Choosing cancer

Automatic TRANSCRIPT

How do you take down criminal network hidden in the shadows? I tell him that I know that they're the ones who are running the largest child abuse website on the darkness the journalists working to expose the darkest corners of the Internet. That's your playroom for that's your baby's clothes. That's my house. The police ace who hunt down online predators dewick right the environment. They're using no we didn't we didn't make it. They made it hunting. MOORHEAD subscribe wherever you get. Get Your podcasts. This is a CBC ABC podcast. I'm Dr Brian Goldman. Welcome to white coat. Black art the showboat medicine from all sides of the Gurney. Canadians Indians. Fear Cancer. Like nothing else. So it's not surprising that a blog. I wrote last week about so-called harmless cancers. Got Your attention by harmless. I mean cancers that don't cause symptoms don't metastasized and will never cause you to die. TURNS OUT LOW. RISK PAP Larry Thyroid. Cancer is at the top of that list. The study from Australia published last week. Found that nearly three out of every four of these thyroid cancers are so harmless. You might be better off not knowing the same. I'm is true in Canada. Where rates of thyroid cancer have shot up? Researchers have chalked up the increase to an epidemic of over diagnosis and it turns out an epidemic a couple over treatment that includes surgery that could have been avoided as you'll find out. These findings really hit home with lease Hussein. Leases a CBC producer who has prepared haired an eye opening documentary for white coat. Black Art through the dock project mentorship program. She's with me in the studio. Hi Lease high lease your. Here's a journalist but also as a patient. Tell me about your experience I was diagnosed with popularity thyroid. Cancer back in two thousand and eleven. I had my thyroid. I removed completely. And since then it's been a bit of a roller coaster. Finding the right medication Feeling different symptoms and kind of learning more about what it means to not have a thyroid. And you'RE GONNA have a lot more to say about that in the documentary but I want to know what led you to getting your thyroid. Cancer checked in the first place. My sister was diagnosed with thyroid cancer the year before in two thousand and ten she was symptomatic and she had to have a total thyroid ectomy so my family begged me to get tested. Didn't have any symptoms Adams But I but I gave in and was tested. You certainly peaked. My curiosity listen now to leases documentary. it's January two thousand eleven and I'm sitting in a small room in Mount Sinai Hospital in Toronto. I'm nervous best. The doctor comes with a student. I've met him before but we haven't established any kind of report to me. He's just a man and he says looking looking at his notes. It looks like cancer. Your thyroid will have to come out. It'll probably happen in the fall. And then he excuses himself in student and leaves leaves the room. I sit quietly. Don't really feel anything. I text one friend. One single word Cancer San going to my best friend. Vanessa's we're going to talk a little bit about. Oh cancer and when I got it she was my best friend during the process during the incident. So we're going going to find out a little bit about what she thought and what she felt. Oh Hi I rang the doorbell. Rebel is looking for Vanessa Gary on tape. She's never away. I guess sorry about that I got you have your gear. All the interviews are kind of nervous to talk about cancer. Yes interested and you and I've been friends for ten years I think so and yeah. Do you remember remember when the first time that you heard the word cancer or some hint that I'm might be be going through that when your friend tells you that they might have cancer is cancer is very scary word and it automatically equates to death. I think that's just where my mind goes so I was very scared and then when I found out what type of cancer you had we did a little bit of research on it and I felt reassured in in Weird Bay. Do you remember when I was like about the possibility of being sick at that time. I remember actually you coming over. I think we had some wine that night. I remember you came over and you told me. View definitely seem seem scared Sarah. demy surgery is pretty routine but there are risks risks. After my operation I ended up with dangerously low levels of calcium that caused something called. Tiffany tenny is a painful series of muscle spasms soms intense cramping and even seizures. In my case my hands actually started changing shape. Contorted you get locked into this weird position. It felt like going into. Rigor mortis while you're awake. My perception was affected. I had trouble understanding what people were saying to me. Tutton made me feel the sensation and deep fear. That was that was awful. I was like you just didn't seem like yourself. While you're your body was lake like pretty much shutting down due to lack of calcium so you you remember. You weren't making any