PAPILLARY THYROID CANCER: THE GOOD AND BAD OF THE "GOOD CANCER"

[helvella]

I very rarely post anything about thyroid cancer. This is not because there are no papers (there are many), nor because it is not important, or interesting. No, it is simply because I feel so utterly ignorant.

This time, it isn't an almost unreadable investigation into the minutiae of some form of thyroid cancer. Rather it is a very direct questioning of the human aspects - both doctors and patients.

I'd be very interested in how those who have gone through thyroid cancer assess this abstract.

Thyroid. 2017 May 16. doi: 10.1089/thy.2016.0632. [Epub ahead of print]

PAPILLARY THYROID CANCER: THE GOOD AND BAD OF THE "GOOD CANCER".

Randle RW1, Bushman NM2, Orne J3,4, Balentine CJ5, Wendt E6, Saucke MC7, Pitt SC8, Macdonald CL9, Connor NP10, Sippel RS11.

Author information

1 University of Wisconsin, Department of Surgery, Madison, Wisconsin, United States ; [e-mail].

2 University of Wisconsin, Department of Surgery, Madison, Wisconsin, United States ; [e-mail].

3 Qualitative Health Research Consultants, Madison, Wisconsin, United States.

4 Drexel University, Department of Sociology, Philadelphia, Pennsylvania, United States ; [e-mail].

5 University of Alabama, Department of Surgery, Birmingham, Alabama, United States ; [e-mail].

6 University of Wisconsin, Department of Surgery, Madison, Wisconsin, United States ; [e-mail].

7 University of Wisconsin, Department of Surgery, Madison, Wisconsin, United States ; [e-mail].

8 University of Wisconsin, Department of Surgery, Madison, Wisconsin, United States ; [e-mail].

9 Qualitative Health Research Consultants, Madison, Wisconsin, United States ; [e-mail].

10 University of Wisconsin, Department of Surgery, Madison, Wisconsin, United States ; [e-mail].

11 University of Wisconsin, Department of Surgery, Madison, Wisconsin, United States ; [e-mail].

Abstract

BACKGROUND:

Papillary thyroid cancer is often described as the "good cancer" because of its treatability and relatively favorable survival rates. We sought to characterize the thoughts of papillary thyroid cancer patients as they relate to having the "good cancer."

METHODS:

This qualitative study included 31 papillary thyroid cancer patients enrolled in an ongoing randomized trial. We conducted semi-structured interviews with participants at the pre-operative visit and 2 weeks, 6 weeks, 6 months and 1 year after thyroidectomy. We used grounded theory, inductively coding the first 113 interview transcripts with NVivo 11.

RESULTS:

The concept of thyroid cancer as "good cancer" emerged unprompted from 94% of participants (n=29), mostly concentrated around the time of diagnosis. Patients encountered this perception from healthcare providers, internet research, friends, and preconceived ideas about other cancers. While patients generally appreciated optimism, this perspective also generated negative feelings. It eased the diagnosis of cancer but created confusion when individual experiences varied from expectations. Despite initially feeling reassured, participants described feeling the "good cancer" characterization invalidated their fears of having cancer. Thyroid cancer patients expressed that they did not want to hear that it's "only thyroid cancer" and that it's "no big deal," because "cancer is cancer," and it is significant.

CONCLUSION:

Patients with papillary thyroid cancer commonly confront the perception that their malignancy is "good," but the favorable prognosis and treatability of the disease do not comprehensively represent their cancer fight. The "good cancer" perception is at the root of many mixed and confusing emotions. Clinicians emphasize optimistic outcomes hoping to comfort, but might inadvertently invalidate the impact thyroid cancer has on patients' lives.

PMID: 28510505

DOI: 10.1089/thy.2016.0632

ncbi.nlm.nih.gov/pubmed/285...

[startagaingirl]

Hi - I will first declare I haven't gone through thyroid cancer but I have encountered a similar scenario with the endometrial (lining of the womb) cancer that I did have. It is similarly defined as having a very good prognosis, is usually "cured" with surgery and is usually picked up early hence low stage. Hence it is classed as a "good cancer to have" - as if any cancer can ever be classed as good! Any cancer can have major emotional impact on both the patient and their family & friends, an impact that can continue to be felt for years afterwards and can be very unpredictable. Even those who only have surgery can really struggle with the impact. That is before you consider those whose cancer wasn't picked up early due to relatively young age (pre-menopausal) and who often have to fight for a diagnosis - sound familiar to thyroid people that? - and who subsequently have to have extra, high impact treatments, who have a worse prognosis and - even if they do beat that - then may well have to live with long term effects of harsh treatments. I had stage 3c by the way and had chemotherapy and radiotherapy as well as surgery.

Sorry for the rambling - but no, I do not believe there is any such thing as a "good cancer" to have, only those that are more treatable. After all, even the very word still strikes unbelievable fear into all who hear it.

So thank you for posting this helvella , as this is a very important issue for patients, when sometimes even their own family can be sucked in by it, potentially leaving the patient feeling isolated and unable to discuss their fears.

