Okay, I'm calling the doctor

I can't believe how crappy I fell still again. I spoke with my rheumatologist yesterday about some test results. She told me that based on the fact that there is lots of flu going around and I have been sick since Thursday, she thinks I should call my primary care and see if they think I should be tested for the flu or just go on Tamiflu. I refuse to go on another damn medication unless I really need it.

But honestly I can't continue to pretend I feel fine. I will go to the damn doctor. I feel awful. I didn't take a shower yesterday and am making myself take one before I go to the doctor. That may take me a bit.

I don't think I have a temperature. We had two thermometers here. I tried both yesterday and neither said I had a fever. But then one broke and the other one still says my temperature is 97.7. But when I go to Walgreens to pick up my other prescriptions that are waiting for me, I will get a new one and see what it says. I am sure the doctor will take my temperature too.

Yesterday I did get a lot done. I mean I watched three Lifetime movies, knitted, spackled the upstairs room we are about to paint, took care of a whole bunch of phone calls, and even made dinner (in the crockpot). Today I will be a lot less productive.

No I am not blogging about cancer related issues until I feel better and my brain starts working again.  I didn't watch the cancer movie on PBS last night because I was in bed. I might actually try to watch it today. When I do, I'll let you know what I think.

Its Movie Time!

Tonight is the premier of "Cancer: The Emperor of All Maladies" on PBS at 9 pm. The book was long and the movie actually is in three 2-hour parts airing through Wednesday night. I blogged about this a while back, I also read the book a couple of years ago. During the past week, I have also watched several trailers as well. Now the Tivo is set up to record it as it is on too late for me.

I am looking forward to this movie, or mini-series. But I do have a few reservations:

• It was a long book and while it was fairly entertaining, it was long. It wasn't a book to sit down and read on the beach. It took some thinking and digesting. I would read a few chapters and ponder them for a few days or a week and then read more.
• Although I reassured some in my other blog post, it does concern me that it is it is about cancer, which is not the most cheerful of topics. And sometimes I am just not in the mood to watch cancer-cancer-cancer.
• Sometimes I have problems watching other people going through their cancer journeys. I have found some stories to be too drama filled, or sad, or have me wondering 'what were these people thinking?' when they or a family member were diagnosed with cancer.
• If it is six hours of doctors talking about medical breakthroughs, I am not sure I will make it through. 
• There is no way I am going to stay up (with a cold, on a weeknight, three nights in a row) until 11 pm.

So it may take  me a few days or a week or so to watch the entire six hours. I do hope to watch it and enjoy it. I will probably blog about it again when I am done.

Once again, home with a cold

I never used to get colds. Now I get them, and much worse than before, all the time. A friend pointed out that this is the second for me this year. She might have missed one as well. That's being sick too often.

But my colds are just a side effect of RA treatment. Rheumatoid is an autoimmune disease which means your immune system attacks you. It is treated by suppressing your immune system, which makes you more susceptible dumbass colds.

Last weekend I went to visit my brother and he had a cold. I was really tired when I got home but wasn't sick. Tuesday I felt fine. My husband came home with a cold Tuesday night, slept 11 hours and felt fine on Wednesday morning. I felt fine on Wednesday so I had my methotrexate injection.

Thursday morning when I went to work, I felt iffy, which turned into really crappy by 11am and horrible by noon when I went home. My husband cooked dinner Thursday night. I pretended I felt better Friday and ran a couple errands but mostly stayed home, Yesterday I assumed I was better and ran another couple of errands and did some other stuff around the house.

This morning is another story. I can't talk. My brother told me I sound like the voice of something or other that I cant remember because I feel so crappy. I asked my husband not to make fun of my voice, again. He has fun with this with most colds. He also informed me that I should need to stay in bed today.

So now I am living on triaminc syrup, herbal tea, and chocolate ice cream until I get better. I have decided that chocolate ice cream has healing qualities.

I really just want to run away and join the circus be healthy so I can do things that are more fun that watching bad tv, knitting and sitting on the couch with the cat. Not that I don't like the cat, watching TV or knitting, but there are lots of other things I wouldn't mind doing instead.

PCBs, Cancer and Schools

Back in early February, I blogged about being interviewed for an article on the PCB connection and cancer. Schools and other buildings built before 1979 often used PCBs in sealants and all sorts of other parts of the finishes.

