August 30, 2011

‘The Cancer Club’: Do Thyroid Cancer Patients Belong?

By Jackie B-F

Thyroid cancer is referred to as the “good cancer” to have.  Treatment generally involves surgery followed by radioactive iodine, and cure rates for the disease are incredibly high.  After surgery, the only drugs I took were my daily hormones and a lonely round of radioactive iodine.

Less than a month after learning I was in remission, I joined a young adult cancer support group where almost everyone but me had been treated with a stem cell transplant.  My week and a half of radioactive quarantine paled in comparison to their experiences, and I felt that I wasn’t part of “the cancer club.”  I was reminded both how lucky I was and how alone I still felt, even among other young adults with cancer.

Since then, I have become active with a few young adult cancer advocacy and outdoors organizations. Unlike like the support group, participating in these organizations has affirmed my experiences as a thyroid cancer patient.  When other cancer survivors comment, “At least you got the good cancer,” I explain that my experiences haven’t been so easy and no cancer is a “good cancer.”  I went through treatment with co-morbid health issues, poor health insurance, and while living across the country from my family.  When I speak about the quarantine period required with radioactive iodine, other cancer survivors commend me for doing it all alone, and in some ways this is my right of passage into the cancer club.

It was during campfire on a First Descents trip with other young adult cancer patients that I realized my story is worthy of telling.  As I listened to other survivors whose diagnoses covered a wide spectrum, I understood that I shared in their stories.  On the most basic level, young adults with cancer know something that our non-cancer friends do not.  Many of us know what it’s like to live in a hospital, to battle insurance, and to feel isolated by a diagnosis.  Thyroid cancer patients are no different in that we too may fear recurrence, feel lonely, and are unsure about the future.  At the end of the day, regardless of our cancer type, we are all still young adults with cancer and this community is too small to have any outsiders.

For thyroid cancer patients, do you feel like a member of the ‘cancer club’?  If you have another cancer diagnosis, have you ever felt like an outsider in the young adult cancer community?

Read about life with thyroid cancer in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

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  1. Tiffany Says:
    August 30th, 2011 at 8:23 AM

    I agree, even thyroid cancer patients who only endure one round of surgery and RAI are card carrying members. But actually the “cure” rate for thyroid cancer patients after a thyroidectomy and one round of RAI is only 51% according to most recent studies. The rest will have a recurrence in the lymph nodes, and as one doctor put it, once you have a recurrence you are likely to never be cured. That leads to a lifetime of periodic radical neck dissections (for the lucky patients) or external beam radiation if it spreads to the lungs and liver. The only good thing about it is that the most common variant grows fairly slowly, which allows us time to research, make decisions, talk to loved ones, and even cross a few more items off our bucket list. And for those of us struggling with these decisions, it really is the good cancer.

  2. Emily Says:
    August 30th, 2011 at 8:25 AM

    Dash, I am so glad to see you contributing here. Your story is remarkable, and so are you.

  3. Deb Konrad Says:
    August 30th, 2011 at 11:52 AM

    There is no ‘good” cancer. I have NHL and was told this by the first oncologist I saw after my dx…needless to say, he is no longer my oncologist. When I was first dxed, I had no symptoms and was placed on Watch & Wait. I too didn’t really feel that I belonged with the other patients who had had treatment and felt like I shouldn’t be having such a hard time with the dx. I felt I should be thanking my lucky stars that I hadn’t needed to start treatment…that all changed a few months later when I became very ill and symptomatic. I was ‘lucky ” in one respect, my NHL responded to Rituxan, a monoclonal antibody, I didn’t need chemo…so I began to put myself in that catagory…gee, why am I complaining, I got to keep my hair, I didn’t have to do hard core chemo…etc. Well, you know what? I have been an unusual case from the beginning, and I am having the unusual side effects from treatment, still not feeling all that well, fatigue, etc. Cancer is cancer, no matter what the treatment or non-treatment may be. Just hearing those three words, rocks your world. My therapist has told me ” there is always going to be someone who has it better or worse, that fact does not trivialize what you are dealing with right now.

