If we can kill them, lets confuse them part 993

Once again we are faced with the vast conspiracy to kill off all the cancer patients through confusion. First they said mammograms for everyone over 40. Then they said no, not until 50. Then the UK said only every 2-3 year after 50. Then Canada said after 50. Now the radiologists say mammograms should be done annually for women over 40.

Call me confused.

But what this is really telling us is 1, there is a vast conspiracy out there to confuse us all and 2, the only way to decide what is best for you is to talk to your own doctors and see what the two of you decide is really right for you.

A good idea that doesn't work for cancer

Something else that works for everything but cancer. As yet another effort to control health insurance costs, in the past year tiered health insurance options have been introduced in Massachusetts. The point of them is to redirect patients to lower cost medical centers, thus reducing premiums for employers and patients. If you pay higher premiums you can have access to more hospitals and doctors. It kind of makes sense - send people for routine care to cheaper places.

People do complain with changes in health insurance particularly when it causes them to change doctors. And one of the biggest complaints with tiered health insurance is that people are forced to change doctors. I can understand that but I am not entirely sympathetic. If you have the same doctor for years you build a relationship with them and trust and like them. But we have to allow for change in our lives. We can't assume anything will last forever.

In the past four and a half years I have had my oncologist retire, fired my GI doctor and got a new one, found a new eye doctor, endocrinologist and primary care, had my long time dentist retire, and my dermatologist moved to another medical facility. I have also acquired an elbow doctor, an ankle doctor, therapist and meds therapist.. In fact the only doctors I have kept in the past four and a half years are my radiation oncologist, knee doctor, breast surgeon (and I only see his nurse practitioner these days). I may have stressed a little at the time of these changes but I am doing okay with all this. Change happens.

But the problem is with cancer and probably some other ailments, you quickly need to get to a specialist at an expensive place that specializes in cancer. This isn't a time to shop around for medical care. Yes you have a little time but if you need an oncologist don't sit there waiting to find the right one. You need to get an oncologist and a diagnosis so you have a basic idea of how aggressively you need treatment. If you don't like your oncologist you can find a new one at that point and then do some looking around if you want. But you don't want your insurance company telling you that you can't go to the specialized cancer center that could save your life.

Needed: Rocket Scientist Drugs who will work for cheap

We have smart drugs now. They are very smart. They outsmart tumor cells and the tumors disappear. But they aren't smart enough. The drugs work for months and then they eventually stop working and the cancers return. These drugs are not cheap either. One of them 'vemurafenib' costs a paltry $9400/month or over $100,000 for a year, if it works for that long. It works for an average of seven months.

Actually these drugs are pretty smart. They target a tumor's weaknesses and melts them away. But I have two problems with them. Cancer cells are sneaky b*stards (excuse my language here) and learn to outsmart these new drugs. We need rocket scientist drugs which will continue to outsmart cancer cells and can stay ahead of them. The worst thing we could do would be to end up with drug resistant cancers which become resistant to treatment like some germs are to antibiotics.

We also need rocket scientist drugs who will work for cheap. A drug that costs $9400/month and only lasts for an average of 7 months is a bit on the expensive side. It doesn't matter if insurance covers it or not because the cost works its way back down through the cost chain.

Wanted: Rocket scientist anti cancer drug which can stay ahead of the competition by out smarting the cancer cells. Low salary, long hours, repayment - saving millions of lives.

So where should you live?

It seems that it is important where you live in terms of rates of cancer and cancer survival rates. First I found a list of the top fifty towns and cities in Massachusetts with the highest rates of cancer - this data needs to be taken with a large grain of salt. The city with the highest rate of cancer is Nantucket - which is also home to lots of retirees and seniors. Cancer is more prevalent in older people so it would make sense where more old people live there would be more cancer.

Then I find an article on the UK talking about their great successes in increasing survival rates for some types of cancer but not others. One theory on why some blood cancers are have such high survival rates is that those patients are quick to be referred to a specialist. Now that's food for thought - if you have a cancer diagnosis, find an oncologist who specializes in your cancer.

Finally, as of 2007 cancer survival rates are increasing across Europe but still lag behind the US. And rates are worse in eastern Europe than in northern and western European countries. So location does matter. But also the best cancer survival rates are in Sweden, Norway, and Denmark. "The United Kingdom in particular comes out badly in the tables, showing cancer survival rates that are among the worst in Europe." I find this interesting in that it is sort of a rebuttal for the article above. I don't think this is a reflection on national health care because most of Europe has one form of it or another. Maybe its reflective of lifestyles.

But are their higher rates of other diseases in other places? Probably. This is only about cancer. We can all live in caves and stay out of the sun and eat raw food and never touch any chemicals...

Cancer isn't cheap

Cancer is a very expensive ailment - even with health insurance. I have relatively good health insurance and for the fifth year in a row, I will max out my allowable out of pocket expenses at $5000. That amount really only covers my co-payments and prescription costs. Everything else is additional - travel, parking fees, dentists, eye doctors, etc. And my income has gone down because I don't work full time anymore. I work two part time jobs which get me close to full time hours. Since they are part time, I get no benefits from either. No paid time off, no retirement, etc. If I am not there I do not get paid.

As someone lucky enough to be living with cancer who gets to go to the doctor all the time, my expenses definitely add up. This coming week I have four doctor appointments. Last week I had none - because it was a short week. The week before I had three or four. I probably average around 8 each month. Each usually has a $20 co-pay.And I am not in active treatment - I just have follow ups and other medical issues.

I think this is a side of cancer that is under reported. People with health insurance have hefty bills as well. I think I have good insurance because it has an out of pocket maximum. Many people do not have this benefit and their bills run into the thousands annually.

This morning I received an email announcing a new online webinar on Managing the Costs of Cancer Care on December 8. I am not sure I can go but I have signed up for it and will see about rearranging my schedule if needed. There are also two recorded webinars that I want to listen to soon: Managing the Costs of Recovery and Money Matters: Finding the Resources to Manage Cancer Costs.

