Screening Recommendations Based on Doctor Personal Experiences

Recently in JAMA, "...a research letter... explores how social interactions with friends, family and colleagues who have been diagnosed with breast cancer may affect a physician’s recommendations to patients."

What it found was that a doctor's personal experiences impact what they recommend for their patients. They did not necessarily follow the current guidelines. 

"Physicians familiar with someone with a poor prognosis who was not diagnosed via screening were much more likely to recommend routine checks for women between 40 and 44 years old and those over 75."

“Describing a woman whose breast cancer was not diagnosed by screening mammogram and who had a poor prognosis was associated with increased odds of recommending routine screening to patients within the designated younger and older age groups for which guidelines no longer support routine, universal screening,” Pollack et al. wrote." 

In my personal experience, my rheumatologist has been very hesitant to prescribe a biologic, such as Humira or Enbrel, for my rheumatoid arthritis. It is standard not to prescribe them to anyone who has been diagnosed with any cancer in the past five years because there is a TNF (Tumor Necrosing Factor) in them. 

Although I am more than ten years out from breast cancer and over 30 years out from thyroid cancer that translates to two cancer diagnoses before the age of 50. So she has been very hesitant. She even has conferred with my oncologist on this. Finally she has prescribed me Orencia which I have just started.

And the truth came out. At a recent appointment she told me that she had a patient who had had cancer and was over five years out from her diagnosis. My rheumatologist put her on a biologic for her RA and then she had a cancer recurrence. Who knows if the two were connected but that has had an impact on my rheumatologist. And she doesn't want to have this happen to any more of her patients.

“Our results suggest that helping clinicians reflect on how their experiences influence their current screening patterns may be an important approach to improve adherence to revised breast cancer screening guidelines.”

From a patient's point of view, I want impartial treatment for all my ailments. But there is so my crossover and overlap between them that discussions are often required. Due to my medical history, I have 'received' more screenings (a/k/a medical misadventures) than anyone else I know. I want the doctors to bend the guidelines to help me as best as possible.

Complications After Cancer Linger

My least favorite phrase is 'with your medical history we need to be sure'. I have been hearing it since my first cancer diagnosis. Even though my two cancers, thyroid and breast, are not what are considered the most horrible kinds, they both could recur and kill me anytime they want.

What it has meant over the year is that I have always been sent for more tests than anyone else. I need more blood tests and scans than anyone else. Now as I have developed more ailment such as RA, its harder to treat. One of the costs of my cancer treatment is osteopenia - in a family full of women with osteoporosis, all of a sudden I am much higher risk for it. And the list goes on.

All this makes me cranky and causes many more doctor appointments. My appointment on Tuesday was number 51 for the year. How many of them were for ailments or for side effects or post treatment ailments? I do not want to count. I just hate going to doctors at this point.

After cancer, your life isn't the same. You are going to have more complication related follow ups because of it. You do not get to walk away from cancer. It follows you everywhere, forever.

A Care Plan?

A long time ago, back when I was in a support group weekly, I was offered a care plan to complete with my doctor to make sure I kept track of my cancer treatment.... It was several pages that were copies of copies of copies and difficult to read. I got the point but decided to skip that.

There were several reasons (besides starting with the s-word) that I avoided it.

First of all, it only covered your cancer diagnosis. It didn't include other issues, like additional cancer diagnoses, and other ailments. It only covered one cancer treatment.

Second, I keep better records than my doctors. I started a spread sheet of my medical expenses for tax purposes to see if we could deduct them - and at least get credit for all the miles traveled. This has all the information I need to track my treatment and tests and appointments.

Now a new study (because we need new studies to keep researchers busy) says that they are surprised that very few breast cancer people have cancer care plans. This surprises them? I am surprised they are surprised.

They also expect the patient to sit down with their doctor to write up their plan. Does your doctor have time to sit down and fill out a several page form with you? I'm not sure mine does.

Personally, I am happy to keep track of my treatment. I usually go to the same hospital and once I give them my record number they can pull up all my ailments, medications, and allergies. I do take medical information with me when I travel in case something happened to me and I couldn't go to my regular hospital.

But seriously? I don't need a lot of paper work to drag around for one ailment.

I Don't Care if People Know About My Cancer History

I used to hide the fact that I had cancer. There are people who knew me for decades before I told them about my thyroid cancer diagnosis. When I was diagnosed with breast cancer I was a bit more open about it but I still kept it private to an extent.

I think I cared more about it when I was working full time. I didn't want any potential employer to know that I had cancer because, even though people are not supposed to discriminate they do. If you are looking at two potential employees who have the same credentials, the one with a history of cancer will probably not be selected because they might 'get sick again'. This is a reality all of us cancer people face regularly.

