Is it finally over?

May 30, 2007 I was told I had breast cancer. three surgeries, 16 rounds of chemo, 38 radiation treatments, two years of tamoxifen and nearly three years of Femara later I was told this is all about to end in January. That is when I will have my last dose of Femara and be done with breast cancer treatment. I know I have blogged about this previously but it has been weighing on my mind.

In breast cancer treatment there are a few milestones - the first surgery and first chemo treatment. Then on to radiation and you are done with active treatment. You usually get a little pill to take daily and you start seeing your doctors less and less - maybe every 3, 6 or 12 months. But your daily support system has disappeared.

Next you come to the end of your little pills. What next? I am not sure how often I will be followed by my medical and radiation oncologists. I know my surgeon's office will take charge of my mammograms and their follow up with the nurse practitioner each year. I think I will continue to see my medical oncologist for the next year because of my osteoporosis which was partly induced by Femara. I will find out next week how often I will see my radiation oncologist in the future. I have been seeing her every six months.

The hospital where I go to has a system where you rotate through your doctors and are seen by someone at least once every three months to ensure continuous follow up. I am sure this will start going to every six months at some point. But I do find it comforting that they follow me so closely. Because with my medical history, they need to be sure.

If they took all the follow up away, how would I feel? I like the continuous level of care on some level but I also find all these doctor appointments a pain in the neck. They have slowed down considerably. It is no longer uncommon for me to have a month or more between any doctor appointment. It is doubtful that I will max out my out of pocked expenses this year, for the first time in five years. This is another sign that I am 'healthier' even though my medical file continuously grows with non cancerous diagnoses and treatments.

And life goes on and the cancer roller coaster is still there so no its not over. It may never be.

Welcome to my two new ailments

As you may have deduced figured out (I hate to use big words too early in the day) I have two new fun ailments to add to my collection. I have both Rheumatoid Arthritis and Fibromyalgia. They nicely round out my previously daignosed ailments but also explain why some of my other ailments never got better and I have had so many pains that were previously blamed on my back or my lack of coordination which causes me to trip and fall and hurt another body part.

While neither of these ailments has the potential to be fatal, like cancer, they are not fun. Rheumatoid is one of those life long things that slowly progresses. The goal is to get it to stop progressing. I have early stage RA which has not yet started to erode my bones in the joints but I have many swollen joints in my hands and feet and elsewhere.

Fibromyalgia can last for months or years or forever. Actually its described as a long term pain problem that can come and go for years. A fibromyalgia flare up can last a few minutes or a few years.

I'm special since I have both fibro and RA. I have to be special. I'm convinced that I could make a lot of money when I die selling my body off to science so they can ooh and ahh at all my ailments. But I digress. I am now trying to get my treatment started for both of these. The basic recommendations for patients with both RA and fibro are:

"The best course of treatment for patients who have both fibromyalgia and rheumatoid arthritis is to first treat the rheumatoid arthritis since this condition commonly is associated with joint deformity and disability. If it is felt that the rheumatoid arthritis is controlled based on joint exam and measures of inflammation such as sedimentation rate (ESR) and C-reactive protein (CRP), but the patient still complains of pain and fatigue - consider fibromyalgia activity. Focus on improving quality of sleep through increased rest and aerobic exercise. Rule out sleep apnea if clinically significant. Consider medications used for fibromyalgia including tricyclic antidepressants, selective serotonin reuptake inhibitors (SSRI), and gabanergic medications like Neurontin (gabapentin) or Lyrica (pregabalin)."

My rhuematologist started me on treatment for my RA - but I was allergic to both medications. I'll see how  I feel by the end of the week and call her back so she can start me  on Methotrexate. These medications can take months to start working - oh, joy! In the meantime, my back pain doctor who will be the primary doctor to treat my fibro, doesn't want o put me on anything like Lyrica for now. He wants my RA to get under control - one new set of drugs at a time. But he did increase the dose of my pain patch which I'll start next week.

In the meantime, I wake up in the middle of the night - sleeplessness is a symptom of fibro but also can be caused by waking up in pain. I have my little bottle of pain pills that I carry around like it is a life support system.  I am also learning to cope with the fatigue. Saturday afternoon at 4pm all of a sudden I got too tired to watch TV. When you are too tired to watch a Lifetime movie, that means you are really wiped out.

I have been perfecting my ability to be lazy which isn't as hard as you may think. The cat is overjoyed with my sedentary life style as it means he can sleep on or next to me more frequently. But I still go to the gym three days a week and have gotten advice on adapting my work out until the medications kick in - in a few months. That means I may be perfecting other skills - whininess, crabbiness, crankiness.

Living with cancer stories

Cure magazine has posted a lengthy article on new treatments for ER positive breast cancers and featured two of my fellow bloggers in it. The first one they introduce is Jill Cohen who's blog is 'Dancing with Cancer, Living with Mets; the New Normal'. I have always admired Jill as she has passed all the statistics with living with Stage IV breast cancer since 2002 - thats ten years. Ann Silberman is the other blogger who writes 'Breast Cancer? But Doctor I Hate Pink!' and writes about living with stage IV breast cancer in a very humorous way.

Back to the article, it is full of descriptions of how the hormonal drugs work and some new combinations and, more importantly, new advances. Click here for a timeline showing the progress of how research has changed the face of treating Estrogen positive breast cancers including the approval in 2012 for a new treatment for metastatic breast cancer.

I always like to read optimistic stories that show the progress that is being made in treatment of breast and other cancers. And reading others' blogs as they cope with their treatment helps me cope as well.

