Elise Fourie survived follicular thyroid cancer | radioactive iodine | euthyrox.| scintigraph

DESCRIPTION

This is the @CancerInterviews podcast.  On this episode, Elise Fourie of Pretoria, South Africa tells us how she found herself with mouth ulcers.  That led to a visit to a doctor who said tests revealed Elise had two nodules on her thyroid, and a subsequent diagnosis of follicular thyroid cancer.

For Elise Fourie, all seemed well with her health until October 2002 when she had  mouth ulcers.  She said they were like sores, there were quite a few of them, they were painful, and over-the-counter remedies were of no help.

First came a visit to her doctor after which she was sent to the emergency room.  That’s where tests revealed two nodules on her thyroid and a referral to a surgeon.  He immediately wanted a biopsy of her thyroid.  Although the biopsy was inconclusive, the surgeon wanted to remove the thyroid right away and afterwards determine if the tissue was cancerous.  Elise was well-versed as to the significant, multi-faceted role one’s thyroid plays, how important memory is for a psychologist, and how the lack of a thyroid could result in lack of memory.  She pleaded with the surgeon to remove the nodules but to leave the thyroid intact, but the surgeon said that couldn’t be done.  Elise then said the surgeon informed her of her diagnosis in the most “amazing way.”  He said, “If God tells you that you have to have cancer, but you can choose which, you choose this type.”  For Elise, it was follicular thyroid cancer, it was a good prognosis, but it was still cancer.  She could not figure out its source as nobody in her family had a history of cancer.  The procedure went up the esophagus and the left lobe was removed.

After the surgery, she underwent two rounds of radioactive iodine.  Elise said one diagnosed with follicular thyroid cancer needs to receive radioactive iodine until the cancer is killed.  She said the norm is for one to go through two rounds, and thankfully that was her experience.  Elise was also glad she did not have to endure chemotherapy treatment.

While Elise Fourie preferred radioactive iodine to chemotherapy, the radioactive iodine resulted in swollen glands that left her “looking like a chipmunk.”  While the glands were swollen, it dictated a great deal as to what she could and couldn’t eat.

Even after she stopped the visits, Elise had to come to grips with the fact that she no longer had a thyroid.  While the thyroid affects memory, it also affects energy.   Elise eventually shifted to euthyrox, a medication that could be administered in smaller dosages.  Nonetheless, periodically, Elise must go in to get checked to make sure her dosage is correct.  If it isn’t the dosage must be adjusted.  This is a source of concern to her as each time she goes in for a checkup there is this uncertainty.  She is also concerned about the availability of her thyroid medication, because without it, she would slowly die.

Elise had to go in for two treatments.  After the first one, she had to be checked out by a scintigraph, a scan which pinpoints all one’s thyroid cells and shows a light in the location of each cells.  After the first treatment, she lit up like a Christmas tree and thought she looked quite pretty that way; after the second treatment, there were no lights at all.  Elise wasn’t as pretty, but much happier.

Emboldened somewhat by her personal cancer journey, Elise Fourie now works as a volunteer with the Cancer Association of South Africa, or CANSA.  She is there to support cancer patients and isn’t afraid to ask for sponsors or donations.  Elise also finds as a psychologist she has an increasing number of patients who are cancer survivors.

Additional Resources:

Cancer Association of South Africa: https://cansa.org.za

TRANSCRIPT

Bruce Morton: Our guest on the @CancerInterviews podcast survived thyroid cancer, expends plenty of time and energy giving back, trying to help others, an effort fortified by her professional expertise.  She is Elise Fourie of Pretoria, South Africa, and this is her story.  So, here she is, and Elise, welcome to Cancer Interviews.

Elise Fourie: Thank you, Bruce.  Nice to be here.

BM: And we look forward to hearing your story, Elise.  For us, it is standard procedure to learn more our guests and their lives exclusive of cancer.  So, if you would, Elise, tell us a bit about where you are from, what you do for work and what you do for fun.

EF: My husband and I are both psychologists, so we both have a combined practice in Pretoria.  We live in a lovely suburb which is so beautiful, a lot of bird life, and we have two daughters, ages 33 and 31 and two grandchildren which we absolutely adore.  I am a bit of a workaholic, so I work a lot.  When I am not doing therapy or not doing volunteer work for the Cancer Association of South Africa, I do a lot of work in psycholegal assistance in family law when parents are in conflict about who the child should be with.  I spend a big part of my life writing reports, but when enough is enough and I need to take a break, I like to read, and I like embroidering.