Now I don't work any more. I have told more people about my cancer history than not. I don't really care if people know. I'm am doing okay these days mentally so I am not stressed about it.

My cancer history, and other chronic medical crap, isn't going away anytime soon so I just need to be me. Hiding it doesn't benefit anyone. Talking about it and recognizing it as the part of my life, that it is, is much healthier as far as I am concerned.

The next emperor movie

I am not a huge movie fan. I am more of a Lifetime movie fan. If I can knit and watch it or be online and watch it I am fine. My husband and I probably get to the movies about once a year. But now I have a movie to watch.

A few years ago, I read most of "The Emperor of All Maladies: A Biography of Cancer" by Siddhartha Mukherjee. It was very interesting and covers how cancer was recognized and treated for centuries, showing the progression of advancements.

Yesterday I discovered that it will be a PBS six hour documentary, starting March 31.


I will get my Tivo set up so I can watch it.

I posted this on Facebook and someone commented that they were not sure they could watch it. I promise you if you watch the trailer above, you will see it is about progress and not about sadness.  You can probably get the book from your local library at this point as well.

A (Short but) Very Stressful Trip on the Cancer Rollercoaster

Yesterday I went to have my annual check up with endocrinologist. When I first saw her about five years ago, I was sent for a baseline thyroid ultrasound because I hadn't had either an ultrasound ever or an endocrinologist in a very long time (decades?). Big surprise there when they found a 'something' in the thyroid bed where the thyroid used to be but wasn't supposed to be anything.

We started following it with ultrasounds to see what it was. It was clearly in the evil category of 'big enough to see but too small to do anything about'. So six month and then, as its stability became established, annual ultrasounds were the result.

I ran into friends entering the hospital and then was a little late for the ultrasound but still had to wait a few minutes. I didn't have any great expectations of issues with the ultrasound. They finally called me and I went in for my turn. It met my expectations of no problems. I went on to my endocrinologist appointment to get the results and talk about my thyroid or lack of.

While in the waiting room, I ran into another friend (see what happens when you are a frequent patient - your social life happens at the hospital?) and we were chatting away. Then a doctor showed up in scrubs and asked the front desk attendant for me because of the innocuous reason that 'the doctor needed more pictures'.

My stress level grew. Immensely. No cancer patients ever want to hear that. They sent me back to the ultrasound waiting room for a few minutes and my stress level continued to grow. I was the only one in the waiting room - me and my mind which quickly goes down that evil little road to hell.

After a few minutes they called me in again. Another tech started another ultrasound and would only tell me that 'the doctor had requested more pictures'. After a few minutes of clicking away on her screen and squishing the side of my neck with the stupid wand thing, she left to check with the doctor to make sure they had enough pictures.

My stress level grew some more. I was in tears.

The attendant came back with the supervisor/instructor. They resumed the ultrasound and whispered away while clicking and and pointing at the screen. I was more stressed.

Finally they decided they had enough pictures and sent me and my kleenex back to endocrinology where I was greeted with 'there you are - we called you and you weren't here even though you had checked in'. I was told to take a seat, no they would take me, not sit, no go in. Eventually they said go in. The nurse said she had forgotten I was sent back over to ultrasound....

She stuck me in an exam room and attempted to take my blood pressure. I have no idea what it was but I bet it was a bit high. I stressed.

Then the doctor came in and apologized and said everything is fine. She told me to take a few deep breaths. My stress level started to go down. She told me she could not imagine what I went through as even she was very surprised to learn that I was sent back to ultrasound. She wasn't the doctor who wanted more images, it was the radiologist so she was surprised as well. My stress level went down so more.

What happened is that the evil little something they were following was not found in the first ultrasound. The tech measured something different which was a completely different size. They had to go back and find what the first tech had measured and then to decide that the evil something was no longer there. Great big sigh of relief. That was about 45 minutes of sheer hell on my part. Then I went to the gym to finish destressing.

I do not blame the techs as they were doing their job and I do not expect them to tell me what they see as the doctor needs to put it in context. I'm just glad I had the results of the ultrasound about 10 minutes after it ended.

This is a day in the life of a cancer patient. Every test no matter the expectations can quickly go to hell in a hand basket. If you haven't walked the walk, you have no idea what its like.

Then there's that survivor thing

I started this post in March of 2009. I keep a bunch of posts in draft format that because I change my mind, something else catches my attention, or I just forget (most common). They can sit for months or years and then the links I was going to write about go away or I change my mind and decide I am still inspired.

I know I have posted on this before. I do not consider myself a cancer survivor. I am someone living with two cancer diagnoses.  I am in a special little class of people (I like being called special. I like calling myself special. Its better than calling myself a survivor to me.) When asked, I do not say I am a cancer survivor. I say 'I've had cancer twice myself.' And only if I think its their business.