New doesn't always mean better

Back in 2007 when I was diagnosed with breast cancer, all the patient boards were talking about this new kind of radiation called 'Mammosite' or brachytherapy. The advantage to it was you went twice a day for one week as opposed to once a day for 8 weeks. I asked my radiation oncologist and she said it was not yet available where I was treated. I was a tiny bit disappointed but figured I could suck it up and cope with daily visits for near 8 weeks. (The biggest pain about radiation treatment is having to go EVERY day for weeks.)

A few years later, I went to a cancer treatment conference at the same hospital and they said they were just beginning to offer this mammosite radiation to selected patients and explained the procedure how beads were inserted during surgery, etc. I felt a faint tinge of regret that I hadn't had the newer treatment type. It was newer so it must be better? Right?

Wrong. Now after it has been used for five years and on more than 50,000 women a clearer picture is emerging..

1. The outcome for patients is not necessarily better for women who have mammosite radiation than regular full breast radiation.
2. There is a much higher rate of side effects with mammosite radiation - 35% vs. 18% for regular radiation.
3. Mammosite radiation costs twice as much as traditional radiation.

Hmmm.... So newer isn't necessarily better. This doesn't mean that mammosite shouldn't be an option and maybe teh shorter treatment period will benefit some women. I think I'm happy with the course of treatment I had.

Often times there are treatment advances and cancer patients look back with regret 'why couldn't that treatment hve been available when I was being treated?' Not this time. No regrets for me.

Medications and me

Medications have a tendency not to agree with me. As a child back in the dark ages of the 1960s and 1970s, if I had strep or an ear infection, the local pediatrician would prescribe Penicillin, the miracle drug. At one point, I remember her saying that I had a sensitivity to  it which I promptly ignored because I was a teenager. I don't think my mother remembers that either..

When I was sixteen, I went on a summer program to Madrid, Spain to study at the University of Madrid. We stayed in a university dorm (with a bar on the ground floor, a convent on the first floor, and a dining hall on the second floor which made the world's best paella once a week at minimum). One day I wasn't feeling well, napped all afternoon, attempted to eat dinner but wasn't hungry and went to bed early. I woke up in the middle of the night with a need to use the bathroom and ended up passing out in the hall outside the chaperone's room. The doctor was called, accused me of using drugs (my little bottle of sudafed was deemed suspect) and found I had a temperature of 105. Their modern medine (this was just post-Franco Spain) was shots of penicillin in my behind twice a day. Some how I survived that with no reactions.

(They were very helpful in taking care of me by leaving a nun in my room 24/7 so I was never alone. The nuns only spoke Spanish - I think they wanted to make sure I didn't take any more contraband sudafed. With a temperature of 105 I couldn't speak a word of Spanish if I tried. I was also given everything at room temperature - so as not to shock my body. And each aspirin table needed to be cut into 6 little pieces and swallowed individually with a sip of warm, flat soda so I would not choke. I did get better after a few days and we never figured out what it was. But I digress.)

I never seemed to get strep or ear infections or anything requiring antibiotics for years (maybe I was really a  healthy person once.) Then in the 1990s I had dental infection and was prescribed penicillin which gave me a full body rash and hives. On a business trip... in Europe. I stopped taking the penicillin immediately and called my dentist when I was back in the US. So no more '-cillin' drugs for me.

Around 2001 I managed to ruin a perfect day of skiing with a tiny fall which resulted in a toboggan ride from some very nice ski patrol followed by crutches and knee surgery. A family friend, and former OR nurse, told me to take two of Vicodin that I had been prescribed the night after the surgery to ensure a good night's sleep. I was up all  night. So no more Vicodin or Tylenol 3 for me - we think its the codeine that causes the problem.

Then with chemo, I was given Benadryl to prevent an allergic reaction to the infusion. I was allergic to the Benadryl which means I really can't take any antihistamines ever.

Last Friday, my rheumatologist prescribed me Plaquenil and Prednisone for my RA. I was up all night from the Prednisone and stopped taking it. When I tried it again on Monday morning, I ended up with a bright red face and rash. We decided I should stop the prednisone for now and stick with the Plaquenil. As the week progressed, my rash progressed. It now covers my face, neck, upper chest, around the side of my torso and my arm pit (which is really the pits.) The suspicion is I might be allergic to both.

Our next step is when my rash goes away - in a week or two (according to the doctor) - she will put me on something else for my RA. I hope I am not allergic to that as well.

Communication, optimism, and honesty

A recent study at the Dana Farber in Boston (because we needed another study to keep the researchers busy) looked at late stage lung and colon cancer patients and their thoughts on being cured and on their doctor. Two very interesting points were raised:

• "They found that 69 percent of patients with metastatic lung cancer and 81 percent of ­patients with advanced colo­rectal cancer reported that their chemotherapy might be curative, despite the fact that the drugs were extremely unlikely to cure their cancer."
• Patients who thought their doctors were worse communicators were more likely to have a realistic view of the potential benefit of their treatment.

Do patients rate their doctors as better communicators because they provide a more optimistic message? So if the information is more in line with what the patient wants to hear is the doctor considered to be a better communicator? But if the doctor is more honest, the patient considers them a worse communicator because they are being told things they don't want to acknowledge?

A sugar coated doctor appointment isn't really a good thing. I want the truth. I have even been known to pull together every brave little molecule in my body and ask my oncologist what my prognosis is. Sometimes the truth isn't pretty but I think its needed.

I know not everyone is the same as me in wanting to hear the truth and doctors do not necessarily know the patients will react to news. I think they assume have to gauge what they say based on what the patient says. I make sure I ask the direct questions so I get the direct answers in return.

I do not want to have a rosy picture of life if it isn't going to be that way. I can't digest and cope with bad news if its sugar coated. I have to adapt to reality and then learn how to make lemonade with my latest life lemons.

