Health care reform

Of course I need to offer my opinion on the health care reform act. Now that we can stop arguing about whether its legal or not - or you can feel free to disagree with the Supreme Court but I just want the arguments to stop that I can hear.  Whatever your opinion about the law, its a law and we have to live with it until someone comes along who wants to have it retracted or changed.

I'm not calling it perfect by any stretch but I do like it because it represents change to the health care system. The health care system is broken. We all know horror stories about people who couldn't get care, or went bankrupt trying to get care, or lost their insurance for some reason and then got very ill.

Insurance companies are making health care decisions based on their statistics instead of letting doctors make decisions based on what is needed for the patient. People use emergency rooms instead of primary care doctors and often wait until they are very sick to get treatment. If they had insurance they might have gotten wellness care where the ailment could be prevented or caught early so medical bills will be less.

People may not realize the importance of health insurance until they get a nasty ailment, have a car accident, or need surgery. Then they find out they really need it.

So unless someone else has a bright idea on how to fix the health care system now that we will all have insurance we are stuck with this plan for now.

So how was my day? Lovely, I think.

I went into Boston for a seminar on grant research yesterday morning. I memorized the address but since I have chemo brain I thought I would write it down on a little piece of paper as well. But didn't bring the phone number because my phone only works when plugged in - hence its lost its mobility.

I left about 15 minutes later than I wanted because I got side tracked on the evil internet. Traffic was backed up for a good ten minutes to get into the parking garage. So I used that time to look at a map to remind myself of where I was going downtown.

I ran to get the train and when we got downtown I walked very fast to get to the seminar. It wasn't there. There wasn't a #55. There was a 47 and a 63 with a parking lot in between but no 55. After looking around and realizing the seminar would not be held at the parking lot, I looked at my little piece of paper and realized I was on the wrong street.

So I rushed to the seminar again, hoping I wouldn't be late, and when I got there, it was very empty - because it didn't start for another 30 minutes. So I took a seat in a crappy chair and got caught up on some reading. My back did not like the crappy chair and started letting me know very quickly. the chair actually looked pretty comfortable but it didn't have the support my needy back requires. I quickly opted for the pain pill option in hopes that I could suck it up and last through the day.

So I sat in the crappy chair for my extra  half hour of stupidity and through 2 1/2 hour seminar and my back really hurt at the end. Then I did research in the library for another 1 1/2 hours on another crappy chair. My back was not happy. Then I took the subway back to my car and it sat underground for a while on a slant which made my back hurt more.

Then I went to the AT&T service center to remobilize my mobile phone where they told me it would be 30-45 minutes before they could even look at my phone. I took a seat in another crappy chair. After 30 minutes of 'patiently' waiting, they called me. 1.5 hours later I finally got a new phone during which time I told them I was losing my patience as everyone else was gone long before me and most  repairs took about 10 minutes. I took another pain pill somewhere in there but my back really hurts.

I made a quick stop at the store to get dinner because I wanted to make a nice one for my husband who is having a tooth pulled this morning and will be on soft food for a while. I got home after 5. I then tried my handyman skills to figure out why the dishwasher won't drain. Leaning over into the dishwasher was not good for my back either. I needed ice and alcohol to recover. We'll call a repair person tomorrow.

Lunch? You will note there was no mention of eating anywhere during my day. I had some cheese and crackers when I got home to round out the two pain pills I had earlier - does that count?

A bit more about thyroid cancer

If you have breast cancer or one of the 'popular' cancers, there are boatloads of information. Actually there are aircraft carriers full of information on the cancer. Enough information to go to the moon and back a million times.

But if you have an obscure cancer, no one knows about it. Thyroid cancer used to be nice and obscure - 10,000 cases annually. Now it is getting 'popular' and there are expected to be 50,000 cases a year. This means I can actually find information about it that is not in 'medical-speak' or the dreaded 'scientist-speak'.

So here is a nice little article explaining the thyroid cancer. The author of the study (yes another study, because we needed it), says:
“The excellent survival rates of almost all of our patients are predominantly due to the multidisciplinary optimization of their diagnostic and therapeutic management, including advanced molecular imaging techniques, highly sensitive laboratory assays, excellent endocrine surgery, individualized high-dose radioiodine therapy and lifelong medical surveillance.”

Please note the last three words - lifelong medical surveillance. Yep, it has a sneaky habit of coming back decades later. Isn't that nice. With most cancers, five years means the chances of recurrence are lower. Not so with thyroid cancer. It likes to return much later. How fun.

Blah, blah, exercise more, blah, blah

Right up therer with common medical advice - eat right, stand up straight, floss - is get some exercise. When have they ever told us not to exercise? Exercise is good for all sorts of things - we know this. This is why we had gym class in school and were sent out side to play and went for walks all the time.