BM: Now, let’s talk about your cancer journey.  For all of us who have survived, there was a time when we were physically normal, until we weren’t.  When did you first notice something wrong, and how did that manifest itself?

EF: It was actually quite strange.  I had mouth ulcers.  It was a Sunday morning that I decided I needed to see a doctor right away.  He tried to treat me, but they weren’t going away.  I had guests arriving that afternoon for a tea for my daughter’s birthday.  I told my husband I was going to go to the emergency room.  When I got there, the doctor looked at my thyroid and immediately noticed two small nodules on my thyroid.  That’s when he referred me to a surgeon.  This was at the end of October 2002.  Then when I saw the surgeon, he then referred me for a biopsy, which was inconclusive, but he said we needed to operate immediately, then we’ll test the tissue.  As a psychologist, I know how important a thyroid is.  It is very important for our functioning and especially in my job, for memory.  That makes it very, very tricky.  I kept on asking please to just remove the nodules and not my thyroid.  He was just so kind.  So, I went in for the operation, and the following morning when he came to examine me again, he stood next to me, he told me I had cancer in the most amazing way.  He said to me, “If God comes to you and tells you that you have to have cancer, but you can choose which type, you choose this one.”  So, I was diagnosed with follicular thyroid cancer, a very good prognosis, but you know, cancer is cancer.  At that point, the bottom falls out of your world.  There is this breathless moment.  My first thought was there was no cancer in my family.  Where did this come from?  I have always thought I would never get cancer because I have this very positive mind, but now here I am with cancer.  It was explained to me that the cancer was up the esophagus, and the left lobe was removed surgically.  Then I was told I would have to further undergo active treatment, but yes, that was a very difficult time.  Then you think it won’t be so bad, but there are other things that could be bad. 

BM: We’re confident you’ll be able to learn some tips and tools to help you through your cancer journey, but first, we would like to invite you to give us a ‘like,’ leave a comment or review below and share this story with your friends.  Kindly click on the Subscribe button below and click on the Bell icon, so you will be notified the next time we post an interview.  And if you or a loved one are facing a cancer diagnosis, please click on the link in the description and Show Notes below to check out our free guide, “The Top Ten Things I Wish I Knew When I First Got Cancer.”

Now, Elise, I want to backtrack a little bit.  Ou mentioned what got this all started was your noticing mouth ulcers.  For anyone unfamiliar with the term, what are mouth ulcers?

EF:  They were sores in my mouth.  There were quite a lot of them.  I didn’t know exactly what they looked like.  I just knew there were a lot of them, and they were quite painful.  I didn’t respond to the usual over-the-counter medications, that one could get.  I have had mouth ulcers in the past, but these I was really unsuccessful with. 

BM: Now, let’s get to your cancer journey.  You have learned that you have thyroid cancer, so next up would be treatment.  What did treatment consist of?

EF: Thyroid cancer is treated a lot different from other cancers.  First of all, the treatment involves the cancer being destroyed with radioactive iodine.  We all know how cancer cells travel through the body, so the treatment has to continue under there are no more cancer cells.  So, the majority of people have two treatments at the most.  I only had two.  It wasn’t as difficult as chemo would be, but it left me looking like a chipmunk because of swollen glands.  It was quite sore but was over and done with, quite quickly. 

BM: How painful was that?

EF: The glands were painful because they felt like mumps.  My second oncologist suggested I chew bubble gum because that helps the saliva to move through your mouth, and helps it to clear up quite quickly, but chewing was quite painful.  With the second treatment, if I ate food that was quite dry, I struggled to swallow it down.  So, there are all sorts of little side effects.  The only thing that is quite disturbing is that during the treatment, I was radioactive.  With the second treatment, the nurses would come into the room with a Geiger counter, and it would make it a whirring sound and I would realize I was the reason for the sound.  As time goes by, the sound decreases until there is no more, and then one can be discharged. 

BM: But at this point, you were without a thyroid.  What was that like?

EF: It was very difficult because after the first treatment, I couldn’t start the thyroid medication yet.  The thyroid plays a huge role with energy, so that was exhausting.  Shortly after the first treatment, I could start thyroid medication.  Then I started the second treatment, and I had to stop the medication for four weeks before the second treatment because they want the thyroid cells to absorb the iodine properly.  I am a psychologist, and work between eight and ten hours a day, and for the last patient of a day I would feel not sleepy, but exhausted.  I couldn’t breathe, and it felt like my heart was just laboring.  I remember in that time I taught a workshop, a four-day workshop and I wondered how I could present complex ideas, so, it’s tiring.  Then afterwards you go onto a thyroid treatment again and you have to adapt all over again.  The toughest part was intense tiredness and troubles with my heart.

