Soy and breast cancer, again

I hate tofu (as you may know) and have been avoiding soy and soy products since my breast cancer diagnosis. There has been a lot of controversy on the subject of soy and breast cancer because of estrogen issues. Now I think I have found some better information.

Some new research was done at the University of Illinois - Champaign/Urbana that was released earlier this week.

"Researchers at the University of Illinois found that the compounds in minimally processed soy flour stimulate genes that suppress cancer, while purified soy isoflavones stimulate oncogenes that promote tumor growth."

Hence the confusion. Soy is good if not processed and helps prevent cancer but if it is processed it can increase cancer risk.

So if you really want you can eat tofu (without me) and soy flour but skip anything with processed soy.

The Poor Patients

Yes we are poor. Not because we have ailments but because we have no money. Chances are if we have ailments which require the expensive new drugs we probably are not working full time and carry the burden of large medical bills. So why do we get hit with these expensive drugs?

The new biologics to treat rheumatoid arthritis cost a patient an average of $2700/year. That's just their co-pay. The new breast cancer drugs have high costs as well. Then there is that new Hepatitis C drug which costs $1,000 per pill. I don't give a rat's ass about the fact that pharma companies have plans to help patients pay for these. Why don't they just charge less for them?

I read an article yesterday, and just wasted 30 minutes looking for it, on how pharma and biotech companies feel they can justify the costs of these medications. It was on a big-wig at some pharma company (and if I could find it again, I would cite it here) saying how big the advances were. In that the new MS drugs allow patients to keep working and being active for decades when previously they would be miserable and not able to move.

So? It was a breakthrough and it helps people be happier and feel better. We get that point. So why do you want to bankrupt us and our insurance companies? Get over it.

If you really want to make us happier and feel better, you really want to rethink your pricing strategies. Thank you.

[Update: Here is the article I couldn't find.]

I'm not going to that hospital, ever

I truly cannot believe this actually happened on some levels in this day and age. At a hospital in England, three patient's notes were mixed up. One woman was told she had breast cancer and she did not. She even had surgery to remove a tumor and lymph nodes.

First of all, how did the patient's notes get mixed up? Did someone drop a pile of papers and they were sorted out incorrectly? Or did someone enter patient's information under the wrong electronic chart? Don't they double check who you are when they update your chart, whether paper or electronic? I know when I am at the doctor's office, they ask me for my name and date of birth several times.

Second, didn't they do a double check on the patient before rushing to surgery? I know before I had surgery, I had a mammogram and an ultrasound. Then they sent me for an MRI before surgery. And everything was triple checked at each step. I can't believe she had surgery based on the results of one test.

I am basically dumbfounded that this happened. I feel so badly for this woman who dealt with the emotional and physical effects of a cancer diagnosis and didn't even have it.

That annual physical

There is a new movement out there that is trying to get rid of the annual physical because they claim it is a costly waste of time.  Really? And your thought process for this is?

I agree an annual physical can seem like a waste of time. But how many people would actually go to the doctor if they didn't think they were sick? How many of you know a few people (who must be healthy because) they never go to the doctor? I know people who are petrified of doctors, who have white coat syndrome that sends their blood pressure sky high at each visit.

But I also do know people who have ailments, including cancer, that would never have been caught if they hadn't gone for their annual physical. A friend's husband never went to the doctor and ended up in an ER with stage IV colon cancer. Yes there is a lesson there.

I am not a big fan of the annual physical but it means I have a PCP who oversees my care and is my go to doctor for issues. If you don't have an annual physical what do you do for the ailments that crop up, or your flu shot, etc? The ER? The walk in clinic at the local pharmacy?

Do yourself a favor and go for your annual physical.

Stress is evil

I have been blogging a lot about my stress filled life. Stress is bad. But stress can be a motivator to make you try harder to do something better. But mostly its just bad.

My non-medical brain says that if you are stressed, you are tense, making bad choices, not getting enough rest. And that all leads to the bad things like high blood pressure, hypertension, and all sorts of other things. Google 'does stress cause cancer' and see how many hits you get. Then Google something a long the lines of the bad effects of stress, there will be lots. And if you search on the good effects of stress, there will be very few.

I spent some time this morning reading about the benefits of yoga. I have no idea why but for some reason I ended up there. I do not do yoga because my doctor says I should not do any exercise that requires me to twist and hold poses - this includes yoga and Pilates.

I have decided I really need to do something about the stressors in my life. Life always does have its ups and downs but learning to cope with them better will help a lot. I am not going to take up meditation - because I don't have time - but I do things that help me that are meditation-like. Knitting for example (google that one and you will understand) and gardening are the two that come to mind. I do one thing and focus on its mindlessness will allow me to relax and decompress. I also need to sleep better so I am rested. And eat better, because you can always eat better. And relax more.

