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

We are supposed to be eating better

We means those of us who are post cancer. A new study claims that all of us who get through cancer develop crappy eating habits.

"Cancer survivors are a bit less health conscious in their eating habits, a large U.S. population-based study found.

Compared with the general population, cancer survivors consumed more empty calories in the form of solid fats, alcohol, and added sugars, reported a research team.... 

In addition, cancer survivors' intake of fiber, vitamin D, and other important nutrients was lower on average than recommended levels, Zhang and colleagues reported in the journal."

Um, first of all I must state that I think I am a relatively good eater. I don't eat a lot of prepared food, I like home made food not premade crap out of the freezer or a can. I like fresh fruit and vegetables.

But, why am I eating healthy to prevent future health issues when I already have them so many? On many levels it doesn't make sense. I do try but then sometimes I wonder why I do. I mean why do I worry about things like cholesterol when one of my other ailments is going to lead to many other issues where cholesterol may end up being so far down the list in impact on my health.

Once you get through cancer many other things become less important. The medications you are given cause so many side effects that  healthy eating during chemo is changed to only eating what will stay in your stomach.

A cancer diagnosis changes everything so let's have our cake now and eat it too.

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.

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.

A Cancer Diagnosis is More Important

Today's Ask Amy column upset me and made me think. You can read it below or here as published in the Boston Globe.

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Q. My sister (in her early 40s) was diagnosed with cancer. They caught it early, so it’s still at an early stage. We in the family all found out about this a few weeks ago.

I have messaged her and her husband a few times since then to chitchat, but never asked them about the cancer.
I feel like if they want to talk about it or need my help, I will be there. It is understood by everyone in my family that we will help each other if asked.
My sister and I haven’t spoken for a week, and I found out from my other sister that my brother-in-law called me rude and not supportive because I didn’t offer to help.
I have two young children, and the younger one was constantly sick. I also work full time and am dealing with a dying father-in-law.
I don’t have the memory capacity or time to follow up on them all the time. Was I being rude?Hurt

A. You were being rude, and you ARE being rude.

Even if yours is a family that considers illness to be a private matter — your sister has cancer. It is incomprehensible that you would learn of this, initiate contact with your sister to “chitchat,” and then never mention it.
Your sister and her husband also did not bring it up, but they knew you had an awareness of their situation and were no doubt expecting you to at least inquire.
You say you can’t be supportive because your sister’s cancer is trumped by other family issues. This is even more baffling, because if you have experience dealing with illness, surely you realize that the comfort doesn’t come from offers of “help,” but from having people at least acknowledge the challenging situation illness presents.
In the course of your messaging, what does it cost you to type: “Oh, Sis, I heard about your cancer. Thank goodness it was caught early. I’m thinking of you. . .”?
All of your reasons for not doing this come off as justifications after the fact. You should apologize and offer some sisterly support.

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I agree with Amy here. If someone is diagnosed with cancer, it should be recognized by family members. I have had too many people run for the hills at the word cancer. I never wanted to be buried in phone calls about my medical issues but it is nice if family members recognize it.

Obviously the letter writer is a bit self centered and she has a bit too much going on in her life to think of anyone else. But seriously? Your sister had cancer and you blew it off.

The blind leading the sighted

I get so disappointed when I find cancer support activities lead by those who have never been diagnosed with cancer. Its a huge disappointment.

I went to visit another cancer support place/center/whatever you want to call it last week. While it was a nice place and offered a nice range of activities and support services, no one I met has ever had cancer. Some had an oncology backgrounds or extensive training, but that is not the same thing.

They have not 'walked the walk'. I don't know how they can talk the talk if they haven't walked the walk.

This is a huge frustration for me personally. I feel its right up there with someone who can't draw teaching an art class. Or the blind trying to lead the sighted.

In the process of making the appointment and meeting with their intake person I was offered a massage, tai chi, yoga class, acupuncture, acupressure, and something else I can't remember that would not help me at all. And why couldn't I just refuse instead of having to explain my medical issues?

