Early Detection

We do regularly try to detect some cancers early through mammograms, colonoscopies, and PSA tests. I think most of us (meaning the general public) are comfortable with these tests as we age. But what if there was a genetic test available which you could have done regularly, every few years or whatever time frame, to test you for several different cancers before they had a chance to spread.

A new test, CancerSEEK, has been tested on more than 1000 patients and seems very hopeful.

"The CancerSEEK test looks for mutations in 16 genes that regularly arise in cancer and eight proteins that are often released.

It was trialled on 1,005 patients with cancers in the ovary, liver, stomach, pancreas, oesophagus, colon, lung or breast that had not yet spread to other tissues.

Overall, the test found 70% of the cancers."

But do we want it? I'm not sure. Yes it would be nice to be able to get to cancer sooner but is it worth the stress and costs? By costs, I do not mean financial (because the earlier a cancer is detected the less it costs to treat) but emotional on the patients.

I know women, who have never had breast cancer, who get very stressed by their annual mammogram and hold their breath until they get the all clear (which is sometimes in the form of a letter sent weeks later). This can be a very bad time for them.

With my medical history, do I really want another pile of stress on me? I'm not sure. Yes cancer sucks but sometimes we just don't want to know what is lying in wait for us. I am very much up in the air on this.

I think this is in the category of 'just because we can, doesn't mean we should'. Medical professionals may think this is the holy grail of cancer detection, but I kind of find it like being micromanaged on my health.

Another Potential Cure And A Stressor

I do not know if I should be elated or frustrated or what. Here is another potential miracle 'cure' for cancer. No, I am not reading the back pages of some magazine but from a very reputable source. I realize these 'breakthroughs' happen all the time but they do cause stress to us cancer people.

I am not sure how much other people realize the amount of stress the constant barrage of potential news telling us about potential cures - with the supposition that it should be positive and provide hope for us. However, there are two problems with this.

The first one is that not all potential 'cures' ever pan out into something real. Second the amount of time to find out if it will actually work - usually more than a decade.  For people diagnosed with late stage cancer often do not have that long to wait. Think about those facts for a moment.

Its like you are chasing a carrot on a stick that keeps on being pulled away from you. Always just out of reach. And flitting away at the last minute. Eternally unavailable. This is incredibly stressful.

I started following all the breast cancer stuff in 2007, a decade ago. Now I am finally seeing some progress from new breakthroughs which were announced then. That was a long time to wait. The only personal benefit I have seen so far is the announcement that I get to stay on Femara (an aromatase inhibitor for probably ten years total). I have seen some other advancements in radiation given differently and for shorter periods of time.

My attitude is to ignore all these advancements. I like the ideas behind  this advancement. But I can't waste time getting hopeful about this one.

"Esculin is a chemical that naturally occurs in the horse chestnut and is beneficial to circulatory health.

Researcher Dr Jan Grimm said: ‘The possibility of developing a topical application from the gel makes this innovation an attractive potential improvement to current techniques of cancer imaging.’"

That is a very short version of the breakthrough. Use the link above to read more. But for me its another carrot on a stick that is held constantly just past my fingertips. I will ignore it until in 20 years it turns into a real advancement to keep my stress level down.

I Need Playtime Too

A new study finds that pediatric cancer patients can avoid anxiety required anesthesia before radiation treatment... by... (wait for it) ...substituting playtime. This was the result of  work by a nurse at Johns Hopkins who found that there was no standard protocol other than to routinely give anesthesia to pediatric patients.

"What we found was that we had no standard; we were just basically signing kids up for anesthesia because they were anxious, because of the unknowns. We had complications happen under anesthesia and radiation. Another component was that it was taking up a lot of time. Now, with this program, we can avoid the risk and complications that come along with anesthesia as well as give back that precious time to the family. Kids get stressed staying in radiation too long."
There is a commercial that features a male pediatric oncology nurse giving a patient a shot (I think) and distracts her by singing a song with her. Why only for kids?

I could use playtime to avoid anesthesia before some stressful occasions. Why not?