There are some downsides to exercise - blisters from badly fitting or the wrong shoes. Or, muscle aches and pains for the days when you might 'over do' things by a tiny bit. Or stretching injuries if you perchance are in the slightly wrong position and end up with a very painful knee (not that I would know this by experience or anything).

But there is another new benefit to exercise - reducing your breast cancer risk. Who would have thought? Duh. Exercise is known to be good for us. But, here's the real story:

"Moderate exercise tied to lower breast cancer risk 

...Women who exercise moderately may be less likely than their inactive peers to develop breast cancer after menopause, a study published Monday suggests.

And it did not take a vigorous workout; regular exercise at any intensity level was linked to a lower breast cancer risk, the researchers say.

Still, there are reasons to believe it can, said lead researcher Lauren McCullough, of the University of North Carolina, Chapel Hill.

One possible way is indirectly, by reducing body fat, McCullough said in an interview. Excess body fat is related to higher levels of certain hormones, including estrogen, as well as substances known as growth factors, which can feed tumor development.

Researchers found that of more than 3,000 women with and without breast cancer, those who'd exercised during their childbearing years were less likely to develop the cancer after menopause.

The findings, reported in the journal Cancer, add to a number of past studies tying regular exercise to lower breast cancer odds.

But like those past studies, this latest one can only point to a correlation: It does not prove that exercise, itself, is what cut women's breast cancer risk.

But exercise might also have direct effects, McCullough said -- by boosting the immune system or the body's ability to clear cell-damaging "free radicals."

That is all speculation for now.

But, McCullough said, the findings do support the general health recommendation that adults stay active throughout their lives."

So what does this tell us? Speculation is telling the researchers that exercise can lower your breast cancer risk. So before you adopt a mighty exercise plan to reduce your risk of breast cancer, just remember that it is speculation that is driving this.

This also reminds that all these studies that tell us things like eating spinach is good for us - some is based on science and some is based on speculation because there appears to be a correlation. And it always needs more research to prove anything.

The real reason I fired my primary care doctor

She never really acknowledged my breast cancer diagnosis. Five years later this still irks me. In April 2007, I had my annual physical and she made sure I was scheduled for a mammogram. Which was the bad one. After my diagnosis, I stopped by her office at the hospital while I was there for one of my billion other appointments and left her a note that I had been diagnosed with breast cancer. I never heard from her.

In the next couple of years I never even saw her, I had my physicals with the nurse practitioner. I gave up and found a new primary care. If you are a doctor and you have a patient diagnosed with cancer, shouldn't you care enough to see them?

I was talking to a friend yesterday who is in chemo for a second cancer diagnosis. She told me she fell a couple of weeks ago and ended up in the emergency room. Her primary care insisted she come back in and see her to make sure she is doing okay. I think that is how doctors should be.

I had my annual physical a few weeks ago, my second one with her, and I was pleasantly surprised at how she knew what was going on with me, was glad she hadn't seen me for four months - which means I had not required medical care for that brief period of time (even if I had seen numerous other doctors). She was also happy to talk to my oncologist about a possible prescription. She even seemed like she cares.

Warning - Smart phones are dangerous

"People are risking their health by working on smartphones, tablets and laptops after they have left the office, according to the Chartered Society of Physiotherapy."

No, they don't (think they) they cause brain tumors. Its much much worse! They hurt their..... [insert drum roll]... posture! I first read this article a couple of days ago and still find it intriguing in the sense of overhype of stupid bits of news.

"It says people have become "screen slaves" and are often working while commuting or after they get home.

The society said poor posture in these environments could lead to back and neck pain."

Here's the advice:

"Unions said people needed to learn to switch off their devices."

That's it. Use the off switch. Tell your boss to take a hike and stop bugging you after hours - unless you really have a critical profession and the world might come to an end if you didn't check your email or voice mail or catch the latest Kardashian gossip on Twitter.

The chairwoman of the Chartered Society of Physiotherapy, Dr Helena Johnson, said the findings were of "huge concern".

She said: "While doing a bit of extra work at home may seem like a good short-term fix, if it becomes a regular part of your evening routine then it can lead to problems such as back and neck pain, as well as stress-related illness. 

"This is especially the case if you're using hand-held devices and not thinking about your posture. Talk to your employer if you are feeling under pressure."

The general secretary of the Trades Union Congress, Brendan Barber, said: "Excessive work levels are not good for anyone. Overworked employees are not only unlikely to be performing well at work, the stress an unmanageable workload causes is also likely to be making them ill.

"By the time someone is so overloaded they constantly feel the need to put in extra hours every night of the week at home, things have clearly got out of hand.

"Individuals who find themselves unable to leave their work in the office should talk to their managers and learn to switch off their smartphones."

This is a real article from BBC. I personally find the article a prime example of the decay of modern society (did I really use that phrase?) Well anyway, here's my thoughts on why this is so bad.