If I prepare myself better for the stress in life, I will not get as stressed. I had too much stress and wasn't getting enough rest and I couldn't handle everything. The last thing I need is any more ailments, stress induced or not. That would be more stress. And I really do not need any more ailments.

Dealing with stress, or not

So I have had a tiny bit of stress in my life recently. And I have been trying to do too much and ended up exhausted. There is a difference between fatigue and exhaustion and being tired. When I hit the wall, I have all three.

Everyone goes through stressful periods in my life. When I am stressed, I become an emotional eater and eat everything in sight. Then when faced with a boat load of stress, I stop eating because I am too stressed. That would be nice, I am too fat, but I really don't need any more stress at this point.

I am going to spend the next seven days avoiding stress. I will get some rest and not stress. I am at the point where I am running out of the oomph I need to keep going. My phone is on quiet time, where I won't get beeps at every CNN headline or FB  notifications or Twitter.

I think if I went to a doctor appointment at this point I might get a reprimand of some kind for being too stressed and doing bad things to my blood pressure and all that. I have a doctor appointment a week from Monday so I have one week to whip myself into shape.

Crap. I'm doomed.

One hell of a day

I finally got some sleep last night and felt better. Until I decided to be normal.

I got up and puttered around. Then I realized I could sit on my a$$ for a couple of hours before meeting a friend at 11. So I raced through the gym and had a fairly good workout for once. I left the gym and met my friend - actually my old boss form the late 1980s. We had lunch and left the diner. Then my day went downhill.

I realized halfway to my car that I didn't have my phone. My wonderful smart phone that has my whole life on it was missing.  I know I had my phone at lunch because I had to charge it in the restaurant, because the battery was at 4%, at the outlet under our table.

But I didn't have it. I went back to the restaurant and it wasn't there. We looked. The waitress, who I know from all the years we have been going there, helped me look. She even got the cook to get down on his hands and knees and look under the radiator. We gave up.

I left and thought maybe my friend picked up my phone by mistake, but I really didn't think she did. I returned my books at the library and drove home, when a little thought occurred to me. I can find my phone online. I logged in and it said the phone was still at the diner.

I called them and said I would come back with a flashlight so we could look under the radiators. We still couldn't find it. An older woman asked if we could find her bottle of pills that she had dropped at home.  We still couldn't find it.

I went back home and looked online again and it showed that it was still at the diner. I knew it wasn't in the diner. But I thought maybe I dropped it outside instead and there was this big van parked nearby - maybe it was underneath.

So I went back again (its only 1/4 mile from home) and parked across the street. I looked in the gutter, I tried to look under cars. Then I got the idea that maybe someone turned it into to a nearby store. Presto, it was in the third store I went to. It was very stressful.

Then I finally ran some errands and came home to relax. I do not need any more stress at all. I will relax. I will relax. I will relax. I will relax. I will relax. I will relax. I will relax. I will relax. I will relax. I will relax. I will relax. I will relax. I will relax. I will relax. I will relax. Some day.

Running ragged and then some

I've been running myself ragged and am not recharging. This week I have had several long days. Well not just that week, last week as well. Long emotionally and physically draining days. Repeated again and again. These are the days where I come home and am too tired to walk up the stairs. I haven't had the time to rest that I need but I am still moving, somewhat.

And then to top everything off, yesterday I came home physically and emotionally drained. I got out of the car and hear that really bad noise, 'ssssssssssssssssssssssss', as the air drained out of my rear tire. There is a piece of metal sticking out of it. I called AAA and the tire store. I got the spare put on the car. Instead of resting for an hour this morning, I get to rush out the door early and got see if I can get the tire repaired before going to work.

Did I sleep last night? Not really. Even though I took a pill, it took a long time to fall asleep and then I was up at 12 and at 3. Grrr....

I need a day off to rest. Not sure I can fit it in tomorrow but I will get some rest. Soon. Or I might fall asleep in public. Triple grr.

Lessons in dying

I started this post shortly after Elizabeth Edward's passing in December 2010. I keep going back to this post periodically and added and deleting thoughts. Each time I am usually prompted by another friend's advancing health issues.

Elizabeth Edward's death provided us new lessons in death, cancer, dignity and cancer treatment. She was educating to the end when she announced that her treatment would no longer be productive. She joins a list of famous women who have helped make cancer more understandable and less fearsome.

Real people get cancer as do famous people. But often we don't understand what they are going through unless we have been there ourselves. But even then, its can be difficult to understand as the treatments vary as do reactions to them. Some people tolerate them better than others. Not all lose their hair. Some find they react to the treatments in bad ways. I have friends who could not complete treatment because they were allergic to chemotherapy drugs or could not tolerate them for other reasons.