I think survivor was dreamed up by someone who isn't dealing with it. When you survive something you out last it. But if there is no cure, how do you survive it? Eventually something is going to do you in - maybe not cancer, maybe you end up on the Titanic or something... Mental note to self, do not take transatlantic trips during ice berg season.

My take is that I survived a bunch of doctor appointments.I am still surviving because I have an unending list of doctor appointments (which reminds me I need to fix some of them that were changed without my permission). That is my project for today, along with holiday cards, gift wrapping, cleaning, folding laundry, going to the gym and the grocery store. I will survive all that as well.

I used to get more aggravated by the use of the word 'survivor' than I am now. I know some people throw around the word survivor to describe themselves. I think I am okay with that. I think I get more irked by the organizations that start labelling people or the news broadcasters which start saying 'she's a SURVIVOR...' and 'as a SURVIVOR...'

I guess I am saying, people can label themselves but don't label others. Its the same if someone wants to call him/herself a fool, that is fine by me. But don't call someone else a fool - that's rude/mean, etc.

So no, do not call me a survivor. Call me someone special. It sounds better and makes me feel good.

Cancer and neighbors

When I was diagnosed with breast cancer I did not go out an tell my neighbors. I live in New England where people have more of a tendency to keep to themselves. I figured it wasn't really their business. We had only lived in the neighborhood for a couple of years and most of the neighbors were new.  Also, I really did not want a non-stop supply of casseroles that might be common in other parts of the country.

We live on a street with five houses on it. When we moved in, two of the houses were under construction and empty, an older man lived in the house across the street who stayed home by himself mostly but would come out to talk to the mail man. The house on the end was a couple dealing with a new baby themselves so we never saw them or got to know them.

Once the house next door was built, our new neighbor did figure it out. She asked me how I was doing, really. I was in chemo and was wandering around the garden feeling like crap and had that lovely pallor. I later found out her uncle had some kind of cancer so perhaps my look was familiar.

I would see my neighbor from across the street looking for a parking space in the hospital parking garage. I mentioned it to him once and we would compare misadventures in the new cancer center. He would tell me about hospitalizations and infusions gone bad and all sorts of things. He lived by himself and never asked for help.

The other newer house, the husband would talk to the older neighbor I saw at the hospital and we would stand outside and get caught up on the latest neighborhood news. His wife was often at work and not involved with the conversations. Then one day she saw me outside and came running up and asked if I was okay and was in remission. I could tell she was concerned and had clearly just found out I had cancer.

But I never told them all my stories. If I knew them better and they became friends I might tell them more but I am okay with it for now.

PS We do not have any snow yet. That's from a few years ago and I thought it would add some holiday spirit which I seem to be lacking this year.

Life in cancer land

Life in cancer land is never normal. Every little thingy becomes suspicious and requires further testing. It doesn't matter if it has any relation to previous ailments or is new or not but you always get the 'because of your history we need to be sure...' line.

I was talking with a friend about it this morning. There is a nasty level in the diagnostic process that is called 'big enough to see but too small to do anything about it'. It is almost as bad as the 'there are too many thingies to think about surgery' but not really.

Basically its a sh*thole that cancer people live in suspended animation for days, weeks, months or even years. Going from scan to scan and living with a constant level of scanxiety.

Finally the outcome becomes one of two options:

• It grew big enough to deal with it some how - surgery, radiation, etc.
• It was decided it is stable and will require future supervision but less frequently.

Personally I have a bunch of the second option - tested beyond belief and now we are hoping they are stable and checking less frequently. But they all started as something that was big enough to see but too small to do anything about which was  no fun.

And how does the cancer person adapt to this not so happy roller coaster? Well that is the question of the year. You can try to sleep at night and the little 'what if' gremlins start dancing around your head. Or you can ignore it but sometimes a sinking feeling shows up in the pit of your stomach.

That is the real cancer roller coaster or how life in cancer land really is. In case you were wondering.

Living a double life

Some people who know me think I have a bad back, tennis elbow, shoulder problems, bad knees, am mildly accident prone, and have lots of doctor appointments. Other people who know me know that I have had cancer, bad back, tennis elbow, lymphedema shoulder/arm, bad knees, am mildly accident prone, and have a lot of doctor appointments...

Am I leading a double life in that some people who know me don't know about the little bitty cancer issues? I really don't think so. I just think its none of their business. Do you know the entire medical history of everyone you know? I doubt it. Its none of your business either.

So why do I find myself telling people about my cancer issues? I wonder about this. But it often comes to my job working at a cancer support center, it sometimes becomes pertinent and I tell people about my cancer. But I do feel weird about it. Afterwards I often think 'why did I do that?'. But once its out there, you can unsay it. Maybe I don't care as much any more. Maybe its because I work where it is relevant.