1. Overuse of hype. Good posture is a good thing and we all knew that. Our parents always said 'stand up straight'. But I think the problem is a bit overinflated here. Its not a medical disaster.

2. I don't call it a medical issue anyway. Its a management issue. Unless your job requires it and you knew it signing up, you should not be 'on call' in the evenings and on weekends. Its time management for you and management for your boss.

3. I question how newsworthy this is anyway. I mean there's a lot more going in the world - SJC ruling on healthcare, Syria and Turkey, research on the cure for cancer.

Posture is less of a concern to me than cancer. Sorry. Since my smart phone isn't going to kill me off anytime soon and my back already hurts, posture is low on my priority list.

Mammograms and statistics

The AMA has said (finally) that yearly mammograms should start at age 40. Back in 2009, some group of rocket scientists recommended they start at age 50 for women with normal risk factors. That started a big 'To-Do' and everyone (and their brother) had an opinion. They have joined the ranks of the American College of Obstetricians and Gynecologists; the American College of Radiology; the American Cancer Society; the National Cancer Institute; and the National Comprehensive Cancer Network who also say 40, unlike the rocket scientists.

So maybe the AMA is a bit slow here but its nice to see them on the bandwagon with everyone else promoting something that's common sense.

Especially since it has been learned that women who work night shifts are between 30 and 40% more likely to get breast cancer. This last set of statistics proves two things:

1. Lots of things cause breast cancer so we all have a higher risk and therefore all women really need the mammograms.
2. It is possible to reach analysis paralysis with breast cancer statistics, just like any other kind of statistics.

That's enough for today. I'm going to the beach.

Finally someone sensible when faced with cancer

I have always been overwhelmed by the stupidity of normal people when they hear the word cancer when referring to other people. They either turn into loud mouth idiots spouting uneducated and therefore unwanted advice, or they run for the hills and pretend the person with cancer no longer exists. I'm not saying everyone does this but an amazingly large number do. I'm not sure which is worse - the ones who run for the hills or the ones who give the bad advice.

But now we have an example of a person who is sensible and sensitive enough to ask 'what should I do to help my friend who is faced with cancer' and even wrote in to Annie's Mailbox. Basically the answer comes back as:

- treat them as you normally would
- expect a little more reticence than normal
- don't offer advice and try not to be patronizing 'I know how you must feel...'

And I like this reply. People with cancer are exactly that - PEOPLE with an ailment. Do you treat a friend with the flu any differently than one with cancer? You shouldn't.

The best of intentions

I had the best of intentions on writing a blog post this morning. But then I got side tracked. I watered the flowers. I fed the cat (again). I was going to write about the negative comment I got on yesterday's post. Then I decided to go for my fasting blood test before acupuncture this morning. Then I realized I forgot. Chemo brain gets the blame here.

So have a lovely summer day wherever you are and I'll be more profound tomorrow.

The power of health insurance

If you wondered what life was like without health insurance? Here's a little statistic: 26,000 Americans die prematurely each year due to lack of health insurance. They didn't get preventive care or they didn't get needed care. Many of these are caused by high premiums or denial of coverage.

As we await the Supreme Court's decision on healthcare reform, what do we do for those people who die prematurely if the act is struck down, all or in part? I am not saying the healthcare act as proposed is right or wrong, I just think the current system is broken.

I know you can blame people like me with a million little bitty ailments who are driving up health care costs with all my medical adventures. But I do feel everyone should be able to get health insurance if they want it. Call me optimistic but it would be nice.

I'm feeling very healthy these days

In fact I'm feeling as healthy as a horse on the way to the glue factory. It seems every ailment I have had in recent years (except cancer) has come back to haunt me. You name it - sprained ankle - check, sore knee - check, tennis elbow - check, bursitis hip - check, sore back - check, lymphedema - check. I feel awesome - ouch, owie, yow, every time I move.

I had my annual physical last week and the consensus is I'm not going to die of any known cause anytime soon. But I have to wear my wrist brace day and night for a month to see if my tennis elbow/possible carpal tunnel will quiet down. I also had an ankle x-ray to see if I really or only slightly redamaged my ankle. I need to talk to my pain doctor about more injections for my bursitis. And I need a fasting blood test in the next couple of weeks.

I'm feeling so healthy that with record high temperatures forecasted for today, I am going hiking with some friends this morning. How smart is that?

Hospital advertising

I have wondered why hospitals seem to spend more and more on advertising. Radio, tv, bill boards - they seem to be increasing more and more. I haven't figured this out until light dawned on me - some marketing person or advertising executive convinced them they needed to advertise.

Let's take a poll here - who chooses their medical care based on a billboard or tv ad? One vote here for no. I put a little bit more research into it than that. I might ask my doctor, ask friends and family, consider how long the drive would be (because of my inherent laziness), and maybe even go look at their websites.