  4. Tiffany Says:
    August 30th, 2011 at 1:01 PM

    Deb: There’s no “like” button so I wanted to say I loved your post. My dad died of NHL when they were first developing Rituxan. It showed great promise for him but it was too late. And far from an easy experience. I’m glad you are still with us and able to share your story. Much love.

  5. Kairol Rosenthal
    Kairol Rosenthal Says:
    August 30th, 2011 at 2:51 PM

    Deb – Kudos to your therapist for stating it so well, and thank you for passing along her knowledge.

    Tiffany – Thanks for your comment. Seems like we are both geeks for studies and research. Can you post a link or share with me the name of the study that shows that 49% of thyroid cancer patients have recurrence in lymph nodes post surgery and RAI? The most recent information I have is from the 2011 National Comprehensive Cancer Network Thyroid Carcinoma Guidelines, which shows:

    Depending on initial therapy and other prognostic variables, up to 30% of patients with differentiated thyroid carcinoma may have tumor recurrences during several decades…Of these 30% of recurrences, 79% were local metastases.

    The info that you passed along from that doc sounds scary regarding the hopelessness of being disease free after having had a recurrence. Here’s some more hopeful stats from The National Cancer Institute Thyroid Cancer Treatment PDQ for healthcare professionals: “Approximately 50% of the patients operated on for recurrent tumors can be rendered free of disease with a second operation. Local and regional recurrences detected by I131 scan and not clinically apparent can be treated with I131 ablation and have an excellent prognosis.”

    With inquiry into survival rates, recurrence rates, and distant and local metastases, I do agree Tiffany: we are indeed members of the club!

  6. Cat Says:
    August 30th, 2011 at 3:14 PM

    I’m very hesitant to post about this. I’m a tweener with cancer- I didn’t have an “easy” cancer, nor did I have it in a truly terrifying form. I think the cancer club is, unfortunately, big enough for everyone who’s had a diagnosis. But I do think that there is a scale in the club, and a million shades of grey.

    The 5-yr survival rates for my cancer when I was diagnosed was 40%. I’ll never forget the moment when I learned that, that it was more likely that I would not reach my 30th birthday than that I would. If your cancer has a very high survival rate, you have not experienced that moment, just as I have not experienced being told I have three months to live. I needed surgery, lots of intrathecal chemo, two years of one to three chemo treatments per week, and cranial radiation. I’m doing very well, but I went through a hell of a lot.

    So it bugs me when people say “My doctor said I had a good cancer, what an asshole”, because honestly, there are so many people who would love to have heard that from a doctor. Or to hear a coworker say, “Keeping my hair meant nothing, it was still just as bad”. No, it’s not, and how could she possibly know? So I guess I would rather feel lonely in a support group (which virtually every YA does) than have legitimate fears about dying of cancer.

    But like I said, there are shades of grey. Hodgkin’s has a cure rate of over 90%, but some people do get a very nasty form and die of it, while others survive pancreatic cancer and live a long life. And people whose treatment looks like a walk in the park may deal with severe long-term effects. There’s no way of knowing any of that just based on a person’s diagnosis. What Deb’s therapist says is true- your experience is valid. It is all you know. But I think it is good to be aware of your privilege if you have it- here I am complaining about my 26 months of chemo, but at least I had a treatment option. Others don’t.

    Essentially, I think we should all support and learn from one another, and work for public education about cancer, so that there is a greater understanding of the fact that it does not present in only one common way, and that being in remission and being cured and healthy are not at all the same thing.

  7. Deb Konrad Says:
    August 30th, 2011 at 3:45 PM

    Well said Cat, as for me, my NHL is not a curable form TODAY, but that doesn’t mean that I don’t have hope that TOMORROW, I will wake up and they will have a cure.