Something about the whole thing irks me about this whole thing. I feel like the patient is the pawn in the scam of ridiculously expensive medications, big salaries for someone somewhere, and insurance companies deciding what they will and won't pay for. We can only afford to get cancer if we are rich.

Prevention vs. screening

We have been on the screening, screening, screening trip for a long time. Everyone is up on the controversy about mammograms at 40 or 50 and MRIs as a screening tool. We also are all up in arms every time the FDA changes a ruling on a cancer drug - is Avastin really helping breast cancer patients? But aren't we forgetting one teeny, tiny thing?

Prevention is important too. We all know the basics - eat your vegetables, don't get fat, be sure to exercise, don't smoke, don't drink, blah, blah, blah. But do we do that most of the time? Yesterday, being Thanksgiving doesn't count, in terms of taking care of ourselves. It was a holiday. We are not perfect people and we are allowed to overindulge once in a while in all the bad things - fatty foods, buttery sauces, gravy, ice cream, pie, cheese, wine, etc. But we can't do this every day. We need to be good most days. This means no fast food, nothing greasy, no big restaurant meals, etc.And we need to get our exercise.

There has been so much talk about research and screening and treatment but we also need to remember the bigger picture. Cancer has risk factors that you can reduce, even though we can't eliminate them, by taking care of ourselves. I think I have overlooked this as well until I was reminded by this article that I read this morning. As we live in a society with ever increasing waist lines, we need to remember that with increased weight comes increased risk of ailments - not just diabetes but also cancer and more.

So now that we have started to digest our big meals from yesterday, we need to get back on track and eat healthy, get moving, and think prevention.

Thanksgiving chaos

This morning is a bit of Thanksgiving chaos. We have my brother, sister in law and four children staying with us. They arrived last night and we stayed up until midnight playing scrabble. Then this morning the first one was up around 6. We have had the normal range of what to eat or more correctly, what the children decide they don't like any more because they really want to cut the mask out of the back of the cheerios box - but they have to eat all of them first.

I have also made mashed potatoes, chestnut stuffing, and cut up vegetables for veggies and dip. However I havve successfully conned my brother into making carrot sticks. I think. I am still looking at peeled but uncut carrots.What this has done has made my back hurt already. A lot. But I have drugs. Hmmm.... A sedated Thanksgiving. That may not be such a bad idea.

Otherwise the cat is all stressed because there are strangers in his house messing up his nap space and times. Soon we are off to eat lots of food but the key is to remember to bring everything we need. Because of my lack of brain cells, I made a list. And lost my list (and maybe my mind as well).

We will eat too much and pretend a short walk will enable digesting of the vast quantities of food we will eat. Just another normal American holiday.

Happy Thanksgiving everyone!

We are turning into a country of shopping malls

I am on a different bent today. Normally I find all things medical and health wise to blog about but today that is not what is aggravating me. I mean the pouring rain doesn't help - it needs to stop by 1230 so I can go out to lunch and not have to drive in a down pour.


Today I want to blog about corporate America - not in the Occupy movement sense but in how they treat their customers. First of all, retailers think they are doing customers a 'favor' by opening stores on Thanksgiving or as soon as they can after midnight. Here in Massachusetts, employees can't work until midnight so the stores will open at 1 am. They get an hour to get the store open before the onslaught arrives. But will people really go shopping at 1 am?

I was talking to a friend the other day who for 23 years has gone shopping with her daughter on black Friday at 5am, enjoying the first rush, shopping for a few hours and then going out to breakfast. This year the fun has gone out of it. They are not going to get up to shop at 1am. Their annual 5am shopping trip will lose its luster. Its the end of an era for them. I am not sure they will shop on Friday as a result.

What about that Target employee who put up an online petition to 'Save Thanksgiving'? He has over 196,000 signagture so far. There is an unofficial poll on CNN.com this morning where 84% don't want stores open on Thanksgiving. Do I hear some dissent in the masses here? Holidays are for employees too. They deserve some time with their families. Yes you can say if you don't want to work the hours, find another job. But in this economy there are not a lot of options for many people. Retailers are desperate for every dollar they can get. I'm not going to any store this weekend other than to take my 7 year old nephew book shopping for a belated birthday present. We will go to an independent store that is not in a mall. I will probably also shop on Cyber Monday to get a good deal for a coat for my husband that I have been waiting to go on sale but that will be at my convenience, not theirs.

In addition Consumer Reports has published their nice or naughty store list. This helps tell me where to shop or not to shop. The naughty ones include Verizon, Swiss Colony, Air Tran, Southwest Airlines, Sirius radio, Game Stop and American Apparel to name a few. But the nice ones include some of my favorite stores - Costco and REI. I can't find the actual CR article but at least a story about it.

Corporate America is unfortunately here to stay. However just because they try to tell us what we want and what we need, and when we should buy it, that doesn't mean we need to suck up to their whims. I won't shop in the middle of the night. I only shop when stores aren't crowded. I try to avoid the scams and to good to be true offers. I also try to buy local.

I think its time we vote with our feet. If we don't like poor customer service, tell them and stop shopping there. If we don't like the quality of their products, tell them, and stop shopping there. If they are the only store for miles around because they have forced out the competition (think Walmart and its evil practices on small town USA), and find another option. Maybe you can't go to a grocery store weekly but you can stock up monthly on the non-perishables further away and buy locally/non Walmart for the little stuff.

We also should remember money and goods aren't everything. If things are low cost, they are probably going to fall apart soon. Low prices don't mean good quality and good service. My last trip to Walmart resulted in rotten produce - it didn't matter if it was cheap in the first place if you have to throw it out and go shopping again.
Also, why do we need stuff? Its nice to give someone a gift, but what about a homemade one? For my family, they will get gift baskets of food I made and some yummy items I purchased. I have done this for several years and they are all happy. Less expense for me, I get to make cookies and eat a few on the way, and we don't amass more stuff. I really hate shopping malls and avoid them as much as I can. I also have a convenient bad back that allows me to refuse mall shopping trips by saying, I can't go shopping it makes my back hurt.