This morning while watching the news, an ad came on for some hospital explaining breast tomography and how good it was at detecting tumors. So therefore you should go there for breast tomography. But they forgot the important point of why tomography - is it instead of mammograms? Or if you have a 'bad' mammogram? It didn't entice me to go there at all.

The news was just interrupted by a commercial advertising another hospital's cancer center. Every hospital seems to be advertising their cancer center more and more. Why, do they expect us all to be diagnosed and come running to them for treatment because we saw them on TV or on a billboard? Cancer center's seem to be the latest fad in hospital advertising. Everyone is getting one.  So it becomes an unending game of one-upmanship.

I am  a marketing person so I understand there can be many purposes to advertising - image enhancement or promotion for a sale or event. If they are focusing on enhancing their image, I'm not sure that tv ads are a good way to spend the money. TV ads are expensive to start - you need a budget that is a upper five figures to start. Maybe they could spend some of that money on patient care instead of advertising.

Respect

Here's an interesting theory, respect in the medical profession. And being respectful of others. Think of it this way. Happy patients are one's who are treated with respect by workers who are treated with respect by management who treats them with respect.

A patient who is happy is one who is not kept waiting, who is involved in decisions, is spoken to nicely by workers who are not arrogant or overtired. Workers who are happy are not overworked or treated badly by management.They are also more inclined to follow standard protocols such as washing hands between patients. And they are less likely to be injured on the job.

That is one part of it and here's another. Doctors need to treat patients and other medical staff with respect. They can't be allowed arrogance that the word is superior to that of others. However doctors are not taught to be team players but to function individually and make impactful decisions.

I did not come up with this concept but I am very impressed by it. This is take from an article on Dr Lucien Leape. I agree with a lot of what he says.

I also agree with the concept of respect in the rest of our lives. Just think if everyone was a bit more respectful overall, we would all be a bit happier.

Life with cancer

Here's some food for thought. Most thyroid cancer patients should expect the same life expectancy as the rest of the population. Now they tell us. I could have used that little tidbit 30 years ago thank you. It would have been appreciated. But with thyroid cancer comes a lifetime of vigilance as it has been known to recur decades later and you have life without a thyroid which comes with its own little ups and downs.

Another little tidbit is that five year survival rates are 90% for women with early stage breast cancer. A nice little factoid to see but what annoys me is that the Komen foundation for the cure is trying to take credit for it. I received an email from them (asking for money again) that said:

"Thanks to donations from others like you, the research advances funded by Susan G. Komen for the Cure® have helped extend the 5-year breast cancer survival rate to 90%!"

To compare this is what Avon said in their email to me:

"2012 marks the 20-year milestone of the Avon Breast Cancer Crusade and the 10th birthday of the Avon Walk for Breast Cancer event series. Over the past 20 years, we've made great progress globally, funding breast cancer research and improving access to care."

I don't know. The Komen email just annoys me with their wording. 

But anyway, I am happy to hear the survival rates have greatly increased and my life expectancy is not impacted by thyroid cancer. 

ASCO recap

The ASCO conference wrapped up this week. I did blog about it a week or so ago and now Cure Magazine has a special issue out on the latest from it. Its full of advances which is exciting to read. You should go read them yourself ifyou are interested but basically I can sum it up as 'Progress' with a capital P.

Yes there is a lot of research going on out there (because we need lots of research studies) and sometimes it seems like advances are announced but nothing really changes because 'more research is needed' or whatever reason. I think when you see a lot of research together, its different. The impact is much more significant. We need that.

Let's rule the world

As of 2012, there are 13.5 million Americans with a history of cancer. That number is now expected to grow to 18 million by 2022. This is seen as a potential problem due to our health problems as a result of cancer treatment - chemo brain (a/k/a cognitive deficit), blood disorders, cardiovascular problems, muscle pain - and the emotional issues caused by the stress of fear of a recurrence.

I don't see this as a problem. I see it as progress. Fewer of us are dying. People who are alive are not a problem in any way, shape or form. (Unless they are an annoying sibling.)

Anyway, I think we should rule the world. Why not? Just because we had cancer doesn't mean we are incompetent.

We would change health care to eliminate all pre-existing condition issues. We would create laws that allow paid time off while in treatment. We would make discrimination against cancer people against the law - you know those people who think you are contagious and run away at the sight of you? We could have beauty contests to show off surgical scars. We could make special parking spots for cancer people  in treatment so we could get the good spots, next to the handicapped ones. Once you get cancer, you get free medical care for life. (Ooh. I like that one.)

This could be good. We could start the Cancer Party to run against the Democrats, Republicans, Green Party, Libertarians, and Tea Party. Our focus could be cancer prevention, care and research. Cancer research would be fully funded.

