Thursday, March 31, 2011

The History of Breast Cancer

(Warning includes some early drawings of primitive surgery)

Fox News recently had a health segment on breast cancer through art through the years. I found it very interesting.

- Breast cancer was first known by the Egyptians in 3000 BC and there was no treatment.

- Treatment has only been more than a mastectomy in the past 100 years.

I found it incredibly interesting to talk about the history of such an ailment and how it was portrayed. Maybe I'll add their book to the list of books I should read and haven't gotten around to it. I find a level of frustration in that the disease has been known for 5000 years and only treated for such a short time and there is still no cure. The writers talk about there being a cure in the next 50 years but that is conjecture.

Wednesday, March 30, 2011

Further Proof We Are What We Eat

We all know we are what we eat. We need to to eat more fresh fruit and vegetables, blah, blah, blah, an apple a day keeps the doctor away. But now it is shown that how you store food is important as well. (Yet another) study reports that a fresh food diet flushes out BPA and other plastic phthalates from your body. These plastics are found in plastic containers and in plastic lining in canned food.

So the message is to eat your fruits and veggies and skip anything that comes in a can or plastic container. And don't store or heat your food in plastic - put it in glass, ceramic, or metal.

In the past few years we have eliminated canned soup from our diets. We do buy canned tomatoes for the winter season. We do buy canned beans but I will switch to dried ones now.

I do find it intriguing that you can flush out the bad stuff by eating the good stuff fairly quickly. The power of the human body to rid its self the bad things. But I'll go eat some fresh pineapple for breakfast so I can feel I started the day off right.

Tuesday, March 29, 2011

Where am I, what am I doing, how am I feeling?

Its time to break from the analysis of news and other random thoughts and talk about me again. I am approaching the season of 'all the check ups' again. I am just ignoring them - as my inner three year old handles it the best if I do. I have lots of doctor appointments in the next month or so.

I will see my radiation oncologist for a check up - she is actually very nice and is quick to recommend tests or other follow ups. She is Russian and shows up for her appointments in a white medical jacket over a funky outfit with outrageous shoes - usually high heels.

I will see the knee surgeon to find out what damage I inflicted on my formerly good knee while falling this winter. It only hurts when it gets twisted or I decide to do something complicated like climb stairs.

I will see my new primary care for an annual check up where we can discuss the woeful state of my body and how I feel as healthy as a horse (on its way to the glue factory at times). We can talk high blood pressure, headaches, fatigue, chemobrain, back pain, exercise, and more.

I will see my back pain doctor to talk pain and how I have been exercising at a gym and my new meds seem to be helping but standing around ever or walking on the beach have become very difficult.

I will see my therapist and meds therapist to make sure my sanity is still here. I will have a mammogram, bone scan, more blood work, and probably some knee bending tests. Otherwise, I am normal.

Otherwise, I am doing fine. Work is keeping me busy but not too busy. I recently enacted the self rule of no work on weekends or evenings unless mandatory. I get to the gym three times a week and have started going for walks again since the ice age has melted away.

We might even get away for a few days to enjoy some spring time. So I guess life is okay these days.

Monday, March 28, 2011

Getting the brush off from a doctor

So you aren't feeling well, so you go to see your doctor. Maybe its not your regular doctor because you got squeezed in to see someone or you are out of town. This doctor doesn't really know you. They may or may not have an idea of your medical history. They come in to the exam room and, because they don't know you, they make assumptions as they take their first look at you.

Here is an example of a woman who is overweight who went to for head pain and was told twice that it was all about her weight. No tests given, nothing. Just go home, you would be fine if you weren't fat. Such concerned care!

I felt this is the kind of reaction I got from the rude Dr. B I met with on my blood pressure a couple of weeks ago. He said to me what he had to say and didn't care what I set. He made assumptions that because I don't have a BMI of less than 25, my weight, combined with no exercise, poor eating habits, and too much stress in my life caused my high blood pressure. There could be no underlying cause. I am lucky that he actually decided I need some kind of follow up.

If a doctor walks in and makes assumptions and doesn't care what you say as the patient, its time for a new doctor. Dr. B will never be my doctor again. This is called voting with your feet. The woman in the article kept pushing and found out she had a series of small strokes. See how wrong the doctors can be?

The majority of medical professionals are good caring people. However there can always be ones who are having a bad day or just showing their egos off to the rest of the world who's actions can actually harm patients. Those are the ones we should run from. Our doctors and medical team should treat us as equals who should be listed to.

Sunday, March 27, 2011

Mammograms aren't as useful after breast cancer

Well, yip-diddy-doo-dah! After breast cancer treatment, they send you on your way in your life and tell you, 'be vigilant, follow up with your doctors, and get regular mammograms'. Now they say 'mammograms are not as useful after breast cancer - they are less effective/less sensitive. The study (of course another study) recommends ultrasounds, MRIs and possibly the new 3D mammograms which were just approved by the FDA.

Thank you for confusing me and stressing me out some more (I am supposed to reduce the stress in my life). I do know where I go for treatment, first of all if you have any previous history, you get the specialized super duper digital mammograms as opposed to the regular digital mammograms. And if there is any question, you get sent for an ultrasound right then and there. But an MRI as well? I'll have to ask both my doctors and my insurance company.

I know I have blogged about this before but the continued new studies and medical advances, while they show progress and advances, they also have a niggling way of tugging at the back of your mind - what if the treatment I got was proved to be ineffective or even harmful?

