But I dont want to!

What the hell is that nurse in Maine thinking? Okay, she went ot Africa and treated patients with Ebola. She came home and was treated horribly and was stuck in an isolation tent in a hospital parking lot. Finally she was allowed to go home. Officials want her to stay in home confinement. Instead she went for a bike ride.

I mean really. She tested negative for Ebola but it can take 21 days to incubate so she still may be infected. She is not cooperating.

She isn't some kind of God who can tell if she has Ebola or not. She is a regular human being with nursing training. Ask the doctor in New York who rode the subway thinking he wouldn't spread Ebola.

Can we please start to be rational about this?

If you are at risk, just returned from treating Ebola patients in West Africa, do you mind cooperating and staying isolated for 21 days to be sure? There aren't a lot of good cures for this disease.
If you are running a fever and you did just return from West Africa, call your doctor for instructions and don't go wandering around the city until you find a crowded emergency room to treat you.

Ebola is a real problem and is on the verge of becoming a disaster. With a little bit of cooperation by all involved, it can more easily be controlled and contained. Grow up, chill out and cooperate, please!

That recurrence thing

Its the other elephant in the room that only the cancer person can understand. What do I do if it comes back????? As Barbara Jacoby points out over at Let Life Happen, we need a bit more focus on breast cancer, and other cancer, recurrences.

Ask any cancer patient that made it through treatment, the next concern is 'what if it comes back?' Well as my little voice of experience speaks up, at my second cancer diagnosis I was slightly  more prepared than my first. I  had a 'taking care of me plan' in place by day 2, even though I was so stressed about surgeries, chemo and all that fun.

Since I had already lived the cancer roller coaster for 26 years, I had some experience to fall back on. It didn't prevent me from completely freaking out but it did allow me to have a little voice inside me saying 'you did this one and got through it, you can do it again'. I also had the me plan in place.I was in a support group before my first surgery. I signed up for another support group - this one was introduction to breast cancer. At the end of treatment, when many cancer patients fall apart, I had a therapist. I blogged, I talked, and I coped with it all, with varying levels of anxiety.

My plan for cancer three is already in place. I don't care what kind of cancer it may be, but I will put me to the forefront once again. What will it take to keep me sane through the process? Probably more or continued therapy. Maybe a second opinion at some big fancy cancer hospital if its some kind of recurrence.

But what I would really like to see is more research into why some cancers recur and some don't and as to why some people are more likely to have their cancer recur than others. Give me some info people! I need to know. Thank you.

Have you ever wondered what RA feels like?

Well basically you feel like crap. I did find this article that gives it a good overview.

Combine these feelings:
- what you feel like when you have a really bad case of the flu and all the aches and pains
- what you feel like after a bad fall
- what you feel like the day after you ran a marathon

Combine all those and there you are. Except with RA it doesn't get better. You can control symptoms and medications can slow progress of the disease but it will never go away. You can be in remission for a long time but it will probably always come back at some point.

Today I am home with a cold and feeling all achy and sore. Life with RA sucks.

More on men with breast cancer

One of every one hundred cases of breast cancer diagnosed will be male. And did you know that one in four men diagnosed with breast cancer will die from it? Two men who were diagnosed with breast cancer and bonded over it, joined to create a new organization called Breast Cancer Brothers to help support men going through this terrible disease.

An independent film is being made about their journey called "Times Like These" 

There are no big research studies on male breast cancer. All their treatments are based on studies done on women. This is so sad.

Its Monday

I have nothing to say. I mean I had a nice weekend. I got a lot of craft stuff done to get ready for the season that starts in a few weeks and runs to the end of December. I had several thoughts that flew in and out of my tiny mind as potential blog topics but decided to end up with a list of them instead:

1. Ebola is not going to kill us all. You can't get it unless you are in contact with someone with the symptoms and there has to be some spread of bodily fluids. So stop scaring the crap out of everyone.
2. The nurse who is in quarantine in New Jersey needs better treatment. A tent in a parking lot? Really? Its unheated as well. Get her to her house and quarantine her there. I agreee with the quarantine and completely disagree with the way its being done.
3. There is a new test available today for screening for colon cancer. You get the test, get a sample in the privacy of your own home and send it off where they will see if the fecal DNA shows colon cancer signs in it. Two small catches: $599 and its not covered by most insurance and one of the doctors who discovered it, gets a royalty for each test sold. I have problems with the numbers part both the royalty and the lack of insurance coverage. 
4.  If you live within 165 feet of a 5 lane roadway, you could increase your risk of sudden heart death for women.
5. I am so done with pink this October.

