I was disappointed when my endocrinologist left for a new hospital. But I can understand that as the mother of two small children she needed a shorter commute to be able to achieve a good work/life balance. However, that meant I needed a new endocrinologist. I met him yesterday.
Before I met my endocrinologist after I had an appointment with my rheumatologist who is a nice woman in her late 50s/early 60s who has been a doctor for many years. In contrast my endocrinologist joined the hospital in early July after his residency. This means he is a kid, literally. I think I have clothes older than he is.
When I met him, my first sentence was "I have a complicated medical history". At least he had read parts of it but that lead to a big discussion about how I used to have an endocrinologist and then didn't and then finally did again which lead to evil ultrasounds that drove me crazy because they were supposed to be clean but weren't for a couple of years.
He didn't break down and cry when looking at my medical history. We made a deal. I will come back and see him in December after I get more thyroid blood work done. Then every six months I will have more blood work done and I will see him once a year. And I only will have another ultrasound if my thyroid levels go up which would signal a recurrence.
That was a good start. But I wish he would grow up a little bit.....
Showing posts with label thyroid cancer. Show all posts
Showing posts with label thyroid cancer. Show all posts
Thursday, August 17, 2017
Tuesday, January 31, 2017
I Don't Care if People Know About My Cancer History
I used to hide the fact that I had cancer. There are people who knew me for decades before I told them about my thyroid cancer diagnosis. When I was diagnosed with breast cancer I was a bit more open about it but I still kept it private to an extent.
I think I cared more about it when I was working full time. I didn't want any potential employer to know that I had cancer because, even though people are not supposed to discriminate they do. If you are looking at two potential employees who have the same credentials, the one with a history of cancer will probably not be selected because they might 'get sick again'. This is a reality all of us cancer people face regularly.
Now I don't work any more. I have told more people about my cancer history than not. I don't really care if people know. I'm am doing okay these days mentally so I am not stressed about it.
My cancer history, and other chronic medical crap, isn't going away anytime soon so I just need to be me. Hiding it doesn't benefit anyone. Talking about it and recognizing it as the part of my life, that it is, is much healthier as far as I am concerned.
I think I cared more about it when I was working full time. I didn't want any potential employer to know that I had cancer because, even though people are not supposed to discriminate they do. If you are looking at two potential employees who have the same credentials, the one with a history of cancer will probably not be selected because they might 'get sick again'. This is a reality all of us cancer people face regularly.
Now I don't work any more. I have told more people about my cancer history than not. I don't really care if people know. I'm am doing okay these days mentally so I am not stressed about it.
My cancer history, and other chronic medical crap, isn't going away anytime soon so I just need to be me. Hiding it doesn't benefit anyone. Talking about it and recognizing it as the part of my life, that it is, is much healthier as far as I am concerned.
Thursday, June 16, 2016
A Conversation with My Endocrinologist
Yesterday I saw my endocrinologist for my annual visit. At the end of her exam we had a brief conversation on being followed for thyroid cancer vs being followed because I have no thyroid.
I had an endocrinologist until the mid-1990s and then she retired and I had a primary care (and didn't need any other doctors for a long time - much different than now). In 2009, the Thyroid Cancer Survivors Association had their annual conference in Boston so I volunteered and attended it. Everyone else there talked about what their endocrinologist said to them and, their blood levels, and how they tweaked their meds all the time. Then I realized that I didn't have an endocrinologist and wondered if I should.
I went to a few of the sessions, including one lead by an endocrinologist who talked about various aspects of what they do. At the end of the session, I went up to the presenting doctor and asked him if he thought I should have an endocrinologist and he said yes. So I found a new one and started getting regular follow ups. Now seven years later, I go for yearly visits and ultrasounds every couple of years.
Yesterday, I asked Dr. C, my endocrinologist, about possible recurrence after all these years. She said its possible, but chances are slim, but there really is no real research data on this. So that was pretty inconclusive. We also talked about the new rates of diagnosis for thyroid cancer. She feels that this is largely due to new technology which allows for smaller nodules to be seen.
Back when I was diagnosed, ultrasounds were not even available. Thyroid cancer was usually only found by seeing a bulge on the patient's throat. This was then followed by a surgical excision. Most were benign but not mine.
We also discussed the fact that while I do need an endocrinologist because of my lack of thyroid, it is uncertain if I really need the cancer follow up. This includes ultrasounds to see if there is any regrowth (we really do not want that). But since cancer can be very sneaky, you never know. Thyroid cancer has been known to recur decades later even though there is no supporting research. So we will continue the cancer follow up part for now with ultrasounds every couple of years.
I will also receive life long blood work for my replacement thyroid hormone. No way around that one.
I had an endocrinologist until the mid-1990s and then she retired and I had a primary care (and didn't need any other doctors for a long time - much different than now). In 2009, the Thyroid Cancer Survivors Association had their annual conference in Boston so I volunteered and attended it. Everyone else there talked about what their endocrinologist said to them and, their blood levels, and how they tweaked their meds all the time. Then I realized that I didn't have an endocrinologist and wondered if I should.
I went to a few of the sessions, including one lead by an endocrinologist who talked about various aspects of what they do. At the end of the session, I went up to the presenting doctor and asked him if he thought I should have an endocrinologist and he said yes. So I found a new one and started getting regular follow ups. Now seven years later, I go for yearly visits and ultrasounds every couple of years.
Yesterday, I asked Dr. C, my endocrinologist, about possible recurrence after all these years. She said its possible, but chances are slim, but there really is no real research data on this. So that was pretty inconclusive. We also talked about the new rates of diagnosis for thyroid cancer. She feels that this is largely due to new technology which allows for smaller nodules to be seen.