BM: What type of medication did you take?

EF: It is a real challenge to find the right dosage.  It is common for a thyroid cancer patient’s medication to be overdosed.  That prevents the thyroid cells from regenerating.  So, to keep me cancer free, I was always overdosed a little bit.  In the end, I went to a medication called euthyrox, because you could get it into smaller dosages, but it was really a struggle to find the right balance between the right dosage and an overdosage that gave me heart palpitations.  It took quite a while to find the right levels, and what has been happening lately is that the dosage has to go up every 12 to 18 months.  My levels are checked every six months to see if they are the right level, so it makes me a bit worried and concerned about what’s going on.

BM: And to what degree are you dependent on this medication?  I assume you have to have it.

EF: One of my biggest fears is what is going to happen to me if I cannot get my thyroid medication because I am totally dependent on my medication, because without it I will die.  Slowly but surely, I will die.  The thyroid gland is control of so many processes in your body.  After a while, your heart will stop beating or you will have no more energy, so that is a very big fear, and it is a constant fear.  You know, in my country from time to time there are shortages of medications because a lot of things are mismanaged, so that is a big fear.  It is not an easy thing to go through.

BM: Now I want to turn the story of your journey into a positive direction.  When did you feel like you were starting to get better and what was that like?

EF: After the second treatment, I went for a scintigraph, that’s a scan with a small dosage of radioactive iodine and what it does is, it lights up all the thyroid cells.  It was upsetting but also quite interesting because as I went through the scanner, the monitor was right next to my side and I looked at my body, there were these little pinpoints of light running right through my body.  Those were thyroid cells. I actually thought my body very pretty being all lit up like that.  That was after the first treatment, but after the second treatment I went through the same scan and there were no pinpoints, and I thought, “Now I can breathe.”  The interesting thing is, up until then, I didn’t actually process that I was diagnosed with cancer, but then I thought this could have been worse had I waited much longer to be seen.  With all gland-related cancers, the symptoms develop so late that by the time it is identified, it is so far advanced, that was such a blessing that the doctor chose to check my thyroid when he did.  Now I am at a point in which I only have to be checked once every two years.  I want to think that I am okay, but I have no guarantee that I won’t get another kind of cancer.  Getting back to your question, after the second treatment, it took a while to sink that I am actually okay, but I am reminded every single day of my life that I have thyroid cancer because living without a thyroid is really challenging. 

BM: If prior to your diagnosis, you could rate your health as 100 percent, where would you say you are now?  Or what can you not do now that you could do, pre-diagnosis?

EF: Well, I have lost some of my hair, so my crown is a little bit thin.  When I resumed exercising, I had to start really slow, because I am a bit of a coach potato.  With the medication I am on, it does put a bit of pressure on my heart, so I have to be very, very careful, and I still get tired very, very easily.  I also went into menopause very early because of not having a thyroid, so things sort of changed.  If you would have asked this question two years after my treatment, I would have said I am doing well; now my temperature control is totally out of whack.  I get cold very easily and get hot very easily.  I don’t get the menopause hot flashes, but when I get hot, I get hot.  There are these little reminders.  When I get an overdose of the medication, I get these heart palpitations two or three times a day.  Sometimes they do catch me unawares, I just try to relax, knowing it’s the medication; but I think my quality of life is pretty good, nothing to complain about, so let’s say 80 percent.

BM: Support is very important, and you have received support during your journey from a local and national organization, the Cancer Association of South Africa.  Could you tell us what it has done for you and what it can do for others?

