Those pesky breast cancer screening recommendations

Can I ask who is confused over the 'revised' breast cancer screening guidelines? Or should I just ask who isn't confused? Yes, no, yes, maybe, no one, everyone? How old? Not that young, should be older. Well maybe not. Not for everyone. Wait, oh just test everyone. No only for some people, talk to your doctor. That's a lot of different answers.

And in both my cancers I was clearly not a candidate for hitting the so called criteria for any testing. So I just ignore all the comments about too young or too old. Those really should be less likely or more likely instead of age related if you ask me. But they didn't ask me.

Anyway, so the USPTF (US Preventative Task Force) released a clarification on their breast cancer screenings earlier this week. They also claim they were misunderstood. And they want to clear up confusion. Well maybe the confusion was because what they said back in 2009 concerned everyone.

"The U.S. Preventive Services Task Force (USPSTF) released its final recommendations for breast cancer screening Monday in an attempt to clear up some of the confusion.

The group recommends that women at average risk for breast cancer should have a mammogram every other year beginning at age 50 up to the age of 74. Women in their 40s are advised to make an individual decision in partnership with their doctors, since the likelihood of benefiting from screening is lower for women in that age group.

Though this is an update from the group’s 2009 recommendations, the guidelines remain largely unchanged and a draft was released earlier this year.

The report, published in the Annals of Internal Medicine, also concluded that there’s not enough evidence to determine if newer 3D mammography is a good option for routine screening, or if women with dense breasts need extra testing.

The group’s 2009 report drew controversy for questioning the usefulness of mammograms for women in their 40s. But the task force says their words were widely misunderstood."

Blah, blah, blah. So in their clarification here they state that a mammogram every other year is all that is needed starting at age 50 if you have average risk. Let me ask all my friends in their 40's with breast cancer what they think if they had waited until 50 for a mammogram.

Okay, so medically maybe there is some logic in their plan. Or maybe not. If you look at breast cancer occurrence rates (from Cancer.gov):

Age 30 . . . . . . 0.44 percent (or 1 in 227)
Age 40 . . . . . . 1.47 percent (or 1 in 68)
Age 50 . . . . . . 2.38 percent (or 1 in 42)
Age 60 . . . . . . 3.56 percent (or 1 in 28)
Age 70 . . . . . . 3.82 percent (or 1 in 26)

It sees clear that most breast cancers occur after the age 40. So I don't understand this wait until 50 business at all. Now I am even more confused.

Now I can relax

The past few weeks have been horribly stressful for me. I have been sick basically since mid-December. We did not really celebrate Christmas and New Years. And the move was very stressful as well between the lawyers, realtors, and bankers and numerous delays. Anything that could have gone wrong seems to have. Finally we got moved into to our new house.

Before his big adventure

But we were short one cat. Our cat, Boots, got out while at the cat sitter last week. I have looked for him numerous times, put up signs, notified animal control, shelters and rescue league. This morning I had a few minutes and was near our old house and wanted to see if maybe he had made his way back there. But the new owners were having appliances delivered in big trucks which would scare him too much so I left.

Then I had a doctor appointment and decided to make one more trip down to the cat sitter's neighborhood. I called Boots and he came running. I grabbed him and put him in the car. I had a can of cat food and the cat carrier with me so I could feed him if I found him. I also gave him water.

After his big adventure

He is skinny. He is a little more skittish. And he is exhausted. I need to check his paws to make sure they are okay but otherwise he seems fine.

I was extremely stressed about him being gone. I did not want to give up on him but was also concerned about what if we never found him. I could not forgive myself for that.

Stress is hard on me. I can't sleep when stressed. I have enough problems sleeping with insomnia and pain I had started skipping meals because of stress. I am happy to lose a few pounds but that's not a good way to do it.

Now I can relax and focus on unpacking and taking care of me again. I know I just posted this all on FB so if you read it there already you can ignore this whole post. This just shows how stressed I was.

Advice for the newly diagnosed

Yesterday I got a message from a friend about a friend of a friend of a friend who was newly diagnosed with breast cancer, that unfortunately seems like it might be stage IV.

