Tag: papillary thyroid cancer

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Cancer Family & Friends Health

Cancer Recurrence Tests

I am being tested this week for any traces of thyroid cancer that may be remaining, or for a recurrence.  I’ve had to put this test off for 6 months, so I’m very glad I’m doing it now, but with any type of cancer test- it’s a little scary too. 

I wasn’t sure what to expect or really what the process was while I was scheduling it.  The nurse at my endocrinologist kept telling me it was a week long process. I am finding out as I go along.  I wanted to share the process for others who will be facing the same test.

On the first two days, Monday and today, I had an injection of the drug, Thyrogen at 8 in the morning.  Thyrogen is used to test the blood for a hormone called thyroglobulin (Tg), which can indicate cancer.  Before Thyrogen, to test for  Tg levels, a patient would have to stop taking any thyroid medication such as Synthroid for six weeks, and become hypothyroid.  I was hypothyroid for almost thirteen weeks after my surgery, and it was one of the most difficult times in my life.  Needless to say, I’m very happy I was able to have Thyrogen.

The shots themselves weren’t bad.  Just more inconvenient than anything.  The nurse I was scheduled with on Monday was 3o minutes late, and I had a tight schedule that morning. I started thinking it was a bad sign, and worries crept in.  I forced myself to think positive thoughts.  The injections were given to me below the hip, pretty much in my gluteal muscles.  I had Cole with me on Monday, and he thought it was very funny Mom got a shot there. 

The rest of the day on Monday, I felt great. I felt like I normally do.  With Daylight Savings having just started, it was light out when I got home from work with the boys, and I ran a fast one mile.  A few hours after the shot on Tuesday, I started feeling sick.  I was very nauseous, and I had a bad headache.  I felt extremely tired too.  The nausea came and went.  I fortunately was off of work for the day so I was able to rest and take it easier. 

On Wednesday I have to take a dose of radio active iodine in preparation for the full body scan on Thursday.  The dose is very small and there are no restrictions on being around other people or children after I take the dose.  The letter the nuclear medicine department sent me said the radiation dose I’ll be taking is less than what is in a standard x-ray.  I am optimistic I won’t have any side effects.  I have a 15 minute appointment with the doctor, take the pill at the nuclear medicine department, and then drive back to work. 

On Thursday in the afternoon, I have a full body scan.  This is where they will be able to see any “hot” spots, or thyroid cells in my body which can indicate cancer.  The entire appointment is about 45 minutes, but I don’t like the scans.  I have always felt claustrophobic in the machine, and I hate sitting there waiting for it.  So this is the day I’m dreading the most in the process.  My good friend, Amy, is pretty sure she will be able to come with me, and I’ll be very grateful for her presence. 

On Friday morning, I have to have blood drawn, so they can do blood work. The nurse reminded me today how important this step is. She said she has patients all the time that do the entire week, but then don’t have their blood drawn, and she says it is a complete waste.  They won’t have accurate results without the blood work. 

After all of this, I have to wait until next week for the results.  I know I will be thinking of all the “what if’s” during this time, but I am going to try really hard to think of all the positives- like the type of thyroid cancer I had, has about a 3% recurrence rate.  I still feel better physically than I ever have in my life, have never had to have a Synthroid medication adjustment, and the last test I had the Tg level was undetectable.  The odds are definitely in my favor that I am fine, and these tests will confirm that. 

Please think good thoughts for me during the next week, as I do the same for myself.  If anyone wants to add their experience with their thyroid recurrence tests, feel free to do so in the comments.  I’d be interested in hearing how it went for others.

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Cancer Cole Family & Friends Health Me Ryan

Good-Bye to Cancer

Two weeks ago, I had a follow up appointment with the surgeon who performed my thyroidectomy and neck dissection, Dr. S.  He said the incision site on the side of my neck was still swollen some, and is healing.  That side of my neck is pretty numb- I get a “pins and needles” sensation when I touch it, but it doesn’t bother me.  Dr. S. said the entire incision is healing perfectly, and just as it should.  He examined my neck and throat area and said everything felt just like it should- translation: no new enlarged lymph nodes or nodules.

I informed him I had not had my thyroglobulin level tested since I completed radioactive iodine (RAI) therapy in August.  Dr. S. ordered the blood work and I left with the perscription in my hand for the test.  I was very happy everything seemed to be on track, but I knew the results of thyroglobulin test would be the true indicator if I was cancer free.

The type of thyroid cancer I had, papillary, produces elevated levels of thyroglobulin.  Before my surgery, Dr. S. told me a person with no cancer thyroglobulin’s level would be zero.  Mine before surgery, was 38!  Dr. S., said that was very high, and he had never seen a person my age with that high of a thyroglobulin level.  Before my RAI treatment in August, the endocrinologist measured my thyroglobulin level, and they were amazed to see it was down to 4!  They said it was very rare- almost impossible to get the thyroglobulin level that low, with just surgery.  They said a reading around 13-20 is more common.  This confirmed Dr. S., did an outstanding job on my surgery. 

