Pam Mendenhall | caregiver of three family members with thyroid cancer | high needle biopsy

DESCRIPTION

One by one, Pam Mendenhall of Dubuque, Iowa, learned that her husband and two daughters were diagnosed with thyroid cancer.  All three survived, but she tells the @CancerInterviews podcasts being their caregiver was not easy.

The journey began in 2005 with her then-nine-year-old daughter, Alyssa, who felt a lump in her neck.  She went underwent an ultrasound, then a high needle biopsy, followed by painful biopsy passes, in which a needle is repeatedly into the neck, very tough for a nine-year-old. Doctors said the nodule that was examined was benign, but she was diagnosed with Hashimoto’s thyroiditis, in which one’s immune system attacks the thyroid. 

Not long after that, Alyssa’s younger sister, five-year-old Jessica, also felt a lump on her neck.  Jessica also underwent a high needle biopsy on a nodule and said that nodule was benign, classified as a benign adenoma nodule.  Nonetheless, Pam and her husband, Dan, decided to have Alyssa’s and Jessica’s thyroids removed.  A nurse pleaded with Pam to perform this procedure on Alyssa because Alyssa would need hormone replacement therapy for the rest of her life. 

Once Alyssa’s thyroid was removed, doctors told Pam the thyroid was cancerous, highly unusual for someone of Pam’s age.  The diagnosis was follicular thyroid cancer, even more unusual for a child.  Pam and Dan next to decide if Alyssa should undergo radioactive iodine therapy.  The surgeon could not get all the thyroid cancer cells, so the radiation, administered in liquid or pill form, kills off the rest.  With all this radiation in her, once home, the rest of her family had to stay away from her for three days.

In January 2006, Pam and Dan decided to have Jessica’s thyroid removed as well.  A post-procedure scan showed Jessica’s thyroid was not cancerous, but she was diagnosed with an atypical follicular adenoma.  Doctors said had the thyroid not been removed it probably would have become cancerous.

Dan and Pam Mendenhall did more research, and that he and their two daughters had what is called a ’26 pair deletion’ on their tenth chromosome.  They call it a PTEN mutation.  Oftentimes people who have that mutation have something called the Cowden Syndrome, which unfortunately for Pam’s family is a cancer syndrome, because it places those with the syndrome at risk for six additional cancers. 

This led to tests for Dan, and a doctor told Dan he had several nodules in his thyroid.  So, in August 2006, Dan had his thyroid removed. 

Going forward, Dan, Alyssa and Jessica need frequent bloodwork, endometrial biopsies and kidney ultrasounds.  Pam says it will always have to be this way.  With other cancers, when a patient becomes cancer-free five years after treatment, that is a cause for celebration, but thyroid cancer is slow-moving, one can never be sure the worst is over.

In addition to the emotional trauma, Pam needs to play traffic cop, making sure her husband and daughters go to all their appointments.

By way of advice, Pam Mendenhall is a staunch advocate of genetic testing.  In the case of her family, it provided them with knowledge that helped them to get in front of thyroid cancer and the possibility of other cancers as much as possible.

Additional Resources:

Thyroid Cancer Survivors’ Association (ThyCa) : https://www.thyca.org

TRANSCRIPT

Bruce Morton: Greetings, and welcome to the @CancerInterviews podcast.  I’m your host, Bruce Morton.  While on most of our episodes, we feature the stories of survivors sharing the details of their cancer journey, we have to keep in mind that in many instances, that journey is made easier by a caregiver.  On this segment, our guest is Pam Mendenhall of Dubuque, Iowa, who was and is, a caregiver extraordinaire by giving care to three members of her family.  I find her story inspirational, and I hope you will, too.  So now, let’s get to it, and Pam, welcome to Cancer Interviews.

Pam Mendenhall: Thanks, Bruce.  Thanks for having me and thanks for the opportunity to share my story.  I really appreciate it.

BM: And we look forward to hearing it.  Pam, one of the things we always do when we start out on our interviews is that we want to know a little bit more about you, so if you would, let us know about your background a little bit, where you are from, what you have done for your life’s work and what you like to do with your free time.