I have numerous friends who have succumbed to cancer since I started writing this post. Last weekend I got together with a breast cancer friend and she said that all her friends with cancer were gone, including the too young ones. There are feelings of guilt when our friends are gone. Why them when, before cancer, they had so much life left for them?

But as each of friends go, we learn from how they lived their life and die. We may not agree with them - why didn't you get your affairs in order earlier? We may admire them for what they accomplished. But we always still miss them.

Blood test for cancer?

[Did you take the survey yet on who reads blogs? There's still time. I'm sure you meant to go back and complete it later so here is a gentle reminder. You only have 9 more days. Go take the damn survey! http://fluidsurveys.com/s/blogimpact/]

So I am pleasantly surprised to learn about this new blood test that can detect cancer without a biopsy. They call it a liquid biopsy. Basically it means that they hope that cancer can be detected before its noticeable. This is not the same as the blood biopsy I blogged about the other day for breast cancer. This is something else that is new.

It has been tested on patients with lymphoma and one woman with lung cancer.

"The hope is that a blood draw — far less onerous than a traditional biopsy or a CT scan — will enable oncologists to quickly figure out whether a treatment is working and, if it is, to continue monitoring in case the cancer develops resistance. Failing treatments could be ended quickly, sparing patients side effects and allowing doctors to try alternatives."

This means that patients wont have to wait for months to see if their cancer treatment is working. They can be monitored through blood tests. And recurrences of lymphoma were detected three months before they were noticeable.

Of course more research is needed but things look good. Personally, while I am not a fan of too much blood work, I much prefer them to other tests or biopsies.

Challenging doctors

I think I challenge my doctors. I think they they I am going to fall apart on them or something and I am not that easy to treat. First of all, I am allergic to all the good drugs - penicillins, Benadryl and prednisone, plaquenil (treats RA), codeine, and a couple other things. I even had one doctor say to me that I must be really fun to treat.

If I have an allergic reaction, the standard course of treatment is Benadryl and steroids. Not me. They have to find another combination. And if I have an RA flare, the common treatment is steroids, usually prednisone. Not me again.

And if I need antibiotics, I am allergic to penicillin and related drugs and other antibiotics interact with some of my other medications. Its not uncommon for a doctor to question me on the reaction I have had to a medication. Or to ask me to alter some of my other medications while on antibiotics. I have sometimes even gotten a phone call from the pharmacy telling me they can't fill my new prescription because of interactions and they need to go back to the doctor for a new one.

Also, the list of medication allergies has ramped up significantly in the last few years. I am nervous about trying new medications because I seem to develop new allergies frequently. Who knew that the anti-inflammatory gel for my arthritic hands and feet would make my heart race?

Finally, without a thyroid, I can't take most medications that have warnings about thyroid disease. Between that and being allergic to Benadryl (which translates to some kinds of antihistamines), treating the common cold is a royal PITA.

The way I see it, they went to school for a really long time and I get to make them think a lot about how they can treat me. I can be a challenge to them so they can't just give me the basics and move on.

Its been sad

The last picture before we went to the vet.

On Thursday, we had to put our cat, Shere Khan, to sleep. He was my chemo buddy. I would sit on the couch and watch bad TV and he would snuggle. He was with me through lots of health issues in the last ten years. And he snuggled and cuddled through all of it.

My husband got him in the fall of 2001 shortly after he bought a condo. He went to a dinner party and mentioned that he was thinking about getting a cat. Presto, he went home with a cat. Shortly after, I met them both, three years later we got married and moved into a house together. Then my health started to fall apart and both of them stuck with me. I think he knew when I wasn't doing well and he supported me through it.

He was born in November 1994 which means he was over 20 when he died, old for a cat. We knew he was having health issues in the past few years and his health really went down hill in the past few months. It finally got to a point where he wasn't eating or drinking. When we brought him to the vet on Thursday, she told us he was starting to suffer from being dehydrated and it was time.

It has been incredibly difficult for me. More than I ever thought. As someone at the vet told us when we left in tears, time will heal. I have been a little depressed and been isolating myself as I mourn. I think I am turning the corner and will begin to feel better soon.

We will go on vacation soon and I hope that helps me recover more. I just need to be sad for a while.

Breast Cancer Blood Test

A new blood test has been developed which tells which women will develop breast cancer in the next 2-5 years with an 80% accuracy rate. The point is that mammograms show when breast cancer has already occurred so this would be a way of telling before it happened.  And to quote:

"...the method could create a paradigm shift in early diagnosis of breast cancer as well as other diseases."

That's all great and stuff but I have some questions.

• If you are told you will develop breast cancer in the next two to five years, what do you do? Get a mammogram every month until it shows up? Or start chemo ahead of time? I'm not sure.
• What about the 20% inaccuracy? It won't work for one in five women so there is no benefit
• And all of us who were told we were too young or had no family history or risk factors? And then got breast cancer anyway?