Now the article is out and my part is not included which is no big deal. But the article provides a lot of good information on the problem with PCBs and the resulting health issues.

PCBs are a real problem in homes, schools, commercial and industrial buildings nationally. Many cancers are attributed to environmental factors and it would not surprise me if PCBs are one of them.

I went to one of the best school systems in the country but my elementary school was full of PCBs. Other than giving me a good education, did it give me bad health? That question cannot be answered and I cannot waste time on worrying about the causes and blame. I need to move forward but I hope the EPA and other entities take notice and work to remove them and other toxins from our lives.

Palliative care

Palliative care is not hospice care. It can be part of hospice care but in itself is separate. Now there is some research that palliative care should start at the point of an advanced stage cancer diagnosis and not later. The study focused on both the patient and the caregivers. Both of who handled everything better with it. Palliative care is pain and symptom relief - isn't that really important?

Personally I think palliative care should be part of any major medical diagnosis. I have been through too many medical issues not to appreciate the importance of it. I sometimes my consider my pain management doctor one of the most important people in my medical team. See Hollye's diagnosis story here where she talks about this more.

"Palliative care, a team-based approach in which a group of professionals – including doctors, nurses, social workers, psychiatrists, dieticians, and chaplains – focus on relieving the pain, anxiety, and stress that cancer can cause, can help control pain and improve quality of life in many situations."

At my breast cancer diagnosis, a social worker was involved in the initial team and was part of my care all during active treatment and somewhat afterwards. As I grew stronger, I was able to find support elsewhere that was more convenient and didn't require  yet another drive to the (damn) hospital.

"...your plan might include ways to manage pain, fatigue, loss of appetite, nausea, and insomnia. Your team also can provide help and resources for dealing with emotional, practical, and spiritual concerns."

Pain management is essential in well being. If you are in any kind of pain, whether post surgical or other causes, keeping it under control offers the patient an important respite - the ability to rest, eat, and move more easily.

While I might not need more palliative care right now, I will be sure to find it when I do.

At least we are all here to talk about it

Yesterday afternoon I was at the gym. While changing, I started chatting with two other women in the locker room. One woman, A.,  I had spoken with before and knew she had breast cancer at one point but the other woman, B., I had never met. She told us openly that she had had breast cancer before as well.

A. had breast cancer 25 years ago and B. had had breast cancer 12 years ago, plus another cancer, and another scare about a third cancer. Between the three of us, we had all been through radiation. A. had a double mastectomy and B. a single. B. was also a therapist who had lead a breast cancer support group. As she is winding down her practice, she wants to restart her group again.

That lead to a big conversation with A. stating, "at least we are all here to talk about it". This is oh so very true. And I think we often forget it.

As we go through life and ride our medical roller coasters, we need to remind ourselves to take a step back every once in a while and say "I am still here to talk about it". I may bitch whine about my doctors, the state of my health, , aches and pains, and other annoyances, but I need to remember I'm still here.

Some people still consider cancer a death sentence. It is not as we are here to talk about it. And we must remember the ones who are not.

Doing my research

Every so often, I get the good idea to get my medical reports and review them myself. I do this because people tell me I should have the copies of my test results. I try to do what I am told, am often curious, and too impatient to wait for the doctor to tell me at our next visit.

Then I take my little reports home with me and try to decipher them. Why is my RBC below normal? Answer it has never recovered since chemo and it is just under normal. Some of the other tests I do not really understand. I do some research and end up at medical articles where I need to go to med school to be able to decipher.

At some point, I always say to myself "Why am I doing this anyway?" Sometimes I convince myself I have some deadly disease or ailment that will kill me without immediate treatment. Other times I convince myself that I really am healthy with just a few bad test results.

But my point is that I do my research and feel I should more frequently get my test results and monitor them better. For example my last blood test included my C-Reactive protein measurement. This is what tells the level of my rheumatoid and whether I am experiencing a flare up or not.

Unfortunately I don't think I have enough of my blood test results. But need to dig through my files to see what they have been in the past so I can continue to track them. Then I can continue to do research and see if I am going to live or not.

Or I can just continue to self diagnose myself into every ailment known to man.