In my perfect dream world, I would design a cancer support center where every single person in a leadership position, board members and senior staff, would be people who had been through a cancer diagnosis personally.

How can people who haven't dealt with the illness come up with appropriate activities and interactions if they haven't dealt with it themselves?

He's walking the walk, not just talking the talk

Here's an example of someone who is really walking the walk. A former NHL (Non Hodgkin Lymphoma) patient, Robert Bazemore, is now the CEO of Epizyme which is developing a drug targetting NHL (which is not just a hockey league for some with cancer).

This is huge to me.  I greatly hope that this means the company will focus on the patients and not just on the bottom line.  The article mentions that he did not mention his medical history when interviewing for the board but did reveal it after learning about the focus of the company.

As a cancer person it is very difficult not to let a disease define you and what you do. Often we keep it hidden from co-workers because we do not want to be labeled or thought of as being sick. This can be a huge detriment to one's career path. If others think we aren't physically up to a job or we might n need too much time off and would be a burden to the company and therefore would not get a job offer.

But now that we have a CEO, openly a cancer person, running a company which is developing a drug that might help him and others with his same cancer. I am a huge fan.

I wish more people could do this and society would not shame people for medical issues.

Perceptions of cancer

After living with cancer for so long, I think I have a slightly different perception of cancer than many others.

On Saturday I had a table with a craft show. I started chatting with the couple at the next table. The husband said something along the lines of  'if you have your health, you  have everything'. To which I replied, well I don't have my health. He said he didn't either because he had had cancer three times. I asked him what kinds (because if you are a cancer person, you can ask other cancer people these questions). He said he had had prostate cancer and then basal skin cancer in two places.

My first thought was basal cell skin cancer? Is that very bad? Is it life threatening? Could it become life threatening? I don't know how bad it really is. I do not mean to dis his medical history but basal cell cancer doesn't strike me as being that bad. I think he was just more scared of the word 'cancer' than me at this point.

When I was first diagnosed with breast cancer, a group of us used to joke about what the worst thing a doctor could say to us. That we had cancer. But since we had all previously heard this, there was nothing worse they could tell us.

I have since learned that being told you have chronic, incurable, progressive diseases, cancer still is the worst thing you can be told but other things can come a close second. And I am not sure how I would react to another cancer diagnosis.

I am watching GMA as they talk about how former president Carter just announced that his melanoma which had spread to his liver in brain this summer, is no longer detectable after treatment. How does that sound? Cancer which had previously metastasized is no longer detectable? So is this a cure? Or has it become a chronic disease and not a terminal one?

So why does the word cancer continue to be so scary to some people? I used to work with a woman who would say that once she heard the word cancer, she would write people off and  consider them done for as cancer was such a killer. I felt I should speak up to her and ask if she would write me off since I had cancer twice.

It is time our perceptions of cancer changed. Yes it is a killer still and will still continue to kill until a full cure is discovered. But now many people live for years and decades after a diagnosis. Before there were treatments such as chemotherapy and radiation, it was a death sentence. But now there is hope.

And we need to remember that.

The 'joys' and solitude of a second cancer

When diagnosed with a first cancer, we are all gobsmacked, appalled, overwhelmed, stunned, depressed, shocked, awed, overrun, and more as a result. You struggle through treatment and the ensuing body changes and emotions and slowly return to that so called 'new' normal and life resumes.

Then when cancer, the 'gift that keeps on giving', shows up again, you start all over again. It can be a dreaded recurrence or metastases or you can start all over again with a new cancer. Second cancers are not recurrences but new primaries. Such a joy. Not really.

When my second cancer showed up, in some ways it put me back to where I was emotionally but I was better prepared for it emotionally. And I was more proactive in coping with it. I joined support groups, on and off line, got therapy and worked hard at accepting this new health disaster.

However, I was basically the only one I knew who had had two cancers as me. Actually I know one other person in the world who had both breast cancer and thyroid cancer. (I know there are other people who have had these two cancers because it is not that uncommon that they show up in the same person but the only person I could connect to was in Europe.) We were both in the same online support group. She posted a message asking if anyone had had both and I responded.

