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Life Post Thyroid Cancer, Quality Of Life And A Happy Neck

Post Published: 28 June 2010
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Category: Guest Bloggers, thyroid cancer awareness, Thyroid Cancer Research and Papers, Young Adults with Thyroid Cancer
This post currently has 12 responses. Leave a comment

My counselor helped me see how much beauty and good came from such an uproar in my life. I want to be able to give that to people too. I’d also like to dedicate it to her, too, Jacque Blue.The mental health side of disease is so important that it’s just as important as the physical side of disease.” — Alexa Landsman

(Written by Alexa Landsman)

A diagnosis of cancer is never what someone wants to hear, nor does that person want to hear that they have the “good cancer.” Thyroid cancer is known to be highly treatable if caught early, but if you asked a thyroid cancer survivor they probably wouldn’t tell you it was easy—and I can say that from experience.  This particular cancer attacks your thyroid, a major endocrine glad that controls bodily functions such as heart rate, blood pressure, body temperature and weight (MayoClinic, 2009).  When this little gland is removed, the person must take hormone replacement (HR) for life to control what the thyroid once did.  In addition to taking HR, the patient must also do a radiation treatment to remove excess ablation called radioactive iodine (RAI).  After treatment, the patient will then follow up closely with their endocrinologist for the first 5-10 years, especially because that is the biggest predictor in recurrence.  Aforementioned, the prognosis for thyroid cancer is very good, however, what is life like for the patient post treatment? If the cancer is cured, I am interested to relay how their quality of life is and how different cultures relate to one another in their patient’s population quality of life.

Quality of Life (QoL) is defined as an individual’s perceptions of his or her position in life, in the context of culture and value systems in which he or she lives and in relation to his or her goals, expectations, standards or concerns (Crenenna, 2003).  A lot of life’s circumstances can play a role in QoL, but the main interest is to see how the diagnosis, treatment and long-term care effect a thyroid cancer survivor.  After a survivor is deemed “cured” they are then put on thyroid hormone for the remainder of their life.  This is where some patients run in to trouble, a lot complain of not feeling the way they did prior to surgery.  Chronic lethargy can sometimes be involved, as well as weigh gain, if the hormone dose is not titrated to your bodies needs.  Just a diagnosis of cancer is effectual on the mind and physical realm of the body, another term Health Related Quality of Life needs to be included in our explanation. To get more specific, HRQoL are the perceptions of both negative and positive aspects of at least four dimensions of physical, emotional, social and cognitive function (Crevenna, 2003).  When a patient comes off their medication they are hypothyroid, meaning that their absent thyroid is not producing any thyroid hormone necessary for the body.  A patient is taken off the hormone replacement (HR) for testing to see if the cancer has returned, and may feel the positive symptoms of being hypothyroid.  This has been known to lower a patients’ HRQoL which may cause fatigue, decreased appetite, constipation, decreased motor skill efficiency, and fluid retention (Crevenna, 2003).  As we progress, research will tell us how we can better patient’s lives giving them the tools they need to better their quality of life.

How does the quality of life in cured thyroid patient’s change after the coming off of thyroid supplement for diagnotstic testing? In Crevenna’s in Germany, a study tracks 150 disease-free patients from Germany with a history of thyroid cancer ages 25-83.  The majority of the patient’s were female making up 111 of the population.  All were taking hormone replacement as well as had normal levels of T3 and T4 within the range of someone who was euthyroid.  As a note, T3 and T4 are hormones made by the thyroid which control important body functions.  It is important to include that all patients had total thyroidectomies and radioactive iodine ablation.  To assess the HRQOL, the researchers used the German version of the SF-36.  Basically, the SF-36 is a questionnaire that consists of 36 questions related to eight scales that overview health topics (Crevenna, 2003).  There are also three general categories which these questions fall in to: functional status, well-being and overall health.  The questions ask what physical ailments the patients may have acquired post surgery and even just basic questions about being able to walk.  For well-being, mental health is measured: any anxiety or depression the patient may have picked up will be addressed here. Overall health questions might cover the perceptions patients feel about themselves.  The results were assessed and it seems that general health and bodily pain were superior in comparison to role-emotional and vitality which were lower.  There was also a subgroup of patients who were assessed 1 year after their diagnosis of thyroid cancer and they scored lower on mental health, role-emotional, role-physical, social functioning and vitality.  This should be as no shock as their duration of cure had only been a year, and coming to terms with their disease is a new concept.  Overall, impairment was greatest at withdrawal of hormone.  I will get into recombinant TH later, but this can help deter the symptoms of hypothyroidism when a patient comes off their hormone.