Genetic mutations

As I hear the news that Angelina has had another surgery, this one to remove her ovaries and fallopian tubes, I ponder, what would I do? But as I listen to the doctors on TV talking about how she has reduced her risk of ovarian cancer significantly through this surgery, I am inclined to agree with her.

She has had a difficult medical journey with a BRCA 1 gene mutation and a strong family history of breast and ovarian cancer. I would think that anyone faced with this type of decision would agree that all need to make their own decisions but her decisions sound logical and she seems to be comfortable with them.

One thing that has always concerned me about genetic research is what if I had one? What would I do? I have no idea. At one point I was tested to see if I had a specific genetic mutation, one that is found in women who have both breast and thyroid cancers, and was told I didn't have it. Which was a big relief.

I mean if I had a genetic mutation, what would I do? First of all, genetic mutations can be inherited or can occur in individuals. Then you get a label - being a mutant - and you get stress. Now you have to make decisions on how to deal with it. There is often not much you can do about a mutation, other than watchful waiting.

Some of them, like BRCA, you can have surgeries or take medications and reduce your risk of health issues. Many others, there is much less you can do. You just get more medical visits and follow ups to test for issues. I think you would be stuck, waiting for the inevitable to happen. Not fun.

You may call me a weinie but I have never had any desire to find out what mutations I might have. I know I seem to have been dealt the unlucky hand in the health lottery, but I do not want to know if more ailments might be in store for me. I prefer to enjoy my life as it is now instead of stewing over what might be. I know what my life is now but I have no way of knowing what might be.

What a long strange trip...

So I was out of town for a long weekend which is why I didn't blog. Other than being really tired from driving about 750 miles in the last four days - half today and half on Friday - and being exposed to my brother's evil cold, I am fine.

I spent 20 minutes on hold on my drive out on Friday with the hospital trying to cancel an unnecessary doctor appointment so my frustration level with the medical world is fine as well.

I did get to spend some quality time with my nieces and nephews which was a lot of fun. We also had an early celebration for my brother's birthday. And it snowed both days. How lovely. The grip of winter is all around us.

I am exhausted which means I will go to bed early and get lots of rest so I can return to the world tomorrow. And I might even write a real blog post as well.

Unless I get my brother's evil cold, in which case I will send him a lump of coal for his birthday, and end up staying in bed for a few days.

Some portions normal

Yesterday I had one of those oh-so-fun medical adventures at the hospital to follow up on some symptoms. I was chatting with the technician during the test and at the end, I asked her if I was normal (for the test results) and she said 'some of it was normal'. What that means is that the doctor has to go read it and figure out what parts of it were normal, what was due to previous known issues and what is a concern.

For once, can't I just be normal and have normal test results? I think I would need to be healthy for that.

But anyway the doctor should have the results today and if I don't hear from her by next week I can call and get them. But I can also just swing by the medical records department and pick up a copy of the results next week. (I am a big fan of the medical records department since I have learned that I can go there at any time and get test results or appointment notes whenever I want.)

[I'll provide more information on the actual test and results sometime later when I know more. And its nothing that significant.}

Will biotech research cuts hurt advancement?

Around the world, biotech and big pharma are trying to manage their costs and some are beginning to cut research jobs, which can slow finding new treatments. This is a normal problem for any business, if you have to cut back, some things just don't happen.

When I first joined the business world, I worked for a company that was facing a round of layoffs. To this day, I clearly remember a co-worker saying to me "they can't lay me off as they won't have someone to do my job function". Well, guess what? The company decided not to have that job function any more and she was let go.

Businesses need to change and evolve to prosper. If they do not, they will no longer be in business.

I agree that biotech and big pharma need to make cuts and adjustments to continue to prosper. But they also need to take a look at their profits and their pricing. I honestly believe that biotech and big pharma need to review their entire financial model to adapt to the changing economy.

The insurance and medical care industries are reeling from the huge burden of costs from newly developed drugs and is really struggling to pay the bills. And the pharma companies are worth billions as the patients go bankrupt.

Are we looking for the wrong thing?

As all cancer patients are told, after treatment you will find your 'new normal'. Basically you get to go back to being yourself again and regaining your life. But it never seems to happen.

A friend sent me this article from the New York Times on a young woman, after cancer, is looking for her old self, and being lost in transition from cancer land to her new self.