Back when I was diagnosed, ultrasounds were not even available. Thyroid cancer was usually only found by seeing a bulge on the patient's throat. This was then followed by a surgical excision. Most were benign but not mine.
We also discussed the fact that while I do need an endocrinologist because of my lack of thyroid, it is uncertain if I really need the cancer follow up. This includes ultrasounds to see if there is any regrowth (we really do not want that). But since cancer can be very sneaky, you never know. Thyroid cancer has been known to recur decades later even though there is no supporting research. So we will continue the cancer follow up part for now with ultrasounds every couple of years.
I will also receive life long blood work for my replacement thyroid hormone. No way around that one.
Monday, April 18, 2016
No Longer A Cancer
Just like Pluto is no longer a planet, one type of thyroid cancer is no longer a cancer.
"An international panel of pathologists and clinicians has reclassified a type of thyroid cancer to reflect that it is noninvasive and has a low risk for recurrence.
"Dr Nikiforov and colleagues point out that the incidence of EFVPTC has risen two- to threefold during the past 20 to 30 years and makes up 10% to 20% of all thyroid tumors diagnosed in Europe and North America. This increased incidence has been explained by improvements in diagnosis. It has been described as an "epidemic of diagnosis" rather than a true increase in disease."
"An international panel of pathologists and clinicians has reclassified a type of thyroid cancer to reflect that it is noninvasive and has a low risk for recurrence.
The panel renamed encapsulated follicular variant of papillary thyroid carcinoma (EFVPTC) as noninvasive follicular thyroid neoplasm with papillary-like nuclear features (NIFTP)."
So you used to have cancer but now you don't any more. This isn't a cure in any way, shape, or form. Its a bit of fancy word play if you ask me. And its a way to prevent overdiagnosis. (Isn't that smart.) Its sort of like sending a rocket to Pluto and then deciding not to after it was already on its way.
For me its a bit of a different story. Back at my thyroid cancer diagnosis, I was told I had both follicular and papillary. I don't think they had any way of diagnosing subtypes then so I have no way of knowing if the follicular thyroid cancer I had was this non-cancer type or not. This is not helpful to me at all.
This is part of the movement to decrease over diagnosis and over treatment. Okay, I can understand the over treatment part but not the over diagnosis part.
"In 2013, a working group sanctioned by the National Cancer Institute proposed that a number of premalignant conditions, including ductal carcinoma in situ and high-grade prostatic intraepithelial neoplasia, should no longer be called "cancer."
Instead, the conditions should be labeled something more appropriate, such as indolent lesions of epithelial origin (IDLE), the working group suggested. "Use of the term 'cancer' should be reserved for describing lesions with a reasonable likelihood of lethal progression if left untreated," the group said at the time."
"In 2013, a working group sanctioned by the National Cancer Institute proposed that a number of premalignant conditions, including ductal carcinoma in situ and high-grade prostatic intraepithelial neoplasia, should no longer be called "cancer."
Instead, the conditions should be labeled something more appropriate, such as indolent lesions of epithelial origin (IDLE), the working group suggested. "Use of the term 'cancer' should be reserved for describing lesions with a reasonable likelihood of lethal progression if left untreated," the group said at the time."
Over diagnosis is a problem that I can agree with. However if its an ailment that requires treatment it should be treated appropriately. I also can agree if people are told what they have is not cancer, it may be significantly less stressful for the patient and their family. But if it is something that could turn in to cancer and kill you in the long run, the word cancer should not be removed from the name. And if you can't tell which it is, just assume the worst and treat accordingly.
Friday, January 22, 2016
So what does that thyroid do anyway?
All of us thyroid cancer people may have fewer problems with their cancer treatment than the life long problems they face with out a thyroid. Do you have any idea what exactly your thyroid does? Most people don't so don't worry if you don't know.
Finally I have found an article that easily explains what exactly a thyroid does.
"The thyroid is a small hormone-producing gland in the neck that controls our metabolism,” explained Army Col. (Dr.) Henry B. Burch, chair of the Endocrinology Division and professor of medicine at the Uniformed Services University of the Health Sciences. Burch is also the endocrinology consultant to the Office of the U.S. Army Surgeon General, and works in Endocrinology Service at Walter Reed National Military Medical Center (WRNMMC).
“In addition to controlling metabolism, the thyroid plays a key role in maintaining [body] temperature, or thermogenesis,” added Burch, whose work has been published in the Journal of the American Medical Association (JAMA)."
So the one big thing it does do is regulate your metabolism. And what exactly does your metabolism do? Well its kind of complicated. Try reading this to get a basic idea but its your body's little engine that keeps it going. And without a metabolism your body just slows way down and turns into a little blob. I just laugh at all those diet tips that tell you to 'ramp up' your metabolism or your thyroid.
And that temperature control thing? I'm always cold. Unless its 100 degrees with 100% humidity and then I'm just whiney.
So imagine if you had to control your metabolism by taking pills for the rest of your life and always feeling cold. This is life after thyroid cancer.
Finally I have found an article that easily explains what exactly a thyroid does.
"The thyroid is a small hormone-producing gland in the neck that controls our metabolism,” explained Army Col. (Dr.) Henry B. Burch, chair of the Endocrinology Division and professor of medicine at the Uniformed Services University of the Health Sciences. Burch is also the endocrinology consultant to the Office of the U.S. Army Surgeon General, and works in Endocrinology Service at Walter Reed National Military Medical Center (WRNMMC).
“In addition to controlling metabolism, the thyroid plays a key role in maintaining [body] temperature, or thermogenesis,” added Burch, whose work has been published in the Journal of the American Medical Association (JAMA)."