I had no reason to feel anything but optimistic, assuming the RAI would have killed off any remaining cancer cells. Still, I couldn’t help but worry a little bit.  All those thoughts crept into my mind…all the what-if’s?  It didn’t help that I had to wait a week for the results- for some reason the lab was really slow in getting the bloodwork back. 

But last Thursday, on my 37th birthday, Dr. S’s office called with the results.  My thyroglobulin level was undetectable and surpressed.  The levels were perfect, and I am officially cancer free! 

I was beyond thrilled and happy!  As it sunk in, I got very emotional.  It had been six months from my first diagnosis to this news, but it has seemed at times, the longest journey of my life, and like I would never reach this point, or if I did reach it, I would never be quite the same again.  I thought back to when Dr. S. called me on a Saturday in April to tell me he was sorry, but the biopsy showed I had thyroid cancer, and how the second I hung up with him I cried, and didn’t stop for hours. 

That seemed like a lifetime ago.  Everything I have experienced- the tests, the cancer diagnosis, the uncertainty, the fear, finding out the cancer had spread,  the surgery, the time I lost with my children, the incision, the numbness in my neck, the medical mistakes that were made, the diet, the severe hypothyroidism, the medication, the days I could barely function- all of those things, brought me full circle and I am healthy again. 

I couldn’t wait to share the happy news with my family and friends- all those people who have been there for me through all of this.  And most of all, I couldn’t wait to tell the boys.  Ryan smiled and hugged me when I told him- he understands all of it- probably even more than I care to admit.  Cole does too, but he asked if that meant the doctor didn’t have to cut my neck open again. 🙂

It has occurred to me sometime in the past few days, that this is the end.  My cancer journey is over.  There will still be routine check-up’s to monitor my levels, but thankfully papillary cancer has a very high cure rate, and reoccurrence is very rare.  

I have shared my experience with thyroid cancer in part, because it was very hard for me to find real-life information on it when I was researching it.  Most of the medical information describes it as no big deal, more or less.  While that is true from a medical standpoint, this experience has been anything but “no big deal.”  I have categorized every time I have written about my cancer, under the Cancer topic (35 posts in all), and I hope what I have experienced, will help others in their research. 

I am amazed and touched by the e-mails I receive daily from other thyroid cancer patients and survivors- in every stage.   I’m shocked that so many people tell me they have learned more about thyroid cancer from my blog than from their doctors. So many of the patients are afraid- just like I was.  I hope the cancer posts will continue to help and inform.  I will try to continue to answer as many of the personal e-mails that I can.  I am brainstorming some ways I can offer more assistance personally, and locally to thyroid cancer patients. 

This is where my experience ends.  It has been a journey that has been one of the hardest for me, but also one that has taught me so much about myself and others, and one that will never leave me.   But for now, it is time for me to say good-bye to my cancer.

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Cancer Health Me Mothering

Mini Break from Blogging

I am going to be taking a short “vacation” from blogging.  My cancer recovery is not going as fast as I had hoped, and right now I have to concentrate on resting and trying to heal.

I appreciate the e-mails so many thyroid cancer patients have sent me- those who have already been through it, and those who have just been newly diagnosed and have questions.  Feel free to send me an e-mail if you have any questions (my e-mail is on my Contact Me page),  and  I will respond to you as soon as  I can.

I have also archived all my cancer posts in the right hand side bar under “cancer” so you can read about my experience  and what I have learned so far, and hopefully you may find some answers to your questions in some of those posts. 

I am hoping my mini blogging break will be short lived, and I will be able to blog again in the very near future.  Right now though I need to concentrate on healing and getting my body ready for the radioactive iodine treatment it needs.

If you follow me on Twitter, I will try to post short updates there on how I am doing- that is much easier right now than writing a blog post, and of course if you are a Facebook friend I will see you around there.

As a final note for now, PLEASE have your health care provider check your thyroid at your annual exam.  If anything feels “off” get in for an ultrasound as soon as you can.  That saved me from having to have my neck totally dissected to remove the lymph nodes that the cancer had spread to.  My surgeon credited my nurse practitioner who caught it early and insisted I have an ultrasound.  In my opinion, I don’t think there is enough information out there informing women of thyroid cancer.

Thanks again for all the support you all have given me during this process.  I will be back stronger and healthier, and will share the rest of my thyroid cancer experience.  Cancer can happen to anyone- please take care of yourselves and follow up with anything you or your health care provider thinks is abnormal.

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Cancer Family & Friends Health Me Mothering Parenting

Thyroid Cancer- What is Next

I have been trying to follow my surgeon’s orders and take it easy and rest as much as possible since my thyroid surgery and neck dissection on June 12th.

I have been at my dad and step-mom, Jean’s, house recovering during this time while Ryan and Cole have been spending some scheduled vacation time with their dad.