It made me think (a dangerous proposition at times). What if you are a non cancer (or non any major ailment) person, you go through life and you evolve slowly and your life changes, and its no big deal, its normal. Maybe you grow apart from some friends, gain new ones; start yoga and stop running; quit eating red meat and white sugar in order to be healthier; redecorate your house, or kept trying to lose those same damn 10 pounds. These changes happen over time but if you look at yourself from last year to this year, have you made changes? Probably. And unless you stop and think about it, you may not notice them.

With cancer (or insert any life changing diagnosis), you are yanked from your nice calm life and shifted into cancerland, riding the cancer roller coaster while holding hands with your friends, family, and oncology team who want to know about every sniffle. Then poof, you are pronounced 'cured',  get a little certificate from your chemo nurses, and your doctors don't want to see you for six months, instead of every week or month.

You are supposed to find your new normal by tomorrow morning and move on with your life, go back to work full time and be healthy, instantly.

Instead, you stumble around and wonder what a new normal is. You might be depressed, anxious, and still clinging to the cancer roller coaster at every ache and pain. Slowly you stabilize, still gasping from the whirlwind you went through for the past year.

You have lost some friends or even family who went running from the word cancer, in case it was contagious, but you gained some new ones. You got some new clothes, your work schedule changed, you bought yourself a present for surviving cancer treatment (I got myself a new watch), and you are still trying to lose the same damn 20 lbs (10 from before cancer and 10 from chemo).

And what if this is the new normal? What if its harder to find because you didn't evolve slowly but were yanked from your life to cancerland and then thrown back to your life? You have to pick away at the layers of changes to see what you like and don't like and try to get a handle on everything. Some of the changes that happened may not be the ones we want to keep but we have to learn to accept them.

We can never go back to the way we were, no matter how much we try. Who was it that wrote 'you can't go home again'? Its true, especially with cancer, we can't go home again, no matter how much we try.

What are we whining about?

Today is St Patrick's Day. Although I have some Irish heritage somewhere, we will have corned beef for dinner tonight appropriately. But more importantly there are three more days until Spring. We have had a bit of snow here. This graph shows the snow in Boston. But since we are a few miles west/inland, we probably got a bit more than there.

Around here we are all whining about the snow because we are so sick of it. The most amazing part is how much has already melted and how much has not yet melted. I think we have lost a few shrubs here. I only care about the ones I planted, not the ones which came with the house. Maybe now I can get rid of these.

But now all I can do is watch and wait. I am physically unable do any plant rescues because all that does is make my body hurt. I tried to dig out some of the box wood by the front door. It is all bent over to the ground and clearly some branches are broken. Maybe it will be toast and I can grow roses instead (that would make my day).

Yesterday we had enough melting so I can see the ground near the driveway but nothing green growing yet. We should have crocuses and daffodils by now.

Would you expect to get good medical advice in a tweet?

I read this article, The Doctor Will Tweet You Now, on Curetoday.com and am not sure how I feel about it. I think its great that there are doctors on Twitter and other social media and sharing their knowledge and helping others. However, they cannot provide medical advice for you as the article states.

The focus of the article is that Dr. Attai, and two other doctors, who run an online support group on twitter #BSCM on Monday nights.Well that's great. How would it help me? Provide information on what I should ask my doctor and answer general treatment questions. I have been in support groups where a doctor's input would be appreciated from time to time.

However I would never expect to be diagnosed and treated by a doctor through a tweet. Even if I tweeted a video link to show what I was talking about, I would not accept their comments as more than advice on what to ask my doctor.

So why do they think its so great that they tweet etc? I'm just not sure. I am having a real problem with this and doubt I would ever use it.

A lovely few days

Its been a lovely few days. Wednesday I was in so much pain from my back, arm, and a headache I left work early. Thursday I had an 'oh so fun' back procedure and my headache hung around. Friday I didn't do much and my back hurt in recovery from the procedure and I still had a headache. Friday night I spent some quality time in the bathroom. Saturday I didn't do much of anything.

In the meantime all sorts of thoughts crossed my mind as only someone with multiple ailments can have:

• Could my headache be the first signs of a brain tumor?
• Why did I throw up? Was it something I ate? Was it a reaction to my medications? Did I develop an allergy to another medication (not for the first time)?
• Could my headache be the first signs of a brain tumor?
• When will I feel better? I have to go to work on Monday.