sense than I remember that at that point I was. I was very weird. I I didn't understand. It just seemed like it was a very simple solution to remove the cancer. And that's it. I just didn't think that it would. It would kind of go haywire to fix it. Your body is bombarded with calcium like twenty eight grams. A day by I've e- or drinking calcium seltzer tablets but as he got better your calcium levels can surge creating another round of dramatic and scary symptoms. The doctors call call it bones stones moans and groans and upset. This'll took several months to normalize. Your mood was was fluctuating so drastically I don't want to say I was walking on eggshells but I didn't really know how I was going to fit into your life. What he meant because you seem like he wanted like you wanted to be alone and you didn't want anybody around? You didn't WANNA go out. You didn't want to socialize. They whereas like you had like a sort of paralyzing fear of whatever I remember you one day I came to visit you you and you told me that you had sought on the couch all day and you could not get up I. I don't remember that. Yeah so you said that you had not moved from the coach out of depression or fear and I guess because your mood was so like I think there was just like this battle going on in your body and you didn't really know what we you weren't lease you were a completely different person while it's actually. It's actually kind of hard to here. Yeah I thought it was crazy that that could happen to somebody that they could go from. Just just being this. The happy like funny charismatic person to just having this Oregon removed and then completely he's shutting down as a person. So why am I living this now and dragging my best friend through it. Because I'm trying trying to make sure you understand. Not Having thyroid does make a difference to your life sometimes a big one but that was nine years ago. How do I feel now? Look at me and you'll see a pretty normal person I think I'm a producer at CBC arts behind the scenes. I don't feel so great for instance this week. I've been tired like all the time but I can't sleep. I feel hot a lot. That can be really embarrassing. My weight changes with my fired levels. It goes up and down for me. That's sucks Tux. I'm on camera sometimes. Feel a lot less control than I'd like over the way I look but I'll take that it's way way better than having thyroid levels. That are too low. That is a very very dark place. You feel really tired. Your joints hurt. You can be remarkably depressed on the opposite end. If I go to high the the world gets fuzzy and loud I can feel irritable over caffeinated. I'm nine years out of the thyroid cancer diagnosis that changed my life. And now I'm left wondering did all of this to happen. Labeling of this as a non cancer sir is probably correct and unfortunately many of those patients got diagnosed cancer. They had total fire rejected these they had radiation. That was unnecessary. Sir That was Dr Paul Walsh speaking in two thousand sixteen. He was a world authority on thyroid disease at Mount Sinai Hospital. He passed away in two thousand eighteen. But here he's speaking about a lot of firewood ectomy as maybe being unnecessary hearing. This is really difficult for me. Now the the thing is Dr Paul Walsh was my doctor. The one who diagnosed me in two thousand and eleven and ordered my thyroid ectomy so what changed in those few years diagnosing and treating thyroid cancer. Did I have a needless operation. Should I still have my thyroid. It turns out over the past few years. There has been debate about whether full thyroid activities are always necessary. There are questions about whether popularity carcinoma. The type of thyroid cancer I had and the most common should should be aggressively treated. Dr Anne. Sokha of the university health network is running a study called active of surveillance. The study gives thyroid cancer patients choice. If you have the most common types of thyroid cancer capillary carcinoma and it meets certain criteria Korea as in. It's not too big. It isn't too close to your lymph nodes or other more dangerous areas. You can decide to keep your thyroid and be monitored to be clear here though this means you will also keep the cancer. I wanted to talk to Dr Sockeye to find out whether maybe my story could have been different. Frankly Really I. I wouldn't be able to know we carefully look prospectively at these ultrasounds and we decide about eligibility is really a careful selection process in terms arms of which which patients and specifically the tumor characteristics may qualify. I wouldn't be willing to look at your ultrasounds or have one of my colleagues colleagues look at your ultrasounds and I don't think it would help you. I think it could harm you and I think that what I'm thankful to you for is giving us a platform form to inform other patients that it's okay to ask your doctor. Do I really need this biopsy. Do I really need this operation. How will this benefit me? I mean what is the