Thyroid Cancer


thyroidcancersurvivor:

It has been way too long since i updated this blog. So here it goes…I went to another follow up appointment to go over the results of my blood work with my doctor. I’ve lost count of how many times I’ve done this routine over the years. Staying on top of these appointments is part of the process to make sure those cancer cells remain undetectable.

I’m still in the clear! I will never get tired of hearing that news. But this time there was an added nugget of hope. Instead of going back in 6 months, my doc said I come back in 12 months. Another milestone which warrants a brief happy dance. Woohoo!!! See you next year doc!

Originally posted on Thyroid Cancer SURVIVOR - The Journey:

As soon as I read “What Cancer Cannot Do” I felt my inner cancer SURVIVOR come out.  We tend to give cancer a lot of power.  It is part of the process to start blaming changes in our lives, relationships, outlook, attitude and choices on cancer.  The real deal is that each one of us has the power and inner-strength to focus on what we CAN do and what cancer CANNOT do.  It is a powerful exercise. 

I started thinking about what else could be added to the list.  I’m sharing it with all of my blog readers and asking you to add to the list as well.  Here is my version:

Cancer is so limited…

It cannot turn my world to darkness.

It cannot make the beauty of nature disappear.

It cannot take over my being.

It cannot drain my creativity.

It cannot silence my voice.

It cannot prevent me…

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As soon as I read “What Cancer Cannot Do” I felt my inner cancer SURVIVOR come out.  We tend to give cancer a lot of power.  It is part of the process to start blaming changes in our lives, relationships, outlook, attitude and choices on cancer.  The real deal is that each one of us has the power and inner-strength to focus on what we CAN do and what cancer CANNOT do.  It is a powerful exercise. 

I started thinking about what else could be added to the list.  I’m sharing it with all of my blog readers and asking you to add to the list as well.  Here is my version:

Cancer is so limited…

It cannot turn my world to darkness.

It cannot make the beauty of nature disappear.

It cannot take over my being.

It cannot drain my creativity.

It cannot silence my voice.

It cannot prevent me from spreading awareness and hope.

It cannot come between my connection with a Higher Power.

It cannot stop me from laughing and smiling.

It cannot take my will power.

It cannot make me give up.

It cannot take away my joy.

It cannot change my purpose in life.

I’m sitting in the waiting room at Labcorp listening for my name to be called.  Another “post-cancer follow-up” tour has begun.  I’ve been doing this tour twice a year now for three years.  The first stop on the tour is at Labcorp where I get my blood work done.  This is the stop where I begin to notice the worry and thoughts about “what if” come into my mind.   The second stop on the tour is at the radiologist’s office where I get a thyroid ultrasound.  The tour ends at my endocrinologist’s office where we go over the results and go from there. (They just called my name.  I need to go back to the next waiting room now!)

Ok, I’m back.  I must say, that was an uplifting experience.  The lab tech who drew my blood greeted me with a smile.  She was upbeat and has a positive attitude.  This is usually not the case.  I noticed a box on her workstation of Crayon Bandages.  I asked her what they were.  She walked over, took out a red one, stuck it over the gauze on my arm and said, “Here you go.  Let’s make this fun!” 

As I left Labcorp, I thought about how attitude goes a long way in life.  It is so easy to get caught back up in the cancer attitude and feel down when going back for medical treatment of follow-up procedures.  I tend to forget that there is a choice.  It doesn’t have to be a negative experience.  It all starts with my attitude. 

I kept the red crayon bandage and put it in a place where I would see if everyday.  It will now serve as a reminder for me to check my attitude.  It’s the little things like a red bandage that can deliver a big message and lesson in life.

June 5, 2011 marks the 24th annual National Cancer Survivors Day.  I feel so grateful to be one of the estimated 12 million cancer survivors in America.  Today is a day that I reflect on my journey.  According to the National Cancer Survivors Day Foundation site, ” Hundreds of communities worldwide will host events on this day to celebrate life and demonstrate that life after a cancer diagnosis can be meaningful and productive.  National Cancer Survivors Day is a treasured annual celebration of life. Joy and hope, camaraderie and faith, and triumph over adversity will be on full display. It is a day for everyone, whether you’re a cancer survivor, a family member, a friend, or a medical professional. This day provides an opportunity for cancer survivors to connect with other survivors, and recognize the healthcare providers, families, and friends who have supported them along the way.”