PM: I have lived in Dubuque almost my entire life, attended school here, Clark College, and earned a degree in psychology and sociology.  Then I decided that wasn’t enough to pay the bills, so I went on to get a master’s degree in social work at the University of Iowa, so I am a Hawkeye.  Since that time, I have been a school social worker for 26 years, which I really enjoy doing.  I go around to different schools and work with kids with special needs.

BM: You mentioned being from Dubuque.  D-U-B-U-Q-U-E.  Does that ever get mispronounced?

PM: All the time.  Yes, unless you are very old and have heard the Dubuque Ham commercials when you were younger. 

BM: Before we go any farther, we want to remind you that if you like what you hear on this episode, we invite you to subscribe to our podcast and our YouTube channel by clicking on the links below.  There you will find a bell icon.  If you click on that, you will be notified every time we post a new episode.  Now let’s continue, and Pam, if you would, describe the health of your family prior to the thyroid cancer diagnosis with your daughter, Alyssa.  Would you say overall your family was in pretty good health?

PM: Oh, we were all in very good health.  I made sure to feed my kids three square meals a day and lots of vegetables and fruits to stay healthy.  We did a lot of traveling, exercising to stay healthy.  Ironically, when I would take my daughters to the dentist, I would refuse to get them the x-rays because I didn’t want them to cause any ill effects on my children, so, yeah, pretty happy easygoing lifestyle.

BM: Your daughter, Alyssa, was diagnosed with thyroid cancer.  When did you get any inkling that something might not be right?

PM: She was nine years old, so that was in about February of 2005.  She was sitting down rubbing her neck, she called me in the room and said, “Mommy, what’s this?”  I felt her neck, went on Google and started scaring myself, then made a doctor appointment right away, so went to our pediatrician here in Dubuque and he said that was beyond his expertise, referred us to the University of Iowa in Iowa City, where the journey began.  They did what’s called a high needle biopsy on her largest nodule.  By this time, we had had ultrasounds done, and she had several nodules and so in Iowa City, they said they would biopsy the largest nodule because that one has the highest chance of being cancerous.  So I remember travelling down there and again she was only nine years old, in her room, and they made her put her little head back and without any anesthesia, they started doing a biopsy on her nodule and they did what is called ‘biopsy passes’.  That’s where you put the needle in very quickly, in and out, in and out, so they did this, three or four times. Then I thought they were done, but they weren’t done, then did that about two more times, so she’s crying, she’s upset.  I reminded her that soon we will go to Disney World, and it will be okay, so I calmed her down a little bit, but it was very difficult to see her go through that.  We did get the results back pretty quickly, and they said it was benign.  Of course, I was elated.  They diagnosed her with something called Hashimoto’s (thyroiditis), where your immune system starts attacking your thyroid, and I thought maybe that explains it.  I tried to stay on the reputable sites, like Mayo and MD Anderson.  I read that with Hashimoto’s, your bloodwork is abnormal, but Alyssa’s levels were not off, they were pretty normal.  That didn’t add up, so that was a bit of a red flag for me.  Meanwhile, the next month we did go to Disney World, that was in March of 2005, and that was when the next part of our journey began. We were sitting at Disney World, watching a live show of Beauty and The Beast, and my youngest daughter, Jessica, looked up to watch the lights and I noticed a lump in her neck, also.  That obviously stressed me out a lot, and I ended up not enjoying the trip as much as I would have liked to.  So, we ended up taking her in to the University of Iowa.  She only had one nodule.  We had a high needle biopsy done on her, but I insisted on anesthesia because I didn’t want to see her experience what my oldest daughter went through.  So, they did the procedure and they told us that her nodule was also benign, just a benign adenoma nodule.  Then I had a gut feeling, I had a feeling that something wasn’t quite right.  I have a five-year-old and a nine-year-old with thyroid nodules, which was extremely rare, so I got a referral to the University of Wisconsin in Madison for a second opinion.  There we saw an endocrinologist; she was basically our angel.  She looked at Alyssa’s neck and said her thyroid needed to be removed.  It was hard, solid lump that was found in her neck.  Then she looked at my younger daughter, Jessica’s neck and said that nodule was suspicious, too.  The doctor was so concerned at that appointment that I remember she called one of the best surgeons in Madison in to look at their necks.  Needless to say, after that appointment, I was kind of freaking out again, thinking the biopsy was negative, what’s going on, so my husband, Dan, and I decided to remove Alyssa’s thyroid out.  Even at her pre-surgical appointment in November 2005, the nurse even tried to talk me out of having Alyssa’s thyroid removed because she said it is very rare in children, she probably doesn’t have cancer, and asked if I was sure I wanted to do this.  She also said if Alyssa’s thyroid is removed, she will need hormone replacement therapy for the rest of her life.  Again, I paused and thought that I trust this doctor, so I have to get the thyroid removed.  On November 21, 2005, we had her thyroid removed, and two days later, the day before Thanksgiving, we got a call from the surgeon and he told us it was cancer.  He also said it was follicular thyroid cancer, which is even more unusual in children.  Usually that’s reserved for people over 60, so again, very odd for a ten-year-old.  Needless to say, that was the absolute worst Thanksgiving of my life.  I then had to make the choice as to whether to treat her with they call radioactive iodine therapy.  They have radiation in a liquid or pill form that is supposed to kill off those extra thyroid cells.  Usually there are remnants left in a neck after thyroid cancer surgery.  The surgeon can’t get all the thyroid cancer cells, so the radioactive iodine does the cleanup work.  This was a hard decision.  I didn’t want to expose her to radiation at age ten, but wanted to make sure the cancer was gone, so I had to make the best decision I could with the knowledge I had.  Little bit of pressure there.

