Tag: thyroidectomy

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Cancer Me

The PET Scan That Wasn’t

A few months ago, I experienced the biopsy that wasn’t, and I found out on Thursday, that my PET scan isn’t going to happen today either.

When I left work on Thursday, I checked my messages, and the imaging clinic asked me to call them as soon as possible.  The lady there said my insurance had not approved the scan, because I “only” had stage I papillary cancer.  She said my insurance said I had to have stage II thyroid cancer, OR stage I thyroid cancer (papillary) and a thyroidectomy.  I told her I was scheduled for a thyroidectomy next week.  She clarified even further and said at stage I, there has to be indication of reoccurrence of the cancer.

She told me without the reoccurrence, it is nearly impossible to get the insurance companies to pay for the scan.  She said the thyroidectomy would make a stronger case, but it would still be very difficult.  I sat in the car, stuck in construction traffic, in a state of disbelief- yet again.

I wanted the PET scan so I would have peace of mind.  I want to know the true condition of my health.  The reality that an insurance company can deny me that simply because I am not sick enough, or because the cancer hasn’t spread yet– just is inconceivable. 

The lady told me she didn’t want me to be surprised tomorrow at this news (which I appreciate they did call to tell me this), and if I still wanted it, I would have to pay it out of pocket.  She said it is over $2,000.  On one hand, this is my health-money shouldn’t be an object.  But on the other hand it occurred to me that there probably is a reason the insurance company won’t pay, based on some research my family has done for me.  

The chances and statistics of stage I, papillary thyroid cancer spreading beyond the lymph nodes is rare.  If it does happen, it is very slow moving and more than likely would take years for this to happen. I remember Dr. S. telling me my cancer was in the very early stages, and that we had caught it early.  Dr. S.’s office had said usually the endocrinologist ordered a PET scan, down the road if it was needed.  The thought occurred to me that maybe, just maybe, the chances were extremely low that the cancer had spread.

I asked the lady if my thinking was correct.  I can’t remember her exact words, but she confirmed that if the cancer had spread, it usually was at stage II and beyond, hence the reason why the insurance company wasn’t going to pay for the scan at stage I. 

I thanked her and told her I was going to hold off on the scan for now.  It should be causing me reason to be happy, but I couldn’t process this is good news or bad news.  As the night progressed, I feel like it is a little of both- good that it does seem to be rare that the type of cancer I have would have spread into other organs this fast.  But bad, because I still don’t know with 100% accuracy, and chances are I won’t know for some time.

 One of my friend’s husband’s suggested that I call the insurance company and ask them firmly why they are not paying for this scan, even though my doctor ordered it.  I don’t have a ton of energy to “fight” the insurance company.  I am not Erin Brockovich right now, but I do think I can manage a call, or have one of my family members do it for me.

My dad, sisters, and I agreed that for now, it is probably best if we leave it on the back burner.  The results of the scan will not affect my upcoming surgery, and the probability of the cancer having spread, seems very, very low. 

However, I feel frustrated, and angry at the insurance company.  If a doctor orders a procedure for a patient, it should happen. The number one concern should be patient’s health.  Suppose I am that one rare case.  Treatment by the time they figure this out, will cost way more than the $2,000 plus dollars for the scan. It seems ridiculous and almost criminal that patients can’t take a proactive role in their health because they just haven’t gotten as sick as the insurance company thinks they should be.

I am tired, I am scared, I am drained, I am exhausted.  I am trying to take care of myself and my boys, while keeping a positive attitude.  I do not have the energy to take on an insurance company on top of trying to fight cancer.  This is wrong, and it sucks.  Much like cancer itself.

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Cancer Family & Friends Health Me

My Cancer Has Spread

On Wednesday I had an ultrasound my surgeon had requested before the surgery to remove my thyroid for cancer.  I didn’t know ahead of time why he wanted this ultrasound, but found out it was to determine if the cancer in my thyroid had spread into my lymph nodes.

I was really upset leaving the ultrasound, and scared.  I didn’t want to have to think about another issue with my thyroid cancer.  I was told I would have the results in a few days.

Yesterday my surgeon, Dr. S., called me and told me the ultrasound showed the cancer had moved to my lymph nodes.  He said I have two lymph nodes that are measuring over 3 cm., and anytime they measure over 1.5 cm., it is a major cause of concern.

Dr. S. told me those nodes will have to be removed during my surgery and they will have to examine my other lymph nodes in surgery to determine if any other ones need to be removed as well.  He told me the surgery is complex and will be a minimum of 9 hours now.  Previously, the surgery time was about 2 hours-just to remove the thyroid.  Dr. S. said I will now be in the hospital for 4-5 days, and have a longer recovery time.