And Canada Too

Yesterday I blogged about the UK's NHS recommendations from breast cancer screening. Well, today Canada's health insurance is the topic. They now recommend for women of normal risk that they get a mammogram every two or three years from age 50 to 74. According to their thinking there is no benefit for women from 40-49 to have mammograms because it doesn't save enough lives and causes unnecessary false positives, biopsies, and even surgeries. A woman of normal risk is one with:

• No previous breast cancer.
• No history of breast cancer in a first-degree relative such as a mother or sister.
• No known mutations in the BRCA1 or BRCA2 genes.
• No previous exposure to radiation of the chest wall.

Well, hellooooo!!! Knock, knock! WHAT THE HECK ARE YOU THINKING?  If I followed these guidelines I probably wouldn't be here. I had none of the risk factors listed and still ended up with breast cancer at 46. Where is the thought that there isn't a cure yet? So if you miss it for a few years, you may have killed off your patient?

In reply: ""Since one in six women who die from breast cancer are diagnosed in their 40s, we simply cannot afford to see missed opportunities for earlier detection," said Sandra Palmaro, CEO of the Canadian Breast Cancer Foundation."

In addition:
Martin Yaffe, a professor in the departments of medical biophysics and medical imaging at the University of Toronto, called the recommendations "scientifically unsupportable."

"If followed, they will result in over 2,000 breast cancer related deaths that could be avoided by screening in Canadian women over 10 years," Yaffe said in an email.

Yaffe said the task force ignored scientific data from studies using modern technology that point to a 25 per cent to 30 per cent reduction in mortality through screening.

Women invariably say they're willing to tolerate the stress of having to come in for more imaging tests in exchange for a better chance of not waiting until a cancer is at advanced stage before it is found, added Yaffe, who is also a senior scientist in imaging research at Toronto's Sunnybrook Research Institute. 

I hate this stuff. This is worse than insurance companies making medical decisions. This is the government making medical decisions.

Screening does more harm than good?

I found an article saying that the UKs NHS policies of screening for breast cancer do more harm than good. Hello - screening is a good thing.

According to the article, the NHS invites women over 50 to have three-year screening mammograms (that is one every three years). Yes mammograms pick up things that may never turn into to tumors/problems at all causing stress and worry but the tumors they catch are more likely to be caught early. As opposed to the ones caught later in manual exams which are usually caught in later stage. And one third of all breast cancers are caught between the mammograms. But is the stress of a false positive more damaging than a late stage cancer diagnosis? I'll take the false positive risk any day. As opposed to the 'we found it too late risk'.
The article adds that women with breast cancer in their families should get the gene test because ten percent of all diagnosis are hereditary. That means 90% of all breast cancers have no hereditary connection - what are those people supposed to do? Get a mammogram every three years and cross their fingers in between?. A red rash can be a sign of inflammatory, an aggressive cancer - which is very rare, just a few percent each year of all cases diagnosed. Women should also be breast aware and do regular monthly self exams. Well, blah, blah, blah, this is nothing new.

Finally the article ends with: "Prof Evans tells menopausal women with a family history to avoid hormone-replacement therapy as artificially raising hormone levels can increase risk of breast cancer. The hormone oestrogen, which can drive some forms of breast cancer, is produced by fatty tissue. So the fatter you are, the bigger the risk."

Where do I have a problem this article? I am not sure I can count that high. I originally read this article and thought it might be a nice blog topic on the pros and cons of screening. Then I really started reading it and got ticked off. A mammogram every three years after age 50? And then they stop after age 70 unless requested by the patient? ‘By the age of 80 any lump is likely to be breast cancer. Women should be aware of any changes.’ - so at the highest risk age, screening is only at patient request? That is so (il)logical to me - it must be a government regulation.  And did they just call me fat when discussing HRT and estrogen? They made me feel it was the fact I was not the perfect size 6 that is why I ended up with estrogen receptive breast cancer. I am not slamming the NHS but maybe they just need a new bedside manner in this whole article.

It saved my life

Frankly I am sick of these people who are quoted in articles saying something 'saved their life'. Especially when its something that is newly developed and just made available. 3-D digital mammograms are used at Mass General where they were developed and finally approved by the FDA this year. Of course in the article, a woman is quoted as saying the 3-D mammogram saved her life. (I do not know who this woman is and think she is lucky when they caught her breast cancer when they did.) But I have a problem with the 'saving her life' bit.

The article is titled 'New 3-D mammograms could save lives'. Well, I'll put that in the 'duh' category. New medical advances are done to save lives. We know that. This is what sustains medical research - the chance to save lives, have people live longer, and suffer less.

But somewhere in there the translation to saving her specific life I feel a disconnect. Would she have died if this technology not been invented? By thinking this way, are we setting ourselves up for an unattainable desire for the ultimate medical cure/test/procedure that heals us all? Isn't this thinking 'without this I would be dead' a tad idealistic?

What I am trying to say is that medical advances are wonderful and do save lives. But:

We can't set ourselves up for hoping for the unattainable. We have to live with medical advances as they are and not for how they will be in the future or never. We have to accept that what is standard treatment is what we can expect. We can't expect things that don't exist yet. We would be setting ourselves up for disappointment.

I do not credit a single thing with saving my life. What has made me live as long as I have is a bit of common sense (eat right, look both ways before crossing the street, wearing my seat belt, etc.), exercising, getting appropriate medical are (annual physicals, dentists, eye doctors, etc), and even remembering to take my vitamins. I can't think of a single thing that 'saved my life'. My cancers were both caught through regular medical exams - throat check after repeated cases of strep and an annual mammogram. Did they save my life? I don't give them credit.