    Wrapping my brain around the idea that as long as I respond to treatment, which gets rougher and rougher each time the disease becomes resistant to a thereapy, is hard for me. I find myself counting the months since I finished the 2 years of Rituxan maintenance…if I reach 6 months out, then the Rituxan alone is an option when I do relapse ( as my docs tell me, it isn’t a question of if, but when, (this is the nature of the beast), if I relapse before the 6 months out, then they will have to add chemo to the Rituxan. The thought terrifies me….

  8. Jackie B-F Says:
    August 30th, 2011 at 3:55 PM

    Cat: Thanks for your comment, and I’m glad to read that you’re doing well currently. I absolutely agree with you, so thank you of reminding me of how lucky I am to have the diagnosis I did. Learning from other fighters/survivors with a wide range of diagnoses has been such an important part of accepting my own diagnosis and learning how to live as a young adult with cancer. I’m glad that we are able to support each other as a community. Thank you again for sharing your perspective and story.

  9. Tiffany Says:
    August 30th, 2011 at 3:57 PM

    Thanks for the stats, I have also read those. Unfortunately they largely glaze over those of us who are non-avid, which seems to be a growing contingent. I have now heard of several doctors delivering a grim outlook after a patient sees metastasis outside the thyroid bed, but I agree that it is important to keep hope. I am traveling but will post the study when I get home.

  10. Donna Says:
    August 30th, 2011 at 4:23 PM

    I think cancer is one arena in which “comparisonitis” definitely has no place. And I don’t think anyone who has ever heard the words “The tumor is cancerous” can be considered privileged. Finally, who wants to hear the pain and suffering they’ve gone through relativized, made less of? Specifically in terms of thyroid cancer, I have found out there are other issues that may strike it from the “good cancer” list (what else is on the list? What about skin cancer? Should the club have a clearly delineated cut-off point beyond which one is refused membership? I’d have to say I’m with Groucho Marx on this one). I had thyroid cancer in 2009, with the usual treatments. A year and a half later, I am still operating on about 60 % of my former energy supply and I don’t know why, though I’m guessing it’s because before I had a thyroid making hormones and after, I didn’t. Doctors don’t help. I am learning to live with the fact that at 41, this might be the status quo form here on out. As Robert Frost wrote: “What to make of a diminished thing?”
    So I am not very patient when people (people who’ve never had cancer, specifically) assure me I’ve got the good cancer. I still have my hair, but I’d rather have my hair AND my energy, as I’m sure we’d all rather have various things back that cancer has taken away. That would be privilege.

  11. Kairol Rosenthal
    Kairol Rosenthal Says:
    August 30th, 2011 at 6:29 PM

    Cat –

    I appreciate the candor of your comment and I agree with you.

    It used to piss me off when people said that my thyroid cancer was ‘a good cancer’. And I certainly respect thyroid cancer patients, and other patients, who find this phrase caustic and offensive. However, after spending loads of time doing intimate interviews with the young adult patients in my book Everything Changes, I now feel like I DO have a good kind of cancer.

    Feeling like I have a good kind of cancer does not erase my personal suffering. It does not mean that I am happy or lucky to be a cancer patient. It does not take away my health insurance worries or my fear of check ups or my long-term side effects. But, despite having a really challenging case of papillary carcinoma, I am acutely aware of how good my prognosis still is and how much worse my treatment could have been if I had medulary thyroid cancer or some other kind of cancer. For this reason I don’t cringe when docs or others say it is a ‘good cancer’. I know that what they mean is that it is better than other cancers. I know that if I had many other kinds of cancer I would not have had the ability to traipse around the country and write a book about it. And I might not be here to type this. If people label my circumstances as ‘good’, I’ll take it. Gladly.

    Having a ‘better cancer’ does not make my cancer easier for me – but it does make my cancer easier than many other people’s. It is important for me to know this not because I want to compare and contrast who suffers the most, but it helps me be sensitive and compassionate towards other cancer patients. It reminds me that I don’t actually know what they have gone through. And that I cannot imagine how much it must suck to be on a cancer ride that is exponentially worse than mine.