With one cancer, you can find a ribbon to support you, a group of people like you with the cancer, and you can all bond with each other. Or you find a group of people have had a single cancer and you all can talk about the joys of treatment. But with a second cancer, you become an outlier. Most people only get one cancer. The multiple diagnoses are much fewer.

This is starting to change. New research (because we always need more research) shows that one in five cancer diagnoses are second cancers. In the 1970s only 9% of cancer diaganoses were second cancers. There are many reasons for this:

"About 19 percent of cancers in the United States now are second-or-more cases, a recent study found. In the 1970s, it was only 9 percent. Over that period, the number of first cancers rose 70 percent while the number of second cancers rose 300 percent.

Strange as it may sound, this is partly a success story: More people are surviving cancer and living long enough to get it again, because the risk of cancer rises with age."

So since I was young to get my first cancer, before age 20, and young to get my second cancer, before age 50, am I doomed to get more cancers? But at least it won't be as lonely as this second cancer rate continues to rise.

This is not a study

There is exciting new research out about a new liquid breast cancer biopsy. Wow! Wonderful! Not so fast. The study looked at FOUR people so far. I know they have more patients lined up to include but I do think announcing advancement based on four people is a bit premature.

That's like saying 'I went to the beach and found four blue grains of sand immediately' so it was a blue sand beach. Um, that doesn't work.

In this case I clearly think more research is needed.

But what is very sad about this is that I hope it is not the wave of the future where initial results and greatly publicized. Even now it is difficult enough to figure out what medical research really is promising and which is not and is still years out from hitting the market. Media hype might get the researchers more money or help their CVs but it won't help the patients who are supposed to be the beneficiaries in the long run.

Let's please go back to focusing on the patients. We are supposed to be the focus of all the research anyway.

Another 'Upside' to Breast Cancer Treatment

Its not enough that breast cancer treatment consists of slashing, poisoning and burning. These leave a physical and emotional toll that can include additional ailments, including new cancers. One of them is nice rare one without much available research and a high mortality rate - angiosarcoma. Please read and enjoy the following:

"Physicians have long noticed that breast cancer patients who have had surgery or radiation therapy have an heightened risk of developing angiosarcoma, a rare type of cancer that originates in the lining of the blood vessels.

Now, researchers at Loyola University Health System in Maywood, Ill., have focused in on a finding that could be a possible precursor to angiosarcoma. With further research this finding could lead to more definitive markers that could predict those who are most likely to develop the disease. Angiosarcoma is a malignant, rapidly growing, highly invasive type of cancer that has a high mortality rate.

In a case study published in the Journal of the American Academy of Dermatology, researchers at Loyola identified what at first appeared to be only a tiny bruise on the right breast of a 63-year-old woman. Four years prior the woman had had a lumpectomy in the breast and radiation therapy for cancer. She had also had chemotherapy and hormone therapy. 

“Normally, when you see a benign-appearing vascular lesion, you probably would pass it up,” said Dr. Joshua Mandrell, a dermatologist who co-authored the report. “But given her history, we biopsied it and it did show that it was an atypical vascular lesion.”

Atypical vascular lesions are abnormal vascular growths that are thought to form in response to trauma, such as that caused by surgery and radiation therapy, according to the study. The lesions are so rare that few medical professionals are aware of their existence. There are also no well defined prognosis factors or treatment guidelines for them.

“Atypical vascular lesions are not completely benign blood vessel growths and are not angiosarcoma. They are right in the middle. They are atypical enough that we suggest in our study that they warrant treatment,” Mandrell said. “The thought is that they could potentially become angiosarcomas.”

How lovely is that? When I searched on cancer.org's website for angiosarcoma, this is what I found:

"This form of cancer starts in cells that line blood vessels or lymph vessels. It rarely occurs in the breasts. When it does, it usually develops as a complication of previous radiation treatments. This is an extremely rare complication of breast radiation therapy that can develop about 5 to 10 years after radiation. Angiosarcoma can also occur in the arms of women who develop lymphedema as a result of lymph node surgery or radiation therapy to treat breast cancer. (For information on lymphedema, see the section "How is breast cancer treated?") These cancers tend to grow and spread quickly. Treatment is generally the same as for other sarcomas. See Sarcoma: Adult Soft Tissue Cancer."