So the one big thing it does do is regulate your metabolism. And what exactly does your metabolism do? Well its kind of complicated. Try reading this to get a basic idea but its your body's little engine that keeps it going. And without a metabolism your body just slows way down and turns into a little blob. I just laugh at all those diet tips that tell you to 'ramp up' your metabolism or your thyroid.
And that temperature control thing? I'm always cold. Unless its 100 degrees with 100% humidity and then I'm just whiney.
So imagine if you had to control your metabolism by taking pills for the rest of your life and always feeling cold. This is life after thyroid cancer.
Sunday, January 17, 2016
American Cancer Society's 2016 Outlook
Earlier this week, the ACS released its new outlook for 2016 for cancer death rates in the US. As part of this, they provided four essential cancer charts. I found them very interesting, and hopeful. The first chart deals with cancer death rates over decades.
And the answer is they are going down. Look at the changes since 1990 or so! Look at the declines. The point is there, the death rates are lower than they were 25 years ago. Modern medical research has made a big impact on cancer deaths in case you were wondering why we spend so much is spent on it.
The next chart deals with types of cancer being diagnosed each year. I am very disappointed to see that thyroid cancer has made it into the top 5 types of cancer diagnosed for women each year.
The third chart shows us where lifestyle related cancer causes are highest. No surprise there - the deep South where obesity and poverty rates are highest also has the highest cancer rates. The healthiest people are in the West.
Finally, this is the chart that strikes the deepest chord with me. Look at how the rates of thyroid cancer have increased in recent decades.
Thyroid cancer used to be very rare. Not so much any more. More on these charts is available here.
Monday, December 21, 2015
August 19, 1981 Where Were You?
We all remember the first time a doctor tells us 'you have cancer'. I have always remembered. I was in post op after surgery and the doctor told me. I had long since forgotten the date but knew it was the summer of 1981.
In the process of moving, my husband has insisted I clean out some boxes of belongings in the basement. This has been a 'discussion' throughout our marriage. He has decided they are too old to be of any use to me.
I disagreed. However finally I broke down and started sorting through them (or so he thinks). What I really have done is go through them and sorted the contents briefly and then repacked them in a new box which is now sealed up, labeled and ready to be moved to our new house.
Going through the boxes did give me a chance to do a tiny bit of sorting. One of the items I found was a receipt for TV services during a hospital stay August 19-23, 1981. (I have no idea why I kept that - maybe my husband is on to something, but I will never tell him.)
What that little piece of paper told me is when I had my thyroid cancer surgery. It was my first hospitalization which I remember fairly clearly. It was a life changing event. I had long since forgotten the date.
The hospital rooms are not that different now. They may have been painted since and the beds have probably been upgraded. The TVs have been updated - they used to be big heavy ones up high on the wall in a corner. I think they had remotes. Now they have TV/computer which can surf the web as well as watch my favorite shows. They still all are private rooms with a bathroom with shower and a sink in the main part of the room.
On the other hand, I am very different. On that date, I went from a young carefree college student to someone with cancer. My life changed greatly. You have no idea. I am still digesting it.
That tiny little piece of paper finally allowed me to put a date on the day my life changed.
In the process of moving, my husband has insisted I clean out some boxes of belongings in the basement. This has been a 'discussion' throughout our marriage. He has decided they are too old to be of any use to me.
I disagreed. However finally I broke down and started sorting through them (or so he thinks). What I really have done is go through them and sorted the contents briefly and then repacked them in a new box which is now sealed up, labeled and ready to be moved to our new house.
Going through the boxes did give me a chance to do a tiny bit of sorting. One of the items I found was a receipt for TV services during a hospital stay August 19-23, 1981. (I have no idea why I kept that - maybe my husband is on to something, but I will never tell him.)
What that little piece of paper told me is when I had my thyroid cancer surgery. It was my first hospitalization which I remember fairly clearly. It was a life changing event. I had long since forgotten the date.
The hospital rooms are not that different now. They may have been painted since and the beds have probably been upgraded. The TVs have been updated - they used to be big heavy ones up high on the wall in a corner. I think they had remotes. Now they have TV/computer which can surf the web as well as watch my favorite shows. They still all are private rooms with a bathroom with shower and a sink in the main part of the room.
On the other hand, I am very different. On that date, I went from a young carefree college student to someone with cancer. My life changed greatly. You have no idea. I am still digesting it.
That tiny little piece of paper finally allowed me to put a date on the day my life changed.
Thursday, November 19, 2015
The thyroid cancer myth: the 'good' cancer
Another patient is reaching out and speaking out on thyroid cancer being the good cancer. You can watch the video here (because my technical skills do not allow me to embed the video) or read the article here.
"The reason thyroid cancer is commonly called the good cancer, according to Dr. Brose, is because it is highly treatable, but still no less frightening and life changing. Take it from thyroid cancer patient Victoria Ballesteros.
“For me the impacts were felt immediately from having severe complications from my surgery and then of course, five years later I’m still struggling with a lot of physical impacts every day,” Mrs. Ballesteros said.
Even though Mrs. Ballesteros has thus far received a clean bill of health from her doctors, it hasn’t slowed her efforts to dispel the myths associated with thyroid cancer. She still suffers from a lack of energy, weight fluctuation and trouble regulating her body temperature, as well as the emotional stress that accompanies any cancer diagnosis."
So its not just me. Actually I know many others who go through this with thyroid cancer. None of us think its a good cancer. Just stupid people do.
"The reason thyroid cancer is commonly called the good cancer, according to Dr. Brose, is because it is highly treatable, but still no less frightening and life changing. Take it from thyroid cancer patient Victoria Ballesteros.