    Finally, even though I feel my cancer is a better cancer to have, I recognize that I need support from others to get me through this damn disease. And this support comes from patients who have myriad other forms of cancer. I’m grateful for their help.

  12. Leela Says:
    August 30th, 2011 at 7:09 PM

    Thanx again Kairol for opening discussion. An all those who shared. And Donna, totally, had it twice an my body is jacked, I don’t have energy or can keep up with my other 42 year olds and I have other conditions showing up outta no where…my health has never been the same and I take care of it the best I can. It’s been hellish at times, but I’m grateful I’ve made it this far (in every way). I love my cancer support friends who have been there when I was alone dealing with it the first time. I wish others with difficult cancers didn’t have to go through it an tho I can’t change their experience, I can be a friend. It’s truly humbling. I also have the chance to be of service to other Thy pts through a support organization. I will go through it, and will always fight what comes at me and have the compassion to help others and learn from them.

  13. Jami Says:
    August 30th, 2011 at 8:31 PM

    here’s the thing about thyroid cancer-when we are told its cancer, we totally buy into “it’s the good cancer to have” because we don’t want to or can’t deal with the fact that we’ve just been told its cancer. it helps us stay in a little protective bubble where we aren’t “sick”. We aren’t going to die from this. We don’t need chemo? Great! Just a surgery and one radioactive iodine treatment and then I’m done? That’s easy I can do it with my eyes closed and one hand behind my back. But once the treatment begins, or ends, or somewhere in between, we realize that is total BS. For me, it meant that I almost had a nervous breakdown following treatment because I had been thinking all along, once I’m home from treatment, I’m done. I’m cured. It’s over. Fact of the matter was, far from it. Cancer is cancer no matter where it starts, grows and spreads. The prognosis and course of treatment are what differentiate thyca patients from most of the others. We all have to deal with this for the rest of our lives, however long that may be. Is it a “good cancer” if an 80 year old is diagnosed with lung cancer? No, because lung cancer is “bad”. But the 80 year old has lived most of his or her life, wheres a 30 year old thyca patient hasn’t. So is it any more fair that the 30 yr old lives the rest of her life as member of the cancer club? Would it really matter if she had breast cancer or leukemia? Or if he has testicular cancer? No, there is no such thing as good, bad or fair in the world of cancer. No one asked to join or wanted to be members of this club. Most of us are now trying to figure out how to live our lives happily, both with and without cancer. I’m very thankful for this book, and blog, but shoot I wish I’d never heard of Kairol, or thyca, or any of the lingo that now fills my brain. I know I am tremendously lucky in the world of cancer to fall into the thyca category, and I have a hard enough time dealing with my own version of cancer that I can’t even imagine the magnitude of worse that it is for so many others. But I went through hell, and as Kairol said, having the “good cancer” doesn’t diminish that. As many people said to me in the following months, “it might be the good one, but its still CANCER” There will always be someone richer, or prettier or skinnier or sicker than you. I don’t pretend to know what anyone else has gone through, in regards to cancer or any other life experience, but this idea that thyca isn’t really cancer not only diminishes the lives and experiences of those who have it, but also set us up to fail from the get go in terms of emotional and mental well being throughout and post- treatment. We know we won the cancer lotto. we didn’t ask to, we weren’t trying, and its hard to feel “lucky” at winning this round. I wasn’t gambling with my life and looking for the cancer jackpot. Cancer sucks no matter how you look at it, and on any given day yours might get the prize for sucking the most. But tomorrow it’ll be somebody else’s. So we might as well just support each other as best we can. Because at the end of the day, it doesn’t matter where our cancer started, its just a name, or a word, and it doesn’t define me at all.