I know we have learned in the past centuries that leeches and blood letting is not necessarily the best treatment for the flu. Or that while bottles of a snake oil salesman's opiates sold in the 18th and 19th centuries will certainly make you feel better but wont due much for curing you as well. More recent treatments, such as treatment for lymphoma involving radiation to the chest has cured one ailment but resulted in breast cancer decades later in many of those treated. These were the best standard of care at the time.

But as medical science progresses, will any of the treatments that I have received turn out to be ineffective or have caused long term harm to my body? I just have to stop holding my breath and go about my life and hope for the best. Because there is no way of knowing what will be learned in the future.

Saturday, March 26, 2011

Why does this have to be so confusing?

I hate this. Here is an article saying if you were on tamoxifen and went off it before five years, you run a higher risk of breast cancer recurrence than if you stayed on it for the full five years. I was on Tamoxifen for just over two years and switched to Femara. My doctor told me that in her opinion, because I am menopausal (thank you chemotherapy), I should be switched to Femara instead of staying on Tamoxifen.

Cancer is confusing enough with out being complicated by news articles saying essentially 'we changed our minds'. Stop it please. Enough already. Thank you.

Friday, March 25, 2011

Malpractice Lawsuits

I have often wondered why some people are so quick to sue. There seem to be some who think the best resolution to a problem is to sue the person who bothers them - the neighbor who chopped down a tree that shaded their yard, the owner of the barking dog, etc. You get the point. They think someone did them wrong so therefore they must get even by filing a law suit.

Then there is the issue of medical malpractice. Doctors aren't perfect and medical science is not perfect either. Sometimes things don't come out right. Maybe there is an error during the procedure - if they amputated the wrong leg, took out the wrong organ, or operated in the wrong place - those are real problems and probably deserve some kind of compensation. But then there are the expectations of the patient and the end results. When I had gall stones I would get pain in the top of my left shoulder after eating rich food - after surgery I still get the pain but not as badly and it may never go away. Or after breast cancer surgery, I have shoulder pain which may never go away.

But when should you sue. If you ask me, almost never. But this article gives an idea of when you should or shouldn't.

1. If you recover from the procedure, your case probably won't be heard.

2. If you have a complicated medical history that complicates the procedure, you probably don't have a case.

3. If you receive standard care - it doesn't matter if the doctor had the bedside manner of a slug.

4. If your outcome was within acceptable risk - remember that disclaimer you signed? All surgery has its risks and you will probably always end up with a scar after.

5. If there are other ways to address the problem - meet with the doctor to get your answers, don't sue them.

And most malpractice cases are rejected. To all you lawsuit happy people out there, if you do sue and lose you could still have to pay the defendants legal bills - so you might be wise to think before you call your lawyer.

Thursday, March 24, 2011

Primary Care Doctors

There is a new rush of medical school students in to Primary Care as opposed to specializing. There has been a shortage of primary care doctors in the US for the past 30 years. Who can blame them with the salary differences? If you graduate with over $100,000 in debt, wouldn't you go for the highest salary to try to get rid of it as son as possible?

An off shoot of health care reform is an increase in demand for primary care physicians as well. But now more doctors are specializing so it looks like we will be seeing lots of young, new primary care physicians for a few years.

I met my new primary care last week to talk about my knee which hurts when I walk upstairs or wiggle my foot around or at other weird times. But when its hurts, it really hurts. I reminds me of how my other knee felt ten years ago after a day of skiing ended up as a toboggan ride down the mountain, followed by an x-ray, knee brace and eventually surgery. But that's an old medical adventure.

My new primary care was very nice. She is young. How young is young? She got out of medical school in 2007 and finished her residency last year in 2010. That means she was probably born after my first cancer diagnosis. She is also about 5' tall and probably weighs 100 lbs soaking wet. But she seems to know her stuff. Also, she'll probably out live me.

Now some young doctors you just want to smack them in the head and tell them how things work because you as the patient know more than they do about the hospital. I once had an intern tell me all about how he had heard that all the rooms at the hospital were private rooms. I told him I knew that because of my frequent stay plan there. The nurses rolled their eyes at him - all ego, no brains - but it was his second day so we could have cut him a break.

But this doctor seems to know more than me so I'll cut her some slack at my annual physical in May. In the meantime, I hope other people can find new, nice primary care physicians in the coming years.

Wednesday, March 23, 2011

Blogging, the Internet, and First Amendment Rights

I saw an article recently about how a blogger was sued by someone they blogged about. I don't know all the details but it was something about a person who had been hired by a public office to handle mortgages and refinancing and was allegedly involved in mishandling other real estate transactions in a previous position. The blog post resulted in the person losing their job so they sued.

This made me think about the whole libel, copyright, freedom of the press, and First Amendment rights issue. If you type the words 'blogger sued' into any search engine you will get a whole list of results - including the case of the Benihana restaurant in the Middle East who sued over a bad online review. You will also find cases which include ones where copyright enforcement agencies make a living suing bloggers. And you will find out that the Internet is the wild west of information these days. There are many precedent setting cases and issues out there that have been resolved. Our current laws are similar to the Dewey Decimal system - comprehensive until technology exploded in the last 20 years so now full of big holes.

I found one article, which I cannot find again, that discussed this issue where bloggers should act like journalists where they need facts to back up what they say and be careful in phrasing - unless proven, it needs to be an alleged action, etc.

How does this affect me? I write my opinions about things. I write my reactions to articles. I write about my daily life. I write about good and bad situations. These are my opinions. Someone could argue differently.