Gillian

[cjrsquared]

I can completely relate to the abstract. As a health professional I regularly look after patients who are sadly at the end of their fight with malignancy. Many of my friends and colleagues expressed sympathy at my diagnosis but then said how lucky I was compared to others. Intellectually I understood what they meant but I needed to be able to emotionally process what was happening to me, as an individual, not compare myself to others. I also needed the time to heal before I could then start to care for others again. I have also cared for patients who have had radioactive iodine in the past so knew about the isolation and radiation risks. This was very different to being isolated and treated like a leper when already feeling vulnerable.

It is not a question of severity of malignancy, or severity of any disease but the impact on the individual. We all cope with our thyroid disease differently, some people do well on levothyroxine only, others still have symptoms when blood results suggest we should be well. The disease is the same but its impact can be very different and how we respond and try to heal will be unique to each person. What is sad is that many health professionals fail to understand this and continue to try the one size fits all.

I am a thyroid cancer survivor but my life isn't what it was or would have been, but I am still here and I am doing my best by taking control to live the best and most fulfilling life I can.

[Rapunzel]

It is unutterable that any medic should consider any cancer a 'good cancer'; the medical fraternity is where the concept seems to emanate. I have heard this 'good cancer' malarkey applied to my DH's prostate cancer. It is profoundly unsettling to hear the C word spoken in relation to yourself or someone close to you.

I know what freaking cancer does if left untreated and even after death, because of what I do. It is a remorseless hobgoblin squatting in our bodies, cackling. And the owner of the body must walk the remains of their life waiting for it to spring to life sucking animation. Good cancer my big fat white @rse.

Many blessing to anyone facing cancer or walking the path of life unsettled that cancer may return xx

[Gcart]

The comments are so right.

Ive been told twice I had abnormal findlng . It hits very hard and finding a way to cope is an individual journey for those of us.

Bowel cancer , and then papillary in one lobe and follicular in the other at the same time so lost thyroid .

There were many symptoms suffered before dx , all of which were ignored by GP. Nothing new there.

If it wasnt for this forum (bless you all for being so helpful ) I couldnt manage . Not so much the disease but the bloody loneliness that comes with it,

All of you out there love and hugs

Xxx

[Clutter]

Helvella,

It was an emotional shock to be told I had thyroid cancer but it felt like a slap in the face to be told that "thyroid cancer is the good cancer". If it's so damn good why do they cut it out and subject patients to radioactive iodine ablatement? As far as I can see the only good thing is that unlike many cancers chemotherapy and radiotherapy aren't usually required for follicular thyCa.

[Nanaedake]

Thyroid cancer can have a terrible impact on people's lives and it's wrong to call it a 'good cancer'. For a start, a patient loses one of the most important parts of their body although it may not be visible to others. Thyroid hormone controls every single cell in the body and it's unknown how profoundly it affects the function of other hormones or neurotransmitters or the utilisation of vitamins and minerals etc. It is unclear whether taking thyroid hormone orally compensates fully for the way the thyroid naturally releases hormone into the blood as some people continue to feel very unwell. Interviewing people at one year after losing their thyroid is not long enough as vitamin B12 deficiency may only become apparent after 2 years or more because it is stored in the liver and many thyroid patients seem to suffer vitamin deficiency. There is no adaquate follow up care for thyroid cancer patients who continue to feel unwell after treatment. There is no research being done on why patients suffer vitamin deficiencies or how losing a thyroid impacts the way the body functions. There is an assumption that taking LT4 is all that is needed and no one cares if patients feel so unwell they cannot work because they only have a 'good' cancer and are not going to die very soon. There are no social security benefits for thyroid cancer patients who continue to feel ill although they've been pronounced cured and so they have to try to keep on working when they are in horrible discomfort, distress, stressed and in pain. Their families can't understand why they are so unwell when they have a such a 'good' cancer and are supposedly cured. Life is hardly worth living and so who said it was a 'good' cancer. Happily there are forums like this that help patients to find solutions and gradually put their lives back together but unfortunately patients have to overcome barriers the NHS creates, sourcing their own blood tests and drugs to get better. I have quite a few friends who've been treated for different kinds of cancers and all of them have recieved more knowledgeable and compassionate follow-up care than the people I know who have thyroid cancer.

[nickym1]

I was told that my thyroid cancer was the best one to have by my surgeon, consultant and other 'informed' people who came into contact with me in the early days. I appreciated the kind intent, having lost my younger sister (35) to cervical cancer only 12 months prior to my diagnosis. But it did not take away any of the fear of having cancer. Because it is still cancer. And cancer can kill. You may be one of the lucky ones....Or you may not.

You still have to endure surgery, radioactive iodine treatment.

It's not a walk in the park.

It's almost exactly 5 years since I discovered a large lump on my thyroid, and I have not managed to feel normal or particularly well in this time. Despite taking T4/T3 (thanks to info here) Life is a struggle.

I have no energy left to fight for better health.

I struggle to work my 3 days a week.

I am checked annually at the hospital. The head Consultant is particularly dismissive/disinterested in how I feel, as long as my blood work meets his expectations. I dread seeing him.

I think that we patients and our families are mis-led by doctors, that we will be well and back to normal with a tablet or two each day.

I have been relieved on the odd occasion that a doctor actually admits that many thyroid patients never feel totally well again. Relieved just to have my feelings acknowledged.