The Perils of Pink

I finally found an article which explains the perils of pinkification better than any attempt I have ever made. You can read the whole thing here or you can read my cliff notes version below.

“The biggest misconception people have is that the proceeds from a product or fundraising event are directly contributed to the cause, or toward progress in ending the breast cancer epidemic, and that’s an assumption which may not be true,” said Gayle Sulik, author of “Pink Ribbon Blues: How Breast Cancer Culture Undermines Women’s Health.” Whether it’s a entering a walk-a-thon or buying a dusky-rose pair of sneakers, Sulik recommended reading the fine print. “If there are not specifics, if it’s a general, ‘All profits go to support the fight against breast cancer,’ that’s a red flag,” she cautioned.

Here are three product examples:

• Hershey's Kisses for the Cure Pink Ribbon Music Box, retail price $49.99 has a major selling point that  portion of the proceeds to be donated to help fight breast cancer. That amount might be a $1.00 and the authors could not find out what charity the money was going to. Recommendation - skip it.
• Gaiam Ink Ribbon Yoga Mat, retail price $21.98. $1 goes to charity. 
• "Andee" Breast Cancer Watch from Coach, retail price $258, $20 goes to charity.

 But before you make that purchase you need to consider to whom the money goes and how they use the money:

"The Breast Cancer Research Foundation, for example, uses less than nine cents per dollar raised on fundraising and administrative expenses, compared to the United Breast Cancer Foundation, which spends a whopping 72 cents per dollar before beneficiaries see any of that money. Watchdogs like CharityNavigator.org can help you compare charities to see where your money is going."

The next consideration is there a cap on the amount that goes to the charity - either an end date or a total amount:

When you find a product that supports the cause transparently — and there are plenty out there — try to find out whether there’s a cap on the donation, meaning the donation ends once a certain amount has been met. If the promotion mentions a specific time period and you buy the product after the cut-off date, the would-be donation may go straight to the company, so check for a time limit.

Some tips for where to donate your money are:

• The smaller local charities who are helping people you know in your community.
• Breast Cancer Research Foundation
• MD Anderson
• Johns Hopkins Avon Breast Center
• Lynn Sage Cancer Research Foundation
• Memorial-Sloan Kettering Cancer Center

So think before you pink so you don't perilously pink.

European drug pricing

I almost titled this post 'European Drug Dealing' but thought it might have some bad connotations as I am not that kind of girl. Creative drug pricing is flourishing in Europe due financially strapped health care systems. These European countries are forcing drug companies to compromise their pricing structure. Hmmm.... so guess who still pays those prices? The US.


"Many of today's complicated pricing arrangements have their origins in pioneering work by Britain's National Institute for Health and Clinical Excellence (NICE), which was set up in 1999 to systematically assess the cost-effectiveness of new drugs.

Its refusal to accept some pricey products has angered patients, and the tough line has forced drugmakers to find novel ways to make medicines affordable - either by offering discounts or making payment conditional on measurable benefits.

It is an approach now being adopted from Spain to Poland, resulting in a patchwork of schemes that can cause frustration among doctors struggling to assess the true cost of treatments."

I strongly believe that drugs needed to be assessed for their cost effectiveness but not in the sense that they should be with held from patients because of their cost but instead so that drug companies restructure their pricing costs. Yes I understand research is expensive but the pharmaceutical industry still offers incredible hiring packages and perks to employees (I have  friend who just got a job in biotech and her salary and perks are amazing in today's standards - they are reminiscent of the free spending 1990's.) But I digress.

Drug pricing should  not be the problem of the patients or the insurance companies or state run medical organizations. Pricing should be the problem for the manufacturer.

""The 10,000-foot view is that we just follow the science and do what's right for patients, and then figure out a commercial model that can work," Hal Barron, head of global product development, said in a recent interview."

If the science takes them to the right direction for the patient,  the drug companies also need to figure out how to make it commercially viable and accept that there need to be price ceilings for drugs. Something that costs $10,000/month, even though it might be lifesaving, is out of line. 

I have two recent examples where I got brand name drugs and was appalled at all the packaging and design that went into them. My brand name Femara came in a little bottle which a fancy label and the bottle was the exact color of the pills. I am sure there were several marketing programs done to figure out what color the pill and bottle and label should be. That's not necessary. Just give us plain pills that we can distinguish from our other  pills in a regular prescription bottle and we will be happy.

This summer I was switched to Butrans pain patch which provide a week relief from pain. It came with a DVD with a 20 minute video on how and where to apply the patch - on your skin near your collar bone - they could have done it with a little diagram. Each months' supply consists of a 6"x6"x1" cardboard box which contains the four patches, a giant folder of discard packets, and 1/4" think folded up instruction/side effect sheet. Why can't they send me 12 patches with one folder of discard packets and one instruction/side effect sheet for three months instead of three big boxes? Packaging!


Tools to manufacturers in setting pricing are packaging, image, product, and more. Each product has an image they want to project and it is defined by pricing, packaging, promotion. Drug manufacturers do this as well as most other manufacturers. I don't think they need to waste money on that. They should focus their efforts on putting the products out as quickly as possible with the lowest possible costs.

So now we have an entire continent forcing drug companies to make deals to sell their products. We need some of that here. More change is needed in the health care system to change problems such as this one of drug pricing.

New Medications Are Not Agreeing With Me

Friday I went to my new doctor, a rhuematologist to start treatment for my newly diagnosed Rheumatoid arthritis (early stage, non erosive). She put me on prednisone (2 tablets daily for 1 week, then 1 tablet daily for six weeks) to start working sooner and Plaquenil (2 tablets daily forever) for long term treatment to stabilize the RA.