EF: It was actually quite an interesting thing.  Until I became a volunteer for the Cancer Association, I didn’t talk about the fact that I had had cancer because you listen to other survivors and their very difficult journey.  Then I look at mine and I call it a “Mickey Mouse cancer.”  You almost have that survivor guilt because I didn’t have chemo, I didn’t have all these things, I didn’t have all the side effects.  My hair thinned, but I didn’t lose it.  So, up until then, I didn’t tell anybody.  Then in 2012 I was asked if I would like to assist with a national fundraising campaign.  It’s called Relay For Life, it’s a global movement.  The odd thing is that after that I am most willing to talk about my journey now.  I still tell people I was diagnosed with a Mickey Mouse cancer, and they say, “Yes, but still heard the words, ‘You’ve got cancer,’ and you live without a thyroid every single day of your life.”  So, I have been a volunteer with the Cancer Association since 2012, and I find what I do extremely gratifying.  I love being a volunteer.  I may come across as an introvert, but this introvert has learned how to ask for donations and sponsors.  With the association, a huge portion of the donations go toward services.  If I look at the services that CANSA makes available to the community, the list is so long.  First of all is the physical support.  There are nurses who go and see patients who are cannot afford to see an oncologist.  They help with pain control and help the patient get the right kind of stoma bag.  The services are so many.  There are care homes for those who live too far from a major hospital.  There are two children’s homes where the children and the parents can stay while the children receive therapy, and a lot of the money raised by the sustainability team goes towards what the children need.  They can determine whether one has breast cancer.  They don’t have scanners, but they are very good at a physical examination.  They can do scans of moles to see if one needs to see a dermatologist.  They also pap smears, either for free or at a reduced price.  There is also telecounseling in seven of our nation’s eleven languages.  That’s why in so many ways I find my involvement with CANSA so gratifying because I look at what they do.  If you look at their financial statements, you will see that such a high percentage of what they raise goes to research and services, so little to admin.  I am proud to be with CANSA because I can see they are not wasting the public’s money.

BM: You are a psychologist.  How does that affect the volunteer work you do?

EF: Once I was able to start telling people that I had cancer, I started seeing a lot more patients diagnosed with cancer.  I have always done a lot of reading, but now with my involvement with CANSA, I find myself in a position in which I have to answer a lot of questions.  So, I try to keep up to date with lots of different types of cancers.  That has made it a lot easier for me.  Now that I have stopped with the survivor guilt, I think it has prepared me very well because the thing we all have in common is we have all heard the words, “You have cancer.”  What you feel is something shared by everybody all over the world diagnosed with cancer, so I can help them.  Because I am a psychologist, when children are diagnosed with cancer, I work with moms and dads, and that experience helps.  Same with children whose parents have been diagnosed.  I have also done a lot of palliative counseling.  I stay with the patient until they pass away.  To me, that is precious work.  The patient might not want to talk to their families, but they know they can say anything to me.  It means I need to brush up on all the religions and the denominations of those religions.  My work as a psychologist has prepared me very well to do this volunteer work. 

BM: Elise, thank you very much for your story, and again, we are talking about the Cancer Association of South Africa, which also goes by the acronym, CANSA.  Elise Fourie of Pretoria, South Africa, thanks so much for sharing your story and for sharing what you do to help others, inspired in part by your cancer journey and inspired by your expertise as psychologist.  So, Elise, thanks very much for being with us on Cancer Interviews.

EF: Thanks for bringing this up because the more we talk about it, the better it is for all of us, so thank you for inviting me.

BM: And we want to remind you as we conclude that if you or a loved one are on a cancer journey, you are not alone.  The are people like Elise and organizations like the Cancer Association of South Africa that are there to provide support and ease that journey.  So, until next time, we will see you on down the road.

Additional Resources:

Cancer Association of South Africa: www.cansa.org.za

SHOW NOTES

TITLE:  Elise Fourie, Follicular Thyroid Cancer Survivor – Pretoria, South Africa

When Elise Fourie went to get checked out for mouth ulcers, she soon found herself diagnosed with follicular thyroid cancer.  Two treatment rounds of radioactive iodine led to survivorship, but she faces occasional challenges that come without having a thyroid.  That doesn’t stop her from being a highly active volunteer with the Cancer Association of South Africa.

Additional Resources:

The Cancer Association of South Africa: www.cansa.org.za

Time Stamps:

01:54 Elise ran into trouble when she experienced mouth ulcers.

02:45 After two nodules were detected in her thyroid, she underwent a biopsy.

03:32 Recalls her diagnosis coming in an unusual way.

06:50 Elise describes her radioactive iodine treatment.

08:40 Says during treatment, she was radioactive, setting off a Geiger counter.

11:30 Warns that thyroid medication is often intentionally overdosed.

13:53 Elise says to this day, she is dependent on her thyroid medication.

15:26 Recalls when her treatment took a turn for the better.

KEYWORDS (tags):

cancer

mouth ulcers

cancer interviews

thyroid cancer

bruce morton

radioactive iodine

cancerinterviews.com

follicular thyroid cancer

euthyrox

elise fourie

scintigraph