But wait, we have chemo brain, could we remember anything long enough to rule the world?

Talking back to your doctor

I can do that. Ask anyone who knows me, I can talk back to just about anyone on anything. And tomorrow is my annual physical so I found this article about talking back to your doctor very a propos (how's that for a fancy word this early in the morning).

I also usually (try to) know when to keep my mouth shut but when it comes to my doctor I do like to make my opinion known. She does know prefer no surgeries, no prescriptions, and no medical 'adventures' unless really needed.

A few months back medical societies came out with all these recommendations on unnecessary tests and procedures - decisions which I applaud. However it turns out that notmuch has or is going to change:

'Another reason doctors I interviewed told me is that the medical associations' recommendations have no legal standing. These doctors said they can be sued for not screening properly if their patient has a heart attack or some other untoward event. And sheer inertia is also a powerful factor in preventing reform; the test is performed because "this is what we have been doing for years."'

This means it is up to the individual patient to speak up and question why tests and procedures are ordered. I know why I get an annual chest x-ray - there's a thingy that has been well watched in my lungs for more than 30 years. It gets an annual photograph. I also get annual blood tests for cholesterol, thyroid, and all that other stuff our blood tells us. If the doctor wants anything else, she needs to have a good reason.

So I will go armed with my list and expectations and be ready to talk back.

I'm making a list...

And checking it twice. And I'm not Christmas shopping. I'm making the list of questions to ask my PCP at my annual physical on Friday.

They (the proverbial 'they') tell us a good patient brings a list of questions with them to their doctor appointments. I do this - I usually write them down but sometimes I just think through what I want to ask. I try to be a good patient but know I am not perfect.

While in treatment and for a few years after I used to keep a running list of questions for the doctor on my computer. I'm not that fancy any more. I pretend my brain will work and I'll remember what I want to ask until a few days prior when I start thinking about things and then decide I cant remember them all and  slightly panic.

I am at that panic point now. What the heck was I going to ask my doctor anyway? So I'm making a list. I started yesterday at work jotting down on a post-it. I quickly switched to a larger post-it. I need a bigger piece of paper so I can't lose it. I use paper because its easier than the high tech route of a word doc on my phone to update.

I know this will be my basic annual physical. As basic as any doctor appointment is with two cancer diagnoses. I know I will be sent for blood work and a chest x-ray. Maybe some other doctors for follow ups on assorted ailments. I never get to just go to the doctor and leave. I plan my annual physicals for first thing in the morning so my trips to the blood lab and x-ray avoid the long lines.
So today I will focus on making my list - once I find the list I started yesterday. On a nice big piece of lined paper so I can bring them with me and write down the answers. Like the good patient I pretend to be.

Side effects and oncology drugs

The FDA is expecting to receive 20 new  applications for oncology drugs this year which is an increase. While 20 doesn't seem like a very big number, in some ways it is. It is nice to see progress in the treatment of cancer especially as an understanding of its molecular make up grows. Last  year the FDA approved 30 drugs, 10 for oncology.

But this is what gets me:

"Oncology drugs are unique in that the regulatory emphasis is on effectiveness rather than safety because patients are often so gravely ill."

Yep. Safety isn't as important. If the disease doesn't kill us the treatment might.

Look at Robin Roberts and her new diagnosis of MDS or pre-leukemia. She was treated with Doxorubicin (Adriamycin). According to ChemoCare.com:
"There is a slight risk of developing a blood cancer such as leukemia years after taking Doxorubicin."

I have another friend who developed leukemia after chemo for breast cancer. She had a stem cell transplant and has been okay for a few years.
It seems to be fairly standard that stage IV cancer patients have CT scans every three months or so. Most patients are told to avoid frequent CT scans due to the amount of radiation received. Cancer patients are put in the category of the 'we can stop the disease from killing you but the treatment might get you in the end'. How reassuring.

The price we pay

I went off for a good weekend of volunteering, helping a worthy cause. But now I am paying the price. Sunburn. Oops. A big oops. My face is feeling a little crispy. I did put sunscreen on and wear a hat, most of the time. Well sunscreen all the time and the hat most of the time. But I was outside a lot.

I will just hope it fades away by Friday when I have my annual physical. I have to focus this week and come up with a list of ailments and issues to discuss. It won't be a short list because nothing related to my health is ever uncomplicated. My health is never uncomplicated. Mostly because with my history they need to be sure (blah, blah, blah).

But it was a good weekend and it helped a worthy cause. Except for the blister I got too.

Here fishy, fishy, icky

I will not be blogging tomorrow and Sunday because I will be off doing a worthy cause (and a note to all you potential burglars out there, the cat, backed up by my husband, will remain at home). This weekend I am volunteering at the MA/RI Casting for Recovery retreat.