My surgeon, Dr. S, had been right- the pain in my shoulder has been brutal.  I slept on it funny the other night and I couldn’t even raise my arm enough to comb my hair yesterday. 

The thyroid controls metabolism and my surgeon warned me that I could gain a lot of weight during this time, but the opposite seems to be happening. I have no appetite at all. Nothing sounds good, and some foods are making me sick to my stomach.  My appetite is gone- I have been drinking Ensure (another Dr. suggestion) and trying to eat. 

The pain medication makes me feel nauseated if I don’t eat, so I have been trying to eat as much as I can.   Some of my friends have pointed out that Ensure really isn’t much more than sugar and have been giving me some healthier suggestions on other sources of food and protein I can eat.  I am planning on trying these and will keep you updated on how that goes. 

I had an awful day on Tuesday.  I almost fainted while I was out walking.  I got hot and sweaty and felt like I was going to be sick.  I stopped into a store near my dad’s house and the sales lady helped me sit down, and got me some water.  I fortunately was only about half a block away from home, and made it back and laid down the rest of the afternoon.

Some days the pain is fine- I can go six or seven hours between pain medication, but the last few days, I think I have overdone it and now have been watching the clock for the every four hours until it is time for the medication again.

I have been doing the exercises the rehab. physical therapists have given me to do, and those help. I have been trying to help out around the house too, by doing small chores that use my shoulder, like cleaning mirrors and sweeping.

I can’t even imagine if I had to have the neck dissection on the right side of my neck like my Dr. originally thought.  It would be so much worse and I am grateful I am healing overall.  It is not as fast as I would like it to be though, but I am getting there. 

I have had so many kind e-mails and well wishes, and those help too.  I have had people ask me what is next so here is what I know at this point.

Ryan and Cole are going to come back to the house with me on July 5th, and my mom is coming in from Minnesota to stay with us for a few days to help me.  My wonderful friends have been mowing my lawn, doing some light housekeeping, and are going to cook some meals for us. 

I am planning on taking the time my mom is out here to get back into a routine with the boys and take advantage of her help and the help of my friends to get our lives back to “normal” as much as possible.

I want to do some fun things with the boys this summer- take them swimming, take them to the zoo, take them to the park, and take them to play-dates.  This sounds exhausting even as I write this but, I am determined, and I will take it one day at a time.

I have a follow up with my surgeon on July 9th, for him to check the scar and the overall healing from the surgery.  I could not be more thrilled on how how the scar is healing.  It is still looks awful to me but this is what it looked like last week:

scar-1_edited

I developed a rash to the antibiotic on the last day I had to take it so that is why my neck is red and shows the rash, but the scar had been that red.

On Monday, this is is what the scar looked liked:

scar-2_edited

The rash is fading and so is so much of the red from the scar.  I have been putting Neosporion on the incision every day, and I just received a product yesterday that I am going to blog more about- it is actually to heal C-section and other surgery scars, but I want to take pictures and document the scar healing before I blog more about it.

I meet with my endocrinologist on July 21st.  At that point they will tell me the diet I need to be on to get my body ready for the one dose of radioactive iodine I will have to take, in order to kill any remaining cancer cells in my lymph nodes.

For now, I am not on any special diet except for watching my iodine intake, no kelp, kale, or flax seed.  As I understand it for a few weeks, I will have to take in a lot of iodine, and then none at all for a few weeks in order to “starve” these cancer cells of iodine.  They warn me my hormones will be out of whack and I could become depressed (fair warning to everyone).

The thyroid is the only organ that can absorb iodine, so when I finally take the radioactive iodine my cells and lymph nodes will absorb up the iodine like crazy.  But since it will be poison, it is a very effective treatment in killing off any remaining thyroid cancer cells in my body.

I will have to be quarantined for about 48 hours, and not around anyone. I will have to take the radioactive iodine in the form of a pill. Depending on my blood work, the endocrinologist will determine how strong the treatment has to be.

Thankfully, since my pathology report from my surgery did show I have stage I papillary thyroid cancer, I can be quarantined at home, and not in the hospital.  Obviously my boys will go to their dad’s house during this time.

After the radioactive iodine, they will start me on the thyroid replacement hormone that I will have to take for the rest of my life.   I will also have to have ultrasounds and blood work every six months to watch for re-occurrences.  I am expecting to find out more details after I meet with the endocrinologist, but my chances for survival are excellent and since my surgeon was able to remove so many of my lymph nodes, he feels the chances of re-occurrences are very small.

I am still taking it day by day, but things are getting better for the most part every day as well.  I am not done with the process yet, and won’t ever really will be, but I know there is no other cancer in my body and the radioactive iodine will ensure no more cancer in my lymph nodes.

I know I have been saying this a lot, but I can’t just thank everyone enough for all the support. Thank you isn’t enough- but I hope the gratitude in my heart I have for all my family, friends, and well-wishers shines through. 

I’ll continue to keep you all posted, and in the meantime I hope everyone is having a fun, safe, and healthy summer with your families. 

Love, Heather

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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.