So this is progress but I have concerns. I would like to see the blood test refined and have it be more accurate. That's easy for me to say. I guess I think this is a step in the right direction but will only help 80% of people. And I feel that all of us who were exceptions will still be exceptions.

Dr Who?

Actually Dr Oz. What a name. he always makes me think of that other movie, mostly the man behind the curtain. I know Oprah made him famous but I was never very impressed with him. He's too skinny and there's something about his smile that makes me think about a snake-oil salesman.

But anyway, his colleagues at Columbia want to get rid of him - because  he is:

"a fake and a charlatan." Dr. Henry Miller of Stanford University went on to say that Columbia University must be "star-struck and like having on their faculty the best-known doctor in the country."

You can read about the scientific validity of what he does:

"Popular Science and The New Yorker have expressed criticism of Oz for giving "non-scientific" advice. These criticisms include questioning if he is "doing more harm than good".
 
The James Randi Educational Foundation has awarded Oz with their Pigasus Award, an award intended "to expose parapsychological, paranormal or psychic frauds that Randi has noted over the previous year." The award consists of a silver flying pig and refers to claiming something so doubtful that it will only happen "when pigs fly". Oz has been given this award on three separate occasions, more than any other recipient..."

The third time he received it for refusal to face reality for his continued promotion of "quack medical practices, paranormal belief, and pseudoscience".

My favorite part is that:

"Oz has countered that he is a proponent of alternative medicine and has stated that he makes great efforts to inform viewers that he neither sells nor endorses any supplements. He also created the organization "OzWatch" as a way for viewers to report scams. Ozwatch has received more than 35,000 complaints and has issued 600 cease and desist letters."

Really, 600 cease and desist letters? And:

A study published in the British Medical Journal on the effectiveness of Oz's medical advice found that 51 percent of his recommendations had no scientific backing and rationale, or in some cases contradicted scientific evidence.
And didn't he learn from the 2014 Senate hearings on some other quackery? So why is he on TV and teaching medicine?

More fibro fun

Fibromyalgia is my favorite 'fun' ailment. What makes it so fun? Its the combination of pain, insomnia, and fatigue. If you are tired, sleep is always the cure. But insomnia to go with it? And the pain. Its so much 'fun'!Take a look at how much fun it really is.



And if you can figure out a way to sleep with insomnia, please let me know. Or to get my brain to function again with its fibro fog?

Bathing Suit Shopping - or things cancer people should be exempt from

Yesterday after work, I went bathing suit shopping. What a bad idea. Why do I do this to myself? Cancer people should get awesome bathing suits without having to try them on and have their size fit them, not the one two sizes larger. They should also get exempt from lots of bad things in life - standing in line to start with.

Why are bathing suits sized so small? Who ever finds a bathing suit in their regular size that fits? Every one I know always gets a bathing suit a size or two larger than their normal size. I know you want them to fit you and not fall off when getting out of the water. But seriously? They never fit.

Anyway, I did go bathing suit shopping. Did I buy a bathing suit? No. I found one I really like but will have to go to another store to find it in my the larger size. They are called 'Magic suits' and are supposed to make you look like you lost ten pounds instantly.

What I did buy was a gift for a friend, a pair of shorts, three tops, a sweater, a replacement power cord for my phone and a wireless keyboard for my tablet. But no bathing suit. This means I have to go bathing suit shopping again. Damn.

Money worries during cancer and other illnesses

First there is the whammy of you have cancer, followed by many more whammies including hair loss, surgeries, chemotherapy, and then finally money. You cut back on work during treatment and the bills get bigger. And cancer bills aren't little. A chemo infusion or surgery might hit 5 digits for each one. Your insurance covers some of it but there is always your portion. And the bills keep coming.

Barbara, over at Let Life Happen blogged about an interesting option on how to fix cancer costs by charging by patient instead of by each treatment. Cure Magazine recently ran an article on medical bankruptcy fears during cancer. (And if you have cancer and don't read Cure Magazine, you are missing out big time.)

Cancer is stressful enough without having to worry about money as well. I personally think that if you get cancer, you deserve a financial fairy godmother to swoop in and take care of you during treatment. You shouldn't have to worry about bills, cleaning your house, doing laundry, taking the car to the garage, or standing in line anywhere. That would be nice - but really not likely.

So if we aren't going to get financial fairy godmothers, I think we need to start focusing on changing the medical system to help reduce the financial worries when diagnosed with any major illness. Doesn't it seem illogical that the sickest people get the biggest bills? They are most likely not to be able to work full time and earn the big bucks. They get all the expenses and are least able to pay.

