed you, did you get it? Check your email and I look forward to hearing from you :)

Anonymous said...


I am a 37yr old single mom of 2 children. I have also been diagnosed with PTC this month! I go to meet the surgeon tomorrow. Thank you for posting this. I at least have some sort of clue on what to expect. How long were you out of work total? Would you mind emailing me. It is nice to talk to someone that has been down this road. ballmar71@msn.com

Thank you!

japalang said...

Hi. So glad to find your site after finding my PTC last month in Japan. I am Japanese, living in NYC. I see 2 people posted-that'd be great to be in touch.

Mine is 11mm, located on left bottom. 1st dr said surgery needed eventually, but since this is a slow-glowng/low-risk cancer, doesn't have to be right away. 2nd dr said I may not even need a surgery, advised another echo check-up in 6 months. Having many books read and several opinions obtained before came back to NYC,I now
wonder if mine really needs a surgery after all.

Japanese drs are more conservative.They will try hard to keep as much thyroid as possible, (needless to mention, parathyroid for sure,)to avoid lowering quality of your life after surgery. U.S. drs tend to remove the whole thyroid for 2 major reasons: 1) lawsuit is big here 2) medical bill is high here, so they want to do all in one shot.

Japanese drs emphasize that "unnecessary surgery" should be avoided, unless your PTC was either significantly oversized, or widespread. However, having your blog read, I guess certain things won't be discovered unless they cut to see inside. I should make a decision, but really don't know what to do...

They also mentioned that PTC in Japan is considered "better quality" than ones here,since Japanese consume lots of seaweed:iodine. (But once your thyroid problem was found, you should go low on them.)

I booked a surgery in Japan so far, and also started going to see Sloan Kettering Center dr and some others in NYC. Did you have to remove the whole thyroid, if so, was that the only choice you were given from the beginning? Japanese drs said I will only need 1 week surgery admitting->2 weeks home rest->then follow-up dr visit every 3 months for 1 year->then every 6 months->every 1 year...
I am also so worried about how the scar will be like. So if this surgery is really avoidable, I'll be relieved though it may be a little risky? I am planning to get pregnant, so it is a tough decision.

Although this is low risk one, cancer is cancer. I am freaking out like you all. That'd be great to be in touch to share info/experiences! I can receive mails.

BloggingFun said...
This comment has been removed by the author.
Papillary thyroid cancer said...

Cancer name itself is dangerous. Thyroid cancer is very rare. It starts from thyroid gland and is kind of neck cancer. According to a new study, it has been found that those who stay in volcanic regions, are at higher risk of thyroid cancer. Papillary thyroid cancer is a type of thyroid cancer which mostly found in women. If anyone observes symptoms of it, should consult doctor immediately.

Ty said...

Japalang, you made a good point US doctors are more worried about getting sued than giving you the best options. It's true that it's not as common as other forms like lung cancer but still as serious.

Ty said...

The name cancer always poses danger to anyone who suffers from it. One thing about thyroid cancer is that it is very rare. This illness most especially occurs to women. That is why it is important that you obey your doctor’s prescriptions upon consultation and diagnosis of the disease.

Anonymous said...

I was just diagnosed with papilary carcinoma thyroid cancer. I didn't have any symptoms. My doctor found it during my annual exam. My thyroid was enlarged and since I had a family history of it, I had an ultrasound. They found 4 small nodules in my thyroid. They did a fine needle aspiration on the 2 largest. The largest one is cancer. I will be having my thyroidectomy in a month. I am going on a trip of Europe with my Mom 3 1/2 weeks after my surgery. The surgeon told me I should be recovered enough to go. He didn't want me to wait until I got home to have the surgery. It's an escorted tour so we'll be on a bus, and also a cruise ship. I'm just worried about being tired. Thank you for sharing your experience!