So many people, organizations and groups come together on this day to unite.  LIVESTRONG created a page with Stand Up to Cancer that allows survivors to express themselves.  There is a space on the page that links to your facebook status showing the answer to the question, “What Do You Want to Say to Cancer?”

“How are you going to honor this day?”  That is my question to you.

A couple of weeks ago I had a painful reminder from my salivary gland that the RAI (radioactive iodine) treatment is starting to take a toll.  Almost two years ago, I took RAI (I-131) to kill any remaining cancer cells lurking around in my thyroid tissue.  This was done a couple of weeks after my thyroidectomy.  I didn’t have any issues with my salivary glands during that time.
If it’s not one gland, it’s another.  Instead of my thyroid gland being diagnosed with cancer, now my parotid gland has been diagnosed with sialadenitis.  Oh joy!  At this point, it is hard to say if my sialadenitis of the parotid gland is a direct result of the RAI or not.  There is not too much research on the long-term effects of RAI to date.  However, I did find a case study in the JADA called Salivary Gland Injury Resulting From Exposure to Radioactive Iodine that was very informative.  According to this study, “In the majority of cases, when a patient receives therapeutic doses of 131I, the patient develops an asymmetric radiation sialadenitis. Obstructive symptomatology is to be expected. Oral dryness occurs less often and is related directly to high dosages and the passage of time. Clinicians should be aware of the condition to avoid unnecessary diagnostic and therapeutic measures.”
Back to my story…
The pain and swelling continued for several days.  I finally went to the Otolaryngologist (Ear, Nose and Throat (ENT) doctor) last week and was told to drink a lot of water, suck candies, massage the salivary gland area and put a warm compress on it. The goal is to keep the saliva flowing and wash away any blockage. I did all of those things and it got better. I went a couple of days without swelling or pain. Then this morning I had a few bites of breakfast and the pain came back with the swelling. Nooooo! Not again!! I took Advil, massaged the area and put on a warm compress. It helped. But a girls gotta eat, so by lunch time I tried again.  It didn’t go too well. I called and left a message for my ENT and am waiting to hear back. This is very frustrating. I’m trying to keep it in perspective. Things could always be worse. I’m grateful that the thyroid cancer is in remission. Since that is the reason the RAI was even done, I need to remind myself that it did work.
My life is really good! However, eating is kind of important, so I’m hoping my parotid gland gets better soon!  Until then, I will be massaging away, chain chewing gum and sucking candies, drinking lots of water and sharing my journey with all of you.
~ I’m grateful to be a ThyCa survivor ~ I’m grateful to be a ThyCa survivor ♥ ~ I’m grateful to be a ThyCa survivor ~ ♥ ~ I’m grateful to be a ThyCa survivor ~ I’m grateful to be a ThyCa survivor ~ My parotid gland still hurts when I eat from the RAI (RadioActive Iodine). I get small bits of food caught in my throat at times. My vocal chords are still a little damaged from the thyroidectomy. My fear wakes up every 6 months when I go for follow-up scans and blood work. I get hot flashes and chills now more than ever. My memory is not was it was before. So I need to remind myself, despite it all. I FOUGHT THE FIGHT. I AM A CANCER SURVIVOR and THRIVER!!!  AND FOR THAT, I AM SO GRATEFUL!!
I’m going for my ThyCa ultrasound scan later today. The cycle of fearful thoughts are waking up in my mind.  They overpower me at times.  I wish there was a volume button, so I could put the negative ones on mute!  The thoughts are spinning around over and over.  The typical ones are…What if the cancer came back? What if it spread? Will I need another operation? I don’t want to go through the LID and RAI again. When will this end? Will I be able to get through the cancer battle again?  Am I a burden on friends and family?  When will I get the results?
One after another, the thoughts pop into my mind.  The reality is that I am taking care of myself and going for my regular follow-up visits, blood work and scans. I’m taking my medicine.  I talk about how I feel good and not so good. I blog about it, which helps.  I get helpful comments from my readers and that fills my spirit.
At this moment, I am a cancer SURVIVOR!! All of the thought are simply thoughts.  They are not reality.  I don’t have to give them power. The rest is unknown, fear of the unknown. So for now, I will stay in the present moment.  Yeah, that feels much better. I just needed to adjust my mind.  Ah, a sigh of relief. Calmness washes over me.