BM: Pam, you’re not a doctor, but it sounds like you immediately sprung into caregiver mode, just with the research you did.  How stressful was it to make that 50-50 decision?

PM: It was a steep learning curve.  I just educated myself.  The nuclear medicine doctor said it is minimally invasive for follicular thyroid cancer.  We don’t necessarily have to give radiation, he said, but if you want to make sure the cancer is gone we knew she had kind of a large remnant in her neck, and the doctor didn’t know it was cancer at the time.  They went in thinking it was not cancer.  So, yeah, I did a lot of research, so in December 2005, we wanted to give her the radioactive iodine.  With my paranoia, we wanted to make sure the cancer was completely gone, but I felt better when they said they could give a very low dose.  We did that, we traveled to Madison again on December 16, 2005.  That’s about two hours away from Dubuque.  The way the treatment works is, you have to take a liquid or pill form of the radioactive iodine, then three days later, you have the scan.  I remember sitting in the room, and the nuclear medicine doctor came in with this thick cement block of liquid, radioactive iodine, and told us not to get too close to her.  I remember after she drank it, she started coughing, and coughed on her sweater.  The doctor said the sweater was now contaminated, and that it needed to be washed three or four times, or better yet, thrown out.  We talked about isolation for three days, precautions at home.  We had to move Jessica, her little sister, out of the house so she wouldn’t be exposed to the radiation.  We had to wash Alyssa’s dishes separately, her clothes separately, anything she touched in her room had to be removed for at least three months.  They told me no hugs, no kisses, but I couldn’t stay away from my ten-year-old for three days with no hugs and kisses, so I broke that rule, went in there frequently.  All I could do was think about how I made my daughter drink something that’s so toxic to others that everybody had to stay away for three days.  But we got through that.  Three days later we had to go up for the scan.  It was a snowy day, winter storm warnings, but we had to get up there for that scan.  So, we get up there and it turns out the machine was broken that she was supposed to have the scan on.  Ironically enough, they had to call somebody from Dubuque to go up to Madison to fix it.  Longest two hours of my life, they fixed it, we did the scan and luckily it didn’t show any cancer beyond her neck.  So, because Alyssa had cancer, we thought we needed to have Jessica’s thyroid removed as well.  She has a nodule.  Hers could be cancer, too.  So, in January 2006, a month after Alyssa’s radioactive iodine, we had Jessica’s thyroid removed and hers was not cancer, but they defined it as an atypical follicular adenoma, which is very suspicious.  It probably would have gone on to become cancer had not removed it.  Again, because our endocrinologist, our angel in Madison, knows that it is exceedingly rare for a ten-year-old and a six-year-old to have thyroid cancer, that’s when they referred us to a genetic clinic at UW-Madison.  So, they collected blood from the four of us, myself, my husband, my two daughters and also my husband’s parents, thinking one of our parents, they are probably the carriers of something causing these thyroid nodules.  Afterwards, they sent the bloodwork to the Cleveland Clinic, and in June 2006, they found my husband, his dad and both of my daughters had what’s called a ’26 pair deletion’ on their tenth chromosome.  They call it a ‘PTEN mutation.’  Oftentimes people who have this mutation have something called Cowden Syndrome, which unfortunately for my family is a cancer syndrome, because it places people who have this syndrome at risk for six additional cancers.  Those are breast, endometrial, thyroid, colorectal, kidney and skin cancer, specifically melanoma, so they are high risk for all of those cancers.  