Both my friend and my friend's friend had been urging her to go to Dana Farber in Boston immediately for more doctors instead of staying where she is for treatment. They also admitted, while they knew a fair amount about cancer - because they have been there - they did not understand hormone receptors and other issues particular to breast cancer. My response was give her my contact information and I would be happy to help her understand her diagnosis, as much as I can, and where she can go to get more information and support.

Later I started thinking (that dangerous proposition again) about what would be my advice for the newly diagnosed.

1. Find information to help you understand your diagnosis, knowledge is power. Look for information online, in books (yes the old fashioned printed things), and from medical professionals and medical associations. Ask your doctor questions about your diagnosis and ask your doctor for resources for more information to help you understand your not-so-fun ailment.
   There can be too much information to absorb at once. But I think if you start with your disease, the stage its at, and treatment options - big picture only - you can get a better idea of what you are facing. I mean do not get wrapped up in different chemotherapy options at this point. I think if you can get an idea of what you are facing in terms your disease and not get bogged down into the details, you can get a better grasp on your options.
   Later, after you have had a chance to absorb your diagnosis and its implications you can then focus on the aspects of the different treatment options.
2. Find support to help you keep your sanity. You can find support in many places. I suggest asking your doctor's office to start but also ask any friends or family who have been faced with a similar diagnosis or are in the medical profession. They may be able to provide support but also may be able to help you find more information. Support is many things. It can be a support group - whether virtual or in person. It can be a network of friends who provide childcare, meals, and company. It can be someone to hold your hand while going through treatment or at the doctor's getting news.
3. Focus on your sanity. When faced with a not-so-great diagnosis, you can easily go down the emotional roller coaster to hell in a hand basket and back again, over and over. It is okay to say, 'I'm not going to make a decision right now, I need to think about it'. When faced with treatment options, a good answer can be a question - how soon do I need to decide?. 
4. Stand your ground. Often well-intentioned friends and family members tell you what they think you should do - because their hair dresser's dog walker's cousin's next door neighbor had a similar disease twenty years ago and this is what happened to them. Smile and tell them thank you and walk away. Others will tell you which doctor to use, or why you should go to Germany for this new treatment, or other not so helpful information. Finally, there are those who will offer condolences as if they were at your funeral 'well, you have lived a good life' or 'it must be your time'. What are they talking about? You aren't dead.
   Do not let these people near you, walk away from them. They are not helping you. They do not understand your predicament and listening to them will not help you. They will send you down that emotional roller coaster again. Focus on finding new friends who are supportive. 
5. There is no such thing as a new 'normal' so forget about finding it. Those people who tell us about the so called new normal have no idea what they are talking about. All it does is stress us patients out as we try to find it. However you can still be who you are after diagnosis. You may find you are stronger than you thought you were. You will find out who your true friends really are.

I am not a doctor or a medical professional. I am only a professional patient who has been wandering the halls of medical disasters for decades. This is my advice. You may find that your advice to the newly diagnosed is different. 

Twenty Four Seven Medical Care

It has always aggravated me that if you get sick on a weekend you either wait until Monday to see a doctor or end up at the Emergency Room which is the wrong place to be unless it is a true emergency. And the horror stories of the surgical errors over the weekends because the only surgeon on call was two hours away.... I will admit that this has improved in recent years with the advent of more walk in clinics and longer hospital hours. But, we get sick and stay sick 24/7/365.

And the worst is having to wait all weekend for test results. Why can't someone read the damn test results and tell us on Saturday instead of making us wait until Monday for an answer? Any cancer person is familiar with this issue

Forbes Magazine wrote an article recently on New Year's Resolutions The Key Players in Healthcare Should Make. This issue shows up on the third page, after recommendations for doctors to improve their practices and synching electronic medical records.

So why do hospitals essentially close down on weekends? I completely understand administrative offices working a five day work week and the convenience of having all the staff available at the same time for better communication, yada, yada, yada. But why do medical staff also work only Monday-Friday? We don't just get sick between 8 and 5 on Mondays to Fridays?

There is always the complaint about too many patients coming in. But what if the hospital hours for medical care were stretched over seven days instead of five? The staff could still work the same number of hours but just over a longer period of time. And if you get a medical test, you don't need to wait for someone to read the damn report. If you were admitted over the weekend, you don't need to wait until Monday for surgery to be scheduled. I can go on.