I have a friend with MS who used to have a great career. Now she writes articles for a local paper and lives on social security. I used to work full time and now I struggle with 15 hours a week with RA and fibromyalgia. And I get giant medical bills. This year so far, I have already hit $2500 in copays. And its only April.

Let's fix the system and stop causing medical bankruptcies.

Spring has sprung

In the land of eternal winter, also know as metropolitan Boston where we got at least 9 feet of snow in six weeks, it looks like spring has finally sprung. I spent the weekend wearing shorts, t-shirt and sandals. I didn't get a sun burn but it was nice to be outside enjoying the sunshine. But winter is not completely gone, we still have  snow drifts. Yes they are getting smaller and fewer but they are still found wherever large piles of snow were dumped in a shady area.

Today is opening day at Fenway Park and the Boston Marathon is a week away. Snow drifts have never been an issue at either event, until this year. The snow is gone from Fenway but I am not so sure about the length of the marathon route.

This was our house March 26, 2015.

You can see we still had glaciers. The last glacier in the backyard finally melted last week. But there are now signs below of spring. Crocus and miniature hyacinths.

 And a single little iris hiding behind the lavender.

Then yesterday I got some pansies to add for some more color but have to wait a bit to plant them.

Catching up on sleep and rest

Today my goal is to catch up on sleep and rest. Friday I got stupid and got up early to go to the gym so I get my nails done after and not have to worry about messing up my nails by going to the gym later.

Yesterday our cat, who has been losing way too much weight, started waking me up about 330am because he was hungry. I actually got up at 545am and made him cat food (pureed canned salmon in the food processor) and fed him. (He's 20 years old and blind, deaf and can't smell) Then I gardened, did a bunch of other stuff, met my family for dinner, and stayed up until midnight. What was I thinking? It felt like a good idea at the time. My husband let me sleep late, which was only 8am and he got up and fed the cat.

Its 11am and I am still in bed. I got up and got the paper, coffee and ate some bacon my husband cooked. I am contemplating taking a shower in the near future but it may take me another couple of hours. Tonight I will go to bed early and not stay up until midnight.

My life is a fibromyalgia commercial.

Which consists of body pain, fatigue and insomnia. Combine all those and you can figure out why I need my sleep and rest. Staying up late and getting up to early are not good for me.  And catching up on sleep and rest takes a few days. But I have to go to work tomorrow morning. Damn.

Things that annoy me

I am sure you all can think of things that annoy you. We all have our pet peeves. But since its my blog, I get to tell you mine. You can feel free to leave a comment about yours if you want too.

I always get annoyed by people making assumptions. You know they assume you are going to die because you have cancer. Cancer is not fun but its not necessarily going to kill you. You could get hit by a bus anytime. Think of it that way for a bit. But I really hate it when people make assumptions about others relating to health. You have no idea what I am going through so stop assuming anything about me. You can ask me about it but don't assume I want to tell you my entire medical history. I will tell you what I feel like discussing but I am not going to have an in depth discussion about my health.

Then there are the idiotic thoughts about my health by, well, idiots. Those are the people that either:

1. Ignore the fact I have health issues and can't do what I used to do. Do you want to go hiking? We are going peak bagging this weekend. You should come with us.
2. Assume I will be cured. (See assumptions above.) I am not going to be cured. The best hope is no further health issues or disease progression. Stop telling me that because I had a back procedure, I must be fine now.
3. Tell me how I feel. You must not hurt much today since you didn't work yesterday. Um, pain and fatigue don't give me breaks because I took a day off. That day off was to recover from the days before.  (I think I am stuck on assumptions here).

Finally there are the people who insist on telling me what treatments I need. Did you go to medical school? No? Then shut up. I don't really care what your cousin's neighbor's dog walker's mother's hair stylist's friend had for treatment for a completely different disease twenty years ago.

I also get annoyed by things like people who stop their car in the middle of the road for no reason,  people who use their cell phones in restaurants or movie theaters, and at the cat who won't eat enough because he's old and can't smell his food, but you get the point.

See, I'm not perfect. I am just a normal person stuck inside a body that has lots of health crap.

Transitioning Doctors and Change

I have never been very good with change. Once I am comfortable with something, I don't want it to change. I enjoy being in a little rut here and there. I only like change if I want it to happen. For example, if I like a doctor, they are never allowed to leave or retire. If I don't like them, I will make the change myself. But I get concerned with too much change.

Right now I have a range of doctors. A couple of them are older and I like them so I have concerns that they could retire on me. I can tell how old they are roughly by looking them up on the hospital website and figuring out their age by looking at the year they finished medical school. (If medical school takes 3 years, that means they are about 25 and then I can do the math.)