evidence for this and do I have any other options because all of this is clearly changing in our field. But it can't change anything for you. You can't put back the thyroid. We can't really change the past so a patient who's had third surgery from a practical standpoint. We try to optimize. He's the new normal but we can't really change the fact that they've had that operation. Dr Sokha's right. My thyroid is gone. There was no choice back then but there is. If you're a patient being diagnosed now obviously going about your life with cancer in your body is not going to be everybody's as ideal outcome but this change in thinking about how thyroid cancer is diagnosed and then treated is a huge development. Awhile ago somebody suggested to me that if we didn't call popularity carcinoma cancer. That more people would choose to keep their thyroid. That's a thought I struggle with was what I had cancer or was it not. Does it make more sense to to change the word or change the way we think about the word. If my doctor hadn't said the word cancer to meet might I have asked more questions. Hey Jason come in my sister. Jill had had thyroid cancer the year before me and very recently nine years after her own thyroid to me. She's facing the possibility of recurrence of cancer in one of her lymph nodes when she went to her doctor to talk about it. They had a whole different kind of conversation about cancer. So you into the endocrinologist vice last two week and he was telling you that you know it's possible that that the cancer has back but he he talked about it in kind of Ed. He had an analogy. That was different than cancer. Can you just tell me. I went to the endocrinologist a few days ago and he compared the possibility of having a cancer. Recurrence it to having arthritis in that it's manageable and maybe something that I have to live with for the rest of my life but it would would be similar to arthritis in that. I have a flare up. I go for a Kurdish zone. Shot and two or three years later. I have to go for another so basically saying that. Yeah the cancer cancer could be back but that could be treated. We monitor and treat again as necessary. Do you feel like that's a different conversation than you would have had with your doctor when you were initially diagnosed Absolutely was initially diagnosed. It was yet. You've got cancer. You'll have your thyroid it removed. And that's that nobody ever mentioned the impact of not having thyroid. Nobody even explained to me. What the firearm was? I also found out when I was doing my research and I still didn't even understand the magnitude of not having a firearm until after the surgery and I started realizing that my body was really different. I think nine ten years ago when I was first talking cancer it was cancer and I didn't know you know that this is a cancer that could be something that I'd be living with for the rest of my life so the conversation with the endocrinologist last week was definitely different. It was I opening and felt better than the first time around. I'm glad my sister gets to have a conversation about cancer answer. That's less full of fear. I remember the first time that word was said to me and it was a euphemism for getting sick and dying. I've had nine years of experience. Now Oh and the word just isn't as scary to me but I remember how I felt then and if you get diagnosed tomorrow I'd like to think that you'll have the agency the the resources and the support of your doctor to ask all of your questions and make the decision. That's right for you. The lease Hossain produced that documentary with White Co producer. Jeff goods under the dock project mentorship program and leases with me here in the studio you know I was sitting there when Dr Anna Sokha the endocrinologist. Who's in your documentary and we'll hear more from a bit later? Peter Politely declined to comment on your diagnosis and surgery. How'd you feel about that? I mean I. I think that it was appropriate for her to not look back and I think she she was concerned about how that might make me feel. Has any doctor. Flat out said that she didn't need to have your thyroid gland removed. It's never been flat out said but it certainly been employed you. You asked the doctor. I'm GonNa ask you if you knew back then what you know now. Would you have said No. Thanks to surgery knowing what I know now I would have said no thanks. Wow that's that's pretty powerful and a lot of people are going to be listening to that very carefully. One more thing is well in your documentary. You talked about cancer being a scary word and I I think it is for most Canadians as a radio producer. Who spends some time explaining things to people? How can we make cancer less scary? I I think that the word cancer is a bit of a euphemism for sickness and death and it would be really helpful if we could open up that word a little bit and understand that means very two different things in very different cases so usually we're in the business of trying to simplify things. I guess what