I was completely in shock as I was listening to Dr. S. tell me all of this.  My heart was racing and I was having trouble breathing. He recommended I make an appointment and he would fill me in on all the details and the process.  Dr. S. told me I still had the papillary cancer, and it was still in the very early stages.  He said he was glad I had gotten the ultrasound, because now he had the complete picture of what my health situation is, and he knows before hand, the direction the surgery needs to go in.

I hung up, and sat shocked and numb- staring at my wall. I stared to cry and utter a lot of four letter words under my breath.  Ryan and Cole were home, and I didn’t want to have them overhear me calling anyone to tell them. I was too upset anyway to talk.

Since then, I have let my family, friends, and Facebook friends know and the support has been overwhelming.  My sister and friends have told me this is bad news, but I am not going to die.  When it is all said and done, it is a complication, but I am going to be fine.

A day later, I am still in shock somewhat- just trying to absorb the situation.  I am going to make that appointment with Dr. S., to get the rest of the facts and ask questions.  I don’t believe I will need to have chemotherapy, but will more than likely have to undergo radioactive iodine therapy.

My family is already making plans to get me the help I need after the surgery, and I know I can count on my friends to help too.  I am very grateful for all the support and love I have.

So where do I go from here? I am not sure.  I am trying to keep a positive attitude and trying not to freak out.  I am trying to remember to take deep breaths and keep everything in perspective.

If anyone has been through this, the removal of lymph nodes, please let me know what your experience was.  It helps me to hear what others have gone through.

Please keep me in your thoughts and prayers.  I need all the positive energy that can come my way.  🙂

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Cancer Health Me

Thyroid Cancer Update

A few weeks ago, I found out I have thyroid cancer.  My doctor says I have papillary cancer, and recommended a total thyroidectomy (a procedure where the entire thyroid is removed.)

My surgery is set for June 12th, around noon- as it stands now.  Before the surgery I have to have a high resolution ultrasound which, as I understand it, will help my doctor determine exactly where the cancer is in the nodule.  I also have to have some blood work done, and a pre-surgery appointment a few days before to discuss the surgery with my surgeon. 

I have been looking into more information on a thyroid lobectomy with isthmusectomy which is a medical term for only having half of my thyroid removed.  It seems though this is only preferred when the nodule is under 1.5 cm. and mine is 1.7 cm.  Still, I have read that the thyroid can function with only 10% remaining, and the idea of not being on medication for the rest of my life, is appealing. 

On the other hand, the cancer has a higher chance of recurrences in my situation if any part of my thyroid remains.  Plus, I would always have to have it monitored which means more biopsies, which I am not fond of.  The other factor in this decision is the emotional aspect- will I always be wondering if cancer is growing again in my thyroid?  Will it always be there in the back of my mind?  What if I am clear after a biopsy, and then it comes back six months later, and it is worse than before?  I am thankful and consider myself lucky this was caught early.  It was basically four months from when my doctor first felt the lump at my annual exam, to my diagnosis.  What if I choose to only have half of my thyroid removed and I am not so lucky a second time?

So I have been debating these options.  I plan to do some more reading and research.  I want to make sure I understand what is happening, and any other options that are available as treatment.  I am not questioning the expertise of my surgeon/doctor- his own wife had the exact cancer I have two years ago, so I am perfectly confident in his abilities and diagnosis, but I want to know for myself that I have explored all options, and this really is the best treatment for me before I go “under the knife” so to speak.

My family and friends have been amazing.  I have been in touch with a lot of other people who have also been through this, and their stories have reassured me and given me confidence that everything will turn out okay for me.  My mom and my sister (my only two family members that don’t live in Colorado) are arranging their schedules so they can be here during and after the surgery.  Ryan and Cole’s father, grandparents, and extended family are going to be able to watch the boys extra times during and after the surgery.  In short, I am very fortunate to have so much support and help.  It is one thing I don’t have to worry about right now. 

I am so grateful for all the e-mails and good wishes I have received and wanted to post a quick update, since these are most of the questions I receive in the e-mails.  If anyone has chosen to have the partial thyroid removal, I would love to hear your experience if you are willing to share it.  You can leave a comment or e-mail me privately.  My e-mail is found on the Contact Page.

Thanks again to everyone for all the support and information.  Love you all.  🙂

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Cancer Health Me

I Have Thyroid Cancer

bamboo

I was by myself on Saturday morning- it was raining and it was my mom’s 60th birthday.  I decided to have a gadget free morning.  I didn’t turn my phone on and I was enjoying a quiet morning.  Around 11, I turned my phone on and saw I had a voice mail.  I checked it and my heart sunk as I heard my doctor tell me he had the results of my biopsy, and he would call me back on Monday.  Doctors don’t call you on Saturday unless they have bad news. 