  14. Jackie B-F Says:
    August 30th, 2011 at 9:04 PM

    Leela – Thanks for commenting! Like you, I’m dealing with post-effects of treatment that leave me feeling unwell a lot of the time. I don’t think we realize how much work our thyroid does until it’s gone! Have you found things that work to help you feel better and how are you adjusting to your “new normal?”

    Jami – You’re right that young adults with a cancer diagnosis face unique issues that pediatric or older patients do not. Coping with cancer can be a very individual experience and what works for one patient may not work for his/her peers. One of the great points that you bring up is that a lot of issues result post-treeatment, including asking “What just happened?!” In my experience, my “non-cancer” friends do not understand those feelings and they expect me to go back to my old self. (That’s almost impossible!) Support from the cancer community can really help to make sense of having cancer as a young adult.

  15. Kimberllee Says:
    August 30th, 2011 at 11:03 PM

    Thank you so much for having this discussion. I too was told by doctors I was lucky to have the good cancer.. Last time I checked, there was no such thing as a good cancer. Or a 100 percent curable cancer. Even with a high remission rate with thyroid cancer, it still has a tremendous impact on people who have been diagnosed with it. I really don’t see the point in playing the ” my cancer is worse than your cancer.” It’s far more productive to bring each other up than tear each other down. I see it as were all in this together. Every story has merit and value.

  16. Kim Says:
    September 3rd, 2011 at 9:38 AM

    I totally agree with Jami’s post above. I think one of the hardest things to me is the fact that most young adults, including my (non-cancer) friends, have NO CLUE how various treatment side effects of thyroid cancer have continued to affect me ever since my diagnosis in 2009. Even with trying to “explain” on a Carepage etc., they just don’t “get it” like my thyca friends/contacts do. I guess I haven’t tried to “join the cancer club” with regard to comparing to other types of cancer. I know that thyca doesn’t have the same issues with regard to mortality as other cancers do. From the get-go, I feared more for treatment side effects than for shortening of my life, since I knew thyca has a “good prognosis.” Problem is, this kind of mentality leads me to compare myself to my friends with NO cancer at all. And doing that makes me easily depressed, as I see them all with essentially boundless energy, able to run half-marathons, etc. etc. While I struggle with neuromuscular symptoms from surgical complication of hypoparathyroidism, as well as other bodily changes that I still am working on with my docs — not sure if it relates to thyroid hormone doses, or my newly discovered adrenal nodule (which needless to say has been worrying me endlessly), or what. It’s just the fact of becoming a chronic patient, with chronic disease, that has been the most difficult in my opinion. And for that, I think all thyca patients deserve to — or at the least, would be better served by — belonging to the “cancer club.”

  17. Sally Says:
    September 7th, 2011 at 8:46 PM

    I was told about having NHL over the phone by my doc. I was also told that if you have to have cancer, this is a good cancer to have. I received Chop-R chemo treatments for 6 months. I was told I would be in remission for 7-9 years.( Chop-R used to be given to patients more towards the end of their lives to give them more time but many oncologists are looking at it differently) I relapsed a year later and my doc, who has been doing this a long time, said he never had a patiend relapse that soon. I was devastated. I can never have Chop-R again because it would kill me. I then took Rituxan for 2 years and have been in remission for almost a year now. But he says it will come back. And eventually Rituxan won’t work and we will have to try something else. It is not a fun way to live. Although after 4 years I am getting used to it. I have thyroid problems and worry about getting other cancers. I have never had the energy level I used to have before. I had lost 25 lbs before getting cancer and can’t seem to get past losing 15 of it( I am very overweight anyway and I think it has to do with my thyroid?) Anyway, I think anyone who has cancer has it tough. But I know that some have it much worse than others. I think there is a scripture that says each man’s sorrow is his own and compiled with other issues in life, we really don’t know how each man suffers. Let’s have compassion for each one going through any kind of cancer or any other disease.