I changed my primary care doctor a couple of years ago. I was fed up with her. She sent me for my annual mammogram, which was the bad one. I was very upset and left her a note at her office that I wanted to talk to her. I never heard from her. That was it. She was toast. I now have a new one but she is a bit young and her ego is present a bit too much.

So now I am contemplating changing again. I think I found a new potential doctor who has a sub-specialty in rheumatology. But then I wonder if I have a PCP with a sub-specialty rheumatology would I still need a rheumatologist as well? Or just the PCP? And I do like my rheumatologist. Crap. I'll have to figure that out.

And I just changed my therapist again. I liked my long term therapist and she retired (damn). So I got a new one who was a bit too young, talked about herself too much, and wasn't a match for me. I met the newer one yesterday. There is potential. She had some good advice for me. We'll see how that goes.

Changing doctors requires bringing them up to speed on me with the inevitable conversation about how many doctors I have and how many appointments there are lined up for me. And training them on all my ailments, medical history, and medication allergies.

How much change can I handle at one time? I waver on this one. My health isn't stellar and if I keep switching doctors I risk losing a sense of security. And the hospital just switched to a new computer system and I have had the sense the doctors are not doing as well with looking up my medical history before seeing me.

Maybe I'll wait a bit before changing my PCP and let everything else settle down. I also have an appointment scheduled with a new specialist next month. That's more change too.

That's a lot of money

There is a lot of talk about breast cancer over diagnosis and false positive mammograms. A new report looked at the costs involved. They are big numbers:

How much does each false positive  mammogram, or IDC or DCIS over diagnosis cost?

• Mammogram - $852
• IDC - $51,837
• DCIS - $12,369

The total is around $4 billion (with a b) each year. That is a lot of money! The breakdown is $2.8 billion resulting from false-positive mammograms and another $1.2 billion attributed to breast cancer overdiagnosis. But its not just the financial cost but the emotional toll on the patient.

"Apart from the financial cost of screening tests and treatment, false positives and overdiagnosis expose women to risks from additional medical procedures, not to mention psychological distress. It's not uncommon for mammograms to turn up some apparent abnormality that has to be resolved with more imaging tests or a biopsy.

"We're hoping that the financial cost of this problem will help cast into greater relief the human cost," said co-author Mandl. "The two messages together are powerful. The fact that this is not only a problem, but a very costly problem, we hope will accelerate the attempts to try to fix the screening practices."

But another expert defended those practices, and called the study one-sided.

"There was no attempt to balance the costs with the benefits," said Richard Wender, who heads prevention, detection and patient-support efforts at the American Cancer Society. "I strongly feel that every study that looks at the downsides of any screening test has to be balanced with the benefits.""

But the benefits? Are those lives saved by screenings? I would hope so. But that is so much money. Maybe we need better diagnostics as well as a cure.  And yesterday's post on mortality vs survivorship numbers - think of how skewed they could be as a result of these errors.

Cancer mortality vs survival rates

Overdiagnosis of cancer greatly impacts the survival rates. Overdiagnosis occurs when people are told they need treatment for a cancer which will never progress or isn't even cancer (but we really hope that it really is cancer). If your cancer is never going to kill you, you don't need the treatment. And the treatment can cause you harm.

"Overdiagnosis can have a powerful effect on survival rates, even if no one has their life prolonged.
To understand why, imagine a country in which 1,000 people are found to have Cancer X because of symptoms (they all have progressive cancer). Five years after diagnosis, 500 are alive — producing a five-year survival rate of 500/1000 or 50 percent — and 500 have died.

Now imagine the same country with lots of cancer screening and/or incidental cancer detection.  Perhaps 2,000 would be given a diagnosis of Cancer X, although 1,000 would actually have indolent forms and not be destined to die from their cancer.  Five-year survival will increase dramatically, to 75 percent, because the 1,000 people with indolent cancer appear in both parts of the fraction: 1,500/2,000.  But what has changed?  Some people have been unnecessarily told they have cancer (and may have experienced the harms of therapy), and the same number of people (500) still died from Cancer X."

Got it? Good. And this over diagnosis costs billions. And the stress is horrible on the people. And unnecessary cancer treatment, which is pretty harsh, can cause people long term health concerns.

So when people run around saying "all these advances from research your donations helped fund have helped reduce the survival rates from this cancer", don't accept them at face value. Real research is needed to help prevent overdiagnosis and mortality rates are what need the real review.

Stop taking pictures of me please!

I hate how I look in pictures so I am never enthused when someone starts snapping away. I have been known to make my mean face on occasion when included in a picture. I like taking pictures of things - my cat, garden, things I find in nature, etc. But I really do not like it when doctors want pictures of my insides!

In late 2008, I started having back pains. They took x-rays, tried PT and then an MRI and found all sorts of fun things going on with my spine. Five years later I asked my pain management doctor if there was any reason to do any more imaging and he said no because there was no reason to believe anything had changed. I can live with that.