“For me the impacts were felt immediately from having severe complications from my surgery and then of course, five years later I’m still struggling with a lot of physical impacts every day,” Mrs. Ballesteros said.
Even though Mrs. Ballesteros has thus far received a clean bill of health from her doctors, it hasn’t slowed her efforts to dispel the myths associated with thyroid cancer. She still suffers from a lack of energy, weight fluctuation and trouble regulating her body temperature, as well as the emotional stress that accompanies any cancer diagnosis."
So its not just me. Actually I know many others who go through this with thyroid cancer. None of us think its a good cancer. Just stupid people do.
Friday, November 13, 2015
There's nothing good about thyroid cancer
Thyroid cancer is often called the 'good' cancer. There is nothing good about any cancer. Even though thyroid cancer is slow growing and results in proportionally fewer deaths than most other cancers, it does have significant impact on the patients.
Now new research shows that there is a significant decrease in quality of life after thyroid cancer diagnosis and treatment. Personally I am very glad to see this study as I have always felt me it threw me for a (really big) loop and took me a long time to recover.
"A quality-of-life assessment tool measuring physical, psychological, social and spiritual effects was completed by all participants. Researchers also collected data on demographics, medical comorbidities, tumor characteristics and treatment methods. Most participants were recruited from survivorship groups (79.2%)."
I think that because of the unfortunate increase of thyroid cancer rates that this research was warranted.
"Distress of initial diagnosis, distress of ablation, distress from surgery, fear of a second cancer and distress from withdrawal from thyroid hormone yielded the lowest individual quality-of-life scores."
Um, I could have told you all that. Decades ago. And yes my worst fear did come true when I was diagnosed with a second cancer.
Now new research shows that there is a significant decrease in quality of life after thyroid cancer diagnosis and treatment. Personally I am very glad to see this study as I have always felt me it threw me for a (really big) loop and took me a long time to recover.
"A quality-of-life assessment tool measuring physical, psychological, social and spiritual effects was completed by all participants. Researchers also collected data on demographics, medical comorbidities, tumor characteristics and treatment methods. Most participants were recruited from survivorship groups (79.2%)."
I think that because of the unfortunate increase of thyroid cancer rates that this research was warranted.
"Distress of initial diagnosis, distress of ablation, distress from surgery, fear of a second cancer and distress from withdrawal from thyroid hormone yielded the lowest individual quality-of-life scores."
Um, I could have told you all that. Decades ago. And yes my worst fear did come true when I was diagnosed with a second cancer.
Monday, November 9, 2015
Medical research and me
Finally a study for me, sort of. In a recent study, they found that women with breast cancer were more likely to be diagnosed with thyroid cancer in the five years following their initial diagnosis. And vice versa, with thyroid cancer, you are more likely to be diagnosed with breast cancer.
So I am not really in the study because my cancers were 26 years apart. But its nice to get some logic for my medical crap.
The more complicated explanation is:
"The authors wrote that those second primary tumors detected within 5 years of the initial primary diagnosis show “favorable histopathological findings and prognosis,” especially in TC patients subsequently diagnosed with BC, and thus close monitoring for BC may be beneficial.
“Although the increased incidence appears to be principally due to increased detection rates, the greater expression of estrogen receptor and progesterone receptor in BC in patients with co-existing TC suggests that a specific molecular pathogenesis might underlie this association,” they concluded."
So whatever a 'histopathological finding' is and 'molecular pathogenesis' might mean, there may be some kind of reasoning behind my cancers.
As a patient, I hear about studies and clinical trials and more and they never seem to relate to me very much. Because my medical history always is different from everyone else. Its nice to have a study that could explain some of my medical stuff.
I have always been the patient who was too young for cancer, not likely to have rheumatoid, etc. But since I got all them anyway, even though I 'wasn't supposed to', I often am outside all normal parameters.
So I am not really in the study because my cancers were 26 years apart. But its nice to get some logic for my medical crap.
The more complicated explanation is:
"The authors wrote that those second primary tumors detected within 5 years of the initial primary diagnosis show “favorable histopathological findings and prognosis,” especially in TC patients subsequently diagnosed with BC, and thus close monitoring for BC may be beneficial.
“Although the increased incidence appears to be principally due to increased detection rates, the greater expression of estrogen receptor and progesterone receptor in BC in patients with co-existing TC suggests that a specific molecular pathogenesis might underlie this association,” they concluded."
So whatever a 'histopathological finding' is and 'molecular pathogenesis' might mean, there may be some kind of reasoning behind my cancers.
As a patient, I hear about studies and clinical trials and more and they never seem to relate to me very much. Because my medical history always is different from everyone else. Its nice to have a study that could explain some of my medical stuff.
I have always been the patient who was too young for cancer, not likely to have rheumatoid, etc. But since I got all them anyway, even though I 'wasn't supposed to', I often am outside all normal parameters.
Wednesday, November 4, 2015
More 'wonderful' news for me
I have to stop reading the news, damn it. I have tried to wean myself off the news, particularly medical news, Then I stop feeling educated and start feeling like a stupid patient. And if I stopped reading all news I could skip all elections and their related stupidity and inanity. But I haven't been able to stop, so I keep reading medical news and sometimes I find all sorts of stuff I may or may not want to know.
So today I have all sorts of 'great' news' I am not sure I wanted to know, well some I do like and some I don't.
First let's start off with the news that in view of huge increase in thyroid cancer diagnoses, new recommendations are that small papillary thyroid cancers be left alone and not treated.
"An increase in thyroid cancer diagnoses has led to unnecessary biopsies and surgeries. New guidelines from the American Thyroid Association endorse close observation as a possible treatment option for many small papillary thyroid tumors rather than surgery. The guidelines also caution against biopsies for many small tumors and say that when surgery is required, partial — not total — removal of the thyroid should be considered."