Going in style

We all want to go in style - none of this sitting on a nursing home porch with drool running down your chin for seven years, but to be the one sliding to a stop with a drink in one hand and a tan left from a tropical vacation - saying 'yee-haw, that was fun'. Unfortunately life doesn't always let us do that. As a second best effort, we can make out a living will that tells what we want. (What am I on a morbid kick? No. And I have no plans on going anytime soon, but I could get hit by a bus tomorrow. I call it being practical.)

A few weeks ago, when I was passing through the hospital lobby on the way to an appointment (what a novel experience, it hadn't happened for at least a couple days), there was a group of nurses sitting at a table distributing information and answering questions on living wills and health care proxies. I have been asked about these a few times by my doctors - they just want one in my medical file. (But where are they going to keep a piece of paper in their electronic records system - it sound likes it defeats the purpose.)

I did fill one out once and get it witnessed and its someplace around here. The one question I did ask the nurses is once you make out your living will, what are you supposed to do with it once you have it? The answer is - keep the original, give a copy to your doctor, and give copies to those you designate to be decision makers. That was helpful.

But I digress. I like the idea of having a living will. I like the idea of having a plan - I am a planner, ask my husband, it drives him crazy. I think I want to plan a big bash when I am going. It will be before I go because I want to be there. You can have another one after I am gone if you want, but I want one last bash.

More than that, I want to plan my going. Through my job at the cancer support center where they have an Advanced Cancer Support Group, I have learned about a program called Aging With Dignity, where you fill out a form called Five Wishes. In this you answer these five questions:

1. The person I want to make medical decisions for me when I can't.
2. The kind of medical treatment I want or don't want.
3. How comfortable I want to be.
4. How I want people to treatment.
5. What I want my loved ones to know.

Not only does it ask the questions, it helps you answer the questions as well. It includes medical, spiritual, emotional, and personal issues. And it is accepted as a living will in many states. And it tells you how to make changes at a later date, etc. Its very practical. It involves planning - I like that (even if its only to drive my husband crazy).

An ounce of prevention beats a pound of cure

We get our flu shots and other lovely injections to prevent 'bad' things. Now 'they' (as in the big mysterious them a/k/a big brother) tell us that Tamoxifen and aromatase inhibitors can help prevent breast cancer in women who are high risk. And if you take a pill for five years you get another 15 years, 20 years total, of 50% or more risk reduction. Now that is pretty good news I'll say. If I could have prevented my breast cancer, I would have. But I was basically at a normal risk level so I wasn't a candidate

But the article adds that there are risks of side effects from the medications. Tamoxifen can cause uterine cancer or blood clots. Aromatase inhibitors can cause hot flashes, bone loss, muscle cramps and other little fun things. Side effects are side effects. I do not think they are a reason to stay away from a medication. First of all not every one gets them. If they did, the drugs would be off the market. If you have to deal with hot flashes for five years but then significantly reduce your risk of cancer for another 15, I'll take hot flashes over cancer any day. If one drug does not work for you, there are often substitutes that can be made. And if you are on the medications you will be well monitored.

My take on drugs that are recommended to me is that I will try them and if I can't cope with the side effects or don't like how I feel, I go back to my doctor and ask for a dose adjustment or a substitute medication. A medication is taken for a purpose and which is the lesser of two evils - the side effects or the original ailment?

A pound of cure for breast cancer often includes chemotherapy as well as radiation and surgery. Surgery leaves scars. Radiation can leave skin and other issues. Chemotherapy can leave blood issues, and chemo brain. Now that it has been documented by Fox News, we can confirm that chemotherapy causes chemo brain. So not only do you get to be on the cancer roller coaster for life but you lose some of your marbles, a/k/a brain cells, during treatment. But my chemo brain has created an endless supply of humor for my husband as he laughs at my latest brain freezes, and I'm not even a politician.

I did the exercise, eat right, take care of myself life style, but apparently it wasn't enough. I want a magic pill that prevents everything - or are those called vitamins?

More on insurance rates

Today's paper tells me that Massachusetts no longer has the highest health insurance rates in the country. In fact it is now down to number 9 on the list. In 2009, the average health care cost for a family was $14,723 and in 2010 it was $14,606. So it actually decreased a tiny bit. Here's how the numbers stack up

2009	2010
1. MA $14,723	1. DC $15,206
2. WI $14,656	2. NH $15,204
3. VT $14,558	3. FL $15,302
4. WY $14,319	4. CT $14,888
5. DC $14,222	5. RI $14,812
6. AK $14,182	6. NY $14,730
7. CT $14,064	7. IL $14,703
8. LA $13,846	8. DE $14,671
9. MD $13,833	9. MA $14,606
10.NH $13822	10. ME $14,576

I actually find the numbers appallingly high. That's a lot of money no matter how you stack it. $15,000/year is $1250/month - a significant amount. Yes employers usually kick in a fair amount of it, but that percentage has been decreasing for many years. I know people now who's employers only kick in 50% leaving the other half to the employee. And we know co-pays are going up. Even for Medicare. There is another article in the paper that says Medicare is increasing the co-pays for some brand name drugs by up to 40%.

Also, the rate of increases are substantial. In 2003, the average family premium in MA was around $9300. "Even if Massachusetts is improving, “health care premiums are still growing at a faster rate than our economy, and they’re growing at a faster rate than our wages, and that’s a problem,’’ said Sarah Iselin, president of the Blue Cross Blue Shield of Massachusetts Foundation." 

The question is are these results indicative of the success of the MA state health care program or just a 'blip' in the radar? I hope they are showing success. I would like to note that while some states on this list increased around $1000 from 2009 to 2010, MA didn't increase at all.

Who is getting all this money anyway? They blame costly tests and expensive medical equipment so where does the money go? Are the costs high because the machines are made out of some expensive metal which means the mine owner in some corner of the globe is getting rich? But its still just too much money. We need to figure out more ways to reduce these costs.