Off to work and waiting for something to really inspire me today.

Affordable Care Act and Cancer

Yesterday, a bunch of us breast cancer people were together at a lunch. One of the topics of conversation that came up was what portion of breast cancer treatment would be covered by health insurance. For example, would a mastectomy be covered fully or not. We discussed it and we all came up with we really didn't know and needed more research.

Not a good answer.

And then this morning I read this article on access to cancer care under the ACA. It is a disappointment.

Yes the ACA has meant that insurers can no longer drop patients with cancer diagnoses nor are there lifetime caps in coverage. However, there is no guarantee that you will be able to get specialized cancer care.

This is because while under the Act, insurers must meet specific requirements, they do not have to allow you access to official cancer centers.

"...patients are discovering that many plans are limited to narrow networks of doctors and hospitals. Some large cancer centers don’t accept any of the insurance plans that are available through the Health Insurance Marketplace.

According to a 2014 study commissioned by the Leukemia & Lymphoma Society, many insurance plans available through the healthcare exchanges did not provide coverage for treatment and services at cancer centers with National Cancer Institute (NCI) designation. A 2014 Associated Press (AP) survey also found limited access to specialty cancer care. Of the 19 nationally recognized comprehensive cancer centers that responded to the AP survey, only four were included in all the insurance plans offered on their states’ exchanges."

However, do not forget your local oncologist. You may not need a specialty cancer center. I don't go to a specialty cancer center and I'm doing fine. I actually like having my oncologist and primary care and rhuematologist and endocrinologist and pain management and all the other doctors all in the same place. They talk about me when issues arise.

However if I hit cancer #3, I would probably make a trip to a specialty cancer center. (But that's what I said about cancer #2....) But I digress, the ACA act is protecting is us a good deal and helping prevent medical bankruptcies. And it may not cover everything. But I think I am happy with the ACA.

If you were told you were at high risk of getting cancer, what would you do?

So genomics is progressing. The newest research shows that through genomics they can account for the causes of 50% of breast cancer cases. They also state that if you are at high risk, you can lower your risk by maintaining a healthy lifestyle - good weight, not smoking etc.

"When researchers looked at the top 25% of risk scores, they found that these would account for about half of breast cancer cases in the future. Using previous models, genetic variants could account for only 35% of future cancer cases...."

"The model found that lifestyle factors, which are in a woman’s control, can generally lower the genetic risk by half. And the higher a woman’s genetic risk, the more she can reduce it with healthy behaviors. So avoiding excessive amounts of alcohol and smoking, or maintaining a healthy weight, for example, can bring a genetic risk of 30% down to around 15%, while a woman with a 4% genetic risk of developing breast cancer can reduce her risk by 2%."

So those statements beg a few questions.

1. What would you do if you were told if you were at high risk of getting breast or any other kind of cancer?
2. Does the high risk seem as much of a concern if you can lower it by maintaining a healthy lifestyle?

Other research has talked about what you do at a younger age can impact your cancer risk later. But do teenagers really care about healthy lifestyles? The teenagers I know often eat a lot of junk food, drink soda and other sugary drinks, and are not as concerned with getting a healthy meal three times a day. Then twenty-somethings seem to switch to some healthier habits as they mature and settle down. College is a big time for alcohol consumption and other risky behaviors. In recent decades the rates of teen smoking are way down. I know these statements are generalizations and there are exceptions but I am using them to make a point.


So if you knew at 15 that you were going to develop breast or any other cancer at age 50, would you change your lifestyle?  Or at 15 are you less concerned with cancer and more concerned with being a teenager and getting in to college?


My opinion is that at 19 at my first cancer diagnosis, I was somewhat concerned with how long I would live, accepted the fact (eventually) that I was at higher risk of another cancer, and that I was going to live my life as I wanted.

When I was at the end of my treatment - surgery and radioactive iodine - I was told to live a healthy lifestyle and not to take unnecessary risks. My thoughts were summed up as I would rather live my life as I wanted than sit around waiting for another cancer visit. I did eat relatively healthily but I also traveled a lot, drank alcohol and smoked (yes!) cigarettes.

I don't really want any predictive modelling done on me, any more than a friend of mine could get me to go see a psychic. I'm happy with my life, I wish I was healthier but I can't undo the past.