This will be my 4th retreat, third one as a volunteer. Casting for Recovery provides fishing retreats for women with breast cancer. The participants are given the opportunity to learn a new skill and to experience the benefits of a retreat with other women coping with the same disease. If you have or had breast cancer, I urge you to check it out. Its free to participants and there are retreats all over the country as well as some overseas. Its a great experience even if you never fish again.

But getting involved in this has created a problem. In my opinion, fish are slimy when fresh out of the ocean. So I guess its a good thing I haven't caught a fish yet.

My grandparents were avid fly fishers. They would go on vacation to key fishing spots in the eastern US and Canada. I remember my grandmother taking me fishing when I was little. I did not used to mind fish and bait, etc. The sliminess factor was not a problem. Besides I could always convince a sibling or my mother it was better if they did it for me.

My brother, sister, and I used to bottom fish with worms. At some point I decided worms were icky and stopped that. We would sometimes troll off the boat and catch mackerel or other fish for dinner. I never really liked taking hooks out of fish. And they were slimy.

So I have relearned to fish and have even learned to fly cast to an extent. But I am very grateful I have not caught anything, yet.That is always a possibility ever time I go fishing.

So this year I am off for another retreat with my fly rod and reel. And a fishing license. What if I catch a fish? And have to touch it? Ick.

Blood tests and brain tumors

This is a good news/bad news kind of post. No, not about me - I'm fine, well as fine as I ever am these days. But two bits of news to think on this morning.

Sheryl Crowe has a benign brain tumor. We knew that unless you have been living under a rock. (She's a celebrity so of course it is more important than anything about the European economic crisis or the slaughter in Syria. Nothing against Sheryl but the media gets its hype all wrong.) Its been all over the news. Its stable, it does not require surgery, its not that uncommon. But what is the bad news is that if you had breast cancer, the ER/PR positive type, your risk for a brain tumor is increased.

"But Crow’s meningioma isn’t due to breast cancer cells spreading to her brain. Rather, it may be driven by the same reproductive hormones that also played a role in her breast cancer.

A quick literature search revealed more than 350 studies examining the connection between meningiomas and breast cancer. One published in the journal Surgical Oncology found that both meningiomas and the most common form of breast cancer are associated with an increase in estrogen and progesterone receptors on cells. They’re also both likely to strike women in their 50’s and 60’s. Crow is 50.

Other research has shown that women with meningiomas are 40 percent more likely to have breast cancer than those without and are 50 percent more likely to have endometriosis where the uterine lining grows outside the uterus causing pelvic pain."

So that puts all of us ER/PR breast cancer women in the increased risk of a brain tumor. Gee, thanks. Cancer, the gift that keeps on giving.

But on to a more positive note, there is a new blood test being studied (because we needed another study you might recall) that may help determine which women are more likely to have their early stage breast cancer recur. Blood tests done before surgery are done to look for circulating tumor cells in the sample. If you have more circulating tumor cells (or CTCs for short), you are more likely to have a recurrence. And maybe if you don't have any CTCs, you don't need chemo. I would have liked that test and maybe been able to skip chemo and all its lovely side effects.

I will put this one in the good news category and even dare to call it progress, even though it still needs more research - like everything else.

Carcinogenic cancer treatment

Cancer treatment can be carcinogenic. Chemo can cause leukemia and lymphomas. Radiation can cause other cancers. Actually having these treatments greatly increases your risk of later cancers, never mind the fact that once you get cancer the first time, you are put in the higher risk category already.

A study was done (because we needed another study - we are keeping these researchers employed)  on people treated with radiation for cancer while young, are at greater risk of developing breast cancer.

"Risk of Breast Cancer by Age 50

• Women treated with chest radiation for any pediatric cancer: 24%
• Women treated with larger dose of chest radiation for Hodgkin lymphoma: 30%
• Women with BRCA1 mutation: 31%
• Women with BRCA2 mutation: 10%
• Women with average risk: 4%"

""We need to know how to take care of survivors and change childhood cancer therapies, so this doesn't happen to the next group of survivors," says Lisa Diller of Boston's Dana-Farber Cancer Institute. "Children treated for Hodgkin lymphoma today are treated with therapies that try to maintain the excellent cure rates but use as little radiation as possible."

The Children's Oncology Group recommends women treated with higher doses of radiation begin breast cancer screenings at age 25, or eight years after finishing radiation, whichever comes later, using both mammograms and MRI, or magnetic resonance imaging. Typically, medical societies recommend women at normal risk for breast cancer begin getting screening at age 40 or 50.

Diller says doctors may need to re-evaluate those guidelines for pediatric cancer survivors. She found that even women given lower doses of therapeutic radiation had a significant risk of breast cancer. That risk may continue to rise, too, as childhood cancer survivors age. Few survived the disease before the 1970s, so many of the first survivors are just hitting middle age."