'Bankers hours' medical care should be a thing of the past. The only people who benefit from being hospitalized over the weekend is the hospital - they get to bill the insurance companies for more nights' stays. Wouldn't it be better for the patient to be operated on over the weekend and then get out of the hospital?

What if hospitals were open for care half the time instead of a quarter (five nine hour days = 45 hours/week or 26.7%) of the time? What if hospitals were open 7am-7pm Monday - Sunday? Waits for appointments would be shorter. More patients could be treated. Patients who work full time could see doctor's at more convenient times. This is only 50% of the time, not 24/7/365 but its a big step toward more access.

I know this would require more staff but then hospitals would have less down time and would operate more efficiently and their expensive testing and surgical equipment would get used more and therefore be more profitable. And the patient's would be better treated and less stressed - quicker access to care and more information on their conditions.

Just an idea... I'm just a professional patient who hates waiting to find out the answers.

Connect the Mind with the Body

The 'all-powerful' insurance companies have been mandated by law to cover mental and behavioral issues the same as physical ones since 2008. But just because the law says so, doesn't mean this really happens. (Didn't I just blog about this? I did, yesterday. And then today's Boston Globe has an article on this very subject.)

The new way of health care payments, the global payment system, may actually lead to better care for the emotional side of treatment. The payments are made per patient and not per treatment and an emotionally healthy patient is probably better at managing their medical treatments.

"The hope is that global payments are providing incentives for insurers and providers to finally raze the longstanding wall between mental and physical health care, since reimbursements are based on patient outcomes. Potential benefits are obvious — people suffering from both diabetes and depression, for example, would be more likely to consult a doctor for diabetes treatment if their mental outlook improved. Conversely, depression might ebb in patients who keep their diabetes under control."

For anyone who went through chemo, didn't you just have some days where you were too tired and too sick and too sick of being sick to want to go through chemo and someone had to persuade you to go?

So maybe with this global payment system,which is not yet perfect and shows some gaps for some patients, will help with this. At this point, I am happy that I am not the only one who cares about the emotional side of being sick.

The Big Gap in Treatment for All

Someone said something the other day that hit a nerve for me. 'How well do you think the emotional needs of patients are met?' And I started thinking.

When I was diagnosed with thyroid cancer, my emotional needs were not mentioned. At all. When I first destroyed my knee skiing, no mention was made of the changes I faced in my life. That was when I first needed to give up some of my favorite sports - skiing was never the same again. When I had hysterectomy, I was given the advice by friends to go to hystersisters.com to answer a lot of emotional questions and the long term impact of the surgery. I do not think my doctor gave me any advice. I mean I may have been given a pamphlet but that was it.

When I was diagnosed with breast cancer, I was definitely given a folder of information on resources - support groups, lymphedema, hair loss, Look Good, Feel Better programs. But I was the one who said I am going to a support group, asked for a therapist, and all that. My emotional needs were sometimes asked about but I felt I was the one raising the issue of how I was coping.

When I was diagnosed with fibromyalgia and rheumatoid arthritis, my emotional needs were not mentioned. these diagnoses are not minor, they are pretty much life changing. And doctors didn't think my emotions were an issue.

No matter what the doctor tells you, how often do they stop and ask you how you are doing emotionally? Somethings are minor - you get the flu, sprain your wrist, etc - you will heal and go back to normal. But after a diagnosis of RA, MS, fibromyalgia, heart attack, stroke, or anything else with a significant long term impact on your health that will change you forever, shouldn't the doctor and the rest of your medical team consider your emotional health as much as your physical health?

Too busy to worry about my health

The upside to my horrible week is that I have been too stressed about house buying, having a cold, a missing cat and everything else to worry about my major health issues. My cold has made me feel too crappy to care much about back pain, or fibromyalgia, or rheumatoid.

My biggest problem today is that I cant find any socks. I had to wear my husband's socks today because all my socks are either packed or in the laundry. Speaking of which, I haven't done laundry in over a week. Hmmmm..... Another project for the afternoon.

And this week I see my back doctor where I will be forced to lie and say I haven't lifted anything..... Drat. I try not to mislead my doctors. I believe in the telling the truth as much as possible, especial with medical people. My health is too complicated not to.

At end the week, I go to the periodontist. I cant wait.