After a total thyroidectomy, the usual treatment for any thyroid cancer, the patient is left without a thyroid and requires lifetime follow up and medication. Thyroid cancer is slow growing and some unlikely to ever cause problems for the patient. This isn't that bad and it does show more progress in thyroid cancer treatment - instead of the usual 'one size fits all' approach.
Second, patients who are diagnosed with thyroid cancer and breast cancer are tested for Cowden's syndrome, a genetic trait which is characterized by the diagnosis of several cancers.
"Approximately 1 in 200,000 people are affected by Cowden disease and those who have the disorder have about an 85% lifetime risk for breast cancer and a 35% lifetime risk for epithelial thyroid cancer. Cowden disease is also associated with elevated risks for uterine, kidney and colon cancers."
I was tested for Cowdens and told I did not have it. And was told that I could have another mutation for which a gene had not yet been discovered. Now "Researchers have discovered a new gene, SEC23B, associated with Cowden disease, an inherited disorder that increases risk for thyroid, breast, endometrial and other cancers." This is real progress in that more than one gene mutation can cause similar problems.
So maybe there is a gene for me which would explain my unhealthy body. A note about gene mutations is that they do not have to be inherited, they can mutate just for you.
I saved the best for last. Rheumatoid arthritis has been shown to shorten your lifespan. Yippee yahoo. I needed to know that.
"Rheumatoid arthritis may raise the risk of early death by as much as 40 percent, with heart and respiratory problems the most common contributors to a shortened life span, a new study suggests."
And did you know that some RA medications can cause respiratory problems? Since my diagnosis I am back to yearly chest x-rays.
See I really need to stop reading medical news. Its bad for my mental state, whatver that may be.
So today I have all sorts of 'great' news' I am not sure I wanted to know, well some I do like and some I don't.
First let's start off with the news that in view of huge increase in thyroid cancer diagnoses, new recommendations are that small papillary thyroid cancers be left alone and not treated.
"An increase in thyroid cancer diagnoses has led to unnecessary biopsies and surgeries. New guidelines from the American Thyroid Association endorse close observation as a possible treatment option for many small papillary thyroid tumors rather than surgery. The guidelines also caution against biopsies for many small tumors and say that when surgery is required, partial — not total — removal of the thyroid should be considered."
After a total thyroidectomy, the usual treatment for any thyroid cancer, the patient is left without a thyroid and requires lifetime follow up and medication. Thyroid cancer is slow growing and some unlikely to ever cause problems for the patient. This isn't that bad and it does show more progress in thyroid cancer treatment - instead of the usual 'one size fits all' approach.
Second, patients who are diagnosed with thyroid cancer and breast cancer are tested for Cowden's syndrome, a genetic trait which is characterized by the diagnosis of several cancers.
"Approximately 1 in 200,000 people are affected by Cowden disease and those who have the disorder have about an 85% lifetime risk for breast cancer and a 35% lifetime risk for epithelial thyroid cancer. Cowden disease is also associated with elevated risks for uterine, kidney and colon cancers."
I was tested for Cowdens and told I did not have it. And was told that I could have another mutation for which a gene had not yet been discovered. Now "Researchers have discovered a new gene, SEC23B, associated with Cowden disease, an inherited disorder that increases risk for thyroid, breast, endometrial and other cancers." This is real progress in that more than one gene mutation can cause similar problems.
So maybe there is a gene for me which would explain my unhealthy body. A note about gene mutations is that they do not have to be inherited, they can mutate just for you.
I saved the best for last. Rheumatoid arthritis has been shown to shorten your lifespan. Yippee yahoo. I needed to know that.
"Rheumatoid arthritis may raise the risk of early death by as much as 40 percent, with heart and respiratory problems the most common contributors to a shortened life span, a new study suggests."
And did you know that some RA medications can cause respiratory problems? Since my diagnosis I am back to yearly chest x-rays.
See I really need to stop reading medical news. Its bad for my mental state, whatver that may be.
Sunday, November 1, 2015
Being a complainer
There is a difference between complaining and being a complainer. I complain sometimes, we all complain. And we should. We should speak our minds and make our wishes known. But if we complain too often we can become complainers where we are either Chicken Little or the Boy who cried Wolf so that when we have real complaints, they get lost or overlooked.
Here is a tale of a complainer who complained so often that her complaints became overlooked and she ended up diagnosed with stage IV thyroid cancer and died from it which lead to a malpractice suit.
I think there are a couple issues in this story. The patient complained so much and spent so much time talking about other issues that it became difficult to discern real medical issues from other issues. Of course her doctor could have done more to figure out the cause of her symptoms but he and a specialist could not find anything that significant and attributed the diagnosis of acid reflux as the cause, which is very common.
When I am the patient, I come in prepared for my appointment with a list of questions to make sure they were all addressed. I would have also kept the list from one appointment to another to make sure something is being done to find out what is wrong with me. And if it dragged on to too many times I was back in for the same thing with no change or resolution, I would get pushier and want more options.
With my medical background, I know you are never too young, too old, or too anything for a diagnosis.
I also know all medical personnel are busy and need to be told a story about a complaint. Don't say 'I have a pain', say 'I have a pain when I do this or eat this', etc. We need to make it easy for my doctors to get to the bottom of the problem. We don't need to share pictures with them or tell them about the rest of our lives. We need to give the medical professionals as much information relating to our health problems to help them help us.
We should not be complainers but we should tell about our complaints so we do not end up like the patient in the story.
Here is a tale of a complainer who complained so often that her complaints became overlooked and she ended up diagnosed with stage IV thyroid cancer and died from it which lead to a malpractice suit.