A study in the Netherlands conducted by Hoftijzer also used a multidimensional system on how to evaluate thyroid cancer patients post treatment.  The population consisted of 153 thyroid cancer survivors with an age range of 18-70—their pool dipping lower than Crevenna’s.  An aspect of this study which differed was the use of two comparison groups (control 1 and control 2).  Control 1 consisted of 113 people the thyroid patients selected themselves and control 2 was a larger pool of 336 and were matched for age and gender from other QoL Lieden studies (Hoftijzer, 2008).  The groups were tested using a series of quality of life questionnaires such as the SF-36, Multidimensional Fatigue Index, Hospital Anxiety and Depression scale and the Somatoform Disorders Questionnaire.  This study incorporated other testing (besides the SF-36) which made it more efficient that just using one unit of testing alone.  For instance, the Multidimensional Fatigue Index is similar to the SF-36, but shorter and only covers 5 health areas.  The Hospital Anxiety and Depression Scale exclusively looked at the mental health side of the patient’s disease.  Finally, the Somatoform Disorders Questionnaire was given so patients could document what physical ailments they might be facing during that time.  After the testing was administered, researchers found that significantly reduced QoL was found in 11 of 16 subscales (Hoftijzer, 2008).  How long a patient was deemed “cured” was also a predictor on their QoL.  Hoftijzer also notes that after a long duration of being cured (12-20 years) the 95% confidence intervals of the 6 of 16 subscales included a normal score.  It is normal to be impaired after cancer, but time and clean diagnostic tests can put patients at ease and eventually return to an almost normal QoL.  Hoftijzer also felt it important to compare another study: how thyroid cancer and breast cancer survivors measure up against one another (Schultz, 2003).  It seems even with a better prognosis with thyroid cancer, they shared a similar QoL with breast cancer patients.  Regardless of type of cancer, its very diagnosis puts a mental diagnosis on people and its one that people can’t shake very readily.  I must interject that in agreement with our researcher, emotional support is essential to all patients with a diagnosis of cancer.  Thyroid cancer is no different so this means that in addition to the physical treatment of the patient there needs to be a mental health element in conjunction with their regular treatment.

After diagnosis and treatment a patient should be very familiar with their condition and it seems the main concern was what would happen years down the road: would the cancer return? And if so, what should they look for in terms of signs?  Robert’s study took a small pool of 62 people (86 women; 57 men) all of whom had been treated for thyroid cancer (Roberts, 2008).  Quality of life was measured by health related QoL by the European Organization for Research and Treatment of Cancer.  It is very similar to the SF-36 in that it measures specific domains of functioning: physical, role, cognitive emotional, and social.  Symptom domains also include fatigue, pain, and nausea/vomiting (Roberts, 2008).  They also adapted questions to see where patients felt like they “fell in between the cracks” about their treatment and follow up.  While this study was significantly smaller than the other too, it had the advantage of finding out where the other studies fell short of following up with the mental health side of patients.  With patient age ranging from 19-92 and the majority of those had been treated 5 years plus years ago (31%).   Global functioning was higher than a cancer I mentioned in my last section, breast, and in addition in comparison to lung, colon, and rectal.  Like the other studies, the highest domains were in role and physical, with the lowest in emotional.  The majority of patients, however, had not attended a formal support group for their cancer and this might be an indicator that some were in need of one.  Statistics show that if available patients would take advantage of media related to thyroid cancer.  Websites can have a wealth of information, especially the website Thyca.  This website is geared toward survivors, what life is like after cancer and other useful tips on how to deal with diagnostic testing.  The plus side about websites are that they can be used on your personal computer in the comfort of your own home.  It was concluded in the research that felt that they got excellent care and information for their condition, but the doctors did not provide information on how to get emotional support.  Doctors treat the physical problems, but what about the concerns the patient might feel about possible recurrence? Obviously the patient will follow closely with their endocrinologist in those primal years after treatment, but what do they look for if they feel unwell? Websites and literature provide information put out by doctors and researchers who are up to date with the disease.  Doctors should be able to provide a source so patients can get mental health support as well as other media support they can use on their own time.