But to my other doctors, do we have enough pictures yet? I would be happy if my visits to the Radiology Department could be limited. And there is proof that some hospitals take too many pictures.

Back in 1981 with my first cancer go-round, they took x-rays and thought there was a thingy (that's the technical term) in my lungs. So for the next 30 or so years, I had an annual chest x-ray to see if the thingy had changed. Then all of a sudden my doctors told me that it was no longer protocol to do annual chest x-rays in cases like me. (Thank you!)

The real concerns are in cases of breast and prostate cancer - how many images are needed? Do we really need that many? And the answer is no we don't. A study looked at how many X-ray, MR, PET, CT and bone scans for breast and prostate cancer. While it seems that use has gone down in recent years, there is some evidence they are still overused. Its a case of 'just because we can, doesn't mean we should'.

If you are diagnosed with breast cancer, should they do more scans to see if there is cancer anywhere else if you have no symptoms? Or how many should they do? How often should they follow up with more pictures?

Its not just time, expense, stress on the patients, but also does it really matter? If there is no reason, don't bother. Thanks. I'm good without more pictures.

Back to the real world

I feel very out of touch. Its not that I have been on vacation or anything. I have been home sick since Thursday March 26. That would be ten days ago. I finally felt decent yesterday but apparently still sound horrible. My right ear clogged as well. But I feel fine.

I have a lot to do at work today. Work that has to be done today as well because there is a meeting too. I will be busy. I hope to survive the day and then even make it to the gym - where I haven't been since Wednesday March 25.

In addition to staying home from work, I feel like I have been hibernating and not talking to anyone but my husband. Well I have been on the phone with some people but its not like seeing and talking to people, just being around other people.

I find many ailments isolating, not just colds and ear infections. But anytime you aren't feeling well, you feel like crawling into bed and staying there until you feel better. But if its an ailment that isn't going away anytime soon, your pajamas become your favorite outfit.

But now that I feel good (for a while at least) I have to get to work and enjoy not being isolated. And I don't even have a doctor appointment until Thursday.

Which of your doctors do you like?

The ones who bore you with a monotone? The ones who look like they want to run out of the room instead of talk to you longer? The ones who you have to pry your test results from? Or how about the ones who are nice and empathetic? Those are my favorites.

And once again, it took a study to figure that out. And now they are teaching doctors how to be empathetic (not sympathetic - which means feeling sorry for someone). Empathy is defined as:

1. the psychological identification with or vicarious experiencing of the feelings, thoughts, or attitudes of another. 
2. the imaginative ascribing to an object, as a natural object or work of art, feelings or attitudes present in oneself:

So using the first definition, think of your doctors and the ones you like. Doctors are not art - even though they may think they are.

For my doctors, I really like my rheumatologist (she is not allowed to retire). Not only is she nice and empathetic, she also spends 40 minutes with me at each visit so we get to talk. I also like my pain management doctor (another who can't retire). He is a nice man from Egypt and lets me talk to him about pain issues and listens to what I to say. Then he actually does things about it - injections, treatments, or prescription changes.  My medical oncologist is also very nice. She is great with answering questions and talking about cancer risks and managing fears.

I am on the fence with my primary care doctor. While I do like her and she is nice, she also seems to have an ego which shows up at every visit. Last year she said that she wasn't as concerned about my blood work as it was regularly being reviewed by my rheumatologist and endocrinologist. I thought 'what about cholesterol and the other blood levels that the rheumatologist and endocrinologist don't care about?' She may be replaced. It depends on how my annual physical goes. The empathy there is slipping.

My therapist for years was great. And then she retired. Not only had she had breast cancer she also had psoriatic arthritis. She could relate to me on a lot of levels. She suggested a replacement who has been axed. She talked more about her life than about how I was doing.

What about your doctors? Do they even know who you are? Maybe, maybe not. Maybe its time for some empathy and new ones.

Once again, please don't make me doubt my previous treatment

In 2010, a new study came out showing that women with breast cancer and one or two positive lymph nodes who did not have all axillary nodes removed, fared just as well as women who had them all removed.

When I had my breast cancer surgery, I had one tiny microscopic positive lymph node. Because of that, and my history of cancer, I had all my lymph nodes removed under my left arm and now  have lymphedema.

So this stupid survey in 2010 showed that the treatment I had was over treatment and not needed. Thank you.

However I got the standard treatment at the time so I shouldn't be cranky about this. But it does irk me. I mean seriously irk me. How-could-they-not-know-they-were-going-to-cause-me-life-long-issues-as-a-side-effect-of-an-unnecessary-surgery? THIS-DRIVES-ME-CRAZY!

Okay, deep breath. I think I got that out of me. For now.