And they still want to raise rates

I live in Massachusetts. We are not that big a state with a population of just over 6.5 million. The largest health insurers have announced their third quarter earnings. They claim they had a good quarter because of 'seasonal improvements' and fewer health claims due to a sluggish economy.
That's a lot of hogwash to me. What are seasonal improvements? I mean I understand that there is less flu in the summer but people are active and they drive more, enjoy potentially dangerous outdoor sports, etc. And fewer claims because of a sluggish economy? People don't go to the doctor when the economy sucks? I can understand delaying your nose job until after you get a job but I'm not sure its covered by insurance anyway. But cancer diagnoses still happen. I do understand that people might be reluctant to go back to the doctor for a follow up and pay another co-pay when they are tight for money but people still get sick.

I like this quote from the article: "Blue Cross said it was pressing forward with its campaign for health care affordability, both by managing its own administrative expenses and by holding down reimbursement increases for doctors and hospitals." Hmmmm.... So BCBS is getting rich but hospitals and medical professionals are barely making ends meet. I like the idea that insurance companies are working on their own administrative expenses but dislike their reimbursement reductions. Insurance companies should not be making medical decisions.

Anyway, on to the numbers. Remember the state population of 6.5 million:

Blue Cross Blue Shield of MA - earnings of $78.9 million, up from $75.8 million last year
Fallon Community Health of Worcester - earnings of $12 million, up from $7.2 million last year
Tufts Health Plan didn't do as well as the rest - earnings of $52.6 million down from $59 million last year
Harvard Pilgrim Health Care also didn't do as well - earnings of $37.9 million down from $44.5 million last year

Total for third quarter earnings this year are $181.4 million, against last year's $186.5 million. So maybe they weren't quite as good as last year but they still made money. And they want to raise rates. I am not sure the exact numbers and think they are slightly lower than previous trends but they are still substantially higher than the cost of living increases most of us see in our paychecks.

I am in the 1.3%

I found this breast cancer risk assessment tool online. I took it based on me before my diagnosis and I was considered as having a 1.3% chance of getting breast cancer, vs. a norm of 1%. I took it again, based on my current age and pretended I didn't have breast cancer, and I would also have a 1.3% chance of getting breast cancer vs. a norm of 1.3%.

I then tried taking it and answering the first question and said I previously had a breast cancer diagnosis and the tool could not compute as it is not designed for those with a cancer diagnosis. We are in a special group, we are off the charts.

Then I started plugging in the information for friends and family members to see the impact of my diagnosis on them. I was surprised how much of a difference it made. Because of my diagnosis, their risk has increased by at least 50%. Go check it out and see how you can figure out your risk and everyone you know. Its kind of interesting to see how little factors have impact.

Yes I do know there are all those other little pesky factors that must have put me in that 1.3% instead of the 98.7%. Obviously I drank too much, smoked too much, ate too much fried food, used too much plastic, played in contaminated swamp lands, didn't take vitamins, etc. that put me in the wrong group. Grr.

Promising research

A few weeks ago I went to a conference and Dr Susan Love spoke about the latest in cancer treatment and research. One area she talked about, that I didn't explain well in my other post, was that one area of research is to look at what is in a cell's neighborhood that causes it to turn cancerous. The theory is, according to my tiny, non medical brain, that there must be something about the area a tumor is in that allowed it to grow instead of just remain a bunch of normal cells.

Now there is an article on current research on the cancer cells' neighborhood. If you think about it, it is fairly logical. I mean put a person in a tough neighborhood that lives on guns, gangs and drugs, and what are the chances they will not be touched by the bad influences? Its the same theory with the cancer cells - what are the bad influences that turn the cell into a cancer cell?

This picture explains it in better detail (and its prettier than a lot more text):

Also as part of the conference one of the doctors, who is head of the radiation oncology department, spoke about how important it is to treat not just the area of the tumor but a centimeter or so around it, but not much more than that. Treatment is becoming much more targeted.

I look forward to future research that expands on this new knowledge. Cancer research has been going for a long time but this is now looking like a new direction which might be promising. But I am getting kind of sick of waiting...

Make a list

When I was first diagnosed with breast cancer, I joined a support group at the hospital for newly diagnosed women. It was our introductory support group and we met weekly for seven or eight weeks covering different topics of life with breast cancer. Of that original group, there are five of us who still get together for coffee periodically. One of the members of the group was actually on her second breast cancer diagnosis. Then she had a recurrence a couple of years ago. Then we found out she died in mid-October. We didn't know. We were appalled. We never got to say good bye. We would communicate primarily by email. She used her work email address. She retired finally this summer. We think her husband didn't know how to get hold of us.

I spoke to another member of the group about this. She said she immediately turned to her husband and said 'don't forget to tell my friends if anything happens to me'. He wanted a list of who to contact.

We used to joke about my grandmother's 'in-case-of-death' envelope. She would write notes and put them in the envelope of things she wanted done upon her death - who to notify, her services, where things were, etc. If you do this for 20 years, you need to update it periodically. But when she did finally die at 96, we knew what she wanted.

I'm not planning on going anywhere soon but I will make a list too.

We left life behind

My husband and I took advantage of a long weekend to go away and pretend life is perfect for a couple of days.What this means is we took a mini vacation and ignored life's problems. We had an ocean front room on the beach and could watch the tide go in and out, the waves, the birds, the sunrise, the full moon over the ocean. We walked on the beach, found little bits of sea glass, and climbed on the breakwater. We ate unhealthy food (read 'fried clams') and watched stupid TV, read books, went shopping, and enjoy ourselves.

I did try to pretend I was a healthy person - silly me. That was stupid. I pretended that I could walk and go shopping. I paid the price for it - hello pain patches, pain pills, and ice packs. It didn't help that our lovely ocean front room had saggy beds so my back hurt even more.

Now that we are back we have found out that the world went on with out us. Mail piled up, the cat is very irritated - even though we got someone to feed him, and the house cleaning fairy forgot to stop by and clean the house while we were gone. But we decided we need to get away more often. A mini vacation from life and responsibilities was great. We will do this again.