But then what about all the websites where we are asked our opinions on restaurants, purchases, businesses, etc. This is like giving a good or bad job reference. But if someone solicits our opinion shouldn't we provide it honestly? If I have a bad restaurant experience I will write it on their website or OpenTable, Zagats, or other online service, especially when they ask me. But I will also write about good experiences.

On the issue of lawsuits, why are people so quick to sue? If someone has a bad dining experience because of poor food or service, can't they honestly write about it? If someone disagrees with an article, can't they write their opinion in reply - provided they properly reference, link to, and cite the article?

How does the law affect bloggers from writing about their experiences and opinions? Are we journalists or are we writing for the Op-Ed page? I am not sure but as we live in a litigious society, unfortunately we need to be careful.

Tuesday, March 22, 2011

Participatory Medicine

I like this idea. Basically patients are becoming advocates and activists. Pharmaceutical companies are being urged to step up as well. Participatory medicine means we all participate. We ask questions, take notes, share information - we participate as patients, doctors, drug manufacturers, hospitals, etc.

I just signed up at the site - Unfortunately it is not taking new patients right now because of technical issues but I could sign up to be notified when they start taking new ones. I have been looking for more information on side effects and issues and other experiences with medications as I am on just a few.

Other sites which have areas for people to comment on their experiences with a drug are often very negative. People are much more likely to write in complaints than compliments as a rule. But seems to have a mix of positive and negative and you can see information from a specific patient grouped together. It all makes more sense. And it includes non prescription vitamins and supplements as well as over the counter and prescription ones.

Patients shouldn't be passive, we should be active in dealing with our issues. If something doesn't work, tell your doctor. If you don't like your doctor, find a new one, get a second opinion. Act, don't sit.

Monday, March 21, 2011

Telling your story

I never thought of blogging until my second cancer diagnosis. I mean with the first one, there was no internet (only the Arpanet) and computers were hidden away in computer labs frequented by geeks only. My reasons for starting my blog were totally self serving - I didn't want to have to talk about how I was doing over and over again with people on the phone or to send out emails regularly. I just started writing in my blog and I am still writing.

Storytelling, whether oral or written has therapeutic effects. I quote from an article this morning: "There have been more than 200 studies over the past 20 years confirming the benefits of putting one’s medical story into words.".

People can argue with medical and scientific facts but they listen to or read stories about problems similar to theirs. People also benefit from writing or telling their stories about their problems - whether medical, emotional, physical, or other.

I work for a local non profit which provides support groups and wellness activities for those touched by cancer. We have had a writers group for several years now. We have also been approached by a journalism professor who wants to offer another writing class based on the need she sees in her classes. She has students that write about their friends and family members with cancer or other diseases and they just write and write and write to get it out of their system. It is their coping mechanism.

Oral storytelling has been around for thousands of years. As literacy grew over centuries, then the daily habit of keeping a journal or diary appeared. Now with the internet, we have blogs which are our new way of telling our stories.

Now I am still blogging. If I was healthy, would I stop blogging? Maybe. I still have a story to tell so I am still here. Maybe I can help others with my blogging while I help myself.

Sunday, March 20, 2011

Honesty = credibility

This morning I have two issues where a bit of honesty would provide credibility.

1. In California there is a lawsuit against Bristol Myers Squibb regarding fraud and kick backs to doctors. If doctors prescribe their drugs, instead of what is best for the patients, allegedly they would get kick backs such as cash, gifts, and happy hours with the LA Lakers.

2. In Boston, there is a lot of complaining going on because Blue Cross recently paid out a multimillion dollar golden parachute to its former president of five years. Even the doctors are now getting up set. Its hard to feel empathy for a company who says they are trying to keep costs down and then provides such big payoffs to its executives. Is it a non profit? If so, Blue Cross should act like one.

I feel both of these organizations are not being honest and are therefore losing credibility in my eyes. Even the LA Lakers, by allegedly participating in the alleged happy hours, lose credibility. The only ones I feel sympathy for here are the doctors who complain to Blue Cross.

Children are taught to be honest and tell the truth and people will like them and will have friends. Some how some people skipped that lesson and now are losing their supporters along the way.

Saturday, March 19, 2011

Blue Shield Backing Down on Rate Increases with $1 Billion in Revenue

Back in January, I blogged about Blue Shield in California was proposing 59% rate increases - they had increased costs because sick people were using their insurance and healthy people were dropping their insurance.

Now they are backing down from their rate increase, saying that they are willing to take the hit in this bad economy.

"...the decision to not raise members' premiums this year will cost Blue Shield $35 million to $40 million in lost revenue.

"By agreeing not to raise rates this year, we are helping to make coverage more affordable for our members during tough economic times," said Blue Shield of California CEO Bruce Bodaken, in a statement. "It's a financial risk for us, but a risk that's worth taking."

Still, the company rakes in about $1 billion in revenue from its individual insurance market plans and a total of about $10 billion annual from all of its insurance products, according to Epstein.

Hmmm... if they take in $1 billion and might lose $40 million, that's a 4% loss. Or a 0.4% loss on $10 billion in revenue. My sympathy is slim. They are thinking of the bottom line, not the patients. And did I say this was their third rate increase since October of last year?

Their biggest complaint is healthy people have dropped their health insurance as the economy has sagged and jobs have been lost. So insuring sick people is hurting them. I do not extend them my sympathies here.

Its about the patients, not the bottom line.