I think there are a couple issues in this story. The patient complained so much and spent so much time talking about other issues that it became difficult to discern real medical issues from other issues. Of course her doctor could have done more to figure out the cause of her symptoms but he and a specialist could not find anything that significant and attributed the diagnosis of acid reflux as the cause, which is very common.
When I am the patient, I come in prepared for my appointment with a list of questions to make sure they were all addressed. I would have also kept the list from one appointment to another to make sure something is being done to find out what is wrong with me. And if it dragged on to too many times I was back in for the same thing with no change or resolution, I would get pushier and want more options.
With my medical background, I know you are never too young, too old, or too anything for a diagnosis.
I also know all medical personnel are busy and need to be told a story about a complaint. Don't say 'I have a pain', say 'I have a pain when I do this or eat this', etc. We need to make it easy for my doctors to get to the bottom of the problem. We don't need to share pictures with them or tell them about the rest of our lives. We need to give the medical professionals as much information relating to our health problems to help them help us.
We should not be complainers but we should tell about our complaints so we do not end up like the patient in the story.
Monday, September 28, 2015
There is no good cancer
I cannot tell you how annoying I find this. To many people state that thyroid cancer is a good cancer. It is not good, its cancer.
A woman in Alaska who has had three cancer diagnoses stated:
""Thyroid cancer takes a long time to grow, so it's a great cancer to have," Zaverl said."
Okay, what is so good about it? After treatment, the patient is left without a thyroid which requires medication and monitoring for the rest of their life. That is not so great.
I do not understand that people who think thyroid cancer or any cancer is a good cancer.
Read more here: http://www.kentucky.com/2015/09/27/4055913/three-time-cancer-survivor-becky.html#storylink=cpy
A woman in Alaska who has had three cancer diagnoses stated:
""Thyroid cancer takes a long time to grow, so it's a great cancer to have," Zaverl said."
Okay, what is so good about it? After treatment, the patient is left without a thyroid which requires medication and monitoring for the rest of their life. That is not so great.
I do not understand that people who think thyroid cancer or any cancer is a good cancer.
Read more here: http://www.kentucky.com/2015/09/27/4055913/three-time-cancer-survivor-becky.html#storylink=cpy
Saturday, September 26, 2015
Brilliance at work
In recent years there has been a huge controversy about Santa Monica CA high school being full of PCBs. The result has been multiple teachers and staff have been diagnosed with thyroid cancer. Remediation has taken place in the worst areas.
Except when a brilliant group stepped in and remediated the wrong office of the school. Really? How did they manage that? To their benefit I will say the office they decontaminated was full of PCBs but it was an unused office. Not the one that is used daily.
I have been following the Santa Monica Unified School District PCB story as 3 teachers have been diagnosed with thyroid cancer and 14 more have thyroid disease which is presumed to be a result of the contamination. The elementary school I attended was recently torn down and rebuilt because of PCB contamination. And 8 years after leaving that school I was diagnosed with thyroid cancer? Coincidence? Who knows.
But brilliant idiots at work here.
Except when a brilliant group stepped in and remediated the wrong office of the school. Really? How did they manage that? To their benefit I will say the office they decontaminated was full of PCBs but it was an unused office. Not the one that is used daily.
I have been following the Santa Monica Unified School District PCB story as 3 teachers have been diagnosed with thyroid cancer and 14 more have thyroid disease which is presumed to be a result of the contamination. The elementary school I attended was recently torn down and rebuilt because of PCB contamination. And 8 years after leaving that school I was diagnosed with thyroid cancer? Coincidence? Who knows.
But brilliant idiots at work here.
Monday, September 14, 2015
Deep thoughts in the middle of the night
Insomnia, partly caused by fibromyalgia which gives me fatigue and insomnia, causes deep thoughts in the middle of the night. Sometimes I actually remember these thoughts to ponder them further.
So what occurred to me last night was that my most significant health issues to me is no longer cancer. Cancer has definitely settled back to lurk but no longer dominates my life. I get to go to extra doctors, because of my medical history, we need to be sure, but cancer is not the focus. This is nice mind set. I don't have the need to dwell on it in the middle of the night. Nor do I feel the need to dwell on it. Cancer is not worthy of any stress.
Back in July I saw my medical oncologist for my annual follow up. She took me off Femara after five years. The thought process was that Femara has not been shown to have additional benefit after five years and it could be contributing to my joint pains. But she said I could restart it if I felt stressed about potential recurrence. I didn't think that would be a problem and I am not stressed. And I might have less joint pains than before.
Also my thyroid cancer has not been problematic. Its just there and I have extra blood work because of it. But its not a stressor.
However my rheumatoid and fibromyalgia tend to rule my life. If I bend wrong or spend too long out and about, they remind me they are there. Or I can not be doing anything and they tell me they rule my body. And fibro keeps me up at night.
Something is going to do me in at some point but I am not going to worry about it. Cancer doesn't deserve to stress me out. It doesn't deserve anything. Its just a piece of crap anyway. I am not going to waste my life worrying about cancer any more than I already have.
Maybe I'll get a good night's sleep tonight.
So what occurred to me last night was that my most significant health issues to me is no longer cancer. Cancer has definitely settled back to lurk but no longer dominates my life. I get to go to extra doctors, because of my medical history, we need to be sure, but cancer is not the focus. This is nice mind set. I don't have the need to dwell on it in the middle of the night. Nor do I feel the need to dwell on it. Cancer is not worthy of any stress.
