Going for clean margins

Clean margins are the goal in cancer surgery. Clean margins does not mean there is no doodling on the margins of your book. Clean margins mean there is a distance between the edge of the incision and any signs of cancer. Often times they are not discovered until after surgery at the biopsy and require additional surgery. Which is no fun - who wants a second surgery? Not me, thank you.

So someone has discovered a way to solve this problem. But then, it has been discovered. When will it be put to use in my hospital so that if I require more surgeries I can benefit from it.

I like to hear about medical advances but I always wonder if/when I will ever benefit from it. Grrr.

News of the day

Random news that piqued my interest this morning:

1. Three Quebec mammography clinics missed 109 cases of breast cancer - primarily due to one radiologist who has since retired. I am glad I did not go there. But also this is just an example that errors can occur everywhere and if we are not happy with results or have questions, we should get a second opinion or ask our questions until we get the answers we need.
   
2. A giant leap in personalized medicine occurred as two Boston area teams compiled a giant encyclopedia   "...that predict the vulnerability of hundreds of different subtypes of cancer to dozens of drugs. The massive catalogs, which were made freely available online Wednesday, are an important step toward the routine personalizing of cancer care, in which patients will receive treatments tailored to the specific genetic changes that influence a tumor’s response to drug regimens."
   
   This is sounds cool and sounds like lots of progress but its more than my tiny brain can comprehend. I'll just let someone else summarize it for me. If I could find the encyclopedia I might attempt to look at it.
   
3. Its time for all of us to start growing wild tomatillos - which are a native weed - which has been discovered to contain medical properties.
   "So far, the researchers have demonstrated 14 compounds found in the plant can fight numerous cancers and tumors without any apparent side effects or toxicity—namely: melanomas, thyroid cancer, head and neck squamous cell cancer, breast cancer, glioblastoma brain tumors, and certain leukemias. Other studies suggest these same molecules may combat both esophageal cancers and pancreatic cancers." I'll ditch the flower garden and lawn and grow some weeds instead.

Now I am off to work for the day to ponder these latest advances.

Who owns that gene?

That depends on who you ask. Personally I find the idea that someone can own the patent on a gene which was created naturally in my body a bit creepy. Now the court is saying the same thing.  Here is a summary of what my tiny brain understands:

• The US Patent office has been issuing patents on genes for about 30 years.
• Myriad Genetics developed the BRCA 1 and 2 tests and patented the two genes.
• Anyone who wanted to perform a BRCA test to test for the breast/ovarian cancer gene had to pay a fee to Myriad
• People sued and a judge in 2010 invalidated the BRCA patents.
• Myriad continued the fight and it got to the Supreme Court (even though they are very busy with that healthcare reform stuff) threw out the case on the grounds of another case which said the laws of nature are not patentable.
• This not the final ruling as it returns to the district court for further ruling. So stay tuned...

Great, what I see here are a lot of lawyers getting rich off greedy companies (assisted by the Patent office) while patients, cancer research, personalized medicine, and genetic research. But I think the odds are in favor here that this will be throw out as they Supreme Court tossed it already. (Or at least I hope so because I believe patients should come first and corporate greed should come last.)

Secrets of the health care reform act

Of course there are secrets hidden in the health care act. There are 2700 pages of government 'gobble-de-gook' that I haven't had the pleasure of deciphering - because, frankly, I am lazy and that would mean I would have to work. However here are some of the secrets, courtesy of CNN (where would I be without CNN to quote?):

1. As of 12/2014 drug, device and medical supply companies would need to annually report payments and items of value they give to doctors and teaching hospitals. This means your doctors would actually be giving you the right drug, not the one they are paid to give you. How's that for smart thinking?
2. As of March 2010, working mothers got a more appropriate location for expressing breast milk - employers must give them a  place to do this and allow breaks to do this as well.What are they supposed to do - stand in the ladies room or hide under their desk?
3. Every chain restaurant with more than 20 locations would need to provide calorie counts for all items - but no date is set for this. In some ways I hate this because it takes all the fun out of eating a cookie to find out it contains 300 calories. But on the other hand, it keeps me from cheating on my diet.
4. Abstinence only sex education would receive matching federal funds. Too much teen pregnancy going on so I think this is good.
5. Flexible spending account requirements get tighter. As of 2013, there will be an annual limit and they can no longer be used to buy OTC medications and vitamins. Of course, not everything is good.
6. The tanning tax. If you must 'fake bake' your skin, you get taxed on it. 10% is the amount. This went into effect in 2010.
7. Work wellness programs can be funded through grants for small businesses and companies are incentivized to have them. Hmmm.... Does this mean if you run on the company treadmill for 10 minutes you can get a candy bar from the vending machine?
8. Free preventive care as of 2010. Well free to the patient but insurance companies must fully cover mammograms, physical exams, colonscopies, vaccinations, and more including genetic counseling for women with the BRCA gene. The idea is to find problems early before they get expensive. While it sounds like insurance companies are taking the hit here, they really aren't. It costs much less to remove a precancerous polyp than it does to treat stage IV cancer.
9. Home visits for expectant parents. The idea is to reduce child abuse and neglect and promote the health of mothers and their children. This began in 2010. Taking care of moms and new babies can prevent millions of dollars in care down the road.
10. This one is my favorite - health insurance policies which do not require a secret decoder ring to decipher. As of September 30, 2012 the plans must be concise and understandable and make it easier to compare plans.