I think finding this out was a harder blow to take than finding out Alyssa had thyroid cancer because it meant my family is at risk for all of these other cancers, so that was very overwhelming to deal with because you feel so helpless.  You know, you cannot change their genetics, so dealing with that was difficult.  In that timespan, too, because I highly believe in second opinions, in July 2006, we traveled to Houston, Texas and went to the MD Anderson clinic to get a second opinion from a specialist.  He reassured us that we were on the right track, and we were glad to hear we were doing things the right way.  At this appointment, the doctor asked if he could feel my husband’s neck. At this time, we knew nothing about cancer implications for my husband or myself.  My husband said okay, the doctor felt my husband’s neck and the doctor said my husband has several nodules in his thyroid.  Because of that, we had my husband’s thyroid removed in August 2006.  So, within the course of nine months, everybody in our family had their thyroid removed with the exception of myself, and we like to joke, the dog.  You know, looking back on all this, I was kinda kicking myself because when looking at pictures of Alyssa, like her communion pictures when she was in the second or third grade, I saw her nodule in those pictures, and wondered how I could have missed that, so again, I am kicking myself for not finding that out earlier.  Anyway, we continued with the genetic workup because things change very fast in the genetic world, the technology.  In 2017, we went to the Cleveland Clinic and we had whole gnome sequencing done to see if there are any other chromosomal defects, any other mutations that they could find, which might account for their thyroids issues aside from the PTEN mutation.  As for the present, we are doing surveillance.  Both my girls and my husband need frequent bloodwork and ultrasounds.  You know, with thyroid cancer, it’s slow growing, which can be good and bad.  It’s great it is slow-growing because you can catch it in time, but it’s bad because it could come back ten years, 20 years, 30 years later, that wouldn’t be uncommon.  With other cancers, you hit that five-year mark and you’re celebrating; not so much with thyroid cancer because it creeps up on you.  So, surveillance is very important for both of my kids, and I do just as much for Jessica, even though she wasn’t diagnosed with cancer as Alyssa was.  They will also need because of their mutation, surveillance for breast cancer, MRIs, they’ll endometrial biopsies, kidney ultrasounds, urinalysis to check for blood urine, skin checks, colonoscopies, all of those things will have to happen at an earlier age for them because of their genetic mutation.  This is a very novel mutation that doctors have not seen in anyone else.

BM: Pam, let me ask you about your role in this.  Obviously, you did the research at an early stage, and you had for obvious reasons, a front row seat for what went on with your two daughters and husband, but meanwhile, you still have a job.  You still have a routine and it was a routine that was obviously underwent some severe alterations.  How did your day-to-day life change now that you are giving help to three people?

PM: I thought at first, I would have to dip into my family medical leave, but I managed not to have to do that.  I think maybe because they were spread out, and because with Alyssa I did so much research on the thyroid cancer, the thyroid disease issues, all three were dealing with the same thing, but yeah, luckily my job was flexible, so I could make some phone calls during the day to doctors, making sure the bloodwork gets done, making sure the followup scans get done, so it would not be uncommon for me to spend an hour over my lunch break, two or three days a week, making calls to doctors.  And insurance is a whole other story, that would merit a whole other program.

BM: I want to ask you about any external sources of support, and there is a thyroid cancer support group that is quite widespread and quite prevalent, ThyCa.  What role did ThyCa play in terms of your addressing the caregiving needs of your husband and two daughters?