Friday, March 18, 2011

Its a matter of perspective

When did cancer go from being the 'Big C' as in you are going to DIE to 'oh, I've got cancer but I'm going to climb Mount Everest next year after chemo'? I'm not sure but I think I have been along for the ride.

In 1981 cancer was very scary. It was a death sentence. The only people you knew with cancer were grandparents who were old anyway and a few small children and younger adults who were going to tragically die as if they were in a romance novel. You weren't supposed to live. When you were diagnosed, you were supposed to go off into the sunset prematurely and sit around balding and palely fade away.

Some where along the way, we got cancer walks, runs, bike rides, road races, walkathons, buttons, bracelets, colors for every kind of cancer, fundraisers, awareness raisers, donation requests, pink football helmets, Pinktober, and more. Cancer is everywhere but now it is recognized everywhere. People talk about their cancer, they talk about other people's cancers, they fundraise to help their friends pay their bills, they participate in the walks, runs and the other activities.

We have words to describe us now: survivor, battlers, warriors, with hope and inspiration. But sorry I don't like this part, skip the labels please. We are people living with cancer, not dying from cancer. Its a matter of perspective and living our lives. We are not battling, surviving or going to war. We are living.

Thursday, March 17, 2011

Radiation and thyroid cancer

With the disaster in Japan, people are desperately trying to find potassium iodine tablets to prevent thyroid cancer. Thyroid cancer patients are often told it is the 'good cancer'. I'm not kidding - we just want to slap those people.

But if you are going to get a cancer, thyroid cancer has a relatively good prognosis. Most thyroid cancers, except anaplastic which is always staged at IV due to its aggressiveness, are relatively slow growing. However once diagnosed it requires a lifetime of vigilance to ensure no recurrence as they have been known to occur as long as 45 years later.

I have been watching the news where in Japan there are dosing people with potassium iodine to prevent thyroid cancer. And the news in the US where there is a run on potassium iodine as well. Should I be concerned if thyroid cancer is the biggest risk? I know extreme exposure to radiation results in radiation sickness followed by organs dying off and then death of the patient. But if I already have had thyroid cancer and don't have a thyroid, is it a big deal? Since I don't have a thyroid would radiation go quicker to other organs? I don't know but I do know I don't need potassium iodine tablets. I'll go stock up on toilet paper instead.

Wednesday, March 16, 2011

Is a clinical trial that good?

People with late stage or recurrent cancer are often very hopeful to get into a clinical trial. But clinical trials are randomized. This means if you get into a clinical trial, it doesn't mean you are getting the new treatment. They are done as a blind test - no one knows if you are getting the new treatment or the current standard treatment. And there is no guarantee if the new treatment is any better than the current protocol.

I think I have blogged about this before but this article explains the whole process better than I probably could.

Clinical trials are very important and should not be avoided. In fact, we would probably be better off if we participated in more of them. I do not mean to cast doubt on their importance but I think it is important that people understand a clinical trial may not give them the new treatment and that the new treatment may not be any better than the current protocol.

All that being said sometimes clinical trials are the last hope for people. They offer a chance for a new treatment. Sometimes that is the only hope - that the new treatment is better and will cure them or slow tumor growth.

Tuesday, March 15, 2011

On expecting the unexpected and being prepared

In the midst of this disaster in Japan, where earthquakes and tsunamis have started an unprecedented series of disasters, we are reminded why we have to expect the unexpected. Japan is the country which has the latest and greatest in building codes and tsunami warnings, their nuclear power program seems to be succumbing to the crisis.

My husband spent 20 years in the US Army Reserves, including 2 years mobilized recently and six years of active duty between college and business school. Before that he was an Eagle Scout and a Boy Scout camp counselor. He can tie complicated knots and set up a canopy using a tarp and a few tent poles all by himself. He is always prepared. He is always trying to convince me why we need to be prepared for an earthquake, blizzard, hurricane, week long power outage or some other disaster. I often scoff at his need to be so prepared.

But then along comes a disaster such as the one in Japan, or lets not forget the devastation in Aukland, New Zealand, Haiti, New Orleans and countless other locations. His logic seems to make sense. And a small generator, flashlights everywhere, 5 gallon water jugs, and MREs in the basement offer some sense of comfort.

This is why we have health insurance - to expect the unexpected. If we are uninsured the result of a poor medical diagnosis is more often going to result in an unhappy outcome. Maybe being prepared isn't such a bad iea.

Monday, March 14, 2011

Why are health care costs going up?

This is a subject of debate. The current 'pet peeve' for everyone around here is the pay given to non profit health insurance companies executives. But as this article points out, the real causes of the increases are (based on the increases from 2004 to 2009):

1. Hospitals - 33%
2. Doctors - 19%
3. Prescriptions - 10%

For hospitals it should really read 'chronic illness and prices of hospitals and doctors and medical advances and discoveries and technology'. Its those pesky medical advances that cost a lot of money. Face it, how much do you think an MRI machine or a CT machine or a 3D mammogram machine costs? What about service, calibration, and maintenance to ensure it is working correctly? These all add up. I think an MRI machine is a few hundred thousand a minimum and I could be off by a '0' for some other machines.

If a new technology becomes available with a new way to diagnose or treat something, why shouldn't we use it? Hospitals should be able to offer the latest technology and treatments to patients.

Chronic illness is another big cause. We are living longer due to the medical advances but we aren't cheap. Many illnesses that were a death sentence before are now expensive but chronic. I haven't checked recently but my medical expenses are probably around the $200,000 annually these days. Not including the year where I had chemo for five months which was probably significantly higher.