So its not just about insurance for pre-existing conditions, life time caps, young adults on their parents insurance until 26, and requiring everyone to have insurance, it does include other little but important changes. I have to say I am sick of news on health care reform and can't wait for the Supreme Court ruling so everyone will just shut up about it. And I really hate the fact that the media things the average American can't handle news that isn't broken down in to top ten lists. But I found these interesting and can't wait to receive my first legible health insurance policy.

I put this in the self-inflicted category

The Komen Foundation is having problems meeting its fundraising goals at recent events. Why doesn't this surprise me?

• They shot themselves in the foot with the Planned Parenthood flap and their inability to handle the bad press.
• They shot themselves in the foot when their 990s (tax forms for non profits) showed the high salaries paid to executives and amounts that went to research vs. what goes to run events.
• They shot themselves in the foot when key employees started leaving the organization - which had very little to do with the Planned Parenthood flap. Now their board chair is leaving allegedly at the request of his employer to distance himself from the organization.
• And they completely 'opened mouth, inserted foot' with every effort to handle these issues.

Now their wallet and bank account is taking a hit. This is becoming the poster child for how not to run a non-profit.

A non-profit needs to be clear in how their funds are used, they need complete transparency on their finances, they need to stand behind what they say they do, and they should not succumb to political pressures. Not only that, they need to be very clear on all of the above. If a potential donor wants to know any of the above, it must be very easy to find the information. Any potential possibility of false pretenses will result in lack of donations. This is what has happened to Komen.

I happen to work for a local non-profit and handle fundraising, development, outreach, and marketing. I strive to be as clear as possible with what we do, what are our goals, and where our money goes. It is a very small organization so we do not have as complicated finances that Komen has but transparency is invaluable.

The health care controversy

Next week the Supreme Court will tackle health care reform, or the Affordable Care Act, or Obamacare - or whatever you want to call it. Some people like it, some people hate it. I am relatively impartial. While I like some of the changes - no pre-existing condition exclusions, no more life time caps on benefits, children can remain on parent's health insurance for another three years, more well people scans, and other items. I am also not looking forward paying any more than I already am or having to wait longer for care.

But I have also taken a wait and see approach. I see no need to jump up and down and take a stance that 'it will not work' or 'it must happen the way it is written' because we don't really know how it will work. Already, there is insurance available for those with pre-existing conditions but only 50,000 people have signed up - which is much lower than what was expected.

I do believe the current situation has to change - the insurance companies should not make medical decisions for the patients and just because you get sick  your insurance company should not be able to cut off your benefits. That's like your car insurance company saying because you get in an accident, they can cut you off. Oh, that's right they do that too. Insurance companies should not rule the world.

I recently had a Facebook 'discussion' with someone who is against the proposed changes. She had been told by her child's doctor that it was wrong. She could quote from various right wing online sources that were against the ACA. But could she articulate more? No, quoting from others was about it.

While I welcome dissension and embrace my inner rebel, I believe I need to form my own opinions and don't need to use others' rants to express an opinion. While I cite articles, I use mainstream sources and don't refer to extremist opinions to explain my stance.

If you agree or disagree with anything, please state your own words and have a discussion with me. After more than 30 years with cancer and worrying about not having health insurance or being told I had a pre-existing condition, I welcome change that would allow me and others not to have to worry about life time caps or loss of insurance just because a whim of the industry.

News flash - cancer treatment can cause long term side effects

Who knew? The poisons of chemotherapy, radiation, and surgery could have long term effects on a cancer person's body and health.

A growing population of cancer survivors faces an increased risk of radiation-related second malignancy and cardiovascular disease (CVD) for which little evidence-based clinical guidance has emerged, researchers found.

Gee whiz. I never would have thought what can cure me might kill me too. Any medical treatment you receive where either the nurses have to wear special gowns to handle the drugs before they are injected in your body or the technician has to leave the room you are stuck in during the zapping. No dangers there.

I had RAI treatment in 1981 where I was given radioactive iodine to dissolve the rest of my thyroid tissue. Now the standard is that you go into isolation for a few days so you don't contaminate others. Not me, I was out in the real world as radiation isotopes decayed inside me emitting my own little radiation waves.

I know people who have had chemo and then were diagnosed with leukemia or lymphoma. I know one person who was treated with radiation to the chest for Hodgkins and decades later died of breast cancer which she was told was a known long term side effect of her previous diagnosis.

Well we can worry about it all we want, along with the R-word, as we go from doctor to doctor hoping nothing new shows up.