PM: ThyCa was wonderful.  They were my family that provided me with support when we didn’t have a lot of support in Dubuque.  I can’t tell you how appreciative I am of ThyCa, the organization, everybody in it.  When I was at my lowest point, I had no idea where to go, what to do.  They really helped me out.  Those were one of the resources I tapped into when I was doing research.  They provided me with so much information, free information.  I was just overwhelmed with the outpouring of support by everyone.  I still refer to them as my ‘ThyCa family,’ because they are my family.  Alyssa and I continue to go to the ThyCa conferences when we can.  She started going with me when she was 14, which is pretty young; but they all adored her, took her under their wing.  Ten years later, we still go to the conferences.  ThyCa is exceptional people, and an exceptional agency.

BM: And if you want to contact them, their web address is easy to remember.  Simply, ThyCa.org.  Now, Pam, we want to get back to the whole notion of genetic testing.  It sounds as though you are a fierce advocate of genetic testing.

PM: I am a very strong advocate of genetic testing.  I believe that knowledge is power, and us going in and getting the genetic workup done, basically, it told us your family is at high risk for these other cancers, and you need to get screened.  I am hoping with this knowledge and the earlier screening for my family that a lot of these cancers can be prevented or at least caught early.

BM: Do you now feel that thanks to genetic testing, you are sort of out in front of this litany of cancers?

PM: I do because I think a lot of these types of cancers are preventable.  I know with breast cancer, with colon cancer, I know early detection is the key, and if you are being screened for it, having surveillance in these areas, you even skin cancer, all of these cancers, early detection saves lives.  I do believe that, yes.

BM: And you had earlier referenced that knowledge is power, and certainly with any phase of medicine, things are constantly evolving.  I think I already know the answer to this question, but I want to hear it in your words: How important is it to stay on top of that evolving knowledge where genetic testing is concerned?

PM: Obviously extremely important to stay on top of that.  When we started this journey in 2005, whole gnome sequencing was not available at the time.  It is now.  Also, what wasn’t available in 2005 is molecular testing, so that thyroid cancer could be tested molecularly to determine if there are other mutations that could have caused thyroid cancer.

BM: I want to get back to your family going through all these tests going forward so they can try to stay out in front of this, but physically, how close are they to 100 percent in terms of the activities, in terms of going about their lives?

PM: I would say both daughters are at about 100 percent.  Alyssa is a biomedical engineer in Minneapolis, so she is in the medical field.  She is working on pig livers for transplantation into humans, so she goes to work every day, exercises, lives a normal life, except that she has to take synthroid every day, has to have her bloodwork done, has to see an endocrinologist.  She is not yet to the point in which she has to have followup surveillance testing done because she’s only 24.  My youngest is living a full life.  She is in the physical therapy program at St. Ambrose University in Davenport, Iowa.  So, they are both very high-achieving, very successful young adults, so they are functioning well right now.

BM: You mentioned being stressed out at the very outset of this journey, which anybody would have been under those circumstances, but you sound like you have been pretty calm in your demeanor with this.  Am I missing something here, or am I underestimating just how difficult this has been for you as a caregiver?

PM: It’s been very emotionally difficult.  It has been a rollercoaster ride since 2005.  Every time before a doctor’s appointment, I still get sick to my stomach for fear of what might happen, what they might find.  I know that part of what has helped me cope, is ThyCa.  I am also a volunteer there and a moderator at their site to support the parents whose children have been diagnosed with thyroid cancer.  I know how it feels for them when getting that initial diagnosis, not knowing what to do, not knowing where to go.  I tell them I am not a medical doctor, I can’t provide medical advice, but I try to provide them with some support that they need, so that helps me, too.  But again, it has been a very emotional rollercoaster and feeling very helpless.  With the genetics there is not much you can do, you cannot change your genetics, at least not at this point.

BM: Any other source of strength for you going through this?

PM: Yeah, my husband of course was there, although I was the primary caregiver.  He was there to support me.  He was kind of a calming factor.  I tended to be really heightened, and he would bring me down.  So that would help me a lot.  My mom helped out to when my daughter needed to go someplace for a few days.  My sister also offered to help.  Good friends, people I work with would bring food over and things for us, and they would ask what they could do to help.  Basically, after Alyssa was diagnosed, I would say the first few weeks that I worked between Thanksgiving and Christmas, I was not functioning very well at work, so my colleagues chipped in, took over, said Pam, do what you need to do, and we’ll take over.  That was a big source of support.