Honestly every time I go for some stupid scan I don't want to sit in a chair and stress about what they may or may not find after two cancer diagnoses. Nor do I want to watch a TV program on something I don't care about. Nor do I want to pretend to read a book or articles on my tablet.

I would prefer to be playing games and having fun. Or out having coffee with a friend. Or anywhere but in a sterile waiting room watching my blood pressure go through the roof.

Let's start a movement to make hospital waiting rooms less sterile and more focused on patients needs. Where I go waiting rooms have padded chairs, wifi, TV, and usually exterior windows. I want more than that. I want snacks. I want volunteers wandering around talking to patients to help them relax. I want bright colors. (I really just want to be healthy and never have to go to the hospital but I also know that's not going to happen.)

Medical care has come a long way in terms of being more patient friendly but I think there is a long way to go to help reduce patient stress.

To Test or Not To Test

Once you are diagnosed with cancer, you have two key desires:

• Get the damn thing out of me! 
• Make Sure It Doesn't Come Back!

So you have surgery and they remove every thing they can. You might have to have more surgery to get those pesky clean margins. Then the give you nasty drugs for chemo and might zap you a few times as well with radiation as well. You might get some pills too. All sorts of fun and games thrown at you. 

The doctors swear to you that they have done everything possible to get the cancer out of  you.  So you go back to your oncologists and they tell you... see you in three months! You kind of freak out because you had been getting day to day care from your oncology team and they wanted to know about every fart and sniffle.

So you take a deep breath and wait three months. You go back to your oncologist and they tell you: 'your blood work looks fine, see you in another three months'. You take a really deep breath and ask shakily 'aren't there any more tests? How do you know there is no more cancer in me?' Your oncologist says 'there are no other tests that have been shown to be of any value in following your cancer.' 

This is a very real scenario. Although the patient may want more scans or tests to look for any teeny tiny cancer cooties, there may not be any else they can do to look for cancer for you. There is no evidence of your disease. They have no way of looking for anything now. 

They have to wait until you get some kind of symptom. This could be anything from a fever, swollen lymph nodes, or unusual pains. Then they can run more scans.

There are two reasons that doctors cannot provide more scans: 

1. Scans may not have the resolution to show anything smaller than say 7mm. So they have to wait until something is large enough for them to seem. Scans can include high doses of radiation or contrast agents. You really do not want to have many of them.
2. If you have bottomless pockets, you may be able to convince your doctor you will pay for them because your insurance may not cover scans unless you are symptomatic. 

An additional cost of scans is 'scanxiety'. This is the huge emotional toll on the patient at each scan. It is often better to stay off the emotional cancer roller coaster than to push your way back to the front of the line regularly.

I get it. I really do. I did recently get rid of a back doctor who didn't see a reason to rescan my back after 7 years of treatment even though I complained of different pains over the years. But I am very happy not to have any more cancer scans than the annual mammogram and annual neck check from my endocrinologist. I will speak up if I feel anything weird or think something is going on. (But my track record in noting bad things is awful - if I think there is something there isn't.)

I do not want to have any more scans. If there is a need to have more scans, that would freak me out just as much as a new cancer diagnosis. So test me less and I will be happy.I am happy to live in my cancer free la la land, than to be rediagnosed.

Pain Management

There is a lot of information on pain management. I even have a pain management doctor. But what constitutes pain management? I have several prescriptions for pain management - patches, pills, etc. I go to the gym and exercise to help control my pain. I do regular stretching and exercises for pain management.

As you can see, pain management is not just about medication and injections. I want more than that. But I am not sure my doctor understands that. If I go to my pain management doctor and tell him my pain is acting up, he always tells me the same things:

• Don't sit around, get up and move.
• Here's more medication.

He never says lets take more pictures. Or 'let's see if there is anything else new'. Never. He just says here's more meds. Either shots or pills. I think I want more.

I did blog about this in a long day of doctor appointments. I saw his nurse practitioner about 2.5 weeks ago. All she did is order x-rays and upped my pills. My complaint is that I have new back pain higher up in my back. She is thinking fibromyalgia. I am thinking new issues. The x-ray did show some degeneration higher up in my back. I looked up what the x-ray showed and it has nothing exciting to say.