Then I woke up this morning and felt fine! What the difference a day can make. So today I get to go to a brunch with a bunch of friends I never get to see. But then I promise to come home and go to bed early.

Here come the biosimilars

The FDA has just approved the first biosimilar for the US. These are drugs which are similar but not identical to the original patented drug. Amgen defines them as:

"Unlike generic medicines where the active ingredients are identical, biosimilars are similar to but not identical copies of the originator biologic. They are similar, but not the same. Biologics made by different manufacturers differ from the original product and from each other."

The first FDA approved biosimilar is Zarzio, which is a biosimilar for Neupogen - the lovely injection many of us got after each chemo infusion to help ward off infections. But not to be confused with Neulasta. This first drug could add up to $6 billion over the next ten years.

"Zarzio’s introduction — primarily as a competitor to the Amgen blockbuster Neupogen — marks a milestone, and could add up to savings of $6 billion over the next 10 years, according to drug benefit manager Express Scripts. But that’s just the start — Express Scripts estimates that if 11 other biosimilars pass muster with the FDA, they would shave $250 billion off spending on comparable existing biotech drugs over that same period."

So as big pharma comes up with these fancy new drugs at sky high prices, upwards of $100,000 per patient per year, which overwhelm the insurance companies, the new biosimilars can cut the market prices by 40-50%, which is not as much as the 70-80% savings with a generic.

I realize that biosimilars and generics are not for everyone but a little competition is good for the industry. Insurance companies can use the availability of a biosimilar to negotiate lower pricing for the original drug and shift many patients to the biosimilar to help with substantial savings.

I welcome these changes as a significant step to help contain medical costs.

Lymphedema sleeve and all

Yesterday I had a (not so fun) back procedure. As my arm has been acting up, I wore my lymphedema sleeve on my left arm. I am going to the lymphedema clinic in another week or so and will keep wearing my sleeve.

But I digress. I got there and got checked in and changed into a lovely hospital gown and robe - they make them ugly so people don't steal them. The nurse took my vitals after getting me settled in a big comfy chair. Even though I was wearing my sleeve she asked if she could use my left arm for blood pressure. Really? But she did put the IV into my right arm without questions

Then when I got positioned on the table with my back (and the bright red underwear I wore on purpose) exposed for the procedure, they needed to hook up heart electrodes on my chest as well as oxygen in my nose, and blood pressure, O2 sensor, and start the IV on my left arm. A student nurse asked if all three could be done on one arm and the other nurse said yes.

The procedure went well. It should help with my back issues. It was painful to have but it should really be beneficial once it heals up. Before it, I could barely stand for ten minutes before my back started to hurt. This morning, I slept late and it didn't hurt at all until I walked downstairs to feed the cat.

I have a love-hate relationship with my sleeves. I really dislike wearing them all the time. It will start to annoy me when either the little silicone disks cause a rash on my arm or I start to get a tan line on my wrist. (Both have happened in the past.) In addition, its a reminder about cancer - sort of like wearing your heart on your sleeve, you wear a sleeve for your cancer.

Not so much for me

So Apple and UCLA's Jonsson Comprehensive Cancer Center, Penn Medicine, Dana-Farber Cancer Institute and Sage Bionetworks have developed an app to help improve the quality of life for women after breast cancer. I'm not going to run out and buy an iPhone anytime soon so its not going to help me.

I welcome the idea of collecting data on mobile technology so those of us with chemo brain don't have to remember something until we get home to log it into the computer. But I am not happy that it is only available on one platform, which will instantly create bias in the data collected.

I honestly believe that the medical facilities involved are concerned about the quality of life for breast cancer patients. I do not believe Apple is as concerned, they only want to sell more phones. And if you believe the statistics, iPhone users are more likely to be highly educated and rich. so what about all of us Android and Windows users? We aren't cool enough to be involved?

So the bias comes from the fact that the educated and better off breast cancer patients will have more access to other modalities to care for themselves after treatment. They are more likely to be able to afford acupuncture, therapists, and more.

This advance to use mobile technology will not be equal and unbiased if it is available on Android and Windows platforms.