Doctor costs are cause for 19% of the increase? How much of that is not higher salaries but increased malpractice insurance costs? I would wonder about that split.

Prescription drugs only 10%? I believe that the biggest increases happened in the 1990s when so many new drugs were launched. I would hope then that as patents expire that the availability of generics would push that proportion down.

Apparently administrative costs which includes pay to board members is only responsible for 5% of the increases.

Hmmm... shall we stop the medical advances and stop having people live so long with chronic diseases? Cancer is now considered a chronic disease in many cases. Or do we figure out a way to balance this all out? Or just stop getting sick?

Sunday, March 13, 2011

I'm gloating - he was wrong

To the pompous Dr. B with the inflated ego syndrome, who has has been 'collecting' cases of high blood pressure in patients for 30 years and blamed me for my high blood pressure, I am very pleased to say YOU WERE WRONG! I didn't even go to medical school and I think I figured this one out.

My thyroid levels are always monitored - since I don't have one. I have had some ups and downs over the years. My doses of thyroid hormone are adjusted at times. I had blood work done on February 18 while waiting for my husband to get through his colonoscopy. It was actually done three weeks early. I hadn't realized they were checking my thyroid levels I thought it was just blood work for my oncologist's office.

Yesterday in the mail, I got a note from my endocrinologist regarding my blood work. One of levels has been at the bottom end of normal which is 0-4.5 but now all of a sudden it is 4.3 at the top end of normal. While it is still in the normal range, the size of this change is significant in itself. And one of the key results of changing thyroid levels is high blood pressure! It especially affects the bottom number of your BP which is what has been so high for me. It can also cause fatigue, sleep problems, and inability to lose weight.

So, I think I have solved this problem. I will call my endocrinologist on Monday and talk to her about my blood pressure, thyroid levels, and other issues. Then I would love to call Dr. Pompous and tell him he was wrong. But that would be gloating and I would probably only get his office staff anyway. I think my blood pressure is lower already.

Saturday, March 12, 2011

When business interests come first

If you have wondered about why drugs cost so much? Here's an example where a pregnancy drug is going from $10 per dose to $1500 per dose.

It is a form of progesterone that has been available through compounding pharmacies for decades but now the FDA has approved a branded version which will be for sale for $1500 for each dose. The owners of the branded version will make lots of money. Compounding pharmacies will face lawsuits if they continue to offer nonbranded versions of the same formula. Doctors will be forced to prescribe the branded version because it has been tested and proven.

I don't blame the FDA here. Some one wanted to offer a branded version and jumped through the FDA's hoops to get the approval. I don't blame the doctors here either. If you were practicing and concerned about potential malpractice suits by telling patients to get an untested drug when there is a tested version out there, which would you prescribe to your patients?

I don't blame the insurance companies here either or the pharmaceutical companies. I blame the system that allows the business interests to come ahead of those of the patients. If something has been made available for years cheaply, why can some one brand it and offer it for such a high price? On the other hand, why can't they brand it either? I mean if they have a special compound and want to protect it, why not? Then there is the issue of lawsuit ready patients who are ready to sue at the drop of a hat.

But why does the system allow business interests to come ahead of the interests and health of patients and controlling costs? We are capitalists but shouldn't health come before wealth?

Friday, March 11, 2011

Living a long time with cancer

Ask anyone who has had cancer and there is no diploma for graduating from the cancer life, you are stuck with it for life. After living with cancer for nearly 30 years (yes really - officially 30 this summer) and only having one other pesky little diagnosis nearly four years ago, I can tell you I know all about it. In fact, I am not sure I know how to live without cancer but that is another story.

In case you have been sleeping for the last 24 hours, another study (yes another but this one is a tiny bit useful) was released by the CDC, officially called The Morbidity and Mortality Weekly Report on Cancer Survivors - United States 2007.

Since I know everyone is so happy to slog through a combined medical/government document, I will recap. People are living longer due to earlier diagnosis, better treatment protocols, and an aging population.

I have three tiny problems with this article
- one it took four years for it to be released - like all studies it talks about things in the past and not current
- I don't like the term survivor - its a label, please use 'people living with cancer' instead.
- I can't figure out the first chart. Is that age at diagnosis or age now? I assume age at diagnosis.

But I digress. On several levels this is very encouraging that people are living longer with cancer and that the importance of recognizing the long term needs of life with cancer are being openly recognized:

"The increasing number of cancer survivors underscores the need for medical and public health professionals to address the potential long-term and late effects of cancer on survivors' physical and psychosocial well-being, provide survivors with coordinated care, and promote the importance of 1) healthy behaviors (e.g., smoking cessation and physical activity) to reduce the risk for new or recurrent cancer and 2) early detection to increase the likelihood of survival with new or recurrent cancer."

But we still do not have a cure. And the fact that cancer treatments and protocols often leave us with physical limitations and long term health consequences. For example, it is very common that Stage IV cancer people are given CT scans every three or four months to monitor their insides. However the life time risk of radiation exposure does not appear to be a consideration for this group of people. If CT scans are to be avoided because they expose the patient to 200 times the radiation of an x-ray, and then they are given so frequently, is the assumption there that it is a non-issue as the lifetime expectancy of the patient is considered to be decreased as they are stage IV?

However, it is nice to know I am not alone. There are 1.1 million people like me who have lived with cancer for over 25 years.