So why does my back hurt there? Fibromyalgia doesn't cut it for me. I know what fibromyalgia feels like. Trust me, I do. And my doctor and his nurse practitioner do not as they do not have it.

For the record the new x-rays were compared to my x-rays taken in December, 2008. That is the last time there were pictures taken of my back. It took an MRI then to tell us the whole story. I think I want an MRI to prove to me that there is nothing new going on. I think if you are being treated for something, you should get scans done periodically to make sure nothing is new.

I understand the over testing/over-diagnosis issues. I get that part. But since I was diagnosed with back issues in January 2009, I have been diagnosed with fibromyalgia, rheumatoid arthritis, have had several falls, and a few million other ailments.  Its not like my back pain has lessened in the intervening years. It has increased. You can't keep just upping the meds without further examining what is going on.

When I made my last appointment with the NP, I was told that my doctor has said that if one of his patients sees another back pain doctor, they can't go back and see him again. That's a bit to proprietary for me. I should be able to see another doctor in the department if I can't see him. Also, when I saw  his NP that is the second time in all these years that I haven't seen him. One other time, I saw his physicians assistant and that was years ago. I think I'm done.

I go back and see the NP next week. If she doesn't send me for an MRI or other scans, I think I will find a new pain management doctor.

Another story that makes me mad

I read this story on the UK's Daily Mail and it makes me mad. Basically what happened is a young mother who was pregnant with a third child was diagnosed with breast cancer, that had metastasized to her lungs,  shortly before she died before she died. Then her family was told she also had Ewing's Sarcoma at her post mortem.

Some diagnosis and treatment delays can be put on the mother's reluctance to have treatment because she was pregnant or that she blamed some of her symptoms on her pregnancy. Some of the other delays probably can be blamed on doctor's not listening to her as much as they could.

I can completely understand a woman who is pregnant is reluctant to take prescriptions or have scans because of the baby's  health. But if you ignore symptoms you can end up in dire straits. The article states that she had shoulder pain more than six months before her death but didn't call the doctor because she wanted to spend more time with her daughters.

But also I think doctors need to tell their patient's that the symptom could be something else and needs to be checked. And the patient's concerns should not go by the wayside. A breast lump could be a milk duct while pregnant but if it lasts, it shouldn't be ignored and probably deserves a biopsy.

And as someone who has multiple ailments, I really take the time to listen to my body and try to figure out what an issue may be from. Is it new or is it related to something I know about? If my feet or hands hurt, I attribute it to RA.But pain across my back usually is fibromyalgia. A cough would be very unusual for me and would prompt me to be concerned.

How long does it last? If it lasts more than a week and doesn't seem to be getting better, then I definitely call my doctor.  That is my rule of thumb these days.

How painful is it? If causing me extreme pain and lasts for more than a few minutes, I usually will call. If its moderate pain, I try taking pain meds and see how it goes. But if it recurs or is new and lasts, I will call as well.

And you should never be too busy to take care if your health.

Staring out the window, procrastinating

As I sit here looking out the front window with a cat next to me and another two lurking around, I am gathering my thoughts about today. I have to go to the gym. I mean I really have to. I only went once this week so far and am traveling again next week and will miss another couple of days. I took my time getting up this morning because I really needed some sleep so I feel a bit better.

I am procrastinating on my day. I have things I want to do - the gym. I have things I need to do - my medical school (which is fascinating so far) and some volunteer work. I have things I must do - two doctor appointments. These are the cause of my procrastination. I have been in avoidance mode for them. Well actually for one of them because it is a test and if I don't have the test, I don't have to deal with the results which will probably be okay. But because there is that 'what if' thing going on in my brain I have stress.

That is the life in the medical ailment world, mostly the cancer world but with most big ailments. You see a doctor and they send you for a test. They don't like the results of the test so they refer you to another doctor who wants more tests 'to be sure'. Healthy people who haven't had many medical maladies don't usually get this far. They get a 'see you in a year for a follow up'. But because of my ailment history, I never get that I always get the test 'to be sure' and sometimes they are not so good.

So I am procrastinating. But because I am hungry and need to get going to the gym, I will start moving. The question will be if procrastination returns or I allow stress to rule the rest of my day.