Back in July I saw my medical oncologist for my annual follow up. She took me off Femara after five years. The thought process was that Femara has not been shown to have additional benefit after five years and it could be contributing to my joint pains. But she said I could restart it if I felt stressed about potential recurrence. I didn't think that would be a problem and I am not stressed. And I might have less joint pains than before.
Also my thyroid cancer has not been problematic. Its just there and I have extra blood work because of it. But its not a stressor.
However my rheumatoid and fibromyalgia tend to rule my life. If I bend wrong or spend too long out and about, they remind me they are there. Or I can not be doing anything and they tell me they rule my body. And fibro keeps me up at night.
Something is going to do me in at some point but I am not going to worry about it. Cancer doesn't deserve to stress me out. It doesn't deserve anything. Its just a piece of crap anyway. I am not going to waste my life worrying about cancer any more than I already have.
Maybe I'll get a good night's sleep tonight.
Monday, May 4, 2015
I shall have to remember all this 'advice'
I constantly see this type of advice - how to boost, help or other tips for your underactive thyroid or slow thyroid.
Is this different from any other set of medical tips for anything other ailment? No. Well sometimes they do add things like no alcohol or take your vitamins. So why is this news worthy? They do also add in this case to avoid iodine rich foods.
I just get really aggravated by these thyroid tips on how to rev up your metabolism or your slow thyroid. I have no thyroid which is different. Well actually I have a tiny little piece of thyroid left which does squat. But there are never any tips for those of us who are thyroid free essentially. That would be more helpful. The only tip we ever get is to take our pills the same way every day, preferably on an empty stomach. Grr.
- Eat nutritious food
- Cut down on bad fats
- Limit cholesterol
- Increase fiber
- Exercise
Is this different from any other set of medical tips for anything other ailment? No. Well sometimes they do add things like no alcohol or take your vitamins. So why is this news worthy? They do also add in this case to avoid iodine rich foods.
I just get really aggravated by these thyroid tips on how to rev up your metabolism or your slow thyroid. I have no thyroid which is different. Well actually I have a tiny little piece of thyroid left which does squat. But there are never any tips for those of us who are thyroid free essentially. That would be more helpful. The only tip we ever get is to take our pills the same way every day, preferably on an empty stomach. Grr.
Sunday, March 8, 2015
I did it wrong - thyroid cancer before breast cancer
A new study shows that women who have breast cancer have a higher risk of thyroid cancer for years after diagnosis. I did it wrong. I had thyroid cancer first. (I would have been happier without either to be perfectly honest.) I am the ultimate rule breaker.
When I was diagnosed with breast cancer, there was concern that I might have Cowden's syndrome, a genetic mutation which includes breast and thyroid cancers as part of its characteristics. I took a test, and I was told I did not have it.
Now all of sudden is it important to test all women with breast cancer for thyroid cancer and increase surveillance for a number of years as well? I am not sure, even though the study says so. First of all, didn't I blog yesterday about the increase of thyroid cancer all over? Second of all, didn't we have several conversations about over-diagnosis of cancers?
Just because we have all this new cool technology, doesn't mean we are using it to its best advantage. I have strong feelings about overdiagnosis. But that is another blog topic. Maybe tomorrow, but no promises.
The study purports that the increased risk for thyroid cancer may be due to radiation exposure or even possibly due to Tamoxifen. So perhaps the focus of this should be to reduce toxicity of breast cancer treatment - and that is yet another potential blog post.
And perhaps a better understanding of these numbers should focus on the causes of thyroid cancer and why women with one are more likely to get the other. Instead of a rush to start monitoring all breast cancer patients for thyroid cancer.
When I was diagnosed with breast cancer, there was concern that I might have Cowden's syndrome, a genetic mutation which includes breast and thyroid cancers as part of its characteristics. I took a test, and I was told I did not have it.
Now all of sudden is it important to test all women with breast cancer for thyroid cancer and increase surveillance for a number of years as well? I am not sure, even though the study says so. First of all, didn't I blog yesterday about the increase of thyroid cancer all over? Second of all, didn't we have several conversations about over-diagnosis of cancers?
Just because we have all this new cool technology, doesn't mean we are using it to its best advantage. I have strong feelings about overdiagnosis. But that is another blog topic. Maybe tomorrow, but no promises.
The study purports that the increased risk for thyroid cancer may be due to radiation exposure or even possibly due to Tamoxifen. So perhaps the focus of this should be to reduce toxicity of breast cancer treatment - and that is yet another potential blog post.
And perhaps a better understanding of these numbers should focus on the causes of thyroid cancer and why women with one are more likely to get the other. Instead of a rush to start monitoring all breast cancer patients for thyroid cancer.
Saturday, March 7, 2015
Thyroid cancer is increasing everywhere
A few recent studies confirm my beliefs for the last few years.While both covered the rising incidence of thyroid cancer, one talked aobut the causes and diagnoses and the other covers the patient characteristics. Thyroid cancer is increasing in incidence and for all races and
ethnicities. Yet there are the same discussions as with other cancers on
over-treatment and over diagnosis.
"The number of newly diagnosed thyroid cancers has more than doubled during the last 3 decades, leaving no question that the incidence of thyroid cancer is rising. The answer as to why these numbers continue to increase eludes cancer specialists and endocrinologists.
“This is not just a little squeak up in the numbers,” R. Michael Tuttle, MD, professor of medicine and attending physician of endocrinology service at Memorial Sloan-Kettering Cancer Center, told HemOnc Today. “This is a real increase that is being felt by thyroid surgeons, endocrinologists, nuclear medicine doctors and those in other specialties as well.”
Current data from the NCI’s SEER database show that the incidence of thyroid cancer in 1975 was 4.85 cases per 100,000 people. By 2007, this figure jumped to 11.99 per 100,000 people. And, although data are not yet available for the past year, it is estimated that 44,670 men and women were diagnosed with thyroid cancer in 2010.