I picked up my prescriptions in early afternoon and took both. I knew there was a risk that the prednisone would keep me up at night. It did. I barely slept which means I was a touch cranky and nearly fell asleep at the gym (but get points for getting my lazy butt there). I said no more prednisone until Sunday when I can take one tablet first thing in the morning and hopefully it will have worn off in time for me to go to bed. We slept late so I decided to put that off until Monday morning when upon arising at our normal weekday time I immediately took one prednisone. I did take Plaquenil on Saturday and Sunday.

By the time I took a shower, I decided that I must have gotten a sunburn when we ate lunch outside on Sunday as my face was feeling burnt. Upon closer examination my face was all red and bumpy so I figured some kind of reaction. I got to work and the three women who were there (who are mothers and therefore good a noticing and diagnosing little ailments instantly) said 'why is your face so red?'. Their diagnosis was I had a rash all over my face.

I called my rheumatologist's office immediately and ended up speaking with her nurse practitioner as the doctor doesn't work on Mondays. She thought I was having a reaction to the Plaquenil but I could tell she wanted me to head to an ER if it got worse. I am allergic to Benadryl so I couldn't just take one to help with the symptoms. I did tell her I had an appointment with my back pain doctor that after noon to talk about treatment for my newly diagnosed fibromyalgia and would mention it while I was there.

My pain doctor thought it was a reaction to the prednisone and not the Plaquenil but advised not taking either until I talked to my rheumatologist today. He also did not prescribe anything new for my fibromyalgia other than to increase my pain meds dose. I think he wants to get the RA under control so they can focus on one ailment before going on to the next ailment.

I felt pretty yucky yesterday afternoon and drank tons of water on the theory that I could wash it out of my system. I sat around for a while and then went to the gym which turned out to be a good thing as one of the trainers were there and gave me lots of advice for adapting my exercise program until the RA meds kick in.

Last night I went to bed early, and woke up every couple of hours. My face still feels weird but not as red and blotchy as yesterday. The true test will be when I get to work this morning on what today's verdict is from the mother's I work with.

I don't like these new meds. They are turning my world upside down. Who knew two little brown prescription bottles could change my life so much? I need to find something to work for the RA and then go on to the fibro. This will take months. Grr, grr, grr.

Nope, rule changing is not allowed

I'm sorry but rule changing is not allowed. We have been good patients and gone for yearly checkups and now they want to change the rules. This is not allowed. I will not allow it. I have been good and now they want ot change the rules and say I have been bad. Not acceptable.

A Danish study recently concluded that regular health checkups may not be doing any good and may in fact be doing harm. The claim is that regular checkups do not decrease deaths from cancer or heart disease and also cause more testing, false positive and negative tests, and emotional and financial stress for the patients.

Hmmm.... Well I'm not agreeing with that one anytime soon. My cancers were both found by medical professionals or tests so I'm glad I had regular check ups.

"The authors conclude that more research is needed to target better methods for identifying disease and to further explore the possible misleading and harmful effects of general health check-ups."

So what this is really telling me is that its not the health checkups that are the problem is that research is needed to come up with better ways to diagnose ailments. So all the researchers did is guarantee themselves their jobs. I'm still going to my regular check ups. No rule changing allowed with out basis.

Pink transparency needed

Consumers are becoming skeptical about the pinkification of products. There was a research study done - marketing not medical - titled "Consumers Question Intent and Impact of Breast Cancer Cause Marketing". It was done as part of Cone Research's Trend Tracker Series. 

Here are a few tidbits from it:

"Although three-quarters (74%) of Americans state they are more likely to purchase a breast cancer-related product or service during October over others, with price and quality being equal, they are becoming desensitized and increasingly skeptical.

• 77 percent of consumers think some companies support the breast cancer cause solely for corporate gain
• 68 percent say very few breast cancer cause promotions stand out to them, given the large number of programs in the marketplace
• 30 percent do not know whether their purchases actually benefit the cause"

And here's some more:

"2012 Breast Cancer Cause Marketing TrendsCone Communications’ has identified five leading trends from the breast cancer cause marketing efforts this October, including:

• Diversifying nonprofit partners: No longer do one or two large nonprofits rule the breast cancer space in October. As the breast cancer cause undergoes increased scrutiny, brands are turning to distinct partners for a unique approach and impact. Nonprofits shining through include: Breast Cancer Research Foundation and Young Survival Coalition, among other niche organizations.
• Putting a face on the issue: Whether featuring real-world cancer survivors as campaign models, as in Ford’s Warriors in Pink “Models of Courage,” or naming products after breast cancer victims, such as Caribou Coffee’s “Amy’s Blend,” brands are connecting with consumers through true-life stories, quite literally putting the faces of breast cancer, not the brand, front and center.
• Shifting from the grocery aisle to the beauty aisle: “Pink” once seemed centralized to food and beverage products, but today the fashion and beauty industry is taking center-stage. From cosmetics, to jewelry, to apparel, the bulk of this year’s campaigns are coming from the beauty world.
• Going beyond donations: Some brands, like Avon and Novartis, are providing more than just dollars toward the cause – they are creating opportunities for people affected by breast cancer to connect to critical emotional support through online communities and social networking.
• Curating collections: Companies such as Sephora and Macy’s are offering carefully selected “suites” of products in support of breast cancer, giving consumers a wider selection of items to purchase and maximizing opportunities to capture support.

So perhaps the average consumer is over pinkified as well.

 

Medical adventures continue

My life is a series of medical adventures. Somehow there is a giant gap in my calendar for the month of December (but don't tell anyone because I might jinx myself here).  But I am sure that will change before then.

Yesterday I went to one of my newer doctors for a conversation, not an exam, to discuss treatment options. I was given a choice of two courses of treatment. One was for a milder program which could take a few months to get going but has fewer long term side effects. The other choice would kick in sooner but had the potential for more side effects. I opted for option one with some steroids to start feeling better sooner.