BM: Did you ever find yourself having to regulate the amount of support, in other words, in some instances, is there such a thing as too much of a good thing?

PM: I did with one person.  Everybody has such good intentions, they really do, but as you know, some days you feel like talking about it and other days, it’s just too much, you just need a break.  There was a point in which I just needed a break for about a week or two, not to talk about cancer with anyone, and they respected that.

BM: Okay, Pam, we’re going to start wrapping up now.  We always start our interviews at the same point and try to end at the same place.  So, I am going to ask you, if you had a private audience with someone whose child had just diagnosed with thyroid cancer, and there was one thing you wanted to share with them, what would it be?

PM: I share that now being a moderator for ThyCa on its website, but probably the most important piece of advice that I could give would be to get a second opinion.  Getting a second opinion at least in our case, is what saved my daughter’s life, and possible my other daughter’s life.  It’s worth the time and the money, especially when you have a diagnosis as rare as what my daughter’s was, so again, I strongly recommend that people get a second opinion, especially if like me, you have that gut feeling that something just isn’t right, something just isn’t adding up.

BM: Wonderful.  Pam, thanks so much for sharing your story with us.  There was a lot of information in this, but there was a lot of non-informational, that is more emotional to deal with, and for any caregiver, that is most definitely a big part of the equation.  So, Pam, thanks again for being with us on Cancer Interviews.

PM: Thank you, Bruce.  I appreciate it.

BM: And we want to remind you that as you go along your cancer journey, you are not alone.  T-E-A-M, Together, Everyone Achieves More.  So, until next time, take care, and we’ll see you on down the road.

Support Group:

Thyroid Cancer Survivors Association

https://www.thyca.org

SHOW NOTES

TITLE: Pam Mendenhall, Thyroid Cancer Caregiver – Dubuque, Iowa, USA

Being a caregiver for a preteen with thyroid cancer is tough enough, but Pam Mendenhall tells the @CancerInterviews podcast she ended up learning that in addition to her young daughter battling cancer wasn’t enough, she found herself having to give cancer-related care to her husband and a second daughter.  Within months of each other, Pam’s daughter, Alyssa, then nine years old and daughter Jessica, then five, discovered lumps in their necks.  An endocrinologist recommended both get their thyroids removed.  Jessica was not diagnosed with cancer, but Alyssa was.  To complicate matters, doctors determined removal of Alyssa’s thyroid did not remove all the cancer cells from her neck, forcing Alyssa to undergo radioactive iodine therapy.

Because it was extremely unusual for children the ages of Alyssa and Jessica to have their thyroids removed, they and Pam’s husband, Dan, underwent genetic testing.  It showed that all three carry the PTEN Mutation, meaning each is at risk for six cancers other than thyroid cancer.  From this point forward, Pam supervises various forms of monitoring and the procedures that accompany the monitoring.  Alyssa has survived thyroid cancer.  She enjoys a successful career, as does Jessica.

Additional Resources:

Thyroid Cancer Survivors Association

https://www.thyca.org

Time Stamps:

03:51 Pam noticed her daughter, Alyssa, then nine years old, had a lump in her neck.

06:51 Shortly thereafter, she noticed daughter Jessica, then five years old, also had a lump in her neck.

08:00 An endocrinologist said both Alyssa and Jessica needed to get their thyroids removed.

09:27 After Alyssa had her thyroid removed, she was told she had follicular thyroid cancer.

10:00 Pam said removal of Alyssa’s thyroid did not remove all the cancer, and in order to remove remaining cells, Alyssa would have to undergo iodine radiation therapy.

15:05 Upon discovering a lump in the neck of Pam’s husband, Dan, it was determined Alyssa, Jessica, and Dan all carried the PTEN Mutation, meaning all of them were at risk for six additional cancers.

18:39 Even though Dan and Jessica were diagnosed with cancer, Pam describes the degree to which they and Alyssa need to be monitored on an ongoing basis.

KEYWORDS (tags):

high needle biopsy

biopsy passes

hashimoto’s thyroiditis

benign adenoma nodule

hormone replacement therapy

follicular thyroid cancer

radioactive iodine therapy

pten mutation

cowden syndrome

atypical follicular adenoma

endometrial biopsy

kidney ultrasound