  18. Catherine Says:
    September 21st, 2011 at 4:44 PM

    This idea of a “club” is something that I’ve been thinking about for a long time. I am a survivor of Aplastic anemia, and I wasn’t a young adult when I was diagnosed or became a survivor, but I am now, and am finding many of the issues you discuss relevant (I really think this could be a whole new book).
    I was treated at Dana-Farber and Sloan-Kettering, I’ve been seen at NIH, and Fred Hutchinson. I had a bone marrow transplant, which did involve chemo. But my disease is not a form of cancer, even though it is treated by the same doctors, with many of the same treatments and drugs.
    When I compare myself to cancer patients, I often think that I got off lucky because I didn’t have to do multiple rounds of chemotherapy, I am not struggling with long-term complications as severe as they are and my overall odds were better at diagnosis.
    But, I was jealous that they got to follow a treatment “plan” that had dates attached to it and a road map, while what happened to me was dictated by my see-sawing blood counts. All the camps and scholarships and programs for kids with cancer and young adult survivors will take me, but I often don’t get preference, nor does my disease ever get mentioned by name.
    Having a rare disease makes explaining what I went through more difficult, because if you tell someone that you are a cancer survivor they have a picture of what that means- as correct or incorrect as it might be- while “aplastic anemia survivor” gets a blank stare. My disease does not have multi-million dollar fundraising campaigns, but I have benefited from research done for cancer. I do get the benefit of defining survivorship for myself, while many cancer survivors have a specific schema of survivorship thrust on them by society, regardless of how much they identify with it, but self-definition can be a difficult task.
    There wasn’t as much known about my disease, so we had to travel far afield to find experts, and once the available drug therapies were ineffective, my odds were actually fairly poor. Fortunately, things have gotten much better as of late, thanks to new developments in treatment and supportive care, but those came largely from patient initiatives since no official statistics and very little federal or private funding goes toward bone marrow failure diseases.
    In some ways, having my disease was better than having cancer, and in some ways it is far worse. Having a “rare” disease has introduced me to other rare disease far more serious, rare and fatal than my own or cancer. But I have, of course, struggled and faced pain and difficulty and trauma.
    Comparisons, in the end, tell us very little about our own situation or the situations of others, they only tell us how they compare, which is relevant to neither us nor the person we are comparing ourselves too.

  19. Anna N. Says:
    October 2nd, 2011 at 1:44 AM

    Sometimes I kind of feel like if you don’t have traditional chemotherapy some people don’t see you as part of the “club”. I was talking to a classmate of mine the other day who had breast cancer but didn’t do chemo and she said she felt ostracized in some support groups because of that. It’s even hard to explain to people who don’t know much about thyroid cancer – or cancer at all – that you’ve had RAI and not chemo.

    But if it’s a choice between not being in the “club” and having to do chemo…then I’m glad to not be in the club.

  20. Kairol Rosenthal Says:
    October 2nd, 2011 at 9:25 AM

    “But if it’s a choice between not being in the ‘club’ and having to do chemo…then I’m glad to not be in the club.” I am with you on that one Anna. Your comment also makes me think about how often the cancer community does not address the complexity of this disease. Cancer is not actually one disease, it is an umbrella term that describes thousands of different kinds of malignancies. The stories we hear, the support each of us needs, the treatments we do or do not take are going to vary from person to person. I completely understand the need for patients to bond over similar experiences, and how the rush to do so can be exclusive of other patients’ experiences, like your friend who felt ostracized in a support group for not having chemo. But that is where support group leaders should enter the picture and give some perspective to the group to make everyone feel included. When individuals are in the heat of cancer, I understand not having perspective, but is why it is so important that community leaders use language, examples, and advocacy that are supportive of many different patient paths.

  21. Erin Carr Says:
    December 6th, 2011 at 8:55 PM

    I had thyroid csncer and I do not feel that we are in a club because clubs are groups that you want to belong to. Cancer is something that you do not want to have to deal with. I also had a brain tumor. Neither one was fun for me.

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