Thursday, March 10, 2011

Don't blame the patient

Yesterday I went to my oncologist, or actually to my oncologist's nurse practitioner as she is out on maternity leave. My blood pressure was a 'tad' high. She did not like that. Especially since it has been steadily rising for the past six months. She called my new PCP who I haven't even met yet who agreed I should be seen by a doctor. Since I was complaining of headachy/pressure she also mentioned imaging of my head - not something to look forward to.

My new PCP couldn't see me so she sent me to see another doctor in the same group, Dr B. He started by telling me that he 'collects' cases of high blood pressure with underlying causes. He thinks my blood pressure is because I am overweight, eat badly, don't get enough exercise, have too much stress in my life, and eat too much salt. I tried to tell him:

- my weight has been stable for the past year even though I have been trying to lose weight.
- I don't eat badly. In fact I eat lots of fruit and vegetables, don't eat processed food, make most things from scratch, and use skim milk and reduce fat foods.
- I go to the gym 3x a week and go for walks regularly.
- I don't cook with salt.
- I have been trying to reduce stress. The higher stress in my life for the past month due to meds changes and my BP has been going up before then.

He dismissed it all and told me a story about a guy who came to see him and had high blood pressure and basically had been living as a couch potato. He lost 50 lbs, ran two marathons and came back six months later and still had high blood pressure.

There is no high blood pressure in my family at all. In reply, Dr B also told me I might just be genetically predisposed to have high blood pressure.

He then gave me a handout for healthy eating. It actually is not helpful as I have a five page print out of an article - page 1, page 3, page 5, page 3, page 5. So I didn't quite get the healthy diet that he wanted me to have but didn't realize this until I got home.

As a follow up, I am supposed to measure my BP at home every day for six weeks and write it down and switch to his healthy diet. Then I am supposed to meet with a BP specialist to see what my real BP is.

I left very aggravated. He didn't care what the root cause was other than to blame me. I am glad he is not my new PCP. I think he raised my BP just by blaming me. As patients we go to doctors to find out what is wrong with us, not to be blamed. Its not my fault I didn't fit into his 'collection'.

But otherwise, the oncologist nurse practitioner thought I was fine.

Wednesday, March 9, 2011

My plans

My short term plans are as follows:

- Any thoughts of a vacation to Egypt, Libya, or any place currently experiencing political unrest, are canceled. I did a report on Egypt in elementary school and have always had a vague plan to visit, but for now, I will keep it as vague.

- As a result of political unrest, gas prices have caused me to forget any plans to go on a driving vacation this year. Currently we are scheduled for a weekend in Maine and another in VT with a few more days in NY. But nothing farther. Well maybe.

- I will get my hair cut this week. It needs it. My hair cut has been canceled twice because of my scheduling conflicts and I feel like I am looking through my bangs (but that's better than being bald and wearing a wig so I guess I can live with that).

- I will continue to speak up to people who don't 'get it' when I talk about health issues. I am sick of being asked repeatedly and responding repeatedly about the same thing by people who just don't get it. I will no longer be quiet and polite - be warned.

- I will also continue to correct people who don't understand the difference between remission and NED (even though I am not a medical person). Remission is for systemic cancers such as lymphoma or leukemia that goes into remission - meaning temporarily, for months or years, it is in control. Remission doesn't happen with solid tumor cancers. NED or No Evidence of Disease is what they use for solid tumor (breast, bone, colon, etc) cancers meaning they can't find any in your body, you show no evidence of it. And those people who think they can use the word 'cure' or 'cured' when talking about cancer status, just shut up. There is no cure for cancer. Once they give you a cancer diagnosis, the best they can say is NED or remission meaning they just can't find it in your body.

- I will stop volunteering as I don't have enough time to do everything I want. I am over committed as it is.

- I will remember to bring a list of questions to my oncologist today so I can get the answers I need.

Perhaps I am a tiny bit cranky today but that is allowed sometimes, especially on days that include doctor appointments.

Tuesday, March 8, 2011

Back pain and tests

It turns out there was a study (like we need another study) that says back scans can find things that aren't causing pain. Well, I know medical scans can find all sorts of thingys (very technical I know) that are there inside our bodies but don't mean much.

I happen to know I have a thingy in my lungs that has been there and is stable for about 30 years - and I have an annual x-ray to prove it. I also have a couple thingys (also known as hemangiomas) on my liver. They are just fine. They can hang out but they won't kill me.

Most people's backs are not perfect. Heck, most bodies aren't perfect. (If you have a perfect body, let me know and we'll figure out how you can become a fashion model or professional body builder or something.) Now we have these high tech procedures and tests that uncover things that may or may not mean anything.

Two-thirds of Americans suffer back pain at some point and for most it will go away with treatment within a month. I passed that point a long time ago. When my back started hurting (which I documented here - the (delicate, feather weight, 15 lb.) cat sat on my stomach and made my back hurt November 29, 2008. After living on Advil for a month I went to the doctor who sent me for an x-ray and then to another doctor who sent me for PT which didn't work and I ended up in the pain clinic with an MRI which found degenerating disks.

So in my case, the MRI found out something that was important. But just because a test finds a thingy, don't jump to conclusions. Remember, our bodies aren't perfect, 80% of breast lumps are benign, and sometimes we just hurt for insignificant reasons - like stubbing your toe or something.

Monday, March 7, 2011

Doing things that are good for the soul - at a price

Yesterday I finally got to go do one of my favorite things - walk on the beach. It was wonderful. I went barefoot in the sand (even though its March and there were snow drifts). It was what I needed. My husband even went with me - he had said he needed to go into the office but I convinced him to come with me and he enjoyed it as well.