So where do I fit in?

I whine about chemo brain and lack of brain cells overall. Apparently now I am doomed. After age 50, your brain starts to shrink. So where does that leave me?

There are things you can do to reduce risk of memory loss.

- Dance - its social and exercise. It makes you interact with people and you get physically fit.
- Exercise - it grows your brain. Who knew you could reduce your waistline and increase your brain size simultaneously. This takes multi-tasking to a new level.
- Start young - I've been fairly athletic my whole life and my mother used to feed us lots of vegetables and tofu. We still eat lots of vegetables to my husband's dismay.
- Eat right - I usually do. 3 meals a day, minimal snacking, lots of home made, very little prepackaged.

Well I don't dance... I think I no longer have the coordination. But I do exercise, I have been fairly athletic my who life. I don't eat prepared food. I think I did got to a fast food restaurant this year while traveling but think we ate semi healthily.

But my problem is I am starting with lack of brain cells already. So where do I fit in if I am starting from last place? Examples of my lack of brain cells in recent days are:

- I spent two days looking for the damn spray bottle so I could work on blocking some knitting. I couldn't find it ANYWHERE. I looked all over the house. I asked my husband. I couldn't find it. I gave up and bought a new one on the way home from work last night. 15 minutes after I got home I found it on the kitchen counter, tucked into the corner right in front of me.

- I got to the gym the other day with a pair of sneakers to work out in. I had two rights, from different pairs.

- I ordered something online recently. It showed up yesterday. I stood there and stared at the package. What did I order? I couldn't remember. Was it a mail bomb? I had no idea. Then I opened it and realized I had ordered it.

Need more examples? I can go on. These are daily ocurences.Feel free to ask my husband. He finds my lack of brain cells extremely humorous.

Screening tests - good or bad

Screening tests have come a long way in recent decades. Mammograms, as an example, were virtually unknown in the 1970's and started being suggested as a way to detect breast cancer by 1980. Then they became recommended annually. Then digital technology came along so they could detect even smaller and smaller cancers. And the rate of false positives went up - causing unwanted stress and unneeded biopsies.

Now we are at a point were tests are so good they are finding small benign 'nothings' or very early stage cancers that are so slow growing, they would never be an issue.

Using this chart, you can see the risks of getting or dying from some cancers:

We talk about the tests, screenings, and costs. But if you look at the numbers, what are the chances you are going to die from it anyway? So where do you draw the line on what you test for and what you ignore? Is it really worth it to have that every ten year colonoscopy if you have no other risk factors - like family members with the colon cancer?  Your risk of being diagnosed in the next 20 years, at age 40 is less than 1%.  As the article states, "The average woman has a 3 percent lifetime risk of dying of breast cancer, a low risk for a disease that women find so scary. But the chances of getting breast cancer do gradually increase with age and other circumstances."

I am not suggesting that we stop screening tests. I am diligent about getting them as suggested - with my medical history wouldn't you? But they are worthy of another look. The biggest killer in the US is heart disease. How do we test for that? We start with pulse and blood pressure readings which are quick and easy and can be repeated at minimal expense. But the costs of a mammogram, CT scan for lung cancer, or colonoscopy are more significant - both financially and emotionally when you add in the stress of colonoscopy prep, false positives, and unneeded biopsies.

I met a woman recently who had cancer. She said she would be out of touch for a few days as she was going to have a week of screening tests. We talked about them briefly. She said she wasn't really concerned about them but that they do induce either scanxiety or scanphobia in those who have to go through them. That little clench in your gut each time you drive to the hospital for yet another one - they really start to add up over time.

How can we take care of ourselves and catch 'bad things' as early as possible? Maybe we go back to eating right, exercise, maintain a healthy weight, blah, blah, blah (where have I heard this before?). I don't know. I just get to go to the doctor all the time.

More on 'owning' the genetic test

The other day I blogged about 'owning' the genetic breast cancer test. Now there is new outrage against Myriad Labs. They have developed another test, called the BART test, that can pick up further cancers and reduce risk additionally:



I completely agree with this argument. Myriad Labs is in the wrong here. But I do have a few comments:

- How the hell (pardon my language but its worthy here) did they get to 'own' the breast cancer gene? I have genes in my body - are we going to start selling them off to the highest bidder? This adds a really creepy touch to the Big Brother concept. This is the part that really gets me. I understand the basics of patent law but do not consider myself in anyway an expert. I just don't understand why they now own the gene. Maybe they own the test. But they certainly should not own a gene. Maybe this article has it slightly wrong. If they don't, we clearly need to have our laws catch up with genetic testing abilities.

- If you get the BRCA test, I think your insurance covers it. But now that this next test exists and it is a medical genetic test, shouldn't there be insurance coverage for it? Well, maybe not necessarily covered by insurance (insurance can't cover everything and this is actually for a small population but that's another discussion - perhaps tomorrow if I remember with my tiny chemobrain), but at a lower cost. $700 for a lab test that is done over and over again is a bit outrageous. From a business point of view, if your costs are that high that you can justify a $700 customer fee, you need to look at business efficiencies and cost reductions to be more competitive. Oh that's right, they own the gene so they don't need to compete.

- Why is the lab tech upselling the additional test? Are we going to start seeing sales people in the waiting rooms upselling additional tests? 'Excuse me, would you like to have a test to see if your grandchildren might have green eyes? It only takes 5 minutes.' Yeah, right.

- Genetic testing is optional and not required. Some people want it and some people don't - they simply don't want to know if they are more likely to get a specific ailment. Its a personal choice. I think the current recommendations are that women with breast cancer in their family get a BRCA test. Some women do, and some don't.

- The other thing about genetic testing is that just because there is cancer or whatever in your family doesn't mean you are going to get it. (Who was that scientist with the pea plants who looked at inherited traits that was part of a biology class decades ago?) You know what I mean. Two brown eyed parents can have blue eyed children even though it is a recessive trait. You can have a history of an ailment in your family but that doesn't mean you will get it. And a genetic abnormality can suddenly appear - you can be the mutant.