Overdiagnosed and overtested

You are diagnosed with cancer after some tests. Then you are sent for more tests to figure out the best course of treatment. You feel tested to death - too many injections, IVs, scans, and time in waiting rooms. Finally you get a course of treatment. Did you really need all those tests?

New diagnostic tests keep being developed to help determine the best course of treatment for a patient. But how much of their results are really helping doctors and patients? A recent study confirmed that the doctors see the tests as confirmation of their recommendations. And that patients do not really understand the results.

I have been on numerous breast cancer boards where women question the significance of the results of their Oncotype DX and other tests. "My results were this and my doctor said this, what should I do?"

"Fourteen oncologists were surveyed at teaching and community hospitals in Toronto. Most said the tests enhanced their confidence in deciding whether to recommend chemotherapy in cases where the best course of action was unclear to both the physician and the patient - especially when they were truly undecided. While most said the test supported their assessment rather than altering their practice, one oncologist described the test as a "tie-breaker."

But they raised concerns about overuse and inappropriate use of the test; over-reliance on the test relative to other, more established pathological indicators; the fact that testing takes places in only one lab in California; aggressive marketing of the test and its high cost, about $4,000.

Dr. Bombard said these reservations were consistent with general concerns about overuse of laboratory testing, which has increased rapidly, contributing to the financial strain on health care systems. Estimates suggest that 10 to 50 per cent of lab tests in Canada might be unnecessary and one-third of U.S. health-care spending results from overuse or misuse of tests, procedures and therapies."

This last sentence sums it up for me. Do we need all these damn tests? Just because we can test for something do we really need to?

Diagnosis and overdiagnosis

What is over-diagnosis? My non-medical opinion is that over-diagnosis happens when a thingy is found that isn't a significant thingy and could have been left alone. A more medical definition and discussion can be found in this study which looked at a bunch of other studies for signs of bias and overdiagnosis. (Yes a study about studies.)

"Overdiagnosis, the detection and diagnosis of a condition that would not go on to cause symptoms or death in the patient’s lifetime, is an inevitable harm of screening. Overdiagnosis in cancer screening can result from non-progression of the tumor or from competing mortality due to other patient conditions (that is, other conditions that would lead to the patient’s death before the cancer would have caused symptoms). The consequences of overdiagnosis include unnecessary labeling of people with a lifelong diagnosis as well as unneeded treatments and surveillance that cause physical and psychosocial harm. A patient who is overdiagnosed cannot benefit from the diagnosis or treatment but can only be harmed."

Re-read that last line. 'A patient who is overdiagnosed cannot benefit from the diagnosis or treatment but can only be harmed.' Isn't there a line in the Hippocratic oath saying 'do no harm'? This is the root of the problem.

Medical technology has advanced to the point where it detects small anomalies which are often too quickly diagnosed as 'bad things' when they could just be weird thingies that can be left alone. All these screenings we have contribute to overdiagnosis. How many people have had polyps found in colonoscopies which are nothing but force the patient into more frequent tests? Or a woman who is diagnosed with DCIS - will it ever become symptomatic? We don't know. Or do you know anyone who, after going through a cancer diagnosis and treatment, was later determined to be at a lower stage and didn't need as much treatment as they had had?

To me, this is the crux of the problem. We see too quick to say 'its cancer, get rid of it' when we don't always know. We have lots of tests to find cancer but do we have enough tests to determine if a cancer will be symptomatic? Is enough done before treatment starts to learn as much about the cancer to make sure the treatment matches the correct diagnosis?

I strongly feel this should be an area of significant research. We know so much about cancer now and spend a billions each year to treat cancer and find a cure. Shouldn't we back up and do more research on trying to distinguish which cancers are going to progress and which are not?

Diagnosis and Being A Patient

I am going to write a series of posts on diagnosis, over diagnosis, and then over treatment. This is the first one. I plan to write the others soon but make no promises on how soon.

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When you go to the doctor with a symptom, to my non-medical school educated brain, they start by asking a few questions and then proceeding with weeding out the most frequent and most possible and eventually get to a diagnosis.

A sore throat - is it from coughing, allergies, strep, acid reflux, several other options, and finally possible cancer? Probably not cancer so we shouldn't think it is at first even with a history of cancer. Cancer people get the same ailments as other people.  It takes a bit to get through the process of elimination to get from the first to last. And a medical professional will give advice on what to do to get better.And we need to do our part in cooperating and not demanding extra tests and treatments.