“Cancer comes into a life and worms its way in. It’s the unspoken presence every day of the person’s life—‘the cancer’s back’ or ‘in remission’ are common references in the life of the person with cancer. However, it continues to be the people who can fight it that make the whole disease seem beatable and worth fighting.” ~Anonymous

I was so touched by this inspiring quote, that I had to share it with all of you.  There were so many thoughts that came up for me when I read it.  As a cancer survivor, I can look back and see that it was a fight.  There were so many times that I wanted to give up, but I kept on going.  I am grateful to be in remission.  There is an “unspoken presence” ever since I was diagnosed.  I don’t feel it most days, but it is there.  It is something that I have accepted.

My hope is to stay in remission.  There is a recurrence rate of about 30% with my type of cancer.  But percentages don’t really mean much to me.  When they found my tumor, I was told that there was a 95% chance that it was non-malignant.  Regardless of the percentage, I knew in my gut that it was cancer.  When the results came back, it was confirmed that the tumor was malignant.  I was one of the people in the 5% category.  Those were not odds that I was happy about beating.  But it did teach me not to give percentages too much power.

I also learned that my health and well-being were worth fighting for.  Surviving cancer was worth the fight.  I was worth the fight!  It changed me.  I discovered my inner-voice and spoke up instead of staying silent.  I asked doctors all of my questions, instead of filtering the ones out that didn’t seem important.  I made the calls to my insurance company many times to resolve issues with coverage and billing instead paying the first bill I received.  I didn’t pay the price for the disconnect within the healthcare system.  I opened my mouth and talked about how I felt and didn’t pretend that everything was alright all of the time.  I prayed and prayed and had faith that it would all work out.  I created this blog to share my experience and help others.  In turn, I was able to get my virtual voice heard.  And to my pleasant surprise, I have gotten back so much love and support in return.

We are all worth the fight!

It’s easy to crunch the numbers on thyroid cancer and assume it is a disease fast on the rise. Incidence has more than doubled since the early 1970s, and for women, it is the cancer with the fastest-growing number of new cases.

But not every statistic tells the obvious tale. Despite the increase, thyroid cancer — a very treatable disease that develops in a butterfly-shaped gland in the neck — is still relatively uncommon.

Many people develop benign lumps, known as nodules, in the neck, but only one in 20, or less than 45,000 cases a year, are malignant. Even fewer patients have an aggressive form of the disease, which has a survival rate of nearly 97 percent after five years and results in an estimated 1,690 deaths each year. Over the last few years, however, studies showing there has been a significant increase in incidence, and even mortality, in certain groups have caused much debate in the scientific community.

“I don’t think there is any question that there is an increasing incidence of thyroid cancer,” said Dr. Kenneth Burman, chief of the endocrine section in the department of medicine at Washington Hospital Center in Washington, D.C. “But it is not that simple. The question is whether or not it is related to detection and radiological studies, or if it is related to an authentic rise in thyroid cancer.”

It is a question that still remains largely unanswered. Evidence from the Surveillance, Epidemiology and End Results database, a registry of cancer cases that is kept by the National Cancer Institute, leaves little question that there are more cases of thyroid cancer today than three decades ago. But the more important question, as Dr. Burman points out, is whether these statistics indicate a true rise in the disease or are simply a result of better diagnostic tools.

Over the last three decades, ultrasound and fine-needle biopsies have helped diagnose thousands of cases that would never have been found before. In many cases, nodules are discovered by accident during another medical investigation.

A study published in The Journal of the American Medical Association first brought this issue to light in 2006. Researchers concluded that the reported 140 percent increase in thyroid cancer from 1973 to 2002 was simply a result of “increased diagnostic scrutiny.”

They argued that a true increase in incidence would be reflected in every stage of the cancer. But the study showed that 87 percent of the increase was from small papillary thyroid cancer tumors — the most common and treatable type of thyroid cancer — that were less than two centimeters in size. Many of these cases, the researchers say, would never have caused any problems. In fact, studies have shown that thyroid cancer is found in nearly 4 percent of all fine-needle aspiration biopsy specimens.

“These cases have been there all along,” said Dr. Louise Davies, assistant professor of surgery in the division of otolaryngology, head and neck surgery at Dartmouth Medical School. “We just didn’t see them until now. Understanding this requires that you think about the word ‘cancer’ in a different way than we usually do. You can have increased rates of incidence without changing the number of people who die.”