Mortality rates, however, have declined slightly from 0.55 deaths per 100,000 in 1975 to 0.47 per 100,000 in 2007, according to SEER data, leading physicians to wonder whether these increases are simply related to better detection of less invasive tumors and, if this is the case, how best to approach treatment."
So not only has the rate of incidence increase drastically but also the size of the population - which is how you get to the current incidence rates. From the American Cancer Society:
So what can be done about it? More research into causes, diagnosis and treatment. Research should also focus on quality of life for the patient and include more patient reported outcomes.
Finally, thyroid cancer should no longer be treated as a 'so-called good' cancer and get a lot more focus, funding, and research.
"The number of newly diagnosed thyroid cancers has more than doubled during the last 3 decades, leaving no question that the incidence of thyroid cancer is rising. The answer as to why these numbers continue to increase eludes cancer specialists and endocrinologists.
“This is not just a little squeak up in the numbers,” R. Michael Tuttle, MD, professor of medicine and attending physician of endocrinology service at Memorial Sloan-Kettering Cancer Center, told HemOnc Today. “This is a real increase that is being felt by thyroid surgeons, endocrinologists, nuclear medicine doctors and those in other specialties as well.”
Current data from the NCI’s SEER database show that the incidence of thyroid cancer in 1975 was 4.85 cases per 100,000 people. By 2007, this figure jumped to 11.99 per 100,000 people. And, although data are not yet available for the past year, it is estimated that 44,670 men and women were diagnosed with thyroid cancer in 2010.
Mortality rates, however, have declined slightly from 0.55 deaths per 100,000 in 1975 to 0.47 per 100,000 in 2007, according to SEER data, leading physicians to wonder whether these increases are simply related to better detection of less invasive tumors and, if this is the case, how best to approach treatment."
So not only has the rate of incidence increase drastically but also the size of the population - which is how you get to the current incidence rates. From the American Cancer Society:
- About 62,450 new cases of thyroid cancer (47,230 in women, and 15,220 in men)
- About 1,950 deaths from thyroid cancer (1,080 women and 870 men)
So what can be done about it? More research into causes, diagnosis and treatment. Research should also focus on quality of life for the patient and include more patient reported outcomes.
Finally, thyroid cancer should no longer be treated as a 'so-called good' cancer and get a lot more focus, funding, and research.
Wednesday, February 25, 2015
A nice doctor appointment
Yesterday I met with my endocrinologist, a/k/a the thyroid cancer doctor. Last year was a horrendous experience.
I was very pleased on arrival to note that the idiot nurses manning the front desk at previous visits were no longer there. They forgot me last year, which added to my stress. I used to learn a lot about their personal lives as they chatted continuously at the desk instead of managing the patients. But this year, there were new nurses and they were nice. And they did not forget me.
I met with the doctor and we had a nice conversation. My numbers are where they are supposed to be, one is a little high which means my dose is too low (its backwards with thyroid numbers - more medication to reduce numbers) so my meds are tweaked. Which means more blood work in eight weeks and six months.
Next year I will see her again, unless there are problems with my new medication level and have an ultrasound to make sure there are no cancer cooties lurking around.
It was a nice doctor appointment, free of stress and all that. I can live with that. After cancer, all we can hope for is that the cancer cooties do not return.
I was very pleased on arrival to note that the idiot nurses manning the front desk at previous visits were no longer there. They forgot me last year, which added to my stress. I used to learn a lot about their personal lives as they chatted continuously at the desk instead of managing the patients. But this year, there were new nurses and they were nice. And they did not forget me.
I met with the doctor and we had a nice conversation. My numbers are where they are supposed to be, one is a little high which means my dose is too low (its backwards with thyroid numbers - more medication to reduce numbers) so my meds are tweaked. Which means more blood work in eight weeks and six months.
Next year I will see her again, unless there are problems with my new medication level and have an ultrasound to make sure there are no cancer cooties lurking around.
It was a nice doctor appointment, free of stress and all that. I can live with that. After cancer, all we can hope for is that the cancer cooties do not return.
Friday, January 2, 2015
A cancer warning
Thyroid cancer has the highest increase in incidence in the US of all cancers. Thyroid cancer is one of the so called 'good' cancers as it has a 95% 'cure' rate.
However here are a few facts of warning:
However here are a few facts of warning:
- The 'cure' includes the removal of the patient's thyroid which results in a life time dependence on a synthetic replacement hormone. Your body 'sort-of ' runs correctly. Some people never can get their dose correct and live in constant imbalance.
- It hits the young and old - from toddlers to seniors. And its increasing in young patients to the same prevalence as Non Hodgkin Lymphoma in teenagers.
- No one knows why it is increasing in incidence so strongly but radiation exposure is suspect.
- When I was diagnosed with thyroid cancer I think there were about 12,000 cases nationally. In 2014 33 years later, there were 63,000 cases. That is more than the number of cases of rectal cancer, all types of leukemia, or all types of oral cancers, or pancreatic cancer. Haven't you heard of those?
Subscribe to:
Posts (Atom)
I Started a New Blog
I started this blog when I was diagnosed with breast cancer in 2007. Blogging really helped me cope with my cancer and its treatment. Howe...
-
I'm finally back in the blogosphere. (I'm not sure I like that term but I'll use it). Blogging really helps me cope with life. I...
-
I started this blog when I was diagnosed with breast cancer in 2007. Blogging really helped me cope with my cancer and its treatment. Howe...
-
So after you get diagnosed with cancer, it seems like everyone you know has cancer because: You have met a lot of other people going throu...