That was a BAD choice. One of the potential side effects of the steroids is they 'may' cause sleeping problems. Yes they do. We went out last night (and saw Weird Al Yankovic - if you haven't seen him, I recommend him as it was a great show). We didn't get into bed until after 11. I was exhausted and couldn't sleep. I finally did sleep but badly. Guess what? I won't be taking the steroids again and will call my doctor on Monday.

Then I also go back to my back pain doctor for more conversations on Monday. I was supposed to wait another few weeks to see him but he actually had a cancellation for Monday. So that will be two doctor conversations on Monday.

My life really is a series of medical adventures. My calendar is dominated by doctor appointments.

Combating Cancer Cell Communication

One of the latest theories in cancer research is that its not about the cancer cells themselves but its about the environment in which they live - the tumor micro environment - where all these cells, proteins, and whatchamacallits hangout and communicate. How they communicate, how evil cancer cells trick good cells into doing bad things - like turning into cancer cells or creating blood supplies for tumors - and how those triggers could be altered to make them kill off the bad guys (cancer cells).

There is a lot of science involved but if you read this article slowly with a cup of coffee and then think about it, it makes a lot of sense and shows a lot of progress in what is going on in cancer research.

This kind of research, while complicated for the layperson to understand at first, has been going on for a while. I heard Dr Susan Love speak a couple of years ago and she was talking about it then. The tumor micro environment is the area of interest.

What is in the 'neighborhood' of the tumor that made regular cells turn into cancer cells? If you take the average kid and put them in a 'good' neighborhood chances are they will be a good kid. But if you take the average kid and put them in a 'bad' neighborhood, full of gangs and drugs, how long will they stay good? The chances are greater they will be pulled into the 'bad' forces in neighborhood. Is this true in the tumor's neighborhood? Are there bad influences there?

This area of research is very interesting to me and think that this is called progress.

The rise and fall of Lance

Lance Armstrong dealt with a pretty nasty cancer diagnosis and then turned it into something good by creating the Livestrong Foundation. However, it turns out he built his athletic career on steroids and his house of cards has collapsed. I had always admired his athletic feats but now feel like he lied to all of us.

Allow me to clarify. He won 7 Tour De France races. He won an Olympic medal. He was Mr. Clean. He told us for years that he never took performance enhancing drugs. And it turns out he lied to all of us.

This summer when he told the world he was going to stop fighting the charges, I think we started to become aware that there might be some truth to the claim. Now it has all come out that there was a secret system of performance enhancing drugs in the US cycling team. Lance has now stepped down from his world famous charity, he has lost his endorsements, will probably be stripped of his medals, and banned from all future competitions.





Earlier this year we watched another famous charity, the Komen Foundation (for the Cure) suffer a significant setback with the Planned Parenthood debacle. It would be a shame if another big charity, the Livestrong Foundation, also suffered as the result of the lies told by its founder.

It is also a shame that the dishonesty of one man will impact the lives of so many others. We have lost a hero who was a symbol of hope for many that you can return after cancer and exceed your previous expectations.

It might be time for Lance to step back from the limelight and let those who do not lie to shine. Honesty is always the best policy and its time he realized that.

Its none of their business

I always read the advice columns and sometimes snicker, sometimes agree, sometimes disagree. Today's Ask Amy column was about dealing with stupid ignorant people idiots when your spouse has a Stage IV cancer diagnosis.

The woman writing in was trying to cope with the clueless questions. It never ceases to amaze me on what people ask someone regarding their or another family member's cancer. Really? Did you need to ask if he was going to make it? Or if he has a will? Really?

When faced with a situation with someone with a precarious medical condition, before you open your mouth (and put your foot into it) stop and think about what you were going to say. Is it really appropriate? How would you respond if someone asked you that? Is it any of your business? What are you going to do with that little tidbit of information if they even give you an answer?

On the other hand, if you are the cancer patient or spouse of one, you may also be a bit overly sensitive to the questions. I know I was. I perfected the topic avoidance mode where basically I did not want to discuss it. And it was none of their business so I didn't feel I should discuss it. Ask me a nosy question and I'll tell you how my cat is doing. (He's fine, getting a little slower as he nears his 18th birthday.)

Cancer blood test

Here's some more promising news. A group in Kansas has developed a blood test which can detect breast and lung cancer in its early stages. This is cool.

Cancer caught in its earlier stages leads to better outcomes. Breast cancer is most often caught in stage II and lung cancer in stage III or IV. If a blood test can catch breast cancer in stage 0 or I and lung cancer in stage I or II, more people will live longer.  They are also testing it on pancreatic cancer.

This means high risk groups could get regular blood tests as screening for these cancers.

However, (of course there is a caveat) it is a relatively small study and it is not yet approved.  But it might mean moving to Kansas is a good idea.

Power of We - online support

Today is Blog Action Day 2012. The topic this year is the "Power of We". This reminds me of the commercial which shows the young girl singing the Star Spangled Banner and forgets the words. Then the audience starts singing with her and giving her the words. That is the Power of We.

We can do things together. What are some of the things that happen we people act together: Candidates get elected and laws get created. But also chat rooms and message boards allow us to join together and help each other.

Since being diagnosed with cancer a second time, I have learned about the support I can get by finding and bonding with people who are going through a similar diagnosis. Actually I first found out about message boards when I had a hysterectomy in 2005 and found hystersisters.org which provides great support and information for those having the surgery. I can't tell you how many people I have referred to that site since.

For breast cancer there are many message boards out there. One of the best ones is on breastcancer.org. The Komen website used to have some very active message boards but managed to lose many participants through poor handling on their end - including software updates, poor moderation, and lack of tech support.