Another short study was conducted by Tan was similar to our last few studies, but this one is unique because it comes from a multi-ethnic asian population.  Like our other studies, the Short Form 36 was used as well as addressing the socioeconomic status of the patients and treating their disease.  152 patients with the diagnosis of differentiated thyroid cancer completed the survey over a 10-year period in Singapore.  In their evaluation using the SF-36 there was a significant decrease in all domains except for social functioning (Tan, 2007).  Physical functioning was also worse if the patient was 50 and up, perhaps this was a normal decline as when people do age their health generally is not as good.  Mental health was noticed to be generally more resilient if patients had 12 plus years of formal education.  In our western cultures education was not noted, but the reason for including this parameter might mean that those with extended education could advocate for themselves as patients.  They may be more in tune with what their treatment consists of and have more of an understanding of their disease in comparison of those people who were not formally educated.  Also noted was that mental health could be restored more quickly when the patient returned to work and not as much down time was needed.  Much like Robert’s study Tan addresses that mental health is key to dealing with the disease.  If patients are given information and support, they are more ready to take on their other obligations without excessive anxiety and worry.  Also, for those patients who are older OR those patients who have less of an understanding of their disease there should be more consideration as these where the areas which lacked.  More rehabilitative measures may be taken for those folks who are older and diagnosed with this disease and their needs should be targeted based on their physical functioning.  Same goes for people of lesser education; doctors may need to work with those who may not understand their diagnosis.  Doctors who are able to speak to patients who are not as knowledgeable will help put the patient at ease and help them be in control of their situation.  Being in control of your disease can positively affect a patients QoL and in so become more healthier in mind and body for the cured patient.

Tagay and his group of researchers took their health related QoL a step further: they examined the physical complaints of patients as well as anxiety during those days of coming off of hormone for diagnostic testing.  As mentioned earlier, patients must endure a whole body scan as well as thyroglobulin testing each year post cancer for about 5-10 years.  To see if cancer (or any thyroid at all) is in the body, the patient must come off hormone for about a month or less and go in a get tested.  The effects of coming off hormone may be substantial, with hypothyroidism being the blame.  The symptoms of the disease are: cold intolerance, weight gain, constipation, and slowness in movements (Tagay, 2006).  Luckily, recombinant hormone (marketed as Thyrogen) can help the patient remain on hormone without the effects of hypothyroidism while they are being tested.  Tagay’s study had a strength of monitoring 146 patients on hormone withdrawal at a German hospital.  They were better able to keep track of patients and meet with them to address individual concerns.  Most data is mailed to patients, whereas patients got to complete their surveys while going through diagnostic testing.  To assess the patients they used the SF-36, Hospital Anxiety and Depression Scale, Beck depression inventory, Profile of mood states, and Physical Complaints Scales.  Using a multidimensional assessment this study was better able to address the needs of their patients and in so provided insight, which may have been overlooked previously.  The results concluded that patients has significantly impaired health related QoL and also patients had a higher incidence of anxiety levels than those of depression (Tagay, 2006).  I must also note that their quality of life was only effected short term, while they were undergoing their testing.  Of course when compared to a control group they will have decreased QoL due to their temporary hypothyroidism.  Research did not that the quality of life (short-term) would be improved if patients chose the route of taking Thyrogen injections.  The downfall of these was the cost: they are about $1000 per shot.  Regardless, QoL was lowered in the physical and physco-social realms of the study—patients could have significantly improved upon getting the injections and mental health care to reduce their anxiety while in the hospital.  The shortfall of the study was in the discussion they do not address how the medical team may incorporate a better way to deal with mental health issues.