I suspected the news was not good, as I called the answering service to see if they could have Dr. S. call me back.  I didn’t want to think about it for the next two days- I just wanted to know.  Dr. S. called me back about ten minutes later.  He told me he didn’t have my chart with him but he said,

“I have your results from the biopsy and it shows you have papillary thyroid cancer.” 

Cancer.  How can that be?  How can I have cancer?   

I had no idea what papillary thryroid cancer was- I was only processing “cancer.”  I heard Dr. S. tell me I need to have  a total thyroidectomy- which is the removal of my entire thyroid.  I heard him tell me he was sorry he had to give me this news.  He told me it is very treatable and we caught it early.  I heard him tell me I will have to have surgery, and it should get scheduled this week.  I heard him tell me I’ll be in the hospital 1-3 days, and the recovery time is about a week.  I heard him tell me I will have to be on medication for the rest of my life.  I heard him tell me I might have to have radioactive iodine therapy, depending on how big the nodule in my thyroid is.  I heard him tell me all of this, and I was trying not to cry.  

After I hung up, I just sat in the kitchen staring out at the rain.  Then I cursed, and then I cried.  Then I was scared.  This is what I had been trying to find out if I had or not, and now  I knew.  I didn’t have to wonder anymore if I had cancer- I have it and I have to have surgery to remove it.   And yet, it didn’t seem- still doesn’t seem quite real. 

I thought of Ryan and Cole.  My two babies.  The thought that kept popping in my mind was, ‘what am I going to do?’  I looked up papillary cancer on the Internet, and the first sentence I read was the survival rate statistics.  That was not what I needed to read.  I started crying all over again.  

How do you ruin your family and friends days by telling them you have cancer?    I decided to send an e-mail to a close friend, and figured that was a good way to start telling my family and friends.  I wouldn’t have to say it- I wouldn’t have to speak it.  But then I had to type out the phrase- I have cancer.  It didn’t matter if I had to say it or type it.  Seeing it made it real for me in that moment.  I called my sisters, but neither one of them were home.  I didn’t leave a message, and that was all I could do.  My body needed to shut down, so I stopped reading, started a fresh wave of crying, took my phone with me, and crawled into bed.  I lost track of how long I laid in bed crying.   I could only think of Ryan and Cole, and if I was going to be around to see them grow up. 

I stared at the wall and cried, and heard the rain pounding against the window.  I kept thinking ‘what am I going to do?’  I was exhausted.  My arms and legs felt like they had cinder blocks on them.  A few minutes later, I heard my phone and my friend had sent me an encouraging e-mail back.  It said I would never have to worry about the nodule developing cancer later.  That was something positive.  I closed my eyes and fell asleep.

About an hour later, my sister Vanessa called.  She was very encouraging and made a lot of good points.  She said she would be there for me.  She lives in Seattle, and told me it didn’t matter how soon the surgery was- she would be here for me and she would help me- help me recover and help me with the boys if needed.  After that call, my other sister, Mara called.   She told me a lot of the same things Vanessa did, and she found the website I provided the link to for papillary cancer.  She told me to get myself going and make myself come down to her house that night.  I told her I would- I didn’t want to be alone.  She said we could go out to dinner with my sister-in-law, and a close friend. 

I called the rest of my family and let my friends know.  As more and more people started talking to me and encouraging me, I felt better.  I finally got to Denver- to my sister’s house, and my friend, Christina was there waiting.  She gave me a big hug and told me I was going to be fine.  Kat, my sister-in-law gave me a hug next, and let me cry.  My brother, Jeff, was there, and hugged me, as did my brother-in-law, Kevin.  Everyone told me I was going to be fine.

Then Mara came in the room, and called me into her bedroom.  Kat and Christina were in there too.  My sister shut the door and they gave me a beautiful card, and lucky bamboo plant. (this is the picture at the begining of the post.)  They told me bamboo is strong and regenerates itself.  Christina told me about her mom’s journey with stage three lung cancer, and how she is healthy and fine today.  I know- I met her a few weeks ago.

As I processed all the encouraging comments everyone had given me all afternoon, being with my loved ones,  and looking at the bamboo plant,  it occurred to me I had found my answer to ‘what am I going to do?’ 

I am going to be strong.  I am going get through this. I am going to get this taken care of so I can be there for my boys.  I am going to get the cancer out, and then move on.  I am going to be healthy.

I had a nice night out with the girls.  At one point Christina took a picture of her and I, and posted it to Facebook.  The caption she put under the picture said, “Cancer Shmancer.”  My thoughts exactly.