For thyroid cancer,  I have found that the Thyroid Cancer Survivor's Association's message boards provide no end of support as well.

Now when I have a new ailment, I go to find the message boards that will help me.

These are all examples of how people coming together and sharing their knowledge and experiences helps others. This is what happens when people work together.

No blog post today

Today I have no thoughtful, thought provoking blog post. My mind will not focus which is a really bad thing.

 The big thing I need to do today is to finish my presentation which I am giving on Tuesday. 60-90 minutes on marketing plans, social media, and branding for non profits.

I have known about it since last spring. I started writing it this summer and  had big intentions of finishing it weeks ago but then I volunteered to take part in a panel which required tons of work on my part with some tight deadlines and three days out of town last week.

I was emailed on Thursday asking if my presentation could be ready at their office on Friday morning. That was a no. Now it is due tomorrow morning. It is about 80% done but I have not even done a read through yet to practice the oral part of my presentation.

On the good side it keeps me from thinking about my health which is in its usually precarious state.

Did I say I hate public speaking?

Staging thyroid cancer

What is one of the most important things in your cancer diagnosis? The staging. So what if they changed the staging protocol Hmmm... What would you think of that?

Its a conspiracy by the evil ''THEM" if they can't kill us off, they can just confuse us.

But back to the staging of thyroid cancer. It used to be if you were under age 45 and had papillary thyroid cancer (the most common kind), you were stage I unless you had mets and then you were stage II. If you were over 45, they used the TNM system with Stages I-IV. I was under 45 so I was stage I. If I had been over 45 I would have been Stage III.

Now some research has been done (because we always need more research) and they think being age 45 has no significance. They say there is no real drop off in survival rates from ages 45-64 or even 74.

But what they do not tell me is am I still stage I and they are just raising the age limit to 64. Or am I stage III because they put us all in the other category. I am confused.

This is only being done to confuse us. I am sure it is a conspiracy.

Metastatic cancer

Ahem, let's not forget those with metastatic cancer as Pinktober does. Tomorrow, October 13, is the designated pink metastatic cancer day. Why only one day?

Metastatic cancer of any kind is the 'BAD' kind. The kind that is whispered about. It doesn't get awareness, pinkification, walks, cheeriness, and all that.

Metastatic cancer is what really needs a cure. Its is the kind of cancer that has started to move around your body, affecting organs, bone, and even brain.

Right now with metastatic cancer you are in a holding pattern for life. Actually, for your life.

The cheeriness that comes along with pinkificiation is a slap in the face to women with stage IV breast cancer. What are the words that pinkification is supposed to identify - prevention, cure, survivorship, awareness? There is no cure for metastatic cancer. There is no survivorship involved - there is no way out. There is no awareness of metastatic cancer.

The S-Word

I promised to blog about this recently and forgot (because of chemobrain/fibrofog - now I have two things to blame) but I was reminded yesterday. I am at a cancer related meeting for a couple days in Virginia. It is full of women who have had breast cancer. They all used the S-word to describe themselves. I did not.

I really dislike the S-word. It is a label. Is it supposed to give someone a false sense of hope to hang on - that they too can survive their cancer diagnosis? Ha! It does nothing for me.

In my life, I have survived MANY doctor appointments. I have survived EIGHT surgeries. I have survived several 'interesting' plane flights.

Dictionary.com defines Survivor as:

1. a person or thing that survives
2. Law . the one of two or more designated persons, as joint tenants or others having a joint interest, who outlives the other or others.  
3. a person who continues to function or prosper in spite of opposition, hardship, or setbacks.

In no way does  it include the word cancer in pertaining to surviving.  If I use definition #3, function or prosper in spite of opposition, hardship or setbacks. Cancer might be considered a hardship - especially while in treatment. Opposition I think of in more of a societal or political context. Setbacks are job loss, or something like that. 

 

Cancer is a disease. So is the flu and the common cold. Do you get to be called a survivor if you recover from the flu? Then there is that stupid 'Survivor' TV show. Where is the correlation between having cancer and winning the tv show? 

Perhaps the whole term is slightly over used. If everyone is a survivor, no one is because we are all equal. So stop sticking it on people who have a cancer diagnosis. It doesn't make me feel all warm and perky inside because I have a label.

Positive progress

While we get mired down in a pinkified world for the month, I would like to take a moment to remind people of the progress against breast cancer so far this year. While the article was written regarding progress for African American women, I think it shows progress for all races:

1. 1. One treatment does not fit all. The study released this summer showing four separate classes of breast cancer, this shows more clearly why some races are affected differently than others.
2. "D" Stands For Decreased Risk - A study published in the journal Breast Cancer Research in April revealed African-American women with the highest levels of vitamin D also had a specific variation in the vitamin D receptor that cut their breast cancer risk in half, compared to women without it. 
3. Even Moderate Exercise Helps -In June, researchers at University of North Carolina in Chapel Hill found that women who exercise between 10 and 19 hours each week had a 30 percent lower risk of breast cancer. And there isn't a need to break a serious sweat either.  All levels of exercise intensity were linked with a decreased risk, the study authors said.
4. Regular Screening Are Key To Closing Racial Gaps - According to a study published in Breast Cancer Research in August, mammograms may be the key to closing the breast cancer gap between black and white women. When study participants received regular breast screening, "there was no difference in the rate of how many of them presented in the disease's later stages," researchers found.
5. Affordable Care Is Within Reach
   In a commemoration of Breast Cancer Awareness month Monday, President Obama and Health and Human Services Secretary Kathleen Sebelius credited the Affordable Care Act with bringing on "a new day for women's health and the fight against breast cancer."
   According to Sebelius, the healthcare law "means that women can get the potentially life-saving services they need to detect breast cancer before it spreads, without worrying how a copay would affect their family budget."
6. Existing Treatments Work
   A September study by Washington University researchers suggests basal-like breast tumors, one of the deadliest forms of the disease that has been shown to disproportionately affect younger women and those who are African-American, have a similar genetic makeup to ovarian tumors and could potentially be treated with the same drugs. 
7. Triple-Negative Treatments Are Closer
   The notoriously fatal triple-negative breast cancer (TNBC) may have met its match, according to researchers from Memorial Sloan-Kettering Cancer Center in New York who found that a form of the small pox virus can be used against TBNC.
   In the study released this week, researchers found that a certain form of smallpox vaccine was able to kill 90 percent of TBNC cells in four days of treatment. It also inhibited blood flow to the cancer stopping its spread.
   TNBC is found in about 15 out of every 100 cases and is more likely to occur in Hispanics and African Americans. 