We went right after low tide and were there for just over an hour. There were horses, waves, tide pools, dogs, seagulls, and a few other people taking advantage of the day.

The price was that I can't walk in loose sand. It makes my back hurt. And my hip, and ankle, and knee hurt. I hobbled back to the car. And sat on the couch for the remainder of the day with pain meds (how many episodes of Bones, CSI, or CSI:Miami can one watch in a row without rotting your brain?). But it was worth it. I want to go back today but its raining. Maybe next weekend.

Sunday, March 6, 2011

How to contain rising health care costs?

Here's the solution - stop going to the doctor. Every one asks why the health insurance premiums are going up so much.

Republicans say its because of federal health care requirements but the insurance industry says that only accounts for one percentage point of the 40 (or more) percentage points being requested in some areas.

Instead the insurance industry says that the reasons are:
1. health care is expensive
2. people are getting sick and using health care

Well, let's see - why is health care expensive? Maybe because they are making us better? Maybe because things like medical school is expensive? Maybe because the pharmaceutical industry is focused on a marketing driven business model (but lets not go there this early in the day)? Maybe because things like keeping hospitals clean, or paying for highly trained people to perform life saving actions regularly?

Then there is issue number two - people get sick and are using health care. I'm sorry but that is what health insurance is for - to pay for your care when you get sick. This leads us to two choices - stop getting sick or stop going to the doctor.

Hmmmm.... I'm sorry but I don't agree with either of these groups - the federal health program or the insurance companies. In the long run, the health insurance program will lead to insurance for more people and prevent bankruptcies or unnecessary deaths when people can't afford treatment. And insurance companies can't blame people for actually using their insurance. All those people who are previously unable to get health insurance because they were sick are now getting insurance and using it.

I think the whole system is broken. But then my politics aren't important here and I'm not an insurance company executive.

Saturday, March 5, 2011

Please choose: Activism vs. Cancer Research

If you had millions and billions of dollars, what would you spend it on? Lots of rich people like to spend money on getting things to go their way - whether its giving money to help elect the politicians who will make laws so they pay less in taxes or so their companies are subject to less restriction or whatever. They choose the activism route. Also rich people spend money to make their lives easier - the fancy car, the nice houses, the fancy vacations all over the world.

How much money do they give to charity? Actually well off people do usually give money to charity. But how about $100 million to fund a cancer research center in Cambridge, MA which is a unique combination of oncologists, biologists and engineers, etc? How cool is that? I have heard about this research center for a while now, but I didn't know the whole story behind it.

Kudos go to Mr. Koch for helping fund this unique cancer research institution. I have great hopes that a new focus in combining the different types of researchers into one center together will bring new ideas together. We need more money spent on cancer research and less on cancer awareness and I think this is a great example of it. There are plenty of political activists out there but there is not enough cancer research.

Friday, March 4, 2011

The Medical Run Around

I only need a new prescription for a medication I have been on for about a year and a half.

Feb 4 - I go to my doctor's office and tell him I need a new prescription. Using the electronic medical record system, he puts it in the computer so it goes directly to the local Walgreens where I get my prescriptions.

On Feb 18, I called my doctors office to ask for the Meloxicam prescription and another one to be filled through mail order. Later in the day I went to the pharmacy to pick up my prescription. Guess what - it needs prior approval. They said they would contact my doctor's office to get this and it usually takes a couple of days.

On Feb 21, I asked the Walgreens and the prior approval had not been received. So I called my doctor's office again and left a message.

On Feb 23, I called my doctor's office again and spoke to some one who assured me she would look into it and take care of it.

On March 3, I called Walgreens and the preapproval still was not there.

On March 4, I called Caremark who handles the prescriptions and preapprovals for Blue Cross and was told that they had faxed the form to my doctor's office on February 23.

Later on March 4, I called my doctor's office and asked where was the form and why it was taking so long. I was told the prior approvals are fairly low on the totem pole because they have too much to do and they usually get them done once a week if not more frequently. They have also tried to call in to the number to get an approval over the phone but that takes 45 minutes of being on hold. But they did track down my form and got it signed and faxed back to Caremark.

I then called Caremark and asked if they had it yet. They said, oh no that takes 3-5 days for a decision either way. Was there anyone I could speak to about the system? No, but I can fill out a form and send it in. Caremark just processes the claims and prior approvals for drugs as specified by Blue Cross.

I then called Blue Cross back and there was no one there I could speak to about the decision. All the prescriptions issues are handled through Caremark.

So it is now a six week procedure to get a prescription approved and filled. This is the insurance company creating the medical run around and forcing more work on to over worked nurses and medical practitioners just to make sure that drugs are being used within guidelines and appropriately.

The drug I am requesting is Mobic (Meloxicam) it is an anti inflammatory. Apparently I am not old enough to need it in the mind of Blue Cross as it only requires prior approval for patients under the age of 55.

I honestly do not think its the doctor's fault that they have to justify a prescription and fill out a form. I see it as a way to have a double check to make sure drugs are being used appropriately and not being prescribed inappropriately, etc. I don't see it as a problem for the local pharmacy, Walgreen's in my case, their instruction is to send it back to the doctor and have them put in the request for the prior approval. I can understand Blue Cross wanting to insure they are paying for drugs being used appropriately.