Another predictor of decreased quality of life can be seen in patients that have been treated with quantities of radioactive iodine exceeding 150 mCi.  The last two studies I’d like to present are ones that deal exclusively with decreased QoL with treatment of excessive radioactive iodine.  Almeida’s longitudinal study lasted from 1997-2006 with participation at 154 patients.  Patients were given the University of Washington QoL questionnaire to document their physical pains, and were also asked what dosage of RAI they took for treatment.  Most patients had stage I tumors at 85.1% of the population and with 14.9% being diagnosed with stage II cancer (Almeida, 2009).  Of the patients that received RAI treatment, 93 received a dosage of 130 mCi and 76 received a dose up to 150 mCi.  A very small percentage, 20, received higher than a dose of 150 which received the most complaints of RAIs side effects.  The most common complaints after a dosage of RAI are not detrimental, and usually only last as long as the radiation is in your system.  These may include dryness of the throat, eyes (tear ducts) and general mouth region.  Our researchers note, however, that RAI doses higher than 150 are associated with more adverse effects on the salivary glands (Almeida, 2009).  The Washington survey is very similar to the short form 36 which also measures several domains of functioning.  Of the 12 domains questions could be associated with: pain, appearance, activity, recreation, chewing, swallowing, speech, shoulder, taste, saliva, humor, and anxiety (Almeida). Scores are graded from 1-100, with 50 and under having a great effect on QoL, meaning higher incidence of positive symptoms.  To my surprise, 94.4% of patients who took the survey reported that their overall health was the same or better than it was before treatment.  This came as a surprise because most thyroid cancer patients, especially papillary and follicular, have no symptoms of cancer—most had only felt a nodule before treatment consisting of a total thyroidectomy and RAI.  Not sure what changed for these people, but the psychological knowing of being rid of cancer can put the patient more at ease.  Likewise, it can have the opposite effect as well! Again we seen that older patients (in this case age 45 and over) did poorer on the recreation domain—for the very fact that they could not recover as easily as someone who was younger.  For cancer patients who received over 150 mCi did worse in the majority of the domains.  A higher dose of RAI is given to patients whose cancer has metastasized beyond the neck, effecting other regions of the body—most frequently a spot on a lung is seen.  These patients will almost always have some chronic impairment of the mouth, whether ts be swallowing, change of taste, or increased anxiety.  The greatest predictor of a lowered quality of life across the board was a dose of radiation that was 150 mCi or exceeded that amount.  The job of nuclear medicine doctors is to quantitatively measure how much radiation a patient will need, and if a patient calls for more medicine due to metastases, this is necessary for their unique treatment.  However, more research needs to be done to prevent those side effects which can adversely affect a patients quality of life.

For the final study, I will present the side effects of patient’s quality of life most often seen after radiation treatment.  Aforementioned, RAI is a type of chemotherapy that has a sole purpose to kill thyroid cells that have been tainted by cancer.  Dependent on the amount of RAI, it can effect the symptoms felt from the drug.  Researcher Chow described in detail the possibility of leukemias being a potential problem with patients who exceed doses of 150 mCi.  I must note that metastasis was always seen in those patients with a high dose of RAI, it would be unlikely for a patient who had stage I cancer with minimal metastasis (only spreading to immediate lymph nodes in the neck).  While there is always a risk involved, the high dose of radiation is seen as a preventative measure.  Chow’s main concerns for potential threat of QoL will be from a secondary primary malignancy and possible temporary infertility to both men and women.  RAI concentrates in the salivary gland, colon and bladder—especially in those patients with a high dose of RAI (Chow, 2005).  Both sexes also had difficulty trying to conceive a year post treatment, this is why people are told to wait months after their treatment.  This may only have a temporary effect on quality of life for the sheer fact it might be seen as an annoyance when trying to start a family.  Luckily, trouble conceiving is usually temporary, so working with a doctor to see when would be a good time to start a family may be helpful in your endeavor.  While Chow does not specifically go in to measuring a patients QoL with these extra complications, it is important to note that these complications may need to be specifically addressed on the basis of how much radiation a patient actually receives.