Progress is progress. All races should be recognized in breast cancer research. Cancer is color blind so its progress needs to be as well.

Politics and healthcare

I always think politics and healthcare should be separate issues. I am also not blogging about political issues - I am in my quadrennial political avoidance mode. But I find this issue interesting. Would you change your presidential vote based on the issue of healthcare? According to CNN it is making people think in several swing states (they just use the term swing to confuse us all).

The big issue is that people who have always voted with the Republican party and enjoying the benefits of the healthcare reform act. They realize that if Romney wins they may lose these benefits.

I think this shows how divisive politics have become and how messed up our healthcare system  is. If Americans' politics are swayed by a single issue, our health care system must be in very bad shape.l

Do your doctor's talk about you?

Mine do. And I think its a good thing. When I was diagnosed with breast cancer the first thing they did was set up a day of appointments with the medical oncologist, radiation oncologist, surgeon and social worker where they all examined me and looked at my test results and then had a meeting and set up a treatment plan for me. I know there are other times where they have talked about me because they tell me. They email each other, they call each other. They confer. I like that. I think they talk about me and don't tell me.

Apparently the idea of coordinating care through collaboration is known to be cost saving and provide better patient care.I was reading this article on what they didn't tell us about health care reform at the debates and was particularly struck by topic 5 on how the Cleveland Clinic and the Mayo Clinic do things right:

"The candidates agreed during the debate that more needs to be done to control the cost of health care.
 
Obama praised the Cleveland Clinic as a model for new ways of controlling the cost of care. "They actually provide great care cheaper than average," he said. "And the reason they do is because they do some smart things."

One approach he highlighted was the collaborative approach of the clinic's doctors. Instead of each doctor ordering a different test, they meet and decide as a team how to approach the patient's problem. This prevents duplication. The team of doctors also provides preventive care...
 
One of the big differences between the Cleveland Clinic and other hospitals is that it and other multi-specialty clinics like the Mayo Clinic... employ their own doctors and can create these teams. In most traditional hospitals, doctors are independent private practitioners who are left to making their own choices.

Because Cleveland Clinic's doctors are paid fixed salaries, there is less incentive to do unnecessary tests or procedures compared to a doctor who works on a fee-for-service basis...

"Going to separate doctors with their own plans is expensive. These integrated group plans work well and the ongoing preventive care they provide -- working with doctors, nutritionists, nurses, nurse practitioners and the rest -- ultimately save on costs.""

Doctors who talk to each other share ideas and you end up with better treatment so what is there to lose? I am all for saving money and getting better care.

Is it time to rename my blog?

When I first started my blog it was called 'Caroline's Cancer Blog' for a very brief period. Then I settled down with 'Caroline's Breast Cancer Blog' because it was about coping with breast cancer. Now more than five years later, my breast cancer seems to be cooperating and not stressing me out (as much) as it did before.

But now I have all sorts of other medical stressors:

• Thyroid cancer mysteries. What the hell is going on in my neck? We keep repeating ultrasounds and get conflicting reports - bigger, smaller, same size.
• Back pain. Degenerating disks to start with and living on pain meds. 
• Fibromyalgia. This isn't fun. I need to go back to my back pain doctor.

And there's more that I can't think of right now because I have chemo brain (or maybe its fibro fog). I'm tired, in pain, and a touch cranky at times. Also:

• The spell check on my computer includes oncologist, endocrinologist, rheumatologist, and multiple medications. 
• I have a special directory on my cell phone of all my doctor's contact information and have their secretaries' names memorized.
• I see my oncologists less than I see some of my other doctors.
• I feel like I know the pharmacists at the local Walgreen's. 
• The nurses in the interventional pain center where they do injections recognize me.
• I can't fit all my prescriptions on my bedside table and keep them on the shelf in my closet.
• My primary care doctor is happy when she doesn't see me more than every few months.

So my life isn't just about breast cancer any more and my blog isn't just about breast cancer either. I have lots of opinions on lots of things. But I'm not sure I want to rename my blog because breast cancer was one of the first big things that have happened to me in the last few years. It still exists in my life - a cancer diagnosis never really 'slips your mind'. With two cancer diagnoses, when I don't stress about my other health issues I can always stress about them.

Doctor communication skills

Doctors need to focus on their bedside manner and also their communication skills. How hard is it to get hold of your doctor when you need to talk to them? This is important. I realize doctors are busy and they often call patients back after hours, long after dinner time.

A few weeks ago, I met with Dr P to discuss potential new ailments. I liked her and thought she was on the right track. I left all kinds of samples - urine, blood, xrays. Dr P said I should set up an appointment with her in 3 weeks that we could cancel it if everything came back negative. Then I would see her in six months and go from there. She said in the interim she would call me with test results.

A week after my appointment I called her office to find out about the 3 week follow up appointment. She is very busy so her secretary was trying to fit me in. Finally we left it that she would call me with the results and decide then if I needed to come in that soon. She was waiting to talk to the radiologist about my x-rays and hasn't been able to make contact with the radiologist.