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.

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.

Doing my research

Every so often, I get the good idea to get my medical reports and review them myself. I do this because people tell me I should have the copies of my test results. I try to do what I am told, am often curious, and too impatient to wait for the doctor to tell me at our next visit.

Then I take my little reports home with me and try to decipher them. Why is my RBC below normal? Answer it has never recovered since chemo and it is just under normal. Some of the other tests I do not really understand. I do some research and end up at medical articles where I need to go to med school to be able to decipher.

At some point, I always say to myself "Why am I doing this anyway?" Sometimes I convince myself I have some deadly disease or ailment that will kill me without immediate treatment. Other times I convince myself that I really am healthy with just a few bad test results.

But my point is that I do my research and feel I should more frequently get my test results and monitor them better. For example my last blood test included my C-Reactive protein measurement. This is what tells the level of my rheumatoid and whether I am experiencing a flare up or not.

Unfortunately I don't think I have enough of my blood test results. But need to dig through my files to see what they have been in the past so I can continue to track them. Then I can continue to do research and see if I am going to live or not.

Or I can just continue to self diagnose myself into every ailment known to man.

Some portions normal

Yesterday I had one of those oh-so-fun medical adventures at the hospital to follow up on some symptoms. I was chatting with the technician during the test and at the end, I asked her if I was normal (for the test results) and she said 'some of it was normal'. What that means is that the doctor has to go read it and figure out what parts of it were normal, what was due to previous known issues and what is a concern.

For once, can't I just be normal and have normal test results? I think I would need to be healthy for that.

But anyway the doctor should have the results today and if I don't hear from her by next week I can call and get them. But I can also just swing by the medical records department and pick up a copy of the results next week. (I am a big fan of the medical records department since I have learned that I can go there at any time and get test results or appointment notes whenever I want.)

[I'll provide more information on the actual test and results sometime later when I know more. And its nothing that significant.}

They made a bad rule

Back in 2012, all sorts of doctors were saying there are too many medical tests, standards, and treatments going on for all sorts of disease. There hundreds of recommendations from the official medical societies - Pediatrics, Oncology,o etc. At the time, I agreed with them for the most part. One of them in particular - stop over prescribing antibiotics.

But another one, I am not so sure. I consider it a bad rule. This rule is stop Imaging for Metastases in Early Stage Breast Cancers. They were not people who had walked the walk before they made that rule.

Allow me to use examples here. I have a friend who was found to have a relatively early stage II breast cancer except for the metastases to her liver which made her stage IV. She received the full gamut of chemo and had her liver ablated a couple of times. She is doing fine. But what if they hadn't found the liver metastases? She would be long gone by now.

The claim is over treatment and over imaging raise costs and are unnecessary for most early stage women. But if they can figure out whose cancer has spread and whose has not spread without imaging, then I am happy to accept the change. Until then, women who need the imaging should continue to get it.

Go make some other rules and stop being surprised that doctors who treating these concerned patients are looking out for their patients best interest.

Over treatment issues again

Electronic medical records do all kinds of helpful things. I remember going from doctor appointment to doctor appointment, lugging a six inch thick file. Now the doctors and nurses carry laptops or tablets and can look up information quicker to see when I last had a blood test or MRI.

Now the data is being mined to find out if Americans are getting their cholesterol blood tests, mammograms, and colonoscopies and all sorts of other helpful tests. But also to see if people are getting their tests too frequently.

And it turns out that some Americans are getting too many colonoscopies. Really? I mean who wants to have a camera 'there' too often? I am personally in the five year club for them. My husband was in the two year club but now is also in the five year club. But the average healthy person needs them every ten years, no more often.

If you are over fifty and never have had a colonoscopy, can I tell you two stories about people I know personally who waited too long? One is now stage IV colon cancer.

There are concerns with too frequent testing unless there is a compelling reason - higher costs and higher risks. Colonoscopies do come with risks as do any invasive peek inside you. And even if you do not pay out of pocket for a colonoscopies, there are costs incurred.