Right now, for example, we have problems with antibiotic resistant germs because antibiotics were over-prescribed. As patients we need to do our part and not demand medications and tests we do not need. A sore throat may not be strep and can be determined as that through a visual exam. Antibiotics do not help viruses so don't request them. We need to believe our medical professionals when they tell us what is wrong with us and follow their instructions if we hope to get better quickly.

If we don't follow their instructions, we won't get better. Here's an example: Someone I know had a sore upper arm that wouldn't go away for months. He went to the doctor for his annual physical and the doctor said some kind of strain, go to PT. The next year he went back to the doctor for his next physical and the doctor asked about his arm, which still hurt. Then he finally did agree to go to PT and his arm stopped hurting.

But if we do follow their instructions and do not get better that becomes another story. This is when the diagnosis process can take more investigation and lead to a more serious diagnosis.

In addition, we need to be mindful of medical expenses and costs - just because we do not pay for something because it is covered by our insurance, the cost is still felt - maybe by higher premiums later on. If a doctor tells us what is wrong, we usually do not need to question them. There is no need to doubt them, unless we have a reason.

As patients, we need to work with, not against, our medical team. Take their advice and work with it. Accept their diagnosis and go with their treatment. Unless there has been a problem in the past, in which case that's another story.

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So to my non-medical school brain, this is the basics of diagnosis. I will write more on over-diagnosis soon.

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.

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:

• 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) 

The original treatment for the last sixty years called for radioactive iodine to dissolve any remaining cancer after surgery. This leaves a patient requiring lifelong treatment and monitoring.

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.

That niggling little thought

I love watching 'Chasing Life'. It brings up all the issues that us cancer people have to cope with and its about young people with cancer. I can relate, I just didn't have the support group they have.

This week's show was about that recurrence thing. Where April deals with recurrence issues. She gets a bloody nose and then a bruise and then the anxiety and the depression when a friend gets a recurrence. And there's more that I wont share so you go watch it. (Great show.)

But if you have ever been diagnosed cancer you can relate to that recurrence thing. The 'what if' or, actually the 'when', depending on your cancer's stage. Living with cancer means learning to cope with the niggling little thought of recurrence.

Face it, that is what we are all doing. We are all trying to manage that niggling little thought so we can live our lives as best we can. And that's all we can do.

All I want is a day off

I need a day off. From life that is. I want a day where I feel good, I can skip all medications, go to the beach (or skiing - I'll have to think about that) and then go out to dinner and dancing. Anyone want to come with me? No ailments, aches, or pains allowed. We will all feel young and healthy. 

Its been a long week. And its only Thursday. I am exhausted. I have been working too much. You may laugh but I have already worked about 18 hours this week. I usually max out at 15 hours. I was going to go back to work today after I took the car to the dealer for its annual check  up. (I am sure the car is healthier than me.)

I didn't sleep well (again) last night. Instead of work, I am in comfy clothes and went to the grocery store after the car appointment. Now I need a nap.

I am absolutely exhausted. I need to rest up for my day off.

How did that happen?

One day you were admiring how your new bathing suit or skinny jeans fit and the next thing you know, cellulite and flab are taking over. How did that happen? Maybe cancer treatment?

First you start being lazy as you go through surgeries and can't get as much exercise as you did before as your incisions heal. Next you start chemo and enjoy the side effects of steroids and chemo drugs. Then, whammo, you look different, bloated, round face, and bald.

That was me. Some where a long there I stopped looking at myself in the mirror to prevent seeing further changes. That has worked for several years.

Then yesterday other people blogged about health and self image - Nancy at Nancy's Point and Lisa at Damsel in a Dress. Nancy's blog is about exercises to bolster your self image - start by kicking everyone out of the house, locking yourself in a room, and looking at your naked body in the mirror for 30 seconds, repeat daily so you can adapt to the way you look  now and not your imagined perfect size 6. I am not ready for that step. I'll start thinking about it tomorrow. I think its something I do need to work on.

Lisa reflects on the issue of steroids causing weight gain which causes many other issues. And its not shallow or vain to stress about that. She has RA and is in her 20s and coping as best she can.