you're saying. Is that in this case. Maybe we need to trust the intelligence of people and and make the word cancer more complicated. Because it's not black and white more complicated and less mystifying. Thank you for the documentary documenting and thank you for speaking with us. Thanks so much. Hey it's Annamaria tramonte and I'm excited to tell you about my new podcast fast. It's called more and be talking to people. You may think you already know until you hear them here. We've got a little more time to explore and to probe and even to play a little so get ready for the likes of David. Suzuki Catherine O'Hara Margaret Atwood. And many others. You can find more with Anna Maria tramonte wherever every. Get your favorite podcasts. You're listening to white coat black art this week. A type of thyroid cancer. WHOSE PROGNOSIS IS A lot? Less scary buried in its name. It's called low. RISK PAP Larry Thyroid. Cancer its incidence is increasing faster than any other cancer in Canada until recently that meant more Canadians Indians getting surgery to remove their thyroid glands. That's what happened to lease Hussein. She explained her documentary but it surgery that can in many cases be safely. We avoided a researcher in. Toronto is starting to change the conversation around what to do with these low risk cancers. Hello my name is Anna Sokha and an endocrinologist criminologist and clinician scientists at university health network. And we heard from Dr Sokha in leases documentary. I spoke with her at university health network where she works as an endocrinologists and researcher. I began by asking her about what doctors recommend instead of surgery to remove the thyroid cancer. What do they mean by active surveillance in terms of thyroid cancer? Her essentially refers to strategy. Where a patient is given the option to not treat the thyroid cancer and specifically not have thyroid surgery the patient is closely followed clinically and with tests such as neck ultrasound blood work and the Russian for active surveillance is that for small tumors rumors that may not necessarily grow or progress? In a patient's lifetime patients may have the option to avoid surgery as well as potential complications. which can in include damage to the nerve that recurrent laryngeal nerve which affects the voice damage to the parathyroid glands which affect calcium balance Other surgical surgical complications like bleeding or anaesthetic res- and also the potential for lifelong thyroid hormone treatment. which is always required if we completely remove the thyroid read and sometimes required even with partial removal of the thyroid based on the research? You're conducting the research that you've reviewed. How risky is it to watch and have active surveillance instead of going ahead and having the cancer removed so to date to the in the published literature which is largely based on poplar blurry thyroid cancer less than one centimeter without evidence of spread to other organs were or invasion invasion of other tissues in the neck? There has been no reported deaths due to thyroid cancer under active surveillance so no one has been reported to have died from thyroid. Cancer who has has chosen under those specific circumstances with close follow up not to have an operation. That's pretty powerful. I think it is and that's why we feel this research. Research is important. What we're offering is not necessarily pushing active surveillance versus surgery because some patients may not feel comfortable with active active surveillance and knowing that they're living with the cancer and so this is not the right choice for everyone but what we're promoting is that patients are actively given a choice this and not necessarily told that they must have a thyroid ectomy so it's audible pushing one specific strategy? It's about giving people a choice and having patients more actively involved in that choice based on what you know now. What proportion of those patients who get actor surveillance actually actually end up needing surgery and getting surgery down the road? There was a recent Interest very interesting systematic review and Meta analysis published Russian. Thyroid this summer examining the world outcomes of active surveillance. Approximately one and a half percent of the patients enrolled in active surveillance. Lintz studies had progression of disease into lymph nodes so the vast majority of patients did not have progression of disease. We need to also so remember that these patients are living with the knowledge that they have a cancer. That's been Bhai. Obse proven and so another important factor is to consider sitter that some patients simply do change their minds even if they do not have progression of their cancer. And that's actually more common for patients to crossover silver because of anxiety or preference to just have the surgery or timing of the surgery. Perhaps they didn't want surgery at a certain time point in their life where there was something critical going on. They wanted to