Medical over-treatment is a real problem. Antibiotics are given to treat viruses. This leads to antibiotic resistant germs. Choosing Wisely is an established project to help patients question tests or procedures that might actually be over treatment. Yes an ounce of prevention is worth a pound of cure. But too many ounces of prevention can quickly add up to the pound.

Its Monday

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

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

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

Non-helpful medical tests

A few weeks ago I had a sleep test and then an elbow MRI for separate issues. And the results? Nothing, nada, zip, nil. For both.

My PCP ordered the sleep test to see if I have apnea or other issues which may be interfering with my sleep. She said in addition to apnea, it can diagnose all sorts of problems. I did not sleep through the entire night of the sleep test even though I had taken an Ativan to ensure that.

And the results say 'no apnea' and nothing else. I asked my PCP about it and her suggestion was talk to behavioral (psychiatry) medicine about it and/or come see her when she has an opening. I am doing both.

Since I was headed to my meds therapist yesterday, I asked her about it. She said to try mild sleeping pills and take half a tablet when I can't sleep. And I can take up to two a night if needed. I don't remember what they are but will pick them up later today.

I also have an appointment to see my PCP in November. The problem with not sleeping and having RA and fibromyalgia, that cause fatigue, I need to get more sleep. And then I can't sleep. Which really sucks.

And my MRI, as I think I said previously, says it shows some bursitis but my doctor disagrees.

Aren't these helpful? Not really.

Sleeping, or not

I have problems sleeping these days. On a good night, I get to sleep for a solid 12 hours. I'm not kidding. I hope to do this once a week at least. Not this weekend. If I can, I save my big sleeping nights for the weekend because I don't have to get up in the morning.

Friday night I slept from about 10-330. Then I dozed off and on until 6 when I gave up and got up. Last night, I slept from about 930 to 4. Then I couldn't sleep so I played games on my phone (because my phone was nagging me to get caught up on words with friends) for about half and hour and then dozed for a while and finally got back to sleep for a bit. I am feeling a bit sleep deprived as a result.

I have spoken with my many doctors about this and my PCP said she wants me to have a sleep test to figure out if I have apnea or other issues.

Sleep tests can determine other problems as well. According to Dr. Wikipedia:

"Polysomnography is used to diagnose, or rule out, many types of sleep disorders including narcolepsy, idiopathic hypersomnia, periodic limb movement disorder (PLMD), REM behavior disorder, parasomnias, and sleep apnea. Although it is not directly useful in diagnosing circadian rhythm sleep disorders, it may be used to rule out other sleep disorders."

My PCP said that now they do sleep tests where they send you the machine at home and you can sleep in your own bed. However the hospital set me up for an overnight sleep test there. They claim the room is like a motel room. I hate sleeping in motel or hotel rooms by myself. I want my husband there to protect me from intruders and scary monsters or zombies. I also want the cat. I'm not sure I can bring either.

I got the schedule in the mail late Friday afternoon when it was too late to call. Then I got the information brochure in yesterday's mail telling me all kinds of useful information. Dress in comfortable clothes - not pajamas. It doesn't sound like you can wear pjs. They do not have shower facilities either.

I like this part where it says if you drink every night you should do so before coming - but you can't bring any alcohol and you must have a driver bring you if you are drinking. LOL. I find it funny that they specify this. Obviously some have driven drunk to the sleep test or brought in a bottle or two.

But I don't think I can get sleep there which is the whole point of the test. And what if I want to gt up and pee in the middle of the night?

First thing Monday I will call my insurance company and make sure they cover the test at home instead of there. Then I will call the hospital and see about having a home test if I can and ask all my other questions - can I bring my tablet to read a book on before sleeping? What about PJs? What about bathroom visits? Lots of things to know.

All I know is I need to sleep more. And this might help.

Lack of sleep causes both crabbiness and crankiness.

Test Dilemma

This week a new recommendation came out that people at high risk for lung cancer - particularly current or previous heavy smokers - should be screened for lung cancer with CT scans. This is another way that cancer can be detected at an earlier more treatable stage.

'Great,' we say. On the surface this seems like a good idea - catch a cancer early on and save more lives. Advanced testing options which have become relatively more accessible and affordable over the years have opened up testing options for millions.