In the research I have found, the biggest predictors of decreased quality of life and health related quality of life are: coming off of their regimen of thyroid hormone for diagnostic testing, radioactive iodine doses exceeding 150 mCi and physical health declining after the age of 45.  Diagnostic testing requires patients to come off their hormone, but with the new drug of Thryogen they are able to stay on their hormone without feeling the effects of hypothyroidism.  If a patient is needed doses that exceed 150 mCi then they need to be closely monitored for other adverse effects that could occur during their treatment.  As for the age factor, counseling and even a rehabilitation service should be provided for those in less than optimal health.  The goal for all health teams is to provide quality treatment to their patients and each patient may require unique services.  Another note, even though my chosen studies were drawn from around the world, they all have one thing in common: they predict better outcomes for those cancer patients with a longer duration of a cure.  If nothing else, I want to provide a review of studies which predict greater quality of life for those recovering from their post cancer treatment.  As a patient myself, I know not just my quality of life, but others with a prognosis similar to mine can make a mental as well as emotional recovery.  Careful monitoring and being comfortable with your medical team can make a world of difference; you can be in control of your disease.  Cancer has taught me a myriad of things about myself, but the most important one is helping those who’ve been in my shoes before.  It’s a scary road to take, but if I can help at least one person who will go through what I did, I know I have made a difference and helped those take comfort in knowing that I’ve been there and that you can recover, just like I have. J

References:

  • Almeida, Juliana; Luiz, José Guilherme Vartanian; Kowalski, Paulo (2009).  Clinical Predictors of Quality of Life in Patients With Initial Differentiated Thyroid Cancers. Arch Otolaryngol Head Neck Surg. 2009;135(4):342-346.
  • Chow, SM (2005).  Side Effects of High-dose Radioactive Iodine for Ablation or Treatment of Differentiated Thyroid Carcinoma. Arch Otolaryngol Head Neck Surg. 2009;135(4):342-346.
  • Crevenna, Richard; Zettinig, Georg; Keilani, Mohammad; Schmidinger, Manuela; Posch, Martin; Pirich, Christian; Nuhr, Martin; Wolzt, Michael; Quittan, Michael; Fialka-Moser, Veronika; Dudezak, Robert (2003).  Quality of Life in patients with non-metastatic differentiated thyroid cancer under thyroxine supplementation therapy.  Supportive Care in Cancer. 2003; 11(9):597-603.
  • Hoftijzer, Hendrieke C., Heemstra, Karen A., Corssmit, Eleonora P. M., van der Klaauw, Agatha A., Romijn, Johannes A., Smit, Johannes W.A. (2008).  Quality of Life in Cured Patients with Differentiated Thyroid Carcinoma.  J Clin Endocrinol Metab. 2008; 93(1):200-203.
  • Roberts, Katherine J., Lepore, Stephan J., Urken, Mark L. (2008).  Quality of Life After Thyroid Cancer: As Assessment of Patient Needs and Preferences for Information and Support.  Journal of Cancer Education. 2008; 23:186-191.
  • Tagay, Sefik; Herpertz, Stephan; Langkafel, Matthais; Erim, Yesim; Bockisch, Andreas; Senf, Wolfgang; Gorges, Rainer (2006).  Health-related quality of life, depression and anxiety in thyroid cancer patients.  Quality of Life Research. 2006; 15:696-703.
  • Tan, Lincoln G.L., Thumboo, Julian; Tan, K.S. Luke (2007).  Health Related Quality of Life in Thyroid Cancer Survivors.  The Laryngoscope. 2007; 117:507-510.
  • MayoClinic facts

*I also used a reference that was directly linked in a paper under Schultz, however, I did not reference him because I did not use his study.

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12 Responses to “Life Post Thyroid Cancer, Quality Of Life And A Happy Neck”

  1. Alexa! Get it, girl! Quality of life is such an important topic to discuss. Even after our malignant thyroids are removed from our necks, we still have to clean up the aftermath. If you look at me, you probably wouldn’t know I have cancer. But if the world could see what I deal with on the inside, I think the world’s view of thyroid cancer (you know, the easy cancer) would drastically change. I love the study that compares the QoL of thyroid cancer patients to breast cancer patients. Just because thyroid cancer has a very high survival rate does not mean that it doesn’t tear us up mentally and emotionally.