What I cant understand is that if the Walgreen's computer is connected to the Blue Cross computer which is connected to the Caremark computer and the hospital computer, why does this have to be done by hand or by phone? Why can't it be done online? I will run out of pills in the next few days and will not be a happy camper.

Its an anti-inflammatory that you need to keep built up in your system. So if I go off it for a few days, it will put me behind and in pain. This is a clear case of the medical run around and if anyone who reads this wants to make a big deal about it and put it in national media or something about how insurance companies are running the medical centers and patients into the ground, feel free to let me know and I'll be happy to talk in more detail. Today you can sign me a pissed off, cranky patient who is sick of big conglomerates.

Now its 710PM and my prescription is ready. What happened to the 3-5 business days?

Call me confused - again

This is a video of my knee surgeon who fixed up my knee a few years back talking about tennis elbow and golfers elbow. He says rest and therapy and then possibly cortisone and if its six months or a year later, then surgery. I am confused. WAAHHH! Didn't we learn yesterday that eccentric exercise is better to heal these injuries?

When I saw him in about 2001, his specialty was knees. Apparently he is all sports medicine now. I may have to give him a call in a few months if this is still a problem. My knee barely has any scars but I don't think I'll let him repair my ACL that wasn't fixed ten years ago. Thats big time surgery that I am not ready for.

Thursday, March 3, 2011

Do not change your mind!

I am talking to you medical people out there who take care of us patient people. I know you do all kinds of studies and trials. That's fine. Progress is good. But please do not change your mind and tell me the treatment I had was either wrong or useless. Please work on the delivery here, and tell us that what was done previously was not wrong or useless but the best possible treatment at the time. Progress has allowed the development of improvements. If you tell us patients that that the treatment they received was wrong or useless, we are not happy. It is in fact upsetting. So stop it!

I was diagnosed with tennis elbow in November. I was given a cortisone injection and given a wrist splint, told to rest it and sent for PT/OT. After a few weeks I was sent home with a series of exercises - stretch out the tendon and work up my strength and blood flow to the area by raising and lowering 1lb. weights. (Yes - one pound weights - look at me at the gym with everyone else pumping iron and I am working with one pound weights. Just kick some sand in my face and move on.)

Now its back. Not as bad as it was and I don't call it tennis elbow, but cranky elbow. There is a new study showing that skipping the cortisone injection and rest are actually the new solution. So I wasted some time trying to 'heal'. They suggest eccentric exercises - I'll have to research this one and figure out what I should do. In the meantime I'll keep pumping my 1 lb. iron. But please don't tell me you are wrong again.

Wednesday, March 2, 2011

Waiting for the medical magic wand

Still waiting. Yesterday I went back to my stupid ankle doctor (my ankle and I are stupid, not the doctor - I sprained my ankle by thinking I was smart and could look over my shoulder while walking). The last time I saw her six weeks ago she gave me a cortisone injection in my ankle to see if it could help drain some of the fluid left in it when the ligament and tendon tears healed up. It worked for a bit but then my ankle started hurting again. Her response to that was that's about the length of time that an injection will work.

The only thing she can do is if I still have pain in another six months (two years from the original injury) she can go in with a scope and clean it out. I have had enough surgeries thankyouverymuch. So as there is still no medical magic wand to heal me, I am stuck with a swollen painful ankle.... It matches so many other body parts with injuries that decline to heal - the partially torn ACL that decides to act up periodically and can only be cured by big time knee surgery, or the tennis elbow that doesn't like going to the gym and forces me to wear my stupid wrist brace, or my bursitis hips that also would prefer a life of lethargy.

Her parting words to me were to work through the pain and ignore it - the best way to heal it. Can't I just have a magic wand instead? One that works on cancer and all my other ailments too please.

Tuesday, March 1, 2011

Unsure of my reaction

I read this article if you had or have breast cancer and figure out what you think. Basically it says they know what are the causes of breast cancer - their are the hereditary ones that we can't control - family history, late menopause, or early first period. Nothing can be done to influence these. I have no family history of breast cancer - unless you can count one of my mother's second cousins 30 years ago. I did not start periods young and I didn't go through menopause until chemotherapy did that for me.

Then there are the lifestyle factors - too fat, not enough exercise, too much alcohol, or hormonal therapy. Of these body weight and hormonal therapy have just as much influence if you will get cancer as the hereditary factors. I wasn't fat until I gained weight after cancer and chemo, I used to be relatively active - skating, skiing, walking, snow shoeing, hiking, biking, roller blading, etc.- and I dont really consider myself a heavy drinker. Wine with dinner is about it and sometimes none at all. And now my medication doesn't allow me to drink much at all. I never had any hormonal therapy - so that doesn't apply to me. And if people didn't get fat or take hormonal therapy breast cancer rates would be reduced 30%.

So my first take on the article was 'I am none of the above' and it made me lose any sense of warm fuzzies in that they don't know squat about why we get cancer. They I got mad - are they saying its MY fault that I got it because I was too fat at my usual size 8, I was too lazy, and I must be a lush?

But I slept on it and woke up this morning thinking that:

- They don't know why some people get cancer and others don't.
- Therefore they are trying to push their lack of knowledge on to the patients to say that us cancer people must have done something wrong because they can't figure it out.

My end opinion is to tell them to go away and republish the article when they know what they are talking about and stop trying to make it a guilt trip for those of us who are lving with it.

I Started a New Blog

I started this blog when I was diagnosed with breast cancer in 2007. Blogging really helped me cope with my cancer and its treatment. Howe...