So all of us 'guinea pigs' so to speak back then are testing the limits of the five year survival rates now that we are 30 or more years out. I did not have chest radiation but I was treated with radioactive iodine to get rid of the rest of my thyroid in 1981. Did that cause my breast cancer or increase my risk of breast cancer? I have no idea. My doctors tell me my cancers are unrelated but exposure to radiation or radioactivity is a known cancer risk so who knows.

So I guess they used toxic chemicals and radiation to save us but these same items that saved us may help undo us in the long run. Maybe if they can't cure cancer yet, they can find treatments that aren't as toxic in the long run.

Belonging vs. loneliness

The opposite of loneliness is something along the lines of belonging. We want to belong. Humans are social animals and have a need to belong to a group in a sense. The majority of us want to be social and interact with others.

We create our lives with our friends and family around us in a cushy little nest. Then a cancer diagnosis takes us and yanks us out of our comfort zone and throws us into the world of biopsies, tests, procedures, medical misadventures, things that will make you feel a little 'pinch', oncologists, radiologists, chemotherapy side effects, radiation blistering, and all sorts of fun and games we don't understand and our friends and family can't even begin to. We no longer belong. We are cast off into the stress filled world of cancer.


Cancer and other icky medical diagnoses can be very isolating. We feel like crap. We are overwhelmed with medical stuff. No one understands. We are lost adrift in our little worlds with out support.

We then seek to belong again. That is where we find support groups, online message boards, little groups on Facebook, and learn to belong again with people who understand all these yucky things that make up a cancer diagnosis. We need to find a new nest to support us and our medical ups and downs. We learn from each other and regain ourselves. We may be different but we are still here - and mentally sane (or mostly). (The sanity part can be questionable but we do try.)

ASCO announcements

Every June, ASCO (American Society of Clinical Oncologists) has their annual conference where all sorts of announcements are made on the latest advances in oncology and cancer treatments. The conference this year is going on right now, June 1-5 in Chicago. This is why the news is full of all sorts of 'exciting' cancer advances.

PD-1 is one of these announcements.

"Researchers gave the drug to nearly 240 patients with advanced melanoma, colorectal, prostate, kidney and lung cancers. All the patients had tried up to five other treatments, which failed. After up to two years on the drug, tumors shrank in 26 of 94 patients with melanoma, nine of 33 patients with kidney cancer and 14 of 76 patients with lung cancer.

The drug was not without side effects. About 14 percent of patients in the trial reported conditions such as skin rashes, diarrhea or breathing problems."

If you look at the numbers closely that is 27% of the melanoma patients, 27% of the kidney cancer patients, and 18% of the lung cancer patients. And 14% had side effects. So less than 1/3 of the people had success with this drug after running out of other options. But what happened to the 2/3 of the patients who didn't have success? Another treatment failed them.

But hidden in this, I do see a glimmer of hope. What made those 1/3 of the people different from the 2/3? Is there something in their genetic make up which made this successful? That's where I see hope.

Another note is that the rate in which kidney cancer reacted is significant in that normally the rate is around 7%. See this article for more explanation.

T-DM1 is another advancement. It was used to treat aggressive Her2 positive breast cancers. It was tested on a group of about 1000 women who were split into two groups so it was tested on about 500 women.

"Women getting T-DM1 had 9.6 months of progression-free survival, the time between starting the treatment and the cancer getting worse again, compared with 6.4 months in the standard therapy group. That's a median improvement of three months.

This may not seem like a long time, but as Dr. Eric Winer of the Dana-Farber Cancer Institute in Boston explains, it means a lot to the individual patient.

"I've had patients on this drug for one, two, three years," he explained. Winer says that if a patient gets an additional three months before the tumors start growing again each time she goes through a treatment cycle, that can add up to almost a year.

Blackwell says that after two years, 65% of women getting T-DM1 were still alive, compared with 48% in the control group."

I would hope that today and tomorrow more advances will be announced that will expand on these and we will see more progress towards a cure.

How long would you want to wait?

For biopsy results for potential cancer? About 30 seconds. In New Zealand you get to wait 10 days, unless for breast cancer where the wait currently is 5 days. This five day turnaround is now under fire due to errors by pathologists who are rushing to get their job done.

Where I go for treatment, a biopsy is usually available in a few days - sometimes longer for other cancers. I have learned they usually tell me it will take about a week but often I hear much sooner.

There are two sides of the waiting for results issue. First comes the patient who wants the results in a nano-second. (Thank you to Amazon to training the public to expect everything instantly.) Patients don't want to wait. Waiting causes stress. Waiting causes crankiness AND crabbiness. Waiting causes that little voice in your head to tell you that it will be really BAD,

But on the other side are the pathologists who need the time to do their jobs. We don't want them to rush and make mistakes - which is what happened in New Zealand (which is why there was an article on this that I read). That is really BAD.