    Wonderful article–thanks for sharing!

    xoxo,
    Joanna

  2. DAT says:

    Thanks Alexa, I agree with everything Joanna said. Surviving and living well have become two separate entities to me. Just surviving is no longer acceptable! Together we will all find a better quality of life. I had exactly 150 millicents as my treatment dose so that’s food for thought. This year at my annual follow up I did use the thyrogen instead of going hypo because I trusted my endo and she said that it was my choice. Just having the choice put me at ease. During my neck scan as the technicians and doctor talked amongst themselves and clicked away I asked them everytime why the click? They were not troubled by it in the least and were happy that I wanted to partner in my disease and I find that promising for all of us. Thanks for sharing, you have already helped one person (me) but please keep sharing so we can help others just beginning their journey. You rock! Thank you 🙂

    Hugs,
    Donna

  3. Oh, and I’ll add that I’ve had a little over 250mCi of RAI and my salivary glands are nearly fried. They hurt every day…some days more than others.

  4. Dear Thyroid says:

    Alexa;

    Thank you so much for allowing us to publish your paper. Not only do I feel better educated, I appreciated that you wrote it from your personal perspective.

    Great work, kid.

    xo

  5. yogichic says:

    “There was also a subgroup of patients who were assessed 1 year after their diagnosis of thyroid cancer and they scored lower on mental health, role-emotional, role-physical, social functioning and vitality. This should be as no shock as their duration of cure had only been a year, and coming to terms with their disease is a new concept.”

    Finally, an explanation why I have been so down in the dumps. I fall into this subgroup of patients as my 1 year anniversary of adios thyroid is August 14th. Between my dosage of meds continually being tweaked and not knowing if any odd or different reaction is a result of menopause, lupus or no thyroid, my husband thought maybe I needed to see a shrink because I have been feeling totally out of whack. It’s refreshing to know I am NOT going crazy and hopefully sooner than later I will get my muse and joy back as time goes on.

    Thanks, Alexa, for sharing your research paper. It is awesome and very informative. Hope you got an A because you sure deserve one!
    🙂
    ☮ ♥
    Monica

  6. landsman2010 says:

    Joanna, I didn’t realize you had an greater dose of RAI. I did not need another dose, but what have your doctors said about your salivary glands? I’m sure you’ve brought it up but I hate to see you suffer with a residual effect. I’d be curious to know if they are predicted to get better over time. I hope so!! I appreciate your compliments! <3

  7. landsman2010 says:

    Donna,

    YES! Prime example of being your own advocate. We must always question what is happening. It would hinder us greatly as patients to not question what our doctors are doing. When I went through my first WBS after my tracer dose I was asking many questions about the image of why my neck lit up! Completely normal before RAI treatment. Still, it put me at ease.

    I’m going to do thyrogen in August — what should I expect?

    XOXO A

  8. landsman2010 says:

    DearThyroid,

    Thanks for giving me this opportunity, it makes me so happy I could share with everyone. I love this community!

    <3 Alexa

  9. landsman2010 says:

    Monica,

    Nope, you aren’t going crazy! I experienced the same thing. Depression and anxiety filled me for months after and still haunt me to some extent. In my case going to see a school counselor was very helpful (I saw Jacque from August-to this May). She helped me work out my sadness and really helped me see the positive in my experience. I gained everything from therapy in the process, this is why I can not see my cancer experience as a gift.

    Thank you for your kind words!

    Love,
    A

  10. Alexa–yes, I’ve had two doses of RAI. The first was about 150mCi and the second was about 100mCi. My salivary glands seem to be getting worse. I’ve actually had one removed. I don’t really discuss this with my endo…sounds stupid, I know. But, until I’m cancer-free, my focus is on getting to the point where I’m cancer-free. Know what I mean? So for now, I just deal with the salivary gland issues and take ibuprofen when they really hurt or are really swollen.

  11. Alexa, you’re getting the Thyrogen shot in August?! My endo told me I wouldn’t be able to get it b/c of the availability issues.

  12. Gina says:

    this is amazing, so much info to grasp. i am also bipolar so sometimes its hard to tell where the moodswings come from. however i beleive once this wicked butterfly and its friends are out of me, the road to recovery will be interesting to say the least,i imagine my overall emotional being is going to be much stronger at some point, thanks for all this info.
    gina

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