But the mortality rate is a little more complicated than that. Survival rates, after five years, increased 4.7 percent in women, who are three times as likely to develop the disease as men, from 1974 to 2001. In men, however, the annual percentage change in thyroid cancer mortality increased significantly, by 2.4 percent, from 1992 to 2000 — the highest jump of any cancer. That is one reason many other experts argue that diagnostic tools are not the only factor.

“I think it is an oversimplification to say the increase in diagnosis is from the overuse of technology and only relates to small tumors that are insignificant,” said Dr. Steven Sherman, medical director of the endocrine center at the University of Texas M.D. Anderson Cancer Center in Houston. “There is a component that relates to increased technology, but until we can do a better job at predicting the outcomes for individuals who develop cancer we still need to treat each case.”

Physicians are fairly clueless about what else could account for this mysterious rise in incidence. Exposure to radiation from the Chernobyl nuclear power plant accident in 1986 and radioactive fallout from nuclear weapons testing in the 1950s have long been linked to thyroid cancer, but they would not account for all the new cases.

Regardless of the reported increase in small tumors, the standard of care for thyroid cancer remains the same as it was two decades ago. Patients must undergo a thryoidectomy, a surgical procedure that removes all or half of the thyroid gland. Afterward, many patients also require a radioactive iodine treatment, which kills any remaining cancer cells.

Dr. Bryan McIver, a physician in the division of endocrinology, diabetes, metabolism and nutrition at the Mayo Clinic in Rochester, Minn., said of the surgical default, “Even though the evidence does not support that it is beneficial, there is an increasing trend in the U.S., and probably worldwide, to treat all thyroid cancers in the most aggressive way.”

As a result, surgeons like Dr. Davies think the increase in diagnosis does patients with small tumors a disservice. “I don’t think it is helpful when patients pick it up by accident,” she said. “It distracts them from the problem they came in with and leads to unnecessary treatment. The mortality rate of papillary thyroid cancer is lower than the surgical complication rates.”

Since thyroid cancer has long been thought of as a disease that requires surgery, experts are starting to rethink how they approach the rapidly increasing number of small tumors.

“Sometimes I think we are doing more harm than good with these small tumors,” Dr. McIver said. “But there is also going to be a subset of these small tumors that are caught early and would have caused a problem. It’s hard to ignore a diagnosis of cancer.”

This article is from the New York Times

At times I wonder if certain cancer treatments are more dangerous or harmful than cancer itself.  A couple of years ago, my cancer treatment made me radioactive for a couple of weeks to kill the remaining cancer cells.  (No, I did not glow.)  But I was isolated from friends and family for over 3 days.  They even gave me a letter to carry in case the radioactivity left in my body set off any alarms in government buildings or airports! That caused me to step back and wonder if that treatment was worth the risk.  It worked, so I guess it was.

I have friends that have gone through chemotherapy and take all kinds of medications with terrible side effects to treat cancer.  The goal is to kill the cancer, not the person.  At times, I wonder if the doctors remember that part.  It seems like the side effects from the treatments drain what little energy is left in our bodies at the time.

I’ve moved on from cancer treatment to cancer follow-up procedures.  My doctor recommended that I get Thyrogen shots and blood work to see if my levels change.  The Thyrogen stimulates the cancer producing cells.  The shots are administered two days in a row.  One shot is the left buttocks and the other shot in the right.  It is literally a pain in the @ss!  I got the first shot this morning.  Ouch!! It hurt and burned.  Now I have a headache and feel a little nauseous from the Thyrogen.  I don’t want to go back tomorrow for the second shot.  I’ve learned that part of surviving cancer is staying positive and doing things that I don’t necessarily want to do.  I will continue to fight the fight!!!

The results should be back next week.  I will do my best NOT to think about it and live my life. (Although every time I sit, my sore butt will remind me of the shots!) There is no point in worrying about it today.  I will need to remind myself of this several times a day.  If the blood work results are high enough to detect cancer, then they will move forward with treatment.  If not, then I will continue going back every six months for follow-up visits and testing.  Either way, I guess this pain in the @ss it worth it.  I am praying that the results are good.  Regardless, I will get through it and continue sharing my journey.

xoxo,

Thyro-Jenn

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