Genetics are going to tell us a lot in the future but our laws need to catch up so no one owns a gene or becomes a single source for a test at the risk of patient lives. And individuals still need to be the one to decide if they want a test or not. A technician should not become the sales person for the test. And no one should own my genes.

We don't get a 'do over' for life

When we are little we want to grow up and be a policeman/fireman/doctor/teacher/nurse/president/astronaut/professional athlete. Then as we get older we want to go live in the woods and become vegetarians/paint on the beach in Tahiti/save the world and have all sorts of idealistic rose colored glasses filled dreams. Maybe next you want to get rich so you can live the easy life in a nice house with nice cars, etc.

At some point you go to college, get a job, date, marry, children, etc. But then life starts to interfere. Maybe you don't get married until later. Or marry a jerk and then marry the right person later on. Or you never get rich. Or you don't get recruited out of college for the team of your dreams. Or you have children and are struggling as a single parent. Or find your college major will not help you get the job of your dreams. Or your health interferes.

At some point you realize your dreams are not all going to come true. You are not living on a beach in Tahiti and you aren't a millionaire. You aren't married with children. Are you filled with regrets? You shouldn't be or you need to learn not to be.

If I had a preference I would not have gotten cancer twice, maybe I would be richer, maybe I would be a size 6, 5'7" physically fit person who never has to work out and could eat chocolate and ice cream three times a day. Yeah, right.

Life is about learning to adapt. We all have a bit of Darwin in us as we learn to roll with the punches.
We do not get a 'do over' for life. We are stuck with how our cards are dealt. We need to learn to roll with the punches to thrive and survive. And still eat chocolate every day.

Time

The word of the day is 'time', or perhaps it should be 'sleep' or lack of it. This business of changing time twice a year is perplexing. I mean what is the point? All it does for us is mess up our sleep schedules for a few days. I did some research and found out a bunch of details on it:

The whole point of daylight savings time is to maximize the amount of sunlight later in the day and lessen the amount in the morning.  It was the rocket scientist idea (did they have rocket scientists them or were politicians just as smart then as they are now) when Congress approved the time zones that the train schedules had been following since the 1880's. Who knew mass transit would force time zones? It is optional now and was only mandatory in 1918 and during WWII - as it is supposed to save power. In 1966 it was introduced nationally but not everyone follows it. It was moved to its current 'optional' schedule in 2005 to save more electricity. But there has since been a study that says it only saves 1% at most. That shows what a smart idea it really was.

Gee that's a lot of interesting factoids but it does not help cope with reality. Since last night was 'fall back' I am supposed to be more rested today as I got an extra hour of sleep. But I slept really badly last night and am up early thanks to the (damn) cat who wants breakfast according to his stomach, not according to the clock. And have you ever tried to train a cat? Today I am not more rested which I can only assume is due to (ever-so) slightly overdoing things yesterday. Tomorrow I will move into crabby.

Tonight my body will say 'stay up until the old bedtime' which means instead of going to bed at 930 or so (I am an early bird) I will want to go to bed at 830 which is the bedtime for 8 year olds. This means I will force myself to stay up later than my body wants. Tomorrow morning I should get up at 530, according to yesterday's time, but that means I will wake up before the alarm. This will cause lack of sleep and I will end up being crabby - too bad I have to go to work all day tomorrow.

Small children and pets do not understand this business of time change. Explain that to any two year old who's nap and bed time are an hour later than they think they shall be. The two year olds turn into space aliens. The pets become annoying.

I will go spend my day looking at clocks and timers and try to figure out if they are on old time or new time. It used to be you had to reset everything, but now with atomic clocks, the internet, and DVRs which display the time, some things automatically reset themselves. And if your spouse goes around changing the time on some things and you do as well, do you actually end with clocks in the old time, the new time, and the 'turned back twice' time? Its as if you were living in three time zones.

I'm not really sure if we are on daylight saving's time or standard time. I never remember which is which. I just know I will be tired, crabby from lack of sleep, and not really sure what time it is for the next few days.

They aren't supposed to run out - they might lose customers

This has been a growing problem in the past few years that is finally receiving some news. At one point late in 2010 there were more than 150 prescription drugs in short supply in the US. This is not surprising. They are a manufactured item just like a lot of other things. Reasons for this were given as:

- source materials no longer available
- quality issues closed manufacturing plants
- no longer profitable to manufacture

Drug companies as we are aware are businesses looking for profits (well duh!). They are just like any other company. The problem goes back to the long development and approval processes to get new drugs to market - or so they claim.

Now the president is stepping in sign an executive order to: "to help reduce a growing number of prescription drug shortages while protecting patients from possible pharmaceutical industry price gouging."

I wish people could play nice in about this and keep their life saving medications available at all times. To all those people who are wishing for smaller government, can some one please explain why the pharmaceutical industry are all about profits and not about the patients who are actually their customers?

Poor customer service - i.e., shortages - will drive away customers. A doctor isn't going to prescribe something that has availability problems. If I am on a life saving medication and they run out, I may switch or I may die. Either way they lose me a s a customer. Hmmm....so maybe its in the manufacturer's best interests not to have shortages.

Getting a good night's sleep

A good night's sleep is supposed to be critical to our health, especially when we are ill or recovering from surgery or some other medical adventure. However the worst place to get a good night's sleep is in a hospital. I have had many 'wonderful' hospital stays - some planned and some unplanned. I never get a decent amount of sleep while I am there.

I think I can get more sleep squished into coach on a transatlantic flight full of screaming children - 9 hour Miami to London flight full of more than 120 children (really) while seated right in front of the flight attendants area where they sat and chatted.