Yesterday was yet another week so I called her office. Her secretary, who is very nice, said she would leave her another note. The secretary called back yesterday afternoon in the five minute interval when I was outside. She left a message that they were going to schedule an ultrasound and maybe an MRI as well even though the doctor hadn't made contact with the radiologist yet but with my test results that was the logical next step.

I said to myself 'what test results?' because I didn't have them yet. I called her back and said I had never gotten any test results. The secretary was surprised and gave me my results which are good and bad (meaning inconclusive) but the doctor still wants to talk to the bone radiologist...

The latest assurance I have is that they have scheduled an ultrasound for me in November which may or may not be cancelled and may or may not be followed up by an MRI. The doctor will call me probably Tuesday or Wednesday with results and a plan. I'm not holding my breath. She is a nice doctor and seemed very good but very hard to get on the phone!

A pink-free zone

As I blogged a few weeks ago, my blog is a pink free zone. But people do not  understand this and keep posting comments with links to pinkified things. While I realize some women really like the pinkification and feel loved by all of it, I do not.

First of all, there is no need to paint everything pink for one month for awareness of something that we are aware of. It often looks really stupid.

Second of all, most of the purchases are a total rip off. A tiny portion of the money you spend ends up at your cause. Send a check instead.

Third of all, breast cancer isn't a one month event. It takes over your life forever. Get real here.

So if you are such a fan of the pink stuff, go post links on someone else's blog who likes pink.

I have opinions. Tomorrow I'll blog about my opinion on the S-word.

The cost of cancer care

New drugs are developed which offer hope to many with late stage cancers. You can't really put a price on a human life and some how I think that drug manufacturers know this so they have no problems charging these outrageous prices. One was $120,000 for FOUR doses. Another is $10,000 per month. A third is $80,000/year.

If you are in a clinical trial you get the drugs free. So obviously they can afford to give them away. So if you are paying are you paying for the free ones that went to other people and for all the research costs? I wonder what these cost outside the US. There should be some kind of global pricing standard for medications.

And then for these drugs a success rate of 40-50% is considered good. It means the patients are still alive.

The whole hope is to keep patients alive but if they die bankrupt because of their medical bills they probably couldn't afford much in the last few weeks to enjoy life?

Something is broken here in many ways.

Protection from financial ruin

Why do we have any kind of insurance? For protection from financial ruin.


But the health insurance world doesn't quite work that way.

If a tree falls on your house, you assume your home owner's insurance would cover it. And it probably will except a relatively small deductible. If you get in a car accident, you assume your car insurance would cover it. And it probably will except for a relatively small deductible. If you get sick, you can assume you will end up paying a lot somehow because of what your health insurance won't cover.

That's the key difference. With any other kind of insurance, we assume we will be covered except for a relatively small proportion of the total amount which is why we carry the insurance. But we know our health insurance won't cover everything - they only cover the parts they want to unless you can get a special approval. What is wrong with this system? Everything. It is not designed to protect the patient from financial ruin.

I do not have a solution for this. It is a systemic problem which will require systemic change throughout the health care system.

So what do your doctors write about you?

Don't you ever wonder? You see your doctor, you ask your questions, get your answers, maybe some new recommendations and follow ups, and are on your merry way home. At some point after they see  you, your doctor writes down notes about your appointment. Do you ever wonder what they say about you?

I have had some infrequent opportunities to see my medical records. Partly by happenstance and partly by choice. Some of it is crystal clear and makes sense and some of it requires a decoder ring - that my surgeon provided at the time. I found it interesting.

There was a recent voluntary study (because we need more studies) where doctors shared their notes regularly with their patients who wanted them. They found better compliance with doctor orders among other things.

I know I can go to the hospital where I am treated and get a specific test result for no charge but if I want my full records it will basically cost me $100 for the first 100 pages and then $0.36/page after that. With my  medical file, I'm probably looking at around $1000 for the whole thing. That's just fine. They can stay there.

But I do have a friend who found out what her doctor wrote about her in her medical record - it was something along the lines of 'she will never lose weight because on weekends she drinks a lot and pigs out'. Seriously that's what the doctor wrote. That is now her former doctor. And she got a patient advocate to help in getting that removed from her permanent medical record.

I am sure my doctors write things like "paranoid, chronic complainer, pushy, bitchy, hypochondriac, full of mysterious ailments who uses more than her share of the medical system" in my medical file. Actually I don't think they write that.  I am sure its a very fat file hogging lots of disk space. But most of its probably in doctor speak and I didn't get the decoder ring.

Would a written note at the end of each appointment help my chemobrain/fibro fog memory remember what I am supposed to do and why help me? Probably but I don't need more paper in my life. And I don't want to have to wait until they doctor gets around to writing the notes either.

A new kind of doctor

Doctor's used to be trained to be the super achievers with legendary ego's. They were the super heroes who rushed in and saved people's lives all by themselves. People looked to them as the one to save them.

 

Then things changed and medical care expanded explosively. Its no longer a doctor who treats you but a team of specialists. All doctors became specialists. Even your primary care physician is a specialist. And they probably have a team of nurses, nurse practitioners, office staff and more working for them as do all the other doctors on your team.

Each specialist needs to talk to the other one's on your team. They need to use checklists to make sure that every question is asked, every i is dotted and every t is crossed. All these different perspectives mean more information is uncovered which can lead to better care and fewer mistakes.

As patients who shuffle between PCPs, medical oncologists, pain management, radiation oncologists, psychologists, and more, we need to make sure they are talking to each other and your needs are being met. So you as the patient needs to join the team. Its all about you so it has to include you.