So the question becomes for me does being sick kill off my self-image?  In my case yes. I think. Or maybe I need to refine it that to say the medications killed off my self image. First steroids gave me a moon face. Then a couple of medications caused an extra ten pounds here and there. A few more surgeries too. Then the aches and pains and fatigue set in so that I don't participate in as many activities as before. So I sit around on my butt more of the time.

And somewhere along that time frame I went from a size 8 to a size 12 (or so) and I never look at myself in the mirror or in pictures. I have not yet adapted. I promise I will work on this and maybe even someday take a peek at myself in the mirror.

Just watch me!

My co-workers wonder why I go to the gym - they are not gym people - as I have so many ailments. But I tell them that I am much better off because I go three times each week, and was a regular gym person before RA and fibromyalgia. I think this is very true - my exercise habits put me in better shape physically before the onset of both of these.

Now when I have a training session with a physical therapist, we talk about my goals of keeping flexibility, balance, and range of motion. Face it, I am old enough that I need to think about these. I switched to one of the physical therapists last year from one of the trainers (there is a difference) because I wanted more direction with RA. The PT was somewhat wowed by my ailment list and the fact that I did come in and work out like a semi-normal person. He had no idea I had so many issues before then.

However the problem with my working out is sometimes my three times a week workout is compromised by my body revolting - with pain. I have a chart where I track my workouts. I put in little notes as well. Things like 'foot pain', 'back pains', or, my other favorite, 'fatigue', cover my chart by the time its full. Some days I start my workout with a pain pill.

The rule of thumb at the gym is 'if it hurts, stop doing it'. But if I followed that rule, I would never get a full work out in. But I make an effort to get there and do as much as I can.

A cheap little pill

I have often blogged about the high prices of medications because I think some of them are just astronomical and are partly priced based on what their manufacturers think is something along the line of the value to patients. If a pill costs $100,000 and will make you get a break from your ailment, would you be willing to pay it (with help from your insurance company)?

But to see for example of how price impacts patient's compliance with the doctor's advice, look at this study. Basically it found that household net worth had a large impact on women continuing their post breast cancer hormonal therapy - aromatase inhibitors.

Its a relatively cheap little pill. I was on tamoxifen and now on letrozole (femara) which costs me a few dollars (less than $5) for a 90 day supply now that a generic is available. It has shown to greatly reduce recurrence rates for breast cancer. Previous studies suggested a five year course after treatment ends but now new studies show that ten years or longer are even better. Thus, I will be on it for a few more years, at least.

Some parts of me are amazed that a cheap little pill could be helping prevent a cancer recurrence. Other parts of me think of it as just a cheap little pill and maybe I could stop it so I had one less pill to take each day. My oncologist doesn't want me to be off it for more than a couple days at any time. If there is a gap in my supply because I forgot a refill, she will be happy to do what she can to make sure I have a supply.

So back to the study. Apparently 10% of women stop taking their aromatase inhibitors each year and 24% never start them or stop them overall. Even though they can reduce your risk of recurrence by 50%. So there is  a potentially big impact for those who take them. The study showed that lower net worth households (this is all assets - house, stocks, cars, etc - less debt (mortgage, loans, credit cards) have a higher rate of discontinuing their hormonal therapy. It was not influenced by income or race as usually reviewed.

If patients have enough issues in complying with their doctor's advice for an inexpensive little pill that has high impact, what about the affordability of these higher priced medications?

The killer bacteria

There is killer bacteria at your doctor's office, in the hospital scope, in the air, on the ground, and on the nine things in your house dirtier than a toilet seat. All those unvaccinated people are going to spread measles and other diseases. People with compromised immune systems should take extra precautions to avoid these bacteria. Blah, blah, blah.

And how am I supposed to avoid doctor's offices anyway? I am a regular visitor. There has been so much new recently on all these topics. And I couldn't care less.

I am the poster child for immune system issues, bad health, and all that. And I take zero precautions. Other than being normal and avoiding sneezing, coughing people.

Isn't there anything else on the news anyway? Where are we in terms of a cure for cancer, rheumatoid arthritis, and fibromyalgia? And lymphedema if we are on the subject of cures.

The killer bacteria are out there but so are many other ailments that warrant news, research, and cures.