However I find the idea of waiting 10 days for a biopsy result to be too damn long.

The ugly side of pinkification exposed

Finally the film, Pink Ribbons Inc, is opening in the US. I blogged about this Canadian made film earlier this year. But now that it is out, there are more reviews available which gives a better idea of its focus.

Forbes.com has reviewed the film and provides these insights.

"Patients with various stages of breast cancer, public health advocates and researchers raise three important points:

No. 1: “Pink ribbon” marches, marathons and events (illuminating the Empire State Building in pink to create breast cancer awareness, for example) not only waste resources, they mislead public opinion about what’s necessary to treat the disease.

No. 2: Financial benefits to research efforts from “cause marketing” (in which brands such as Yoplait and Ford declare themselves “pink”) are minimal, as is the gain from manufacture and marketing of pink merchandise.

No. 3: The pink industry’s heavy use of war imagery (describing “battle” against breast cancer, for example) is misleading and harmful to the physical and psychological well-being of those whose cure–and lives–depend on effective medicine, not metaphor."

The LA Times makes these comments:

"Even after massive fundraising efforts ($1.9 billion in the last 30 years from Susan G. Komen for the Cure alone), a woman's lifetime odds of contracting the disease have narrowed from 1 in 22 in 1940 to 1 in 8 today. Little of that money has made its way into research into causes, notably environmental factors like contaminants from plastics or livestock treated with hormones, the film argues.

Instead the push has been for early detection and developing a cure—two areas that benefit pharmaceutical companies but not necessarily patients, a mere 20% — 30% of whom come from high-risk groups. You can't cure what you don't understand is one of the film's sobering messages."

NPR also states: 

"As one woman observes, describing the treatment of cancer as a "fight" or a "battle" suggests that the disease is always beatable if patients make a heroic effort. The implication is that people who die "weren't trying very hard.""

[Anyone who tries to tell a woman with breast cancer that she isn't trying very hard needs is pretty damn stupid.]

"The disconnect between research and results is one of Pink Ribbons, Inc.'s keenest points. On-screen commentators contend that breast-cancer research is poorly coordinated and badly focused. Fewer than 30 percent of patients have a genetic proclivity for the illness, which indicates that most cases stem from environmental causes — yet relatively little attention is paid to prevention, or to chemicals that mimic estrogen and disrupt the human endocrine system."

A very thought provoking documentary on the ugly side of pinkification. Yes the film gives opportunities to for Komen and other non profits to offer their side but I think these messages are clear. Pink isn't helping. So please go watch the documentary if you can and learn more. If you wish to wear pink ribbons, just be sure to understand what the pink portion is going to and who or what it benefits.

My only problem with this film is that the closest it is showing to me is about 60 miles away - on the very tip of Cape Cod - which isn't very convenient in the summer.

Celebrating?

Tomorrow is my blog's fifth birthday. Five years ago I started this little means of communication. Who knew that over 1800 posts later, I would still be writing it? And still going to the (damn) doctor all the time.

It also means its been five years since my breast cancer diagnosis. I'm not celebrating. Some people jump up and down and say five years and have a party or some other celebration. I don't feel the need.

For some reason, cancer statistics always include five year survival rates. That doesn't mean squat. Its a number that was selected and used but cancer can still recur later. I did some research on this (which means I asked Dr. Google) and found that the Mayo Clinic provides some insight. (The Mayo Clinic is a bit smarter than Dr. Google so I will believe them.)

First it gives some back ground on what a survival rate is:

"One of the questions many people ask when first diagnosed with cancer is about their prognosis. You might want to know whether your cancer is relatively easy or more difficult to cure. Your doctor can't predict the future, but an estimate is possible based on the experiences of other people with the same cancer."

"Cancer survival rates are based on research that comes from information gathered on hundreds or thousands of people with a specific cancer. An overall survival rate includes people of all ages and health conditions who have been diagnosed with your cancer, including those diagnosed very early and those diagnosed very late."

This means based on other people with the same diagnosis, this is what you can expect. If a five year survival rate is 90% it means, that 10% of the people with the same diagnosis didn't make it five years while 90% did. The cup half full says 90% is the number to focus on. Its a statistic so when you focus on these you become a statistic.

Also, as I said, they don't mean squat:

"Cancer survival rates often use a five-year survival rate. But that doesn't mean that cancer can't recur beyond five years. Cancer can recur many years after successful treatment. Discuss your risk of a cancer recurrence with your doctor"

So in other words, they are statistics and you need to talk to your doctor about your particular case. This is your standard lawyer sanitized, Dr Google medical speak, CYA language to say they are merely numbers and don't really mean anything.

So no I'm not celebrating. Not yet, I'm waiting until they find a cure.