delay the surgery. But then it's on their terms If their disease has not progressed and this is something that's available to any active surveillance patient and they changed their mind even if their tumor never grows or if they do not develop progression of disease by their criteria. You see patients who've had surgery is part with your practice. How much do they regret having surgery? First of all when you're talking about decision regret it's almost kind of unfair fair to ask because decision regret. Means you had a choice right so most people did not have a choice. They were told you have cancer so you need to have surgery. So how can you regret doing something that you were told to do. Given the growing evidence for active surveillance silence as a as a safe choice in carefully selected patients. Some have wondered whether we should still be calling this disease. Cancer her in any case well. That's a great question and remember how we define whether it's cancer or not is really on what we see under the microscope. That's the current definition. So if a Vira tumors biopsy and there are certain characteristic features of cancer most commonly poplar cancer and then this is confirmed with surgery. It's called a cancer so it's based on what how we see under the microscope. Not not necessarily based on long term patient outcomes. So that's really kind of a question is should we be defining cancers by the natural history of what what happens to patients particularly if they're not treated or should we be defining it by what's under the microscope or by the genetic profile which is a new thing that's kind of also evolving a new understanding and at present. We are still calling them cancer. But remember if you don't put a needle in it you don't Oh call it cancer because you really don't know so this is where with the smallest tumors. We really need to carefully consider. Do we need to do this biopsy or not because because once we do that biopsy and we get the word cancer we know. This is a life changing experience so I guess some patients might actually be better not to do the biopsy is is. Is that what you're saying that like this is something where you discover. One really should be discussing it with the patient. And whether a biopsy makes sense in the context context of that patient and what the patient wants but absolutely for these micro carcinomas though you've referred to so tumors under one centimeter or even if they're suspicious looking based on their ultrasound criteria but no evidence a lymph node metastasis. It is actually not currently recommended to buy see see them under the current American Heart Association guidelines as well as several radiology guidelines. But it's still happening so that's one of the things that might be worth trying to change. I think you're right but at the same time change in practice can take some time it takes education and I think in this case it also takes educating seeking patients because patients as well. If something is suspicious the first instinct is find out what it is and remove it and we need to fully inform foreign patients of all the consequences of doing that biopsy and whether that may be appropriate and if that's consistent with their their values and what they would want us to pursue. Thank you for speaking with me. Thank you for this opportunity. It's important to emphasize the doctor. Soccer is only talking about avoiding surgery in patients with small tumors that having happens spread beyond the thyroid gland itself. She says it's essential that the ones who don't get surgery be followed closely as part of a research. She's taking things even further by asking whether cancers like these even need to be biopsy D- advising patients that the best course of action is to wait can sometimes be a tough sell. It's tough for some doctors to. That's our show for this week. We'd love to hear from you if you had surgery for thyroid cancer. You're we'd also like to hear from people who've been told they have thyroid cancer and have chosen active surveillance write to us at CBC dot ca slash white coat our email address is white coat at CBC DOT CA. I'm on twitter at night shift. MD and the show is at CBC White Coat. We're also on facebook. Don't forget you can catch up on any episodes achieve missed and get the show every week by subscribing to our podcast if you wanNA listen live or on demand make sure you download the CBC listen APP and if you're looking for the latest health news and analysis subscribed a second opinions the weekly newsletter from CBS's Health Unit and subscriptions got CVC DOT CA. This week show show was produced by Jeff goods and lease sane with help from sogeti Berry digital producer Ruby wease and the rest of our digital team our senior producer. Is Donna Dingwall special. Thanks this week to Joe Johnson at the dock project mentorship program. That's medicine for my side of the Gurney. I'm Brian Goldman. See next week for more C._B._C.. PODCASTS GO TO C._B._C. Dot C._A. Slash podcasts.

Coming up next