That was all that was listed. And when I went to the link for sarcoma, it was not even mentioned. Nice.

I can't wait. I had radiation and have lymphedema. I'll just add this to my list of crap to look out for. And if its related to cancer, it is all crap.

Who is with me on this?

I was totally disgusted but also happy when I read this article about this moron oncologist, Farid Fata, who told over 500 patients they had cancer and treated them unnecessarily. Or even if they had cancer, they continued to receive chemo long after they were in remission. The result? Hundreds of people with lasting health issues and even some deaths. Then I found this article with more background.

He also over billed Medicare and insurance companies for millions of dollars as patients received over 9,000 injections or infusions. Some received unnecessary chemo for over five years.

The only thing more despicable than people who claim they have cancer and don't to raise money for themselves, are doctors who mistreat patients like this.
I just want to get in line with all these other patients and smack him in the face for his lack of morals and crimes.Who is with me on this?

Am I an expert at anything?

I can no longer work full time. I struggle to work 15 hours/week. But I don't have enough money. Cash is tight in our house. I mean I have savings in the bank but they are in nice safe IRAs so they will stay there and grow until I retire. Anyway, I am trying to come up with more ways to make money.

My first thought is I will promote my knitting and crocheting and be proactive and sell more. The more I sell, the more I can knit. This keeps me busy and out of trouble on days when I am not up to going to work. So I have added a new page to my blog which I will fill with more information and keep my Facebook page updated with pictures of my latest creations. I can take credit cards or checks (if I know you) and will ship in the US.

My second thought is perhaps I can sell my services as a cancer consultant and help people navigate the medical maze of a cancer diagnosis. So I am asking, for feedback here:

• Would you want a cancer consultant to help you with the medical maze and cancer roller coaster on where to find support and help locally to you?
• Would you pay for this? Either on the phone or in email? 
• What kinds of questions do you/did you have?

I have no medical experience so I would not provide any medical guidance. I am not a social worker so I am not providing emotional support. But I do think I can help people find local emotional resources and additional information on their cancer.

My background is two cancer diagnoses so I have walked the walk so I think I can talk the talk.

What do you think? Am I on to something here?

Low risk 'cancers'

So is it cancer or not? Sometimes they can't tell. For example which cases of DCIS will go on to turn into a potentially fatal breast cancer. Or which cases of thyroid lesions will actually grow into thyroid cancer? There is a growing epidemic of new cases of thyroid cancer and the question is which cases that are discovered will actually turn into cancer that could be fatal and which will not.

So what do you do? A lot of people fear the word cancer so much they just want it out of their body. One school of thought for the thyroid lesions that should not become a problem is to rename them "papillary lesions of indolent course". That just sounds so 'benign'.....

So if the word 'cancer' is taken out of the discussion, active surveillance might be better. I mean why go through surgery, etc for something that doesn't require treatment?  "In many cases, active surveillance may be preferred over surgery by patients with small, relatively benign cancers that could take decades to grow to any appreciable size or cause life-threatening problems."

I have so many body parts currently under 'active surveillance' for multiple issues that I have lost count. I would be happy with that for additional body parts instead of surgery, chemo or radiation. This is much easier with thyroid cancer where the area can be easily ultrasounded and palpated to monitor growth. But not so much with DCIS where breast cancer can be much quicker to grow and harder to find.

Language can have a big impact on people's opinions of their diagnosis. The word cancer strikes fear into most people's brain. It paralyzes them, they are instantly going to die! But as more and more is learned about cancer, its detection, and treatment, maybe the best bet is to retrain our brains as to what will kill us and what won't.

An example is when AIDS was discovered it was instantly a terminal disease. Now people are living for decades with it and it is now chronic and not fatal. But the term AIDS still strikes fear into many but that is slowly calming.

I hope that the word 'cancer' also does not always strike fear into all as more and more of us are still around to talk about our diagnoses decades later.