But seriously, I know medical research is there to teach us new things that give us progress in treatment and advancement for future patients but I hate to find out what I had was not needed. It then makes me wonder how much else of my past treatments were not so good as well. They were all done with the best of intentions, at the time. Damn-it-all! (See not quite.)

Why read blogs anyway?

Back in the early 2000s, I worked for a larger non-profit in Boston. One of the staff attorneys spent a lot of time reading these things he called 'web logs' that were online. Now I had heard of them but never thought much of them. They were one of the first internet fads...

Then I started writing one, because it helped me cope. All bloggers ask themselves the question once in a while 'why the hell am I still blogging?' We all have our reasons. Some of us stop blogging or our blogs change topic completely but we keep writing. And some of us still blog about the same damn things because we have no lives I guess.

Now the question becomes why do readers read these blogs anyway? Especially if they contain all sorts of useless and senseless crap that only makes sense to me the writer? And even more especially if its about cancer, that lovely ailment?

Someone is finally taking the time to quantify and ask questions about this. As you can see in the little box to the right ==> where it says:  "Blog Impact Survey - til 4/30/15" in big bold letters. There is a link to a survey because another blogger, Rebecca Hogue, got smart. 

She is conducting a study on how breast cancer blogs are impacting people who read them. She put together a survey that takes about 5 minutes to complete. (She says 5 minutes but I took it myself and think its probably more like 3 minutes or if you read fast, maybe only 2 minutes.) She is most interested in the final question (and I'm not tell you what it is - you have to take the survey to find out). Here's the link if you can't move your mouse far enough over to the right . 

You don't have to complete it today as it is open until the end of the month. I will probably even remind you in the future because I know I can't remember anything for mroe than a nano-second anyway.

Can I just say "please" one more time? It would really be nice if we knew why people read our blogs and if they help anyone or if we are just senselessly babbling our way through our illnesses? 

Thank you. 

Hospital Gowns

[See new link to the right about a blog impact survey, open until 4/30/2015. Can you please take the survey? Thanks]
In 1980's, I was introduced to Dr Seymour Butz and his wardrobe. Do you know him and his closet? Those are the hospital gowns which do not close in the back. (Hint: sound out the good doctor's name and you will finally get it). After decades of being a patient, you learn about these things.

I have also heard of the really 'weird-to-me' paper gowns. I have never experienced one of those and really hope not to but I believe they are prevalent in many parts of the country. I mean, first of all, paper? Is that meant to cover the average size person, never mind the larger than average size? And disposable? Sure it saves on laundry but what about landfills or additional trash to incinerate?

The hospital I go to has provided for many years cloth gowns and robes in three sizes: one size fits most, huge, and super-gigundo. Actually I think the robes come in two sizes: one size fits most and super-gigundo. You put the gown on open in the back and the robe over it in open in the front. That doesn't sound complicated but if you sit in the radiology waiting room you won't believe how many people do not get it.

However the gowns and robes are fairly ugly. I don't mind. I am not making a fashion statement in the hospital. And the reason for the ugliness is simple: it cuts down on theft. (Who wants to steal a hospital gown? Sense of taste people!)

Now fashion designers are stepping in after the CEO of some big hospital had to actually wear a hospital gown. Seriously, fashion designers? I have many concerns, while I understand the requirement for basic decency, let's not get out of control.

My biggest concern is cost. Hospital gowns should not be a big expense. Let's not create a lot of design costs, licenseing fees, or anything else. Keep them cheap. And let's not forget about the theft issue, they need to stay ugly (but functional). I can completely understand the desire to keep one's butt (literally) covered but in the day and age of growing medical expenses, hospital gowns should not be one.

Those other second opinions

So you get diagnosed with any not-so-fun ailment because you had some tests and the radiologists or pathologists read your results and told your doctor what the diagnosis was. However, as a new study points out, not all test results are black and white.

This new study found that pathologists only agreed 75% of the time when reviewing breast biopsy results, until they met and discussed the results. The study recommends in the end that perhaps a second opinion is warranted if the results are not clear cut. Sometimes your doctor can be the one who gives the second opinion but other times, you may need a second pathologist to review the results.

I had never thought about this ever. I know I have had x-rays, biopsies, scans, etc where the doctor has added comments to what the radiologist or pathologist has said. When I was diagnosed with rheumatoid, my rheumatologist waited to get back to me on the results of my x-rays because she wanted a specific radiologist to review them because they were very good at detecting RA in x-rays.

But I had never thought of asking if I could have a second pathologist or radiologist look at my biopsy or scan results. It would never have occurred to me. But it completely makes sense. If something is subjective at all, maybe more than one person should look at it. A new point to ponder. And this study also says to ask your insurance company if this is covered... which sounds like some might cover the second opinion.