Some of my good night's rest in the hospital have included:

Being admitted through the ER and having to wait until 4 am to get to an empty room. The nurse was very nice and asked me very few questions and said she would come back later to finish them so I could get some sleep. Ten minutes after she left, the blood work tech showed up for a blood sample, and then a visit by someone - every 20-30 minutes for the next few hours. The nurse was good - she didn't come back but everyone else did - the call for breakfast food, delivery of breakfast food, maid to sweep floor, someone for vitals, the doctor, etc.

After my hysterectomy, I had expected to recovery for five nights in the lovely hospital. Yes continuous interruptions every night - including the night they insisted on buffing the hall floor outside the patient rooms. You should have heard the nurse read the riot act to the poor man.

When ever I am hospitalized I try to minimize disruptions and noise by keeping my room door shut at all times. It is my prerogative and you bet I am going to use it. When someone walks down the hall, they always seem to glance into every open doorway.... I find it a horrible invasion of privacy. And with a closed door, a lot of the noise is minimized.

So why do they keep us in hospitals these days? Thanks to insurance companies we are kicked out as soon as possible. They are full of germs as well. And they certainly aren't quiet. I am always happy to tell the doctors that I want to go home as soon as possible and I can turn in to a horrible patient when cranky from lack of sleep. I miraculously feel 1000 times better as soon as I can get a good night's sleep.

Put it all in perspective

Yesterday I blogged/whined about the latest study on breast cancer risk and alcohol consumption and the point that moderate drinking helps prevent heart disease. This of course leads to confusion and rebellion by women with breast cancer. 'Damn it we had cancer, don't take away our wine.'

But a friend, who has a doctorate and works in public health made the point that:

'You are more likely to die of heart disease if you don't drink a few drinks a week - and heart disease is far more prevalent.'

This reminds me we need to keep all these studies (a/k/a attempts to confuse the patients) into perspective. When we hear about these studies, we need to ask a few key questions:

- How many people were involved in this study and over how long a period were they followed?
- How prevalent are the ailments being discussed?
- What is your actual risk of getting the ailment in the first place?


So if the study was done on ten mice and they were followed for one year, how much significance would you give it?

And in this case, heart disease is the number one killer in the US. Breast cancer, while not a minor ailment, is much lower on the list. 

Also, there is only so many things I can do/eat/drink/not do/not eat/not drink and retain my sanity. In this case, my perspective is that heart disease is more prevalent and I am opting for the heart disease side of the study. This means I'll drink.

Finally, all these studies tell me that there is so much that is not known about cancer and its causes as they keep coming up with conflicting results.

More confusion

There was a new medical study (of course we needed another one) that offers advice for women to reduce their risk of breast cancer. This study says even 3-6 drinks/week can increase a woman's risk of breast cancer. That seems straightforward - don't drink and you can reduce your risk of getting breast cancer.

But here's the confusing part:

"Because moderate drinking has been associated with a lower death rate for heart disease, Chen said women should weigh the risks and benefits of drinking based on their own health histories."

So make a decision: drink and you are less likely to get heart disease but are more likely to get breast cancer, or don't drink and you are less likely to get breast cancer but more likely to get heart disease.

To all those politicians who claim there is an evil plot out to get them. It is true. There is an evil plot out to get all of us. It is run by a vast conspiracy to confuse us all. They are hoping they can confuse us into submission as we sit there and try to decipher all those 'so called' medical studies and get stuck comparing their recommendations eternally. Which recommendation is going to prove to be right in the long run and won't be disproved by the next study - that is the real question we all have.



I give up. I'm going to live in a cave and be confused. But I can age wine in my cave (and I'll be out of the sun so I can help prevent skin cancer). And I'll eat fried food daily, with a salad on the side, and take my fiber supplements.

Who owns the genetic tests

As genetic testing gains ground as a way of learning if one is at greater risk of a hereditary ailment, shouldn't the testing be available at multiple labs? This would allow for competitive pricing and more importantly - a second test to confirm or refute the original one's result.

Using the BRCA - breast cancer gene - test (BRCA - say it as bracket but with an 'a' instead of an 'et' on the end so you don't have to feel stupid saying the letters B-R-C-A) to determine a woman's risk of hereditary breast cancer as an example, currently there is only one lab who does all the testing in the US. They hold a patent on it and are ordering other labs to cease and desist in offering the same test. They made $350 million last year and charge $3000 per test which may or may not be covered by decision. As a result of the test, you get a score telling you how likely or unlikely you are to develop the hereditary breast cancer. One end of the scale is very high risk and the other end is very low risk - leaving a middle full of 'maybes.'

If you get a maybe, you have no way of getting a second test. You have to rely on the one lab to have been accurate when making a life changing or life saving decision. I am sure they do their tests following all proper protocol but there is always a margin of error - a bad sample, lab tech having a bad day, etc - there is always a degree of subjectivity that can influence what should be a basic test.

As this article explains:


"The BRCA1 gene was discovered by a Berkeley research team led by geneticist Mary-Claire King in 1990. Over the next few years, scientists raced to sequence it. Myriad’s got there first. But did the company’s work in isolating and cloning the gene transform it from a “product of nature” (which can’t be patented) into an “isolated composition of matter” (which can)? The ACLU – together with about 150,000 patients, scientists, and medical ethicists – contends that the answer to this question is no.

In 2009, the ACLU filed suit against Myriad and the US Patent and Trademark Office, arguing that the company’s BRCA patents are invalid and unconstitutional. In 2010, a New York federal court decided in favor of the ACLU, but this July, that decision was overturned by the US Court of Appeals. “Cleaving” the gene from the body, that court found, renders it eligible for patent protection. The ACLU now intends to bring the case to the Supreme Court."

In the meantime people are making life changing or life saving decisions based on this one lab. And the real question it comes down to is are their patents hindering research that could help save lives of others? Researchers should work together but the patents that Myriad seems to be hiding behind are impeding the collaboration that could greatly speed up break throughs.

Genetics are not something that are made, they are not created, they are part of nature. So why can they be patented? When do patents become things that stop research instead of helping it? Why can't Myriad's researchers collaborate with others? Let me take a wild guess - someone is only interested in the money.