But, and there is a big fat BUT here, does the additional screening add false positives which equal expense and stress for the patient? This is the same argument for women who have had breast cancer that they all should have MRIs in addition to mammograms each year to screen for recurrence.

All this wonderful new testing does great things. They find things that are something 'bad' and catch it early. They also find things that are big enough to see but too small to do anything about. And where does that leave the patient?

Medical advances are great but sometimes the advances exceed the capabilities that are required to diagnose and treat the findings.

This does not even touch on the issue of over testing and the emotional toll. Whether a positive or negative result, the testing experience is an emotional roller coaster ride for the patients. False positives and false negatives are realities in the results. Non test is 100% fallible so these do take place.

Me, personally, I am a big fan of the lets waiting and watching at this point. Unless I have symptoms I am not bounding off to see the doctor. I don't want more tests. I am happy this way.

A simple test

Right now the only way for a doctor to diagnose fibromyalgia in a patient is to press on a bunch of tender points. If more than so many of them are sore, the diagnosis is fibromyalgia. How easy. Not.

First of all when a patient shows up complaining of pain, other tests are done to rule out all sorts of other conditions. This can take time. As in months or years even.

It takes three to five years for a patient to be diagnosed with fibromyalgia. That is a really long time to live in pain. And often fibromyalgia is diagnosed with other conditions.

I was told I have fibro and have rheumatoid. We are trying to get the RA under control so we can then focus on treating the fibro pain. I was also told that it is often impossible to distinguish pain caused by RA vs. the pain caused by fibro.

I am in the state of still trying  to get the RA under control so we can talk fibro pain.

But now there is good news. There is a new diagnostic test to diagnose fibromyalgia. It is supposed to be 99% accurate. The problem is that it costs $744 and most insurance companies do not cover it. [That needs to change.]

And even more good news there are two more tests being developed that look at blood markers to diagnose fibro. These are still in development but represent lots of progress.

I will talk to my doctors about the new test and to my insurance company. Because the diagnosis criteria are relatively vague, in my mind, I think I would prefer a solid yes/no test. And if it could reduce the three to five year time frame to diagnose fibro for others, even better.

Basic screening tests take on a new meaning after cancer

Most people, by this I mean people who have never had cancer, go to the doctor for check ups and get sent for tests and don't think twice. They get nice negative results sent to them in the mail and they don't think twice about it.

Throw in a few cancer diagnoses, and any screening test takes an ominous turn. Of course any screening test will show that you are doomed. There is  no way you will ever get a clean result again. One test will lead to another which will lead to another which will lead to another and then surgery, chemo, and more and more and more.

Or so the little voices in your head tell you.

It is perfectly acceptable to have little voices in your head after cancer.

Its when they take over all rational thought that you really are screwed. This is why we have psychiatrists, psychologists, and anti-depressants to keep us sane.

However our screening tests still can drive us crazy.

Some clarification here

I got some feedback yesterday that my blog about the patient who didn't get a needed scan in time now has weeks to live. I said the patient needed to do more and be proactive in their health care. Some one said that we can't blame the patient because we depend on our doctors.

What I see of the issues are the following:

The woman complained of severe headaches and pain down her arm. Her doctor told her it was arthritis and treated it as such. She also complained several other times to nurses and was told she didn't need scans. If the diagnosis didn't resolve the problem, more testing should have been done to get to the root of the problem. This is where the patient could have stepped up.

Also it sounded like she was dealing with nurses often - did they know the extent of her medical history?

And if this doctor wasn't doing anything to help her, she could have gone to another doctor which it did not sound like she did. I mean she did say she had bowel surgery which meant she was going to a  gastrointestinal doctor, who wouldn't have been as concerned about something not relating to digestion. What about a neurologist or some one like that?

I don't know all the details here because I am not that patient but it would seem to me in the modern medical world that this patient slipped through the cracks and her complaints were ignored. This is where the patient should have spoken up more.

Yes we depend on our doctors to tell us what is wrong with us and treat us. We depend on them and rely on them. Some times we put our head down and just slog on through things. But need to stick our head up occasionally